getting it right: end of life care in advanced kidney disease

Kidney Care

Getting it right End of life care in

advanced kidney disease

MARCH 2012

Better Kidney Care for All

Reader Page

Title Getting it right End of life care in advanced kidney disease

Authors NHS Kidney Care and project teams at shy North Bristol NHS Trust shy Greater Manchester Managed Kidney Care Network a

partnership between Central Manchester University Hospitals Foundation Trust and Salford Royal NHS Foundation Trust

shy The Advanced Renal Care (ARC) project led by the Department of Palliative Care Policy and Rehabilitation at Kingrsquos College London and working across the kidney units at Kingrsquos College Hospital NHS Foundation Trust and Guyrsquos and St Thomasrsquo NHS Foundation Trust

Publication Date March 2012

Target Audience Commissioners kidney care community patients and patient associations primary care palliative care staff working with kidney services hospice staff

Circulation List Renal Unit Directors Renal Network Leads Specialised Commissioners Clinical Commissioning Groups General practitioners National Kidney Federation National End of Life Care Programme National Council for Palliative Care Other organisations working with kidney patients approaching end of life

Descriptionpurpose This document brings together the experiences and learning from three project groups that have been working over the last two years to implement the framework for end of life care in advanced kidney disease It also addresses the data items that are associated with managing end of life care

Cross Ref na

Superseded Docs na

Action Required na

Timing na

Contact details adminkidneycarenhsuk

Contents

Foreword 04

Executive summary 05

Section 1 Introduction 08

Section 2 The framework 09

Section 3 Project groups 10

Section 4 Learning from the project groups 12

Section 5 Recommendations 26

Section 6 End of Life Care in Advanced Kidney Disease dataset 29

Acknowledgements 35

Abbreviations and Glossary 36

References 38

Appendices 40

Appendix 1 Patient pathway review developed by the Bristol project group 40

Appendix 2 Screening tool developed by London team 43

Appendix 3 Bristol Proton Screen 44

Appendix 4 NHS Kidney Carersquos Cause for Concern Survey 45

Appendix 5 My wishes Advance care planning document developed by 54

Salford Royal NHS Foundation Trust Appendix 6 Thinking Ahead An advance care planning document developed by 56

Central Manchester University Hospitals NHS Foundation Trust Appendix 7 Checklist developed by Greater Manchester Project Group 60

Appendix 8 Resources included in London toolkit 61

Appendix 9 Training Needs Analysis Questionnaire from the Greater Manchester 62

Kidney Network End of Life Project Appendix 10 Renal Sage and Thyme communication course evaluation 69

Appendix 11 The Prepared Acronym 72

Appendix 12 Items adopted in each of the NHS Kidney Care pilot sites 73

Appendix 13 Items adopted in each unit for the End of Life Care in Advanced 74

Kidney Disease dataset

CONTENTS

03

Foreword

In the NHS we care for people from the cradle to the grave The care and compassion offered to people at the end of their life is just as important as that provided to help them stay healthy

In kidney care we are well placed to identify patients who may be nearing the end of life and to work with them their families and carers and other health and care services to help them live as full a life as possible and to die with dignity in a setting of their own choice

Kidney services have led the way in improving end of life care The National Service Framework for Renal Services was the first to talk about death and dying We built on this and the momentum around the national pathway for end of life care to develop a specific end of life care framework for patients with advanced kidney disease It explores the kidneyshyspecific issues of end of life care focusing on patients opting for conservative kidney management and those ldquodeteriorating despiterdquo dialysis supporting services to offer high quality end of life care

This report describes the experience of three projects groups ndash in Bristol Greater Manchester and at Kingrsquos Health Partners in London ndash who have been working with NHS Kidney Care to implement the framework It describes their approaches the challenges they have overcome and the lessons that their experience can teach others seeking to improve end of life care for patients

It shows how a systematic approach to the identification of patients sensitive discussions with patients and carers a structured process for recording patientrsquos wishes key link workers to coshyordinate care and improved training and education for staff can all make a real difference to the care we provide our patients at the end of life

I would like to thank colleagues in the project groups and the End of Life Care in Advanced Kidney Disease board for their tremendous efforts their achievements and the enormous contribution they have made to improving end of life care I hope that colleagues across the NHS will find the experiences and learning outlined in this report valuable in informing their own efforts to improve this vital aspect of care for kidney patients

Beverley Matthews

Director

NHS Kidney Care

04

Executive Summary

The National Service Framework for Renal Services published in 2004 and 2005 was the first to tackle the issues of death and dying It includes an aim to support those with established kidney disease to live as full a life as possible and to die with dignity in a setting of their own choice Further work on the importance of end of life care led to the publication of the National End of Life Care Strategy in 2008 which set out a National End of Life Care Clinical Pathway and in 2011 an end of life care quality standard from NICE

In 2008 a Kidney Supportive and End of Life Care Steering Group was established to develop a framework to specifically meet the needs of those with advanced kidney disease and in 2009 End of Life Care in Advanced Kidney Disease A Framework for Implementation was published

The overarching aim of the framework is to help people with advanced kidney disease make informed choices about their needs for supportive and end of life care Key elements of the framework are timely recognition that the end of life phase is approaching sensitive communication with and involvement of patients and carers coshyordinated multishyprofessional working across boundaries clinical leadership local action planning and the appropriate training and education for healthcare staff

NHS Kidney Care supported project groups in Bristol Greater Manchester and at Kingrsquos Health Partners in London to implement the framework and evaluate their approaches so that their learning and experiences could be shared more widely This report brings together the key findings of the project groups focusing in particular on

Achieving best practice

bull How to identify patients approaching end of life

bull Creating and using a register of these patients within kidney units to facilitate delivery of palliative and supportive care

bull The use of advance care planning to provide end of life care sensitive to an individualrsquos requirements

bull Coshyordination of care across organisational boundaries

bull Support for families and carers through the end of life period and beyond

Workforce considerations

bull Identifying key staff to champion and pioneer this work

bull Understanding the training needs of staff in kidney units and developing effective ways to meet these training requirements

The report concludes with a number of recommendations based on the work of the project groups which will be useful for other renal units and networks seeking to offer the very best end of life care

EXEC

UTIVE SU

MMARY

05

Recommendations

Achieving Best Practice

i How to identify patients approaching end of life Establish a systematic unit wide approach to identification of patients

A systematic approach can be taken to identify patients who may be approaching end of life This allows staff to move across work areas and still be familiar with the process A number of examples are described in this report and kidney units developing registers in partnership with primary care colleagues could adopt part or all of any of those that have been shown to be useful in the project groups

Ensure that all patient groups are included

All kidney patients may benefit from end of life care support and consideration should be given to spreading the use of patient identification for the register beyond those on conservative care

ii Creating and using a register Recognise that a change in culture may be required as well as organisational changes

A cultural change will take time to mature within a unit and all the project groups emphasised the need for dedicated staff to lead and demonstrate new approaches to supportive and palliative care

Consider the name of your register

Consider the name to be given to a register and what that might convey to staff and patients using it All the project groups have chosen to move away from ldquocause for concernrdquo

Use IT systems that will enable the best access for all staff

If possible adapt local IT systems to hold the register and keep abreast of opportunities within the healthcare community for sharing electronic records more widely A number of pilots are taking place across the country within healthcare communities that will enable sharing of patient information including preferences for end of life

Consider who will agree registration with the patient and when

For one of the groups registration was dependent on a discussion with the patient at an outshypatient appointment which led to delay in registration if appointments were several months away and subsequently to some patients dying before reaching the registration discussion Consideration should be given how best to fit with local processes to ensure that registration is discussed with patients in a timely manner in a suitable location with an appropriate staff member

iii Advance Care Planning Offer advance care planning to all dialysis patients

Patients were found to appreciate the opportunity to take part in advance care planning (ACP) even if they did not immediately wish to take it up A number of documents are available for use in introducing ACP for patients that can be adapted to suit local circumstances and facilities The use of appropriate documentation helps to give staff confidence in approaching patients Recording patient preferences for place of care and death allows policies and procedures to be established that will help this be achieved

06

Take account of the time that advance care planning will require

The groups found that ACP could take more than one discussion with a patient and that for some patients the discussion may take some time and may require revisiting at a future date If possible involve families and carers in these discussions

iv Coordination of care Consider methods of raising awareness and establishing links with local organisations involved with end of life care

A number of approaches (stakeholder events staff exchanges attending meetings) were taken by the groups to build on their relationships with other organisations working with kidney patients This helped to ensure communications remained open and effective to ensure patients received the services they required

Consider creation of a resource with details of local organisations involved with end of life care

The groups found that an easily accessed resource with details of contact information key workers and guidance regarding end of life care for kidney patients was very useful to kidney unit staff

v Support for families and carers through the end of life period and beyond Consider methods to support bereaved families carers and staff

A number of approaches to bereavement support were taken by the groups including letters and cards annual services and for staff training sessions from pastoral colleagues


i Identifying key staff to champion the work Establish keylink workers

Identification of link staff who may receive additional training and education about end of life care processes within a unit can provide support for all staff A key worker allocated to individual patients may also act as a coshyordinator with other services

ii Training needs of kidney unit staff Resource training for staff

All groups found training and education were crucial to the success of their projects to give staff the knowledge and confidence to raise issues with patients A number of approaches were adopted including taking advantage of training already within the trust courses run by local palliativehospice staff and national initiatives for training in end of life care The groups found that where possible providing kidneyshyspecific training was the most successful

Training should be designed and delivered at different levels according to the previous training and experiences of the renal professionals and the extent they will be responsible for end of life care Kidneyshyspecific advanced communication skills training has been developed and should become more widely available

The consistent recording and sharing of care planning information has been identified as one of the main ways to enable improved end of life care for patients This report also includes a review of the learning from the project groups and the National End of Life Care Programme on establishing a core dataset

EXEC

UTIVE SU

MMARY

07

1 Introduction

The National Service Framework (NSF) for Renal Services1 was the first to tackle the issues of death and dying Part two includes an aim to support those with established kidney disease to live as full a life as possible and to die with dignity in a setting of their own choice The quality requirement states that people with established kidney failure should

ldquohellip receive timely evaluation of their prognosis information about the choices available to them and for those near the end of life a jointly agreed palliative care plan built around their individual needs and preferencesrdquo

The NSF was followed by the publication of reports describing proposals for delivery of services and the strategic vision for the NHS23 that further emphasised the importance of end of life care culminating in the publication of the National End of Life Care Strategy4 The strategy described the need for high quality care for all adults regardless of age condition diagnosis or place of care and set down the National End of Life Care Clinical Pathway (see below) In November 2011 NICE published a quality standard for end of life care which sets out 16 statements that describe aspirational but achievable care for adult patients who are approaching the end of their life

To build on the NSF and the national strategy to develop them specifically for kidney patients a workshop was organised by NHS Kidney Care in April 2008 to identify key themes These were then taken forward to a Kidney Supportive and End of Life Care Steering Group to identify the characteristics which a kidney specific pathway would require The culmination of the steering grouprsquos work was the publication in 2009 of End of Life Care in Advanced Kidney Disease A Framework for Implementation5 ndash referred to as the framework in this document

End of Life Care Pathway

Step 1 Step 2 Step 3 Step 4 Step 5 Step 6

Discussions as of life approaches

Assessment care planning and review

Co-ordination of care Delivery of high quality services

Care in the last days of life

Care after death

bull Open honest communication

bull Identifying triggers for discussion

bull Agreed care plan and regular review of

needs and preferences bull Assessing needs of carers

bull Strategic coordination bull Coordination of

individual patient care bull Rapid response

services

bull High quality care provision in all

settings bull Hospitals community care homes extra care

housing hospices community hospitals

prisons secure hospitals and hostels

bull Ambulance services

bull Identification of the dying phase

bull Review of needs and preferences for place

of death bull Support for both patient and carer bull Recognition of wishes regarding resuscitation and

organ donation

bull Recognition that end of life care does not

stop at the point of death

bull Timely verification and certification of

death or referal to coroner bull Care and support of carer and family

including emotional and practical

bereavement support

Support for carers and families

Information for patients and carers

Spiritual care services

08

2 The Framework

The framework describes the six steps of the national pathway in terms of caring for kidney patients approaching end of life

i To ensure that all those who need it receive appropriate care they must first be identified A cause for concern register is recommended for all renal centres this may ultimately be linked with GP palliative care registers to ensure seamless care across healthcare sectors

ii People vary in the level of involvement that they wish to take in the planning of their care at the end of life consequently planning needs to be sensitive to individual requirements This plan should be available to all staff who may be involved with caring for the patient during the endshyofshylife phase

iii Delivery of care should be coshyordinated across the healthcare services involved Identification of key staff in the organisations involved and appropriate use of IT can help to ensure that responsibilities are carried through and information is available at the point of care

iv Kidney centres need to provide highshyquality services to those approaching the end of life whether through choosing conservative care or with advanced kidney disease being treated within the kidney centre Appointment of clinical leads (medical and nursing) will provide a focus for the kidney unit and for establishing working relationships with other care providers

v The emphasis of care in the last days of life should reflect the preferences indicated by patients through the care planning process and should be facilitated through a local action plan

vi Support for families and carers underpins the pathway it need not cease at death

In addition training needs for the staff involved should be identified and professional development addressed

Following publication of the framework a board was established under the chairmanship of the Chair of NHS Luton The remit of the board was to coshyordinate the development and progress of a number of end of life care work streams enabling consistent implementation of the NSF for renal services

One of the work streams facilitated and overseen by the board and led by NHS Kidney Care supports the introduction of the framework within kidney centres working in partnership with primary and palliative care organisations

THE FRAMEW

ORK

09

3 Project groups

An initial project to implement the framework supported by NHS Kidney Care was established in Bristol in May 2009 led by a palliative care physician working closely with the Richard Bright Renal Unit (referred to in this report as rdquoBristolrdquo) NHS Kidney Care then sent out a call for expressions of interest for additional project groups to implement the framework and demonstrate

bull The development of a supportive and palliative care (cause for concern) register in the renal unit shared with primary care

bull An increase in the number of conservativelyshymanaged patients with assessment and advance care planning in place

bull A proportional increase in the number of renal staff educated and trained in advance care planning and the assessment skills to meet the supportive and palliative care needs of patients and their relativescarers

bull An increase in the number of patients with an end of life plan bull A percentage increase in the number of patients achieving their preferred place of care bull A greater level of satisfaction for patients and carers

A number of proposals were submitted from which two additional project groups from kidney units were selected and the Bristol group continued with their project The additional projects were

bull The Greater Manchester Managed Kidney Care Network a partnership between Central Manchester University Hospitals Foundation Trust and Salford Royal NHS Foundation Trust (referred to in this report as ldquoGreater Manchesterrdquo)

bull The Advanced Renal Care (ARC) project led by the Department of Palliative Care Policy and Rehabilitation at Kingrsquos College London and working across the kidney units at Kingrsquos College Hospital NHS Foundation Trust and Guyrsquos and St Thomasrsquo NHS Foundation Trust (referred to in this report as ldquoKingrsquos Health Partnersrdquo)

Funding for 18 months work was awarded to the project groups

To support the groups in carrying out their projects NHS Kidney Care established a learning network where the project groups could discuss issues of mutual interest raise problems share learning and experience An online forum was set up for project group and board members to enable sharing documents and discussion outside of meetings

The first task for the project groups was to appoint staff to take their work forward and the next sections of this report represent the work and consequential learning and experience from these facilitators the kidney units and other healthcare staff they worked with

At the time that the projects were being carried out the National End of Life Care Programme (NEoLCP) was developing a number of core data items that they could recommend for end of life care registers and which would become a national information standard NHS Kidney Care has used this work and that of the pilots to consider how kidney registers can best fit with national developments The findings from this work are described in Section 6

10

Implementing the framework The project groups have taken different approaches to implementing the framework reflecting the diversity of practice facilities and cultures within kidney units However they all tackled a number of key issues




bull The use of advance care planning to provide end of life care sensitive to individualrsquos requirements




Identifying key staff to champion and pioneer this work

Understanding the training needs of staff in kidney units and developing effective ways to meet these training requirements

PROJECT GRO

UPS

11

4 Learning from the project groups


i How to identify patients approaching end of life

This is the first step in ensuring that patients approaching end of life benefit from the additional supportive care they may require during the last six to twelve months of life The project groups also needed to consider not only how they would identify patients approaching end of life (which criteria to use) but also to which patient groups they would apply the criteria

Table 1 Criteria used for identification for the register

Bristol Greater Manchester Kingrsquos Health Partners

Surprise question Surprise question Surprise question1

Unintentional weight loss (non- Age fluid) gt 10 (6 months)

Serum Albumin 25mgdl Primary renal diagnosis

Requires mobilisation assistance Functional status (modified eg walking frame carer for help Karnofsky Performance Scale)

In bed more than 50 of the Co-morbidity (presence of time dementia PVD IHD cancer)

ge2 non-elective admissions in 3 months

Patient has expressed a desire to Consistently asking to stop stop treatment treatment

Conservative management patient Physical appearance and behavior not on dialysis with CKD 5 changes

Identification by GP (already on Relatives contact on non-dialysis GP end of life register) days

Symptom assessment (POS s Symptom assessment (POS s renal) - part of regular assessment renal)1

for all dialysis patients

Quality of life assessment - part of Quality of life assessment (EQ 5D)1

all regular assessment for all dialysis patients

1 In Kingrsquos Health Partners these three criteria alone have been used clinically to identify for the register but all criteria were collected to inform survival prediction (findings yet to be reported)

12

All the groups have included use of the lsquoSurprise Questionrsquo (SQ) ndash ldquoWould you be surprised if this patient died in the next 12 monthsrdquo If the answer is ldquonordquo then the patient may be approaching end of life Use of the SQ has been shown to be an effective aid in identifying those approaching end of life67

In Bristol the kidney unit team worked with palliative care colleagues to develop a patientshycompleted symptom assessment and quality of life tool which was combined with a screening tool designed specifically to identify those approaching end of life The symptom assessment tool was developed by adapting two validated tools ndash the Edmonton Symptom Assessment Schedule89 and POSshys10 The screening tool was created by modifying the Gold Standards Framework Poor Prognostic Indicator Guide11 and including the SQ The assessment and screening tool is completed every three months with dialysis patients However staff were uncomfortable with patients having access to the SQ answer and it is now only completed on the computer for staff to see

The resulting Patient Pathway Review (PPR) (Appendix 1) was modified at the initial stages following staff and patient feedback and met the grouprsquos aim to capture activities of daily living symptom assessment sensory impairment social emotional psychological and spiritual needs and a patient reported quality of life score

A score of 1 or more in the screening tool section of the assessment and a ldquoNordquo response to the SQ indicates that a patient may be approaching end of life and highlights them to the consultant to decide whether it is appropriate to discuss the outcome Once the conversation has taken place and with patient agreement the patientrsquos details are added to the supportive care register (the name given to the cause for concern register in Bristol)

At the start of the project the Bristol team had anticipated that the conservative care patients would be the group most in need of supportive care measures However they soon realised that those on dialysis for more than three months were the largest group whose onshygoing care and quality of life would be improved through the use of the PPR

In the Greater Manchester project prior to deciding the criteria for establishing which patients may be approaching end of life staff workshops were conducted in all areas to identify the indicators described in Table 1

They are used in conjunction with the SQ to enable discussion at multishydisciplinary meetings (MDM) to review patients and identify those who are approaching end of life and suitable for the supportive care register In one maintenance haemodialysis team the meeting is now held monthly and includes

bull Review of patient deaths in the previous month including whether advance care planning discussions could have been held with the patient and family

bull A review of any patients who have been discharged to ensure continuity in care and discussions with patients and families

bull Review of any new patients identified as requiring input (four to five new patients each month)

bull Review of those identified the previous month

LEARN

ING FORM

THE

PROJECT GRO

UPS

13

A number of clinical areas within Greater Manchester are now holding cause for concern meetings and others are working towards a similar format

The team from Kingrsquos Health Partners when considering the criteria that would enable them to identify those approaching the end of life looked at the evidence on the usefulness of variables as a predictor of survival and then whether those variables were readily captured in the clinical context This led them to identify the variables in Table 1 as the most suitable predictors of those approaching end of life

These variables were used to create a screening tool to identify patients for registration Following consultation with patients and carers patient reported measures of symptoms and quality of life were also included Systematic and routine completion of symptom and quality of life scores by patients takes some time to introduce but advantages identified include

bull It signals the importance of symptoms and quality of life to both patients and professionals giving patients lsquopermissionrsquo to raise these concerns

bull It ensures a patientshycentred approach to identification for the register

Using these measures also provides a starting point for holistic palliative needs assessment POSshys renal10 was selected as the measure of symptoms and EQ5D12 for quality of life

The above were combined to create a screening tool (Appendix 2) used at multishydisciplinary meetings (MDM) to determine whether patients should be approached about entry on the register It has been rolled out across the two kidney centres and within six months was introduced in both main units and ten satellite units for all dialysis patients and conservatively managed patients with an eGFR lt 15mLmin

The team from Kingrsquos Health Partners will be evaluating which of the criteria adopted in Table 1 correlate most closely to high symptom burden andor poor quality of life They will also measure which of the variables are the best predictors of survival but are currently using a total POSshys score ge 30 EQ5D overall score lt 60 and the SQ answered lsquonorsquo to determine whether patients should be approached regarding registration These criteria may be refined following evaluation which will be published separately

14

ii Creating and using a register

All project groups have different IT systems available to store their register and data associated with end of life Section 6 describes the approaches taken to recording registration and items associated with end of life care It also looks at the national picture regarding a national end of life care dataset and the items it may contain

One of the challenges identified by the project groups when introducing a register was to change the culture of thinking of staff who although very sensitive to individual patient needs may not have the opportunity to consider the patient as whole reflect with them on their overall progress and to assess where they might be on their illness trajectory Barriers to cultural change of thinking about palliative and supportive care within kidney units include

bull Fear of upsetting patients and families

bull Lack of knowledge amongst professionals about the evidence

bull Genuine as well as perceived lack of time to spend discussing these issues

bull Limited resources to provide supportive and palliative interventions

Introducing a change in thinking can take time and needs to ensure that both an active disease focus and holistic lsquosupportiversquo focus are achieved within a kidney centre All the project groups agreed that it was imperative to have dedicated staff to lead and demonstrate the palliative and supportive approach and found that by introducing a register and the other recommendations of the framework they were able to provide a focus to drive forward changes

While developing their register the Bristol project group used a ldquoThink Aloudrdquo approach with consultant staff The PPR system described above was explained to each consultant and their concerns and suggestions for it were recorded and then used to shape it and the training required

Registration is recorded on the local IT system (Proton) together with items such as the screening tool results and whether leaflets have been provided to the patient (Appendix 3) Registration often triggers actions such as a letter being sent to the GP requesting the patient be added to their Gold Standards Framework and includes guidelines for renal end of life care including advice on pain and symptom management specific to kidney patients

The two Greater Manchester trusts are working with their local IT systems to develop electronic recording of their registers In London specific pages have been created in the Renalware system at Kingrsquos College Hospital to collect data associated with the project and work is onshygoing to create alerts for high symptom scores and poor quality of life scores These alerts flag up high symptom scores andor poor quality of life scores so that (regardless of whether the patient fulfils all criteria for the register) symptoms and quality of life concerns are addressed at the next clinical review The renal unit at Guyrsquos has a different IT system and it has not been possible to tailor it for electronic data collection however some progress has been made on particular aspects with the POSshys renal being incorporated in the hospitalrsquos electronic patient record

LEARN

ING FORM

THE

PROJECT GRO

UPS

15

All groups are looking at methods of linking their registers with other local healthcare services and Greater Manchester and Kingrsquos Health Partners are working on linking with the ldquoCoordinate my Carerdquo initiative and Bristol with Adastra These systems would enable healthcare organisations and staff for example ambulance staff to access end of life care information about patients

The framework recommends that a cause for concern register is established in all kidney centres However the project groups have found that the name ldquocause for concernrdquo is not always suitable and Bristol and Greater Manchester have preferred to call it ldquosupportive care registerrdquo This has been found to be more acceptable and conveys some of the registerrsquos function to patients The register used by Kingrsquos Health Partners is called the GOLD register In all groups registration is discussed with patients sometimes within an outpatient consultation or while they are attending for dialysis

NHS Kidney Care conducted an online survey of English kidney units to establish whether cause for concern registers were in place and to explore aspects of the registers such as where the register was held method of patient identification and what links with palliative care existed The full findings of the survey are reported in Appendix 4 and the main findings from the 24 (46 of kidney units in England) were

bull 63 of the units have established a register and three units are in the process of setting one up

bull 50 hold their register on the local IT system

bull The most commonly cited criteria for inclusion on the register were the SQ and the patient expressing a desire to stop treatment

bull Most reported good links with palliative care physicians andor nurses

iii Advance care planning

The framework indicates that patients vary in the level of involvement that they wish to take in the planning of their care at the end of life consequently planning needs to be sensitive to individual requirements The project groups implemented advance care planning (ACP) for those who wished to use it and developed a number of leaflets and information resources for patients

Following a pilot in one satellite dialysis area all dialysis patients are given the opportunity at any point to discuss ACP in Bristol 100 of the patients giving feedback indicated that it was useful to be aware of their options even if they didnrsquot want to take part immediately A leafletrdquoPlanning Your Future Carerdquo13 is available in each unit For those who choose to engage with ACP a record is made on the local IT system and their preferred place of care and death is recorded Carersrsquo needs may also be assessed and a record made that they have been discussed (see screen in Appendix 3) At the time of writing 81 of patients who had died and recorded a preference during the project period had achieved their preferred place of death

The NEoLCP have a document ldquoPreferred Priorities for Carerdquo14 that can be used as a basis for discussion with patients about their wishes Use of this document was piloted at both kidney centres in Greater Manchester however it did not fully meet the requirements of staff and patients and new documents were developed at each centre ndash ldquoMy Wishesrdquo in Salford and ldquoThinking Aheadrdquo in Central Manchester (Appendix 5 6)

16

These documents have been introduced in a number of areas leading to approximately half of patients participating in completing them The feedback from patients has been very positive for example

ldquoI can say what I want to say itrsquos my opportunityrdquo

ldquoI am just so glad someone has asked me about what I think regarding my care for the futurerdquo

ldquoIt helps to write it downrdquo

The Kingrsquos Health Partners project team used the Holistic Common Assessment (new 15) to support renal professionals in assessing the needs of patients approaching end of life This includes ACP exploring their priorities and preferences for the future and optimising planning to accommodate these priorities The team developed and used an insert for the Kidney Care plan to help open up conversations about priorities and preferences They have also designed a lsquoGuide to Goldrsquo a guidance document for all healthcare workers approaching ACP discussions with renal patients which covers preparing for the discussion carrying out ACP and follow up and documentation An evaluation of these interventions is being carried out through patient experience surveys and inshydepth qualitative interviews with patients and carers The findings of this evaluation will be published separately

All units have emphasised the staff time that needs to be dedicated to raising and discussing these issues with patients and then following through with the planning process This needs to be factored in to ensure that patients are given the opportunity to fully consider their options and wishes and may require more than one discussion

The availability of suitable documents for patients has helped to give staff in all areas including inshypatient wards the confidence to raise these matters with patients

The use of ACP also prompts those involved to develop closer working relationships with other healthcare organisations caring for kidney patients at end of life such as rapid discharge teams Macmillan services and local hospices

One group also found some uncertainty amongst patients regarding some of the terminology associated with renal supportive care including ldquopreferred priorities for carerdquo and the meaning of ldquokey workerrdquo

LEARN

ING FORM

THE

PROJECT GRO

UPS

17

iv Coshyordination of care

The framework emphasises the importance of coshyordinating care to ensure patients receive high quality care at the end of life All the sections above describe aspects of care which contribute to this but coshyordination of care across health boundaries is also required to ensure that the many needs of patients at end of life are met This in turn requires an understanding of where services are located what services are available and engagement with palliative care primary care and social care providers

Table 2 Coordination initiatives

Bristol Greater Manchester

Renal key work ensures that patient has a community key worker and keeps them notified of changes to the patientrsquos condition

Referrals to other services eg dietician renal psychology local hospicepalliative care team

Letters to GPs include request to add patient to GP register

Communications with primary care

Guidelines including advice on pain and symptom management for kidney patients sent to GPS

Completion of report for DS1500 and social services input

Meetings and involvement of families and carers

Use of PPR has enhanced dialysis nursesrsquo knowledge of patientsrsquo needs

Capacity discussion and assessment of patient mental capacity

Creation of checklist to ensure all areas of care considered

Staff exchange with local hospice

Attendance at local Gold Standards Framework meetings

Kingrsquos Health Partners

Primary care staff invited to attend joint study days with renal and palliative staff

A centralised access point to a resources toolkit available to renal professionals

Exchange visits between renal and palliative teams

Many dialysis nurses in Bristol have found that the use of the assessmentscreening tool has enhanced their relationship with the patients and increased their knowledge of the patientsrsquo needs It was originally intended that the key worker nurse would coshyordinate all care communications between secondary and primary care teams and between the MultishyDisciplinary Team (MDT) and the patient and carer However the complexity of this task has proved to place too much pressure on the key workers and they now ensure that the patient has a community key worker who is updated on an onshygoing basis if the patientrsquos condition changes

18

When a letter is sent to GPs notifying them that a patient has been added to the register it will include a request that the patient be added to the practice register and will be accompanied by guidelines for renal end of life care These guidelines include advice on pain and symptom management Under the auspices of the End of Life Care in Advanced Kidney Disease Board the guidelines have subsequently been developed into Ten Top Tips for GPs16

In Greater Manchester the coshyordination of care initiatives described in Table 2 have prompted attention to the care needs of the patients and to assist staff to address some of these issues a checklist (Appendix 7) has been developed to ensure all areas of care are considered Link workers have also developed their own local contacts for referral

Staff in kidney services in Greater Manchester have taken part in a hospice exchange programme to promote collaborative working and 28 renal and hospice staff have undertaken the programme This has provided kidney staff with knowledge of relevant palliative care resources and increased the understanding of hospice staff about kidney patients Thirtyshyseven patients have accessed hospice care at their end of life This programme is continuing The project facilitators have also attended primary care Gold Standards Framework meetings to broaden their understanding of primary care services and helped to make appropriate referrals

In response to requests from GPs for advice concerning symptom management and palliative interventions for kidney patients the team in London have invited primary care partners to attend their study days and other teaching events A ldquoMeet the Renal TeamrdquordquoMeet the Palliative Teamrdquo combined training day was evaluated as very successful Renal professionals and specialist palliative care providers attended together for a day of joint learning and to meet the corresponding primary care renal or palliative professionals in their locality This has been followed up with exchange visits between renal and palliative teams

Recognising the wide range of providers and resources that may be required to support patients the Kingrsquos Health Partners team have developed a centralised access point for information available to renal professionals A resource toolkit has been created that is held on the local intranet with a front end ldquoRenal palliative care how do Ihelliprdquo which links to all the different resources available (see Appendix 8 for details)

Building and maintaining links with primary care and other community based providers is vital in ensuring kidney patients are supported appropriately at end of life All the project groups have found that the steps they have taken to engage with providers have led to improved communications understanding and knowledge among the kidney unit staff

LEARN

ING FORM

THE

PROJECT GRO

UPS

19

v Support for families and carers through the end of life period and beyond

Depending on patient preference families and carers may be involved at any or all stages of supporting patients approaching end of life

When leaflets to help patients consider their preferences for end of life care are provided to patients they are encouraged to discuss their wishes with families and carers Many of the units encourage family and carers to be involved in the discussions However a ldquono visitingrdquo policy in some dialysis areas can be a barrier to family and carer involvement

Patients who are admitted close to the end of life in Bristol are cared for using the Renal Integrated Care Pathway (ICP) This is a trust document adapted for renal care derived from the Liverpool Care Pathway17 and promotes holistic care by guiding staff to recognise and act on pain and other symptoms as well as attending to care and comfort needs and supporting family and carers At this stage patients may also receive input from the palliative care team All renal wardshybased nursing staff are trained in the use of this pathway Patients still attending for dialysis but approaching end of life may be assessed using the PPR more frequently for example monthly

In Greater Manchester the use of ACP has led to development of close working partnership with organisations supporting patients at the end of life including the trustrsquos rapid discharge team to facilitate patients discharge to die in the place of their choosing if it is not hospital

Bereavement

The death of a kidney patient affects not only the patientrsquos family but may also affect the staff and other patients where they have been receiving regular dialysis

The Bristol team carried out a staff survey on bereavement during their project This showed that nurses with less than two years postshyregistration experience were not very comfortable with the discussions or practices around death or afterwards Subsequently the project team carried out short training sessions in the ward and the pastoral staff conducted two training sessions on spiritual and cultural considerations at the end of life Other changes in bereavement practice were initiated following the survey

bull The consultant writes a personal letter to the family when they have been involved in the care offering condolences and the opportunity to talk about the treatment and care of their relative

bull The carers of all dialysis patients receive a card from their dialysis unit from staff who knew the patient well including the opportunity to speak to staff

bull Staff from the dialysis unit endeavour to attend the funeral

bull The approach to informing other patients varies across the dialysis units but there is a common emphasis on encouraging support and discussion with those close to the patient

The use of the Renal ICP on inpatient wards has included informing GPs of a death and supporting families and carers after death

20

Consideration is being given in Bristol to setting up an annual memorial service for the families of all dialysis patients that have died during the preceding year

A remembrance service for the bereaved families of kidney patients has been taking place annually arranged by Central Manchester University Hospitals Foundation Trust kidney unit and at both units in the Kingrsquos Health Partners group

This is a nonshydenominational service to remember dialysis patients who have died during the year Family members are joined by staff from the renal team including doctors nurses administrative staff and chaplains The intention is to provide an opportunity to remember loved ones and draw comfort from others The numbers attending has increased each year and over 200 friends and relatives attended in 2011 in Manchester

The Kingrsquos Health Partners group routinely sends bereavement letters to next of kin and one of the Greater Manchester project groups is working with the local kidney patients association to design cards to be sent to bereaved families of dialysis patients The Kingrsquos Health Partners team have also developed a bereavement resource folder which can be accessed by all renal professionals containing signposts to existing bereavement support services in Trusts primary care palliative care and through Cruse


i Identifying key staff to champion and pioneer the work

All the groups appointed staff to carry through the work of their project with a view to changes in practice and tools developed becoming embedded within their kidney units when the projects are completed

Training of staff (which is covered in detail in Section 4v) was identified as a major challenge in all units and the Bristol group found that the identification of one or two link nurses in each dialysis team was helpful These link nurses attended project meetings and were given more intensive teaching on the aims of the project so that they could support the staff in their respective teams Also within the dialysis teams the nurse or healthcare professional coshyordinating the patientrsquos care and ensuring community key workers are updated if the patientrsquos condition changes is called the ldquokey workerrdquo

In Greater Manchester a network of end of life workers has been established that has supported learning and sharing of experiences and provided support during the project Staff who had previously shown an interest in end of life care were encouraged to be involved in the project as the end of life care link workers A register of all the link workers has been created including name and contact details and is available on the renal pages and can be accessed on the trust intranet The project facilitators have also been able to build on relationships outside the kidney teams and raise awareness of the project and the support needs of kidney patients approaching end of life

LEARN

ING FORM

THE

PROJECT GRO

UPS

21

At Kingrsquos Health Partners link renal nurses within each dialysis unit supported by the project team have been carrying through much of the holistic assessment of palliative and supportive needs and follow up work with patients This has been incorporated into the MDMs where the key worker is identified to take forward assessment care planning and advance care planning The link nurses have adapted the processes to best fit their unit and continue the flagging and followshythrough with patients and families thereby embedding the process into their unit

All groups emphasised the time that needs to be dedicated by link workers to fully assess patientsrsquo needs and wishes as this may take place over a number of consultations and at a pace and frequency dictated by the patient

All staff will potentially be involved in caring for patients as end of life approaches However the identification of staff who can support their colleagues and share knowledge and skills has been found to be very important in the project groups when pressures on all staff may be great

ii Training needs of kidney unit staff

Early in the project all groups identified that training for staff in kidney units would be crucial to the delivery of the project A number of approaches have been taken in all the centres to meet the needs of various staff groups and roles

bull Raising awareness of the projects within the units

bull Specific education about assessing and addressing palliative and supportive needs of kidney patients

bull Communication skills training for all renal professionals

bull Advanced communications training for those with key roles

In Bristol education was directed through the link workers who were given intensive training in the aims of the project the tools that were being utilised and the planned roll out across the centre The project nurses also visited the dialysis areas regularly to support staff help with use of the IT developed and maintain awareness Regular updates on the project were given at audit meetings Education in primary care included a guideline that is included when GPs are informed that a patient is added to the register This guidance has now evolved into Ten Top Tips for GPs16

During the project a staff survey was conducted to establish how widespread knowledge of the tools and documents was This indicated that most staff who participated knew ldquoa lotrdquo or ldquosomerdquo about the tools and documents developed The document that was least familiar to staff was the GP guidelines Recommendations following the survey included that more and regular teaching and education was still required and could be delivered in targeted areas

An initial stakeholder event was held in Greater Manchester to describe the aims of the project with healthcare professionals from secondary primary tertiary and voluntary care sectors attending This event also enabled working relationships to be established with many organisations that have since been built on and continue The awarenessshyraising also resulted in end of life care becoming a standing item on many agendas including business and finance meetings governance meetings and senior nurse meetings The project facilitators also attended ward and unit managerrsquos meetings to keep staff upshytoshydate with the progress of the project and training strategy

22

The Kingrsquos Health Partners team regularly updated staff about the project to ensure extensive understanding of the purpose plans and findings This awareness raising was built on through education about prognosis and survival of dialysis and conservative care patients and emphasis of the importance of the holistic assessment approach being taken The team had previously found that physicians in nonshyrenal specialties were unfamiliar with conservative care leading to an interpretation of conservative care as inappropriate refusal of dialysis and consequent attempts to change the patientsrsquo choice of treatment To spread understanding of conservative care a ldquoConservative Care Grand Roundrdquo was instituted and led to increased understanding and confidence in other clinicians that this was an active pathway for patients

As well as raising awareness of the projects and the tools and documents associated with them the teams also identified that staff required training in the aspects of end of life care that were being introduced The main focus of training was on communications skills and advance care planning

A number of the nephrology consultants in Bristol attended specialist communication skills training over two halfshydays run by an advanced communications training facilitator with role play with actors The same training facilitator also ran communications training days for renal nurses on two occasions An advance care planning day run by a local hospice was attended by a number of renal nurses

At the start of their project the Greater Manchester team conducted a training needs assessment across all sites using a selfshyreporting questionnaire (Appendix 9) Ninetyshyone per cent of the responses were from nursing staff and eight per cent from medical staff Approximately a third of respondents had received training in communications skills and nearly 30 training in end of life care skills However only 11 of this training had occurred within the last three years The results from this survey prompted exploration of training facilities available locally

At this time several trusts in the North West were investing in the SAGE amp THYMEreg foundation communication skills course aimed at all grades of staff and taking three hours Sage and Thyme is a model to enable health and social care professionals to listen to concerned or distressed people and to respond in a way that empowers the distressed person In order to accelerate access to this course for renal staff a number of staff took the ldquotrain the trainerrdquo course and adaptations have been made to provide renal specific Sage and Thyme training The adaptations include advance care planning scenarios with role play Approximately 200 staff have now taken the course with positive feedback (Appendix 10) including renal consultants other medical staff and clerical staff

Sage and Thyme training provides a basic grounding in communications skills but more advanced skills are required for key and link workers Communication skills training at enhanced and advanced level has been accessed via the Greater Manchester and Cheshire Cancer Network and this has been delivered to 17 staff across the project group In addition the project group based in SRFT have provided a workshop ldquoThe Simple Tools to Start the Conversationrdquo from the Conversations for Life programme Delegates included specialist registrars and nursing staff and was well received The project groups have also found that staff exchanges with local hospices have increased knowledge and confidence in end of life care

LEARN

ING FORM

THE

PROJECT GRO

UPS

23

Some training was also required for the project staff and the palliative care consultants have attended some courses related to communications skills and advance care planning

Sage and Thyme training is also available to staff in the London trusts and the team decided to concentrate on developing and implementing advanced communication skills training for renal staff A focus group was conducted to identify training needs and whether Advanced Communication Skills training needed to be renal specific or more generic A number of key areas were highlighted that were distinct for renal professionals as compared with for instance oncology These are described in Figure 1

Figure 1 Advanced Communication Skills Training ndash challenges specific for renal professionals

The availability of dialysis Dialysis is often seen in a ldquoblack and whiterdquo way as an active intervention which prolongs life or the withdrawal of dialysis which brings death This distinct lsquolife saving or life prolongingrsquo intervention is not available in other conditions in the same way

Public perception of renal disease Patients families and friends often consider that dialysis offers lsquocompletersquo replacement for a failing kidney with less awareness of limitations

Family issues or pressures These may emerge early on or may emerge only as a patient deteriorates or as dialysis decisions are made

Early introduction of palliative approach Engaging in a palliative approach from diagnosis can be difficult as the path is sometimes very active at the start

The importance of definining roles Who has the difficult conversations and when Many of the dialysis patients spend a lot of time in the dialysis units and are very well known to the staff They may be seen infrequently by more senior staff Implementing a clear process for lsquowhorsquo should conduct some of the more sensitive and difficult conversations (and lsquowhenrsquo) was felt to be important

Nephrology as a highly technical specialty The more technological aspects (for example blood results) may represent more familiar and secure ground for staff while aspects such as communication and advance planning may be perceived as less of a priority and less comfortable

Issues around cognitive impairment While not specific to kidney disease cognitive impairment may be more frequent in advancing kidney disease and this impacts on the importance of early introduction of palliative approaches and subsequent scope for detailed discussions and decision-making

24

Based on these findings they designed and rolled out an Advanced Communication Skills Training Programme for Renal Professionals consisting of one fullshyday training followed by two half days training based on the model of similar training in advanced cancer18192021 The full day included a session where invited patientsfamily carers attended and shared their experience of communications particularly with regard to communicative style and manner A session on communication skills includes a focus on the PREPARED acronym developed by Clayton and colleagues22 to communicate about prognosis and end of life issues with adults with a lifeshylimiting illness (Appendix 11) Participants were also offered the opportunity for role play to trial the communication skills techniques This programme has been run for all renal link nurses and a shortened version has been adapted for consultants In general the training programme was very well received by participants with the sessions on patient and carer experience and the opportunity for roleshyplay in a lsquosafersquo environment both highly valued

End of Life Care for All (eshyELCA) is an eshylearning project commissioned by the Department of Health and delivered by eshyLearning for Healthcare (eshyLfH) in partnership with the Association for Palliative Medicine of Great Britain and Ireland There are more than 150 interactive sessions of eshylearning within four core modules

bull Advance care planning

bull Assessment

bull Communication skills

bull Symptom management comfort and wellshybeing

In 2011 NHS Kidney Care supported the development of one in a series of additional modules specifically related to the implementation of the framework23

The modules take 15 to 20 minutes to complete and are free to all health care staff

LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations


The framework has proved a very useful basis for the project groups establishing end of life care for kidney patients The experience and learning described above show that the challenges have been tackled and achieved in different ways to fit the diverse working practices in the project areas Kidney units that implement the framework will ensure that they are well positioned for achieving the quality statements set out in the NICE standard24 for end of life care

The following recommendations are based on the learning and experience from the work of the project groups


A systematic approach can be taken to identify patients who may be approaching end of life This allows staff to move across work areas and still be familiar with the process A number of examples have been described above and kidney units developing registers in partnership with primary care colleagues could adopt part or all of any of those that have been shown to be useful in the project groups











26





iv Coordination of care Consider methods of raising awareness and links with local organisations involved with end of life care






RECOMMEN

DATIONS

27





All groups found training and education were crucial to the success of their projects to give staff the knowledge and confidence to raise issues with patients A number of approaches were adopted including taking advantage of training already within the trust courses run by local palliativehospice staff and national initiatives for training in end of life care The groups found that where possible providing kidney specific training was the most successful

Training should be designed and delivered at different levels according to the previous training and experience of the renal professionals and the extent to which they will be responsible for end of life care Kidneyshyspecific advanced communication skills training has been developed and should become more widely available

28

6 End of life care in advanced kidney care dataset

End of life care for patients with advanced kidney disease is an emerging theme which naturally connects with other developments over the last two years in the wider end of life care community One of the ways to improve end of life care for patients is to maximise the opportunities to record elements of the care plan in a consistent manner In doing so it becomes possible to communicate and share that plan over a much wider range of people and settings than it would if the care plan was unstructured Better informed patients and their carers makes ldquoright carerdquo much more likely and can reduce distressing and wasteful health activities

Over the last two years the National End of Life Care Programme (NEoLCP) has been developing a set of core items which could be unified to enable better communication At their most basic this set of items can form a register of people who are reaching the end of their life who require more or different interventions or care Such a register could be used to prompt discussion in multishydisciplinary meetings even if it was just constrained to one clinical setting (such as a renal unit)

Large gains come from sharing information however and the NEoLCP piloted the use of a shared end of life care register between settings The final report and their evaluation gives a useful summary of their learning and some clear recommendations about how to make a success of implementing a shared care plan25

Even within the NEoLCP pilot schemes there were differences in the breadth and depth of the information recorded and the range of services that could access the shared record In the most developed pilots the end of life care register became much more than a prompt to multishydisciplinary discussion forming a fully developed care plan which was shared between primary care secondary care specialist palliative care out of hours services and the ambulance service

In parallel with the NEoLCP pilots and before the publication of the final report and recommendations the three NHS Kidney Care End of Life Care (EoLC) pilot sites undertook to implement a local end of life care register and to then test its value in clinical practice and for clinical audit Many English renal units have implemented or are developing such registers

Each of the pilot sites had different IT tools at their disposal to hold their register For example in the Bristol pilot the register was contained with the renal unit clinical computer system was developed inshyhouse using existing expertise in that system and became an integrated part of the routine assessment and tracking of all patientsrsquo care needs in the dialysis units which adopted the system The scope to share the record outside the renal service is limited however In contrast in the West Manchester pilot the register was developed as part of other work to share care records for all specialities between primary and secondary care The resulting register was less specific to patients with kidney disease but has greater potential to share and inform care decisions in other settings

The purpose of this part of the report is to summarise the learning from the kidney care pilots of the NEoLCP register The End of Life Care Locality Register Pilot Programme Core Data Set is described in Appendix 12

DATA

SET

29

Description of the IT systems in the pilot areas

Bristol

The single pilot run in the Bristol renal centre and surrounding units used the standalone renal clinical computer system in widespread use throughout that renal unit (Proton) The register was developed between clinicians in the pilot and the local IT system manager

Manchester (Salford)

The register was constructed between the clinical team and the IT support for the electronic patient record already in use throughout the Salford Royal NHS Foundation Trust and progressively being shared with other clinical settings in the community

Manchester (Central)

Clinical Vision 4 (CV4) IT system was utilised to establish the register allowing access to information across all renal settings within Central Manchester including renal out patientsrsquo clinics and renal satellite units

Kings

The register was constructed with a locally developed renal standalone IT system with strong clinical support and buy in

Guyrsquos

Guyrsquos and St Thomasrsquo NHS Foundation Trust has extensively developed a locally configured version of the iSoft clinical manager software which has incorporated the renal unit clinical computing requirements and is progressively being shared with the surrounding community

The items adopted in each unit are described in Appendix 13

30

Summary of the learning from developing and implementing renal end of life care registers

The conclusions from the End of Life Care in Advanced Kidney Disease pilots register project is presented using the same heading as the key finding and recommendation from the NEoLCP the headlines are the same but here renal examples are given to illustrate the points The conclusions from the audit of the data held will be presented separately

Engage with all stakeholders early

Developing the register requires dedicated clinical and IT input

The three centres in the pilot all had a combination of a clinical champion (or champions) and an IT partner who was also engaged in developing the register

Establish what is expected from the register

Is this an internal register to drive multidisciplinary discussion within the renal unit or is it a communication tool with other care settings

Establish the data requirements

It was clear from the audit of the data on the care registers that some information was more likely to be recorded than others If the items being proposed are audit steps care should be taken to ensure they fall on the natural clinical care pathway for most patients otherwise the item is unlikely to be reported Free text allows the subtlety of a care discussion but a YN is required in order to unequivocally record whether a particular decision has been reached or a particular action has been carried out

Think about what to call the register

In Bristol the register evolved and although initially called the ldquoGold Standards Registerrdquo this was found to be poorly understood by patients and staff and was renamed as ldquosupportive care registerrdquo

Before selecting an IT platform and approach think through the needs of the different stakeholders Renal units have an established track record of developing their existing clinical computer system to meet the changing patient pathways and interventions that have been adopted over the last 30 years Developing a register in the renal clinical computer system is therefore the course which is easiest to implement at minimal cost and is accessible and understood by most members of the renal multishydisciplinary team However many secondary care providers are developing alternative systems to communicate with primary care and share letters and results If the primary goal is to share information outside the renal unit then utilising such a system or at least adopting a standard set of data items and using such technology to share these items might be more appropriate

Before selecting an IT platform map out what systems are already in use in your area

All of the pilots tried to use the IT systems which were already available to them It is very unlikely that a single unifying system will now be implemented in the NHS and instead the philosophy is one of integrating existing and new technologies Focusing instead on using standard items defined in a consistent manner is the key to ensure that the most can be made of the information in the future

DATA

SET

31

Establish who has responsibility for the accuracy of the patient record

An optshyin model of consent is almost universally felt to be necessary

This was found in the three kidney care pilots also although it is not universally adopted in all renal centres using end of life care registers Formal or informal a clear step which ensures that a patient realises what the end of life care register is and how it could benefit their care seems necessary for the register to work effectively and with transparency in all subsequent consultations

Consider how to present the issue of how binding the register is

Whilst this is true for all decision making about care in advanced CKD it is perhaps most obvious in the decision making around whether or not to start on renal dialysis Mentally competent individuals are entitled to change their minds at any stage in their care process and the reassurance that this is possible regardless of what is on the EoLC register is important to communicate

It is vital that end users are trained both in the IT and the clinical skills required to use the register

It is clear from all the pilot sites that staff training is essential to successful conversations and effective care planning at the end of someonersquos life This is true of the EoLC care register also staff training to ensure everyone is clear how the information on the register drives future care decisions is necessary if they are to complete the register consistently

Provide staff with the evidence of the benefits of the register

Staff in renal units are aware of the benefits of recording electronic information for the benefit of themselves and others already as most clinical staff in a renal unit will update the renal computer system with information several times per day and use it to look up much more information entered by others Unless the information added to the EoLC register is seen to be used to drive direct clinical care or improve standards through audit it will be poorly utilised except by pockets of enthusiasts

End of life care registers as an audit tool

In addition to establishing EoLC care registers and providing feedback on implementation each of the pilot sites was asked to provide information to allow the register to be tested as a potential tool for local and national audit The National Service Framework (NSF) for renal services published in 2004 and 2005 included guidance on the standards of care expected for patients with endshystage renal disease (ESRD) and specifically to this report those with advanced chronic kidney disease (CKD) at the end of their lives It led to the development of a National Renal Dataset (NRD) which mandated the collection of approximately 900 items to monitor the implementation of the NSF in patients with ESRD However the NRD contains very few items which allow for monitoring and quality improvement for patients with CKD at the end of their lives It was expected that information from the pilot sites could help inform the development of such items

Analysis populations

ldquoPilot ESRD populationrdquo in the audit was defined as patients with ESRD in the centre who were cared for by a clinical team who had agreed to the pilot and were already involved in the broader NHS Kidney Care pilots implementing the framework

32

The populations included in the analysis were two separate subshypopulations of the pilot ESRD population in the collaborating centre ndash SET A and SET B Appendix 14 shows the sets and audit questions

Audit findings

All sites had implemented a register for end of life care Data were received from each of the three pilot areas covering activity between 1 August 2011 and 31 October 2011 although two sites in each of the pilot areas was not able to provide summary data for comparison in time for publication

Gratifyingly few patients died during the short audit period Sub group analysis by age gender or race on each site was therefore not possible

Table 3 Summary of audit findings

Site A Site B Site C

Number ESRD pts 679 505 1035

Question One

Number ESRD pts who died

28 13 34

Died in hospital 14 6 8

Died in hospice 1 2 1

Died at home (inc residential care)

12 5 2

Not known 1 0 23 (those not on register)

Number who died who were on register

11 (and 1 who was offered but declined)

5 11

Number who expressed a preferred place of death

12 5 6

Number who died in that preferred place

9 5 6

Question Two

Number of patients 611 16 1141

on EoLC register (Total on register) (Added during audit)

Number with a key worker completed

98 NA NA

Known to specialist palliative care

NA NA

EoLC tool in use 5522 NA NA

NA inform

ation on this not available

dagger May include a small number of patients not with ESRD In addition seven patients were identified by staff but declined the recommendation to join the register 1 A very high proportion of patients did express a preferred place of death Although it is noted that this decision often evolves as the EoLC conversations progress it is estimated by this site to be the preference of at least 39 of their patients to die at home 2 Although not part of the original audit question this is the number of patients actively screened to assess whether a further discussion was needed about end of life care needs

DATA

SET

33

Audit discussion

Previous work suggests that a disproportionate number of patients with advanced CKD at the end of their life die in hospital These patients are often well known to their renal teams and it is not always a surprise that a patient who is already admitted to hospital when a decision to stop treatment is made might opt to remain in hospital In addition some patients died either unexpectedly without the opportunity to plan or whilst undergoing full medical intervention to save their life In this context it is very encouraging to note that a third of all patients (half those in two sites) who died during the audit did so at home or in a hospice This reflects well on the efforts in the pilot sites to enable and enact patient choice

Of those patients who expressed a choice of where they wanted to die the majority were able to die in that place This measure is a complex measure which incorporates several key steps in the care pathways Patients need to have undergone a choice process and had their decision recorded The patient system then needs to facilitate the fulfilment of that care plan when the correct moment comes and the place of death also needs to be recorded This simple measure of the completeness of the preferred and actual place of death coupled with a measure of how many times the two are equal seems a very effective measure of a successful end of life care process

Recommendations

Evidence from the NHS Kidney Care pilot sites supports the recommendations to

1 Establish a register to allow coshyordination of care between professions and across care boundaries

2 To use the national heading to allow consistency of recording and future integration if a national Information Standard is established

3 Record where a patient with ESRD or conservative care dies and in those identified in advance where their preferred place of death is

4 Locally establish an audit programme which compares these answers

5 Nationally discussions take place with the UKRR and the NRD management board on adopting items for the patient place of death and preferred place of death to allow national comparison

34

Acknowledgements

This report was produced by NHS Kidney Care incorporating the reports of its project by the teams at

bull North Bristol NHS Trust

bull The Greater Manchester Managed Kidney Care Network a partnership between the Central Manchester University Hospitals Foundation Trust and Salford Royal NHS Foundation Trust

bull The Advanced Renal Care (ARC) project led by the Department of Palliative Care Policy and Rehabilitation at Kingrsquos College London and working across the renal units at Kingrsquos College Hospital NHS Foundation Trust and Guyrsquos and St Thomasrsquo NHS Foundation Trust

Thanks to the following for their contribution and comments on the draft report

Ann Banks Katherine Bristowe Susan Heatley

Clare Kendall Louise Long James Medcalf

Fliss Murtagh Hilary Robinson Kate Shepherd

ACKNOWLEDGEM

ENTS

35

Abbreviations and glossary

Term or abbreviation

NSF

NEoLCP

SQ

POS-s

MDM MDT

Karnofsky Performance scale

EQ5D

NICE

Description

National Service Framework - The National Service Framework sets standards and identifies markers of good practice which will help the NHS and its partners manage demand increase fairness of access and improve choice and quality in kidney services

National End of Life Care Programme - works with health and social care services across all sectors in England to improve end of life care for adults by implementing the Department of Healthrsquos End of Life Care Strategy

Surprise Question ndash ldquoWould you be surprised if this patient died in the next 12 monthsrdquo

The Palliative care Outcome Scale (POS) is a tool to measure patients physical symptoms psychological emotional and spiritual needs and provision of information and support at the end of life POS is a validated instrument that can be used in clinical care audit research and training

Multi-disciplinary meeting Multi-disciplinary team

The Karnofsky Performance Scale Index is used to quantify patients general well-being and activities of daily life

EQ-5Dtrade is a standardised instrument for use as a measure of health outcome Applicable to a wide range of health conditions and treatments it provides a simple descriptive profile and a single index value for health status

National Institute for Health and Clinical Excellence

Source (if applicable)

httpwwwdhgovukenPublicationsan dstatisticsPublicationsPublicationsPolicy AndGuidanceDH_4070359


httpwwwendoflifecareforadultsnhsuk

Refs 67

httppos-palorg

httpwwweuroqolorghomehtml

httpwwwniceorguk

36

GSF Gold Standards Framework - The Gold Standards Framework (GSF) is a systematic evidence based approach to optimising the care for patients nearing the end of life delivered by generalist providers It is concerned with helping people to live well until the end of life and includes care in the final years of life for people with any end stage illness in any setting

httpwwwgoldstandardsframeworkorguk

ACP Advance Care Planning ndash a voluntary process to help an individual who has capacity to anticipate how their condition may affect them in the future and record choices about care and treatment and or an advance decision to refuse treatment

httpwwwendoflifecareforadultsnhsuk publicationspubacpguide

PPC Preferred Priorities for Care ndash a tool to give patients the opportunity to think talk and record their preferences wishes and what is important to them It is not intended for the recording of refusal of specific medical treatments

httpwwwendoflifecareforadultsnhsuk toolscore-toolspreferredprioritiesforcare

e-LfH E Learning for Healthcare - an e-learning programme providing national quality assured online training content for healthcare professionals

httpwwwe-lfhorgukindexhtml

e-ELCA E End of life care for all ndash an online resource that provides training and education for those involved in delivering end of life care Free for all NHS staff

httpwwwe-lfhorgukprojectse-elca launchindexhtml

ICP Integrated Care Pathway

EOLCinAKD End of Life Care in Advanced Kidney Disease

LCP Liverpool Care Pathway - an integrated care pathway that is used at the bedside to drive up sustained quality of the dying in the last hours and days of life

httpwwwmcpcilorgukliverpoolshycare-pathway

Cruse A charity that provides support following bereavement

wwwcrusebereavementcareorguk

ABB

REVIATIONS

AND GLO

SSARY

37

References

1 Department of Health National Service Framework for Renal Services ndash Part Two Chronic kidney disease acute renal failure and end of life care 2005 [viewed 2012 Feb 13] Available from httpwwwdhgovukprod_consum_dhgroupsdh_digitalassetsdhendocumentsdigitalassetdh_4102680pdf

2 Department of Health Our Health Our Care Our Say a new direction for community services 2008 [viewed 2012 Jan 24] Available from httpwwwdhgovukenPublicationsandstatisticsPublicationsPublicationsPolicyAndGuidanceDH_4127453

3 Department of Health High Quality Care for All Our NHS Our future NHS next stage review final report 2008 [viewed 2012 Jan 24] Available from httpwwwdhgovukprod_consum_dhgroupsdh_digitalassetsdhendocumentsdigitalassetdh_085828pdf

4 Department of Health End of Life Care Strategy 2008 [viewed 2012 Jan 24] Available from httpwwwdhgovukprod_consum_dhgroupsdh_digitalassetsdhendocumentsdigitalassetdh_086345pdf

5 NHS Kidney Care End of Life Care in Advanced Kidney Disease A Framework for Implementation 2009 [viewed 2012 Feb 13] Available from httpwwwkidneycarenhsukLibraryendoflifecarefinalpdf

6 Moss AH Ganjoo J Shaema S Gansor J Senft S Weaner B Dalton C MacKay K Pellegrino B Anantharaman P Schmidt R Utility of the ldquoSurpriserdquo Question to Identify Dialysis Patients with High Mortality Clinical Journal of American Society of Nephrology 2008 3(5)1379shy1384

7 Cohen LM Ruthazer R Moss AH Germain MJ Predicting SixshyMonth Mortality for Patients Who Are on Maintenance Haemodialysis Clinical Journal of American Society of Nephrology 2010 5(1)72shy79

8 The Edmonton Symptom assessment system [Internet] 2012 [viewed 2012 Feb 13] Available from httpwwwpalliativeorgPCClinicalInfoAssessmentToolsAssessmentToolsIDXhtml

9 Richardson LA Jones GW A review of the reliability and validity of the Edmonton Symptom Assessment System Current Oncology 2009 16(1) 55

10 POS shy S shy Palliative care Outcome Scale ndash Symptoms [Internet] 2012 [viewed 2012 Feb 13] Available from httpwwwcsikclacukposshyshtml

11 Information about the Gold Standards Framework [Internet] 2012 [viewed 2012 Feb 13] Available from wwwgoldstandardsframeworkorguk

12 EQ5D [Internet] 2012 [viewed 2012 Feb 13] Available from httpwwweuroqolorghomehtml

13 National End of Life Care Programme Planning for Your Future Care Revised 2012 [viewed 2012 Feb 13] Available from httpwwwendoflifecareforadultsnhsukpublicationsplanningforyourfuturecare

14 National End of Life Care Programme Preferred Priorities for Care Revised 2007 [viewed 2012 Feb 13] Available from httpwwwendoflifecareforadultsnhsuktoolscoreshytoolspreferredprioritiesforcare

38

15 National End of Life care programme Holistic common assessment of supportive and palliative care needs for adults requiring end of life care March 2010 [viewed 2012 Feb 21] Available from

httpwwwendoflifecareforadultsnhsukpublicationsholisticcommonassessment

16 NHS Kidney Care Caring for Patients with Advanced Kidney Disease at the End of Life ndash Ten Top Tips 2011 [viewed 2012 Jan 24] Available from httpwwwkidneycarenhsukLibraryEoLCTenTopTipspdf

17 Liverpool Care Pathway for the Dying Patient (LCP) [Internet] 2012 [viewed 2012 Feb 13] Available from httpwwwmcpcilorgukliverpoolshycareshypathwayindexhtm

18 Stewart MA Effective physicianshypatient communication and health outcomes a review Canadian Medical Association Journal 1995 152(9)1423shy33

19 Wilkinson S Roberts A Aldridge J Nurseshypatient communication in palliative care an evaluation of a communication skills programme Palliative Medicine1998 12(1)13shy22

20 Wilkinson S Bailey K Aldridge J Roberts A A longitudinal evaluation of a communication skills programme Palliative Medicine 1999 13(4)341shy8

21 Jenkins V Fallowfield L Can communication skills training alter physiciansrsquobeliefs and behavior in clinics Journal of Clinical Oncology 2002 20(3)765shy9

22 Clayton JM Hancock KM Butow PN Tattersall MH Currow DC Adler J et al Clinical practice guidelines for communicating prognosis and endshyofshylife issues with adults in the advanced stages of a lifeshylimiting illness and their caregivers Medical Journal of Australia 2007 Jun 18 186(12 Suppl)S77 S9 S83shy108

23 End of Life Care in Advanced Kidney Disease A Framework for Implementation ndash interactive session within the lsquoIntegrating Learningrsquo module [Internet] 2012 [viewed 2012 Jan 24] Available from httpwwweshylfhorgukprojectseshyelcaindexhtml

24 National Institute for Health and Clinical Excellence Quality standard for end of life care for adults 2011 [viewed 2012 Feb 13] Available from httpwwwniceorgukguidancequalitystandardsendoflifecarehomejspdomedia=1ampmid=E9C7F836shy19B9shyE0B5shyD4B49B5A7

149F081

25 National End of Life Care Programme End of Life Locality Register Evaluation Final Report June 2011 [viewed 2012 Feb 13] Available from httpwwwendoflifecareforadultsnhsukpublicationslocalitiesshyregistersshyreport

REFERE

NCES

39

Appendix 1 shy Patient Pathway Review developed by the Bristol Project Group

Patient Pathway Review Richard Bright Kidney Unit

Date ____________________________ Name

Assessed ________________________(sign) Unit No

Print Name _______________________ DOB

Please put a tick in the box to show how you have been feeling in the last week

Do you feel your health restricts your ability to perform these activities

Not at all Moderately Severely Overwhelming Slightly 0 2 3 41

Walking

Climbing stairs

Bathing

Self Care

In the last week have you experienced any of the following symptoms

Pain

Shortness of breath

Weakness or a lack of energy

Itching

Changes in skin including colour

Nausea vomiting (feeling being sick)

Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness

Difficulty in sleeping

Restless legs difficulty keeping legs still

Comments

40

Have there been any changes with your

Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech

In the last 4 weeks Have you had any practical problems concerns with

Children Child Care

Housing

Finances

Personal Transportation

Work

Partner Family Relationships

Have you felt lsquolow in moodrsquo or a period of feeling lsquodown heartedrsquo

APPEN

DICES

During the last 4 weeks how often do you feel your physical and emotional health has affected your social and working life

In the last 4 weeks have you felt worried

Do you feel your spiritual needs are being met Yes No

Quality of life - please place a cross on the line

10 9 8 7 6 5 4 3 2 1

Excellent Acceptable Tolerable Unacceptable

Comments

NoWould you like any further information on your care Yes

Have you considered having haemodialysis or peritoneal dialysis treatment in your own home

Yes No Na Referred Already

For office use Complete SCR Score _________________________________________________________

41

Richard Bright Kidney Unit Screening tool to identify patients who may require review for the Supportive Care Register

Aim To identify patients who may require Additional supportive care or information

Name Unit No

Guidelines for use Can be used by renal medical staff dialysis staff home team members education team senior ward nurses social caresupport (eg Ruth) specialist nurses (eg diabetes)

When to use 1 Following routine use of the assessment tool 2 At any time when deterioration noted 3 At patientrsquos request 4 In clinic (has usually been used prior to clinic)

Kidney Patientsrsquo Supportive Care Identification Tool (Score 1 or 0 for each of the following)

bull Unintentional weight loss (non-fluid) gt 10 (6 months) ___ bull Serum albumin lt25mg dl ___ bull Requires mobilisation assistance eg walking frame carer to help ___ bull In bed more than 50 of the time ___ bull Conservative management patients (eg not on dialysis) with CKD 5 ___ bull gt 2 Non-elective admissions in 3 months ___ bull Patient has expressed a desire to stop treatment ___ bull Identification by GP (already on the GP practice end of life register) ___

Support Care Register Score ___

If the score is 1 or more please tick actions taken 1 Acknowledge concern to the patient - ldquoI can see you are not as well as previously is there anything more we can do for yourdquo ldquoI will let your consultant know of the changes

2 Enter score on proton Supportive Care Register screen - inform consultant (proton if to be reviewed at next clinic appointment email or telephone if more urgent MDM if an inpatient)

Staff Signature _______________ Name (print) ___________________ Date ____________

42

Appendix 2 shy Screening tool to identify patients for the GOLD register

Developed by the Kingrsquos Health Partners project group Patient Unit No DOB Consultant

Guidelines for use Can be used by any member of the renal team involved with patient care When to use 1 Following routine use of the POS-S renal and EQ-5D assessment tools 2 Prior to the MDM 3 Any time deterioration is noted

Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky

Underlying diagnoses No = 0 Yes = 1

Dementia

PVD

IHD

Myeloma or underlying cancer

Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75

Underlying Regal Diagnosis

Surprise Question Y N

APPEN

DICES

Staff Signature _______________________ Name (print) _____________________ Date _______________

43

Appendix 3 shy Bristol Proton Screen

Test - Bill (William) DOB - 011152 Gold Standard Pathway

Screening tool results 1 Unintentional weight loss of gt 10 in 6 months 2 Serum Albumen lt25mg dl 3 Requires mobilisation assistance 4 NO to the Surprise Question

Patients identified for GSP (Dr) Y N Yes Initials RRA Date 11122009 Information leaflet given Yes Clinic and GSP letter to GP Yes Copy both to district nurse Yes Patient consent given Yes

Key worked allocated by GS team Yes Name J Smith Date 21122009 Grade RDU PCS Referral made Yes Date 04012010

Somerset Hospital - GSP RRA 171717

Patient pathway review assessment 1st review 10112009 Last review 23042010 Reviews 5

Patient care plan Agreed Init Date 10112009 Yes AC Carerrsquos need assessed Date 13012012 Yes AC

Advanced care planning Offered Yes 21122009 Accepted Yes 21122009 LPA Yes ADRT Preferred Priorities for Care Date 23012010 PPC Home

AC Plan No Y PPD Hospice

Y ICP

Actual place of death Date

44

Appendix 4 shy NHS Kidney Carersquos Cause for Concern Survey

Background

The End of Life Care in Advanced Kidney Disease A Framework for Implementation1 published in 2009 provides recommendations and guidance for kidney units that would optimise end of life care for kidney patients of all treatment modalities One of the recommendations is that units create Cause for Concern registers

ldquoTo facilitate care planning and communication consideration should be given to creation within the local kidney unit of a ldquoCause for Concernrdquo register to facilitate the identification of those within the unit who are approaching the end of life phase The aim is to facilitate care planning communication and use of end of life care tools and link with the palliative care registers held by GP practices which are part of the QOFrdquo (p21)

NHS Kidney Care has established a project to implement the framework within three project groups

bull North Bristol Health Economy

bull Kingrsquos Health Partners

bull Greater Manchester Kidney Network

Each group has set up Cause for Concern registers as part of their projects

However there is no information available concerning the progress with establishing registers across kidney units in England

This survey was created to explore the number and nature of registers within kidney units

Method

A survey was created using Survey Monkey that could be completed online Fourteen questions were posed to cover whether a register was in place and to explore aspects of the register such as method of patient identification links with palliative care existence and use of patient pathways

A request to complete the survey was sent to all (52) English kidney unit clinical directors and nursing leads with a link to the online questions

Results

The survey was sent to the 52 English kidney units and 24 (46) identifiable responses were received An additional six responses had no indication of where they originated and may have been initial attempts at answering the survey or tests of the questions The findings reported below relate to the 24 completed questionnaires but not all respondents replied to every question so the number of responses reported will not always total 24

The results from the survey questions are presented below

APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)

1 Does your renal unit have a Cause for Concern or Supportive Care register for patients with end stage renal failure who are approaching end of life

Yes 15 625

No 6 25

Other 3 125

In the case of ldquootherrdquo responses the reason given in two cases was that a register was in development Data protection issues were preventing progress in the remaining unit

2 Which of the following are used as inclusion criteria for placing patients on the register Please tick all that apply

16

14

12

10

8

6

4

2

0

Number of Units

Responses in the ldquootherrdquo section included

bull MDT holistic assessment

bull Failure to thrive on dialysis

bull Other coshymorbidities and malignancies

The most commonly cited criteria are the Surprise Question and the patient expressing a desire to stop treatment

46

3 Are the criteria for inclusion on your Cause for Concern Supportive Care register recorded on your local renal database

Yes 8

No 7

Some but not all 3

Donrsquot know 0

A third of units responding to the survey record their inclusion criteria on their local database

APPEN

DICES


bull Under development

bull In separate databases or spreadsheets

bull In local documents

The majority of registrations are recorded on local IT systems

47

5 How many patients are currently on your Cause for Concern Register

The numbers reported ranged between four and 148 with the majority of units having less than 40 patients on their register

6 What percentage of patients currently on your Cause for Concern Register are dialysis preshydialysis transplant conservative care

The responses varied with 1 or less transplant patients on registers Variation was also accounted for by local models of care whereby conservative care patients were not considered for the register as it was assumed they were approaching end of life For most units dialysis patients were the majority of patients on their register

7 Once a patient is included on the Cause for Concern Register do any of the following occur

Yes No Donrsquot know

Assessment of care needs by renal team 18 0 0

Place patient on primary care CfC register 10 5 3

Referral for assessment by social worker 7 10 1

Referral for assessment by psychologist 9 8 1

Advance care planning 16 0 2

Use of Preferred Priorities for Care 6 9 3

documentation

Discussion around preferred place of death 14 3 1

Support for families and carers 17 1 0

Care needs documented on GP Gold 7 3 8

Standards Register or equivalent

Other (please specify) 10

In the ldquootherrdquo section a number of units commented that some of the actions do take place but not routinely because the wishes of the individual patient are respected The palliative care team may initiate the actions in some units so they are not directly linked to the Cause for Concern registration Units also commented that although they request that a patient be placed on the GP register they have no method of knowing whether this has taken place

48

8 How is palliative care integrated into your local renal service

The responses to this question were free text but the main points emerging are

bull 13 units reported they have good integrated links with palliative care physicians andor nurses

bull Three units indicated that they had links with local Macmillan services

bull One unit had a poor relationship with palliative care services but was able to access Macmillan services

bull One unit accessed palliative care services when a specific need was identified

APPEN

DICES

The responses to questions 9 and 10 indicate differences across the country in whether patients are consented prior to going on the register and knowing that they have been placed on it The ldquoOtherrdquo responses included verbal consent

49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)

10 Is full informed consent obtained before placing the patient on the register

8

6

4

2

0

Number of Units

The majority of units send letters to the patientsrsquo GP to inform them of their end of life care status and one unit is working towards a shared electronic register

11 How do you ensure that a patientrsquos General Practitioner is made aware of their end of life status in order to include them on their Gold Standards FrameworkPalliative Care Register

(Please tick all that apply)

18

16

14

12

10

8

6

4

2

0

Number of Units

50


bull A pathway is being developed

bull Documentation to support staff is used

bull A suitable pathway is being assessed

Less than a third of responding units reported having a formal pathway

12 Does your unit have a formal Cause for Concern end of lifepalliative care integrated pathway for patients placed upon the cause for concern register

Number of Units

Yes there is a formal pathway 7

No there is no formal pathway 5


13 Please briefly describe current triggers for advanced care planning with patients and at what stage preferred priorities for care discussions are held with the patientcarer and by whom What is being recorded in your database to indicate that discussions have taken place

Few units responded to this question (6) but the start of conservative care and or increased frailty was quoted by some

APPEN

DICES

51

Yes

No

Donrsquot

know

14 Does your renal unit link to an End of Life Care locality register (A locality register is a dataset facility that enables the key information about and individualsrsquo preferences for care at the end of life to be recorded and accessed by a range of services For example this would allow access to a patientrsquos stated end of life preferences to medical nursing and paramedic staff who might be called to attend them in the community out-of-hours The ultimate aim is to improve co-ordination of care so that end of life care wishes can be better adhered to and more patients are able to die in the place of their choosing and with their preferred care package)

25

20

15

10

5

0

Number of Units

Only one unit has links with their End of Life care locality register

52

Conclusions and recommendations

1The survey indicated that at least 18 (29) units in England either have established a Cause for Concern register or are in the process of setting one up More work is needed to ensure that all units have a register in place

2Methods of identifying patients for the register vary across units but the surprise question and patients wanting to stop treatment are the most commonly used and could be adopted by units which have not yet set up a register as initial triggers

3Some units report recording the Cause for Concern register in spreadsheets or local documents It is important that units work towards ensuring all staff who may be in contact with the patient are aware of the registration

4There are wide differences in the actions that are triggered when a patient is registered The framework1 recommends that the register is used to facilitate care planning and review by MDT teams Although this is happening in some units it is not in all and may be an area for improvement for kidney centres

5The use of the register is also intended to facilitate communications with primary care and although units do inform primary care about registration they have difficulty establishing whether the patient is placed on the relevant primary care register Projects funded by NHS Kidney Care are starting that will support units to improve links with primary care

6The level of linkage with palliative care services varied across the units and may reflect local availability Funding for palliative care services was not explored in the survey but may also influence the possibility for linkage The registration of patients may become particularly important if the Palliative Care Funding Review2 is adopted because it suggests that once a patient is on a register funding will follow

7Approximately a third of respondents indicated that they had a formal pathway for patients on the register Increasing importance will be placed on pathways with the introduction of Kidney QIPP

8It is recommended that the survey is repeated in a yearrsquos time to establish whether more registers are in place whether links with primary care have improved and what progress has been made with setting up pathways for end of life care

References

1 NHS Kidney Care End of Life care in Advanced Kidney disease A framework for Implementation

2 httppalliativecarefundingorgukwpshycontentuploads201106PCFRFinal20Reportpdf

APPEN

DICES

53

2009

Appendix 5 shy My wishes Advance care planning document developed by Salford Royal NHS Foundation Trust (stylised version)

We want to provide the best possible care for all our patients and their carers To do this we need to know more about what is important to you and what your needs and preferences are for your care

This document is called a care plan and gives you the opportunity to be involved in the decision making process around your care needs The care plan will involve having a conversation with your doctor and or your kidney nurse to help you have your say in what is important to you and your family carers

The care plan will be reviewed and is flexible and adaptable to changing needs It will also give you the opportunity to think ahead and can be an aid to help you document what is important to you If we are aware of your thoughts and preferences this means we can be more active in providing care you want in the place you want to be For some kidney patients this may involve planning for the end of their life This may be difficult to discuss and is often an emotional time for patients and their carers however as your kidney care team we can help and support you and your carers with this discussion

This care plan is not a ldquolegally bindingrdquo document however once your wishes are documented these can be taken into account by the doctors and nurses As the patient this is your document and as such can remain with you at all times The kidney team will with your permission keep a copy of the document so we can ensure all members of the team can take your wishes into account when planning your care

You can take this document home before discussing with a member of the kidney team This means you can have some time to discuss your wishes with your family and friends You may wish not to fill in this care plan at the current time and this is perfectly acceptable and will not affect your care in any way

Below are some examples of things you may wish to discuss with the kidney team Please feel free to write down other issues important to you that we have not included

What happens if I stop dialysis

My treatment choices

What happens if Diet and fluid my fistula fails

What happens if I choose not to Medicines have dialysis

My kidney disease

Changing my type of dialysis

Where I want to be cared for at

the end of my life

How many years can I be on dialysis

54

What makes you content at this time in your life


What elements of care are important to you and what would you like to happen to you in the future

What would you NOT want to happen in the future Is there anything that you worry about or fear happening

Preferred place of care If your condition deteriorates where would you like most to be cared for

1

2

Do you have any special requests preferences or other comments

Are there any comments or additions from other people you are close to (Please name)

Date completed Those present

APPEN

DICES

55

Appendix 6 shy Thinking Ahead An advance care planning document developed by Central Manchester University Hospitals NHS Foundation Trust (stylised version)

We want to provide the best possible care for all our patients and their carers To do this we need to know more about what is important to you and what your needs and preferences are for the future

This document is called a care plan and gives you the opportunity to be involved in the decision making process around your care needs The care plan will involve having a conversation with your doctor and or your kidney nurse to help you have your say in what is important to you and your carers

The care plan will be reviewed and is flexible and adaptable to your changing needs

This care plan will also give you the opportunity to think ahead and can be an aid to help you document what is important to you If we are aware of your thoughts and preferences this means we can be more active in providing the care you want in the place you want to be For some kidney patients this may involve planning for the end of their life This may be difficult to discuss and is often an emotional time for patients and their carers however as your kidney care team we can help and support you and your carers with this discussion

This care plan is not a ldquolegally bindingrdquo document however once your wishes are documented these can be taken into account by the doctors and nurses As the patient this is your document and as such can remain with you at all times The kidney team will with your permission keep a copy of the document so we can ensure all members of the team can take your preferences into account when planning your care

You can take this document home before discussing with a member of the kidney team This means you can have some time to think about your preferences and discuss these if you wish with your family and friends You may wish not to fill in this care plan at the current time and this is perfectly acceptable and will not affect your care in any way


Where I want to What happens if What happens if My kidney

Diet and fluid be cared for at I stop dialysis my fistula fails disease the end of my life

What happens if How many My treatment Changing my

I choose not to Tablets years can I be choices type of dialysis

have dialysis on dialysis

56

Address

Patient name

DOB - Hospital NHS number

Date completed

Hospital contact

GP details

Name

Family members involved in Advanced Care Planning discussions

Contact telephone

Name of healthcare professional involved in Advanced Care Planning discussions

Patient signature Date

Next of kin carer signature (if present) Date

Healthcare professional signature Date

Role Contact telephone




Review date Date

APPEN

DICES

57

What makes you happy at this time in your life

In relation to your health what has been happening to you recently



What family support do you have

Are your family aware of your wishes regarding your treatment

58

If your condition deteriorates where would you most like to be cared for

1

2

Preferred place of care



Do you have a Living Will or Legal Advanced Decision document (This is in keeping with the new Mental Capacity Act and enables people to make decisions that will be useful if at some future stage they can no longer express their views themselves) No Yes if yes please give details (eg who has a copy)

5 Proxy next of kin Who else would you like to be involved if it ever becomes difficult for you to make decisions or if there was an emergency Do they have official Lasting Power of Attorney (LPoA)

Contact 1 Telephone LPoA Y N Contact 2 Telephone LPoA Y N

APPEN

DICES

59

Appendix 7 shy Checklist developed by Greater Manchester Project Group to ensure coshyordination of care initiatives

Advancing disease 1

Consider Gold Standards Framework (GSF) Supportive Care Register inform patient

Increasing decline 2 Withdrawl of dialysis

Ensure patient on Review Do Not Gold Standards Attempt Resuscitation Framework (GSF) (DNAR) status Supportive Care Register inform patient

On-going assessment and discussion at Check for Advance C For C MDT Care Planning

Letter to GP and DN Letter to GP and DN Review ceilings of

Consider referral to care and document

Referral to Palliative Palliative care services care services

District Nursing Team District Nursing Team Commence Care of ref Contact ref Contact Dying pathway

(Renal Version)

Identify Renal Key Identify Renal Key Worker Name Worker Name

Renal follow up Preferred Priorities for Referral to arrangements OPA Care (offered) community MDT unit review Date Macmillan services

PPC completed declined

ldquoMy Wishesrdquo ldquoMy Wishesrdquo Inform GP documentrsquo documentrsquo Date Date My wishes My wishes completed declined completed declined

Advance Decision to Advance Decision to Out of Hours GP Refuse Treatment Refuse Treatment Service (Leaflet given) (Leaflet given)

Lasting Power of Lasting Power of Referral to District Attorney Attorney Nursing Team (Leaflet given) (Leaflet given)

Complete DS1500 Complete DS1500 Evening District Report Report Nurses

Review transplant Renal follow up Record pre- listing arrangements bereavement

concerns

Referral to psychology Referral to psychology MDT meeting services with patient services with patient patient and significant agreement agreement others Consider Referred declined Referred declined inviting DN not referred not referred Macmillan services Date Date

Review dialysis Review dialysis prescription prescription Date Date

Last days of life Bereavement

Liaise with Macmillan Offer Bereavement teams hospital Leaflet What to community do After a Death

Booklet

Commence Care of Bereavement card the Dying Pathway OR

Commence Rapid Communication Discharge Pathway with GP for the Dying

Pre-emptive prescribing of all 4 Care of the Dying Pathway drugs

Discuss with DN team Contacts

Ensure community teams have renal services 24 hour contact

60

Appendix 8 shy Resources included in Kingrsquos Health Partners Toolkit

bull Guidance on applying the surprise question and other predictors to identify patients as suitable for the GOLD Register

bull Symptom and quality of life assessment tools ndash the Palliative care Outcome Scale ndash symptom module (renal version) and the EQ5D quality of life measure

bull A summary of evidence on prognosis survival and outcomes in endshystage renal disease

bull Symptom management guidelines

bull The Liverpool Care Pathway including guidelines for managing symptoms in the last days of life in renal patients

bull Written information for patients with endshystage kidney disease and their family carers on symptoms treatment and help available ndash conservative care pathway

bull Written information for patients with endshystage kidney disease and their family carers on symptoms treatment and help available ndash dialysis patients

bull Examples of advanced care plan documents with advice sheet on how to fill them in

bull Guide to GOLD ndash information for professionals on having conversations with patients identified as suitable for the GOLD Register

bull Information on bereavement and local bereavement services

bull Information on local hospices with their relevant leaflets

bull Information of our local Macmillan Information and Support Centre for patients and families with advanced disease plus information prescriptions (a system used locally to ldquoprescriberdquo information when required according to the individual patient and family needs)

bull Contact numbers and referral forms for local community hospice hospital palliative care teams

APPEN

DICES

61

Appendix 9 shy Training Needs Analysis Questionnaire from Greater Manchester Kidney Network End of Life Project

1 Which area of Renal Services do you work in

Community PD

Salford H

Satellite HD

Wards

CKD Vascular Access Outpatients

Transplant Home Training Team

What is your job role

What grade band are you

How long have you worked in this role

bull If you answered YES to either of these questions please go to question 4

2 In your opinion how much of your time is spent involved in caring for patients in the following

Last year of life Last days of life

Never

Rarely ndash Under 25

Sometimes ndash 50

Often ndash 75

Always ndash 100

3 Have you had any education training in Communication Skills or End of Life Care (Please circle)

Communication Skills Yes No

End of Life Care Yes No

bull If you answered NO to both of these questions please go to question 6

62

4 Please provide details of any accredited recognised Communication Skills or End of Life Care courses training you have attended

Course 1 Course 2

Name of course

Provider (who delivered the training)

Level of Study

Who funded the training

Credits or awards granted Year course completed

5 Please provide details of any non-accredited unrecognised Communication Skills or End of Life Care courses training you have attended

Course 1 Course 2

Name of course


Induction In-house training external training

Length of course

How was training delivered eg classroom role play etc

Year course completed

6 Have you had an opportunity to identify your Communication Skills training needs or End of Life Care training needs via your appraisal with your line manager

End of Life Care


Yes No

7 Do you think Communication Skills training or End of Life Care training would be beneficial to your role

End of Life Care


Yes No

APPEN

DICES

63

8 Do you as an individual provide Communication Skills or End of Life Care training



9 Please complete the following competency level descriptors in the table below

Please indicate with an X whether you are already competent and have the skills and knowledge whether it is an area you require further training or if it is not applicable to your role

Description of Already Training Not Competency Competent Required Applicable

Confidently recognise the emotional needs of patients families and carers

Confidently respond in a flexible and sensitive manner to the emotional needs of patients

families and carers

Give basic patient carer information and support in a flexible manner across a range of

situations to support choice

Confidently negotiate with patients families and carers in relation to their needs and care

Resolve communication problems raised by patients families and carers

Able to discuss key information with patients families and carers and refer appropriately to

other health and social care professionals and agencies

Use a wide range of communication skills to address complex needs of patient

families and carers

64

10 Are you aware of the following End of Life Care Tools

Yes No

Gold Standards Framework (GSF)

Liverpool Care Pathway (LCP)

Advance care planning eg Preferred Priorities for Care

11 In relation to these tools are you able to use the following confidently

Yes No




APPEN

DICES

65

12 Discussions as the end of life approaches

One of the key aims of the End of Life Strategy is to ensure that services provided to people coming to the end of their lives are responsive to their needs

NeitherDescription of Competency

Strongly Disagree Disagree disagree

or agree Agree Strongly

Agree

Are you confident to discuss with a patient their care plan for their needs 1 2 3 4 5 NA

and preferences at the end of life

I always speak to families and ensure they understand that the patient 1 2 3 4 5 NA

is reaching the end of their life

Do not attempt resuscitation (DNAR) decisions are always discussed with the patient 1 2 3 4 5 NA

Do not attempt resuscitation (DNAR) decisions are always discussed 1 2 3 4 5 NA

with the patients families

66

13 Assessment Care Planning amp Review

The End of Life Strategy emphasises the importance of the need for holistic assessment covering the full range of physical psychological social spiritual cultural religious and where appropriate environmental needs

NeitherDescription of Strongly Strongly Disagree disagree Agree Competency Disagree Agree or agree

I always give patients information and involve them in decisions about 1 2 3 4 5 NA treatments prescribed for them

I always give patients the opportunity 1 2 3 4 5 NA to talk about their preferred place of care

In the event of the need for a patient to be rapidly discharged elsewhere to die 1 2 3 4 5 NA I know where to access details of the

contact person(s) to facilitate this transfer

I always recognise the spiritual emotional 1 2 3 4 5 NA and religious needs of the individual

I always offer access to pastoral and or spiritual care to patients at the 1 2 3 4 5 NA

end of their life

I always take carers views into account 1 2 3 4 5 NA

I believe I have an integral part to play in coordinating care for patients 1 2 3 4 5 NA

with end of life care needs

14 In relation to the above question what issues may prevent you from delivering this care

Yes No

Workload

Time restraints

Support from managers

Environment

APPEN

DICES

67

15 Care in Last days of life

The way we care for the dying is an indicator of how we care for all our sick and vulnerable patients The End of Life Strategy recognises the acute hospital plays an important role within care of the dying


I can recognise when someone is dying 1 2 3 4 5 NA

I am confident in discussing withdrawal of active treatment with the 1 2 3 4 5 NA

multidisciplinary team

The multidisciplinary team always recognise when someone is dying 1 2 3 4 5 NA

I am confident in using the Integrated Care Pathway for the dying patient 1 2 3 4 5 NA

I recognise and understand how to provide End of Life care for both the patients and 1 2 3 4 5 NA

their families

16 Care after death

The End of Life Strategy highlights the importance of joined up working and effective communication between all services involved


I am confident in liaising with the many diverse service providers 1 2 3 4 5 NA

I am able to provide the right written information to give to relatives and I am able to explain the information verbally

1 2 3 4 5 NA

i am confident in performing last offices 1 2 3 4 5 NA

17 Do you have any other comments are there any other areas you would like to see addressed as part of the End of Life Project

68

Appendix 10 shy Renal Sage and Thyme communication course evaluation (Central

Manchester Foundation Trust) PreshyCourse Data collection

Q1 How confident do you feel in communicating effectively with patients and colleagues

Not at all confidentshy0

Not very confidentshy5

Some confidenceshy11

Fairly confidentshy66

Very confidentshy18

Q2 How much do you feel you know about communication skills

Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10

Immediately post CourseshySage + Thyme evaluation Form

As a result of the training I have done today I feel more confident to talk to people about their emotional troubles

Scores range of 10shyhighly agree to 1shy Disagree

10shyHighly agreeshy41

9shy41

8shy15

6shy3

5 to 1shy0

As a result of the learning I have done today I feel more willing to talk to people who are emotionally troubles


10 shyHighly Agreeshy41

9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69

How likely is this training to influence your practice

Scores range of 10shyvery much to 1shy not at all

10 Very muchshy76

9shy15

8shy9

7 to 1shy0

Did the facilitator create a safe environment


10 shyvery muchshy75

9shy25

8 to 1shy0

As a result of the learning i have done today i am more likely to

Listen

Focus on the conversationperson

To follow model

Allow the patient to inform ME of how I could help

Effectively and efficiently deal with situations that may arise

Ask the question and summarise

Not always presume there is a problem

Communicate and problem solve with confidence

Not jump in and feel i need to solve everything

Ensure i have gathered the patients concerns

I feel more equipped with skills to help patients solve their own problems BUT with my help

Use the structure to help distressed patients

Empower patients

Feel confident to allow patients to help themselves with my help

70

As a result of the learning i have done today i am less likely to

Go off focus when dealing with stressful patient situations

Allow the patient to investigate how i can help

Spend long periods in stressful situationsshyuse model

Assure i know what a patients main concerns are

More aware of the need for ME not to lsquofixrsquo everything for the patients

Wade in and try to solve all the problems

lsquoFixrsquo things myself and then miss the main concerns of the patient

Avoid conversations with difficult patients

Ignore patient problems have confidence to go in and open discussion

Would you recommend the training to a colleague

Yesshy100

APPEN

DICES

71

Appendix 11 shy The Prepared Acronym

Prepare shy Prepare for the discussion where possible 1) confirm diagnosis and investigation results before initiating discussion 2) try to ensure privacy and uninterrupted time for discussion 3) negotiate who should be present during the discussion

Relate to person shy Relate to the person 1) develop rapport 2) show empathy care and compassion during the entire consultation

Elicit preferences shy Elicit patient and caregiver preferences 1) identify the reason for this consultation and elicit the patientrsquos expectations 2) clarify the patientrsquos or caregiverrsquos understanding of their situation and establish how much detail and what they want to know 3) consider cultural and contextual factors influencing information preferences

Provide information shy Provide information tailored to the individual needs of both patients and their families 1) offer to discuss what to expect in a sensitive manner giving the patient the option not to discuss it 2) pace information to the patientrsquos information preferences understanding and circumstances 3) use clear jargon free understandable language 4) explain the uncertainty limitations and unreliabiloty of prognostic and endshyofshylife information 5) avoid being too exact with timeframes unless in the last few days 6) consider the caregiverrsquos distinct information needs which may require a seperate meeting with the caregiver (provided the patient if mentally competent gives consent) 7) try to ensure consistency of information and approach provided to different family members and the patient and from different clinical team members

Acknowledge emotions shy Acknowledge emotions and concerns 1) explore and acknowledge the patientrsquos and caregiverrsquos fears and concerns and their emotional reaction to the discussion 2) respond to the patientrsquos or caregiverrsquos distress regarding the discussion where applicable

Realistic hope shy Foster realistic hope (eg peaceful death support) 1) be honest without being blunt or giving more detailed information than desired by the patient 2) do not give misleading or false information to try to positvely influence a patientrsquos hope 3) reassure that support treatments and resources are available to control pain and other symptons but avoid premature reassure 4) explore and facilitate realistic goals and wishes and ways of coping on a dayshytoshyday basis where appropriate

Encourage questions shy Encourage questions and further discussions 1) encourage questions and information clarification to be prepared to repeat explanations 2) check understanding of what has been discussed and if the information provided meets the patientrsquos and caregiverrsquos needs 3) leave the door open for topics to be discussed again in the future

Document shy Document 1) write a summary of what has been discussed in the medical record 2) speak or write to other key health care providers involved in the patientrsquos care As a minimum this should include the patientrsquos general practitioner

Clayton JM Hancock KM Butow PN Tattersall MH Currow DC Adler J et al Clinical practice guidelines for communicating prognosis and endshyofshylife issues with adults in the advanced stages of a lifeshylimiting illness and their caregivers Medical Journal of Australia 2007 Jun 18186(12 Suppl)S77 S9 S83shy108

72

Appendix 12 shy Items adopted in each of the NHS Kidney Care pilot sites

Greater Greater Manchester Manchester

Data Item Bristol Guyrsquos London Site One Site Two

Patient surname Y Y Y Y Y

Patient forename Y Y Y Y Y

Date of birth Y Y Y Y Y

NHS number Y Y Y Y Y

Gender Y Y Y Y Y

Ethnic group

Pat address and tel no Y Y Y Y Y

Usual GP name Y Y Y Y Y

Practice details inc phone and fax Y Y Y Y

Key workercontact details (containing details of all professionals involved)

Y Y Y Y

Next of kin details or nominated person Y Y Y Y Y

Does the patient have professional care Y Y Y Y

Known to Specialist Palliative Care team Y Y Y Y

Specialist Palliative Care details Y Y Y Y

Other services professional involved Y Y Y Y

Primary and secondary diagnoses Y Y Y

Current medications and doses Y Y Y

Preferences for place of death Y Y Y Y

Actual place of death home care home hospital hospice other

Y Y Y Y

Date of death discharge (from where shyhospital hospice etc)

Y Y Y

EOLC tool in use (eg GSF LCP PPC Kite etc)

Y Y Y

Has a DNACPR request been made Y Y Y Y (inpatients)

Kidney care status (eg haemodialysis conservative care)

Date included on Cause for Concern register

APPEN

DICES

73

Appendix 13 shy Items adopted in each unit for the End of Life Care in Advanced Kidney Disease dataset The populations included in the analysis were be two separate subshypopulations of the pilot ESRD population in the collaborating centre ndash SET A and SET B

1 For the purpose of assessing the proportion of people who have a recorded ldquopreferred place of deathrdquo and then the proportion who died in that place the audit group was

ENTIRE pilot ESRD population in the collaborating centre will be included (SET A)

This allows an assessment of the overall success in EoL care planning in the ESRD population In addition it is likely that this is the approach which would be taken in any national audit of EoL in advance kidney disease done using a registry approach (via the NRD or the UKRR for example)

2 For the purpose of assessing the utility of the dataset as a whole and the completeness of the data the audit group was

Patients from the pilot ESRD population who have been formally added to the cause for concern register (SET B)

This did not therefore include any patients who have been screened as showing deterioration but in whom a shared decision is yet to be reached about inclusion on the register It likely undershyrepresents the total number of people identified as close to death but allows assessment of tightly defined group in whom date entry should be at its best

Audit questions

Question ONE Preferred and actual place of death pilot ESRD population (SET A)

1 What proportion of the pilot ESRD population (SET A) who died during the audit period

2 What proportion of those that died who had a record of their preferred place of death

3 What proportion of the pilot ESRD patients (SET A) who died expressing a preference for their place of death died in that place

4 Description of those who died and had a preferred place of death vs did not have preferred place of death by Age (gt=65 vs lt65yrs) Gender (M vs F) Ethnic group (White Black SE Asian Other) and inclusion on the ldquocause for concernrdquo register (Yes vs No) Small numbers will not allow split by multiple groups at once

74

Data items required

1 Total number of pilot ESRD patients in that centre at end audit period

2 Number of pilot ESRD patients in that centre who died during audit period

3 Number of pilot ESRD patients who died who had chosen as preferred place of death each of ldquohomerdquordquohospitalrdquo ldquohospicerdquordquootherrdquo or had made no choice

4 Number of each preference group in copy who died in their chosen setting

5 Number of pilot ESRD patients who died with a preferred place of death by each (in turn) of Age Gender Ethnic group inclusion on ldquocause for concernrdquo register as defined in section 4 above

6 Any nonshyidentifiable qualitative information about why c) and d) were not equal for individual patients during the audit period

Question TWO Of those patients on the unit register (SET B)

1 What proportion of the pilot ESRD population in the centre are present on the units register

2 Completeness of basic information in patients present on the register

Data items required

a) Total number of pilot ESRD patients in that centre at end audit period (as section (a) in question ONE above)

b) Number of pilot ESRD patients who have a recorded date for inclusion on the ldquocause for concernrdquo or similar register at end of audit period

c) Number of patients with details recorded of

a Key worker

b Does patient have professional care

c Known to specialist palliative care team

d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Reader Page

Title Getting it right End of life care in advanced kidney disease

Authors NHS Kidney Care and project teams at shy North Bristol NHS Trust shy Greater Manchester Managed Kidney Care Network a

partnership between Central Manchester University Hospitals Foundation Trust and Salford Royal NHS Foundation Trust

shy The Advanced Renal Care (ARC) project led by the Department of Palliative Care Policy and Rehabilitation at Kingrsquos College London and working across the kidney units at Kingrsquos College Hospital NHS Foundation Trust and Guyrsquos and St Thomasrsquo NHS Foundation Trust

Publication Date March 2012

Target Audience Commissioners kidney care community patients and patient associations primary care palliative care staff working with kidney services hospice staff

Circulation List Renal Unit Directors Renal Network Leads Specialised Commissioners Clinical Commissioning Groups General practitioners National Kidney Federation National End of Life Care Programme National Council for Palliative Care Other organisations working with kidney patients approaching end of life

Descriptionpurpose This document brings together the experiences and learning from three project groups that have been working over the last two years to implement the framework for end of life care in advanced kidney disease It also addresses the data items that are associated with managing end of life care

Cross Ref na

Superseded Docs na

Action Required na

Timing na

Contact details adminkidneycarenhsuk

Contents

Foreword 04








Acknowledgements 35


References 38

Appendices 40















CONTENTS

03

Foreword







Beverley Matthews

Director

NHS Kidney Care

04

Executive Summary















EXEC

UTIVE SU

MMARY

05

Recommendations
















06
















EXEC

UTIVE SU

MMARY

07

1 Introduction











Care after death







services









organ donation






bereavement support




08

2 The Framework











THE FRAMEW

ORK

09

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Contents

Foreword 04








Acknowledgements 35


References 38

Appendices 40















CONTENTS

03

Foreword







Beverley Matthews

Director

NHS Kidney Care

04

Executive Summary















EXEC

UTIVE SU

MMARY

05

Recommendations
















06
















EXEC

UTIVE SU

MMARY

07

1 Introduction











Care after death







services









organ donation






bereavement support




08

2 The Framework











THE FRAMEW

ORK

09

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Foreword







Beverley Matthews

Director

NHS Kidney Care

04

Executive Summary















EXEC

UTIVE SU

MMARY

05

Recommendations
















06
















EXEC

UTIVE SU

MMARY

07

1 Introduction











Care after death







services









organ donation






bereavement support




08

2 The Framework











THE FRAMEW

ORK

09

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Executive Summary















EXEC

UTIVE SU

MMARY

05

Recommendations
















06
















EXEC

UTIVE SU

MMARY

07

1 Introduction











Care after death







services









organ donation






bereavement support




08

2 The Framework











THE FRAMEW

ORK

09

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Recommendations
















06
















EXEC

UTIVE SU

MMARY

07

1 Introduction











Care after death







services









organ donation






bereavement support




08

2 The Framework











THE FRAMEW

ORK

09

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk
















EXEC

UTIVE SU

MMARY

07

1 Introduction











Care after death







services









organ donation






bereavement support




08

2 The Framework











THE FRAMEW

ORK

09

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

1 Introduction











Care after death







services









organ donation






bereavement support




08

2 The Framework











THE FRAMEW

ORK

09

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

2 The Framework











THE FRAMEW

ORK

09

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

3 Project groups













10











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk











PROJECT GRO

UPS

11





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk





















12












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk












LEARN

ING FORM

THE

PROJECT GRO

UPS

13









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk









14












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk












LEARN

ING FORM

THE

PROJECT GRO

UPS

15












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk












16










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk










LEARN

ING FORM

THE

PROJECT GRO

UPS

17






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk






















18







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk







LEARN

ING FORM

THE

PROJECT GRO

UPS

19






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk






Bereavement








20










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk










LEARN

ING FORM

THE

PROJECT GRO

UPS

21













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk













22







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk







LEARN

ING FORM

THE

PROJECT GRO

UPS

23











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk











24




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk




bull Assessment





LEARN

ING FORM

THE

PROJECT GRO

UPS

25

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

5 Recommendations
















26











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk











RECOMMEN

DATIONS

27







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk







28









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk









DATA

SET

29


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


Bristol






Kings


Guyrsquos



30















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk















DATA

SET

31














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk














32


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


Audit findings






Question One


28 13 34




12 5 2




5 11


12 5 6


9 5 6

Question Two




98 NA NA


NA NA


NA inform



DATA

SET

33

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Audit discussion



Recommendations







34

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Acknowledgements









ACKNOWLEDGEM

ENTS

35



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk



NSF

NEoLCP

SQ

POS-s

MDM MDT


EQ5D

NICE

Description













Refs 67

httppos-palorg


httpwwwniceorguk

36

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

















ABB

REVIATIONS

AND GLO

SSARY

37

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

References















38












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk












149F081


REFERE

NCES

39



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk



Date ____________________________ Name


Print Name _______________________ DOB




Walking

Climbing stairs

Bathing

Self Care


Pain

Shortness of breath


Itching



Mouth Problems

Poor Appetite

Bowel Problems

Drowsiness



Comments

40


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


Not at all 0

Slightly 1

Moderately 2

Severely 3

Overwhelming 4

Change in vision

Hearing

Speech


Children Child Care

Housing

Finances


Work



APPEN

DICES





10 9 8 7 6 5 4 3 2 1


Comments





41



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk



Name Unit No









42




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk




Measures Score

POS-S Renal

EQ-5D

Modified Kamofsky


Dementia

PVD

IHD


Albumin lt25mg dl

Other (specify)

0 1

0 1

0 1

0 1

0 1

0 1

Other information

Age lt65 65 - 75 lt75



APPEN

DICES


43











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk











Y ICP


44


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


Background










Method



Results



APPEN

DICES

45

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Uninte

ntional

weight l

oss

Seru

m al

bumim

lt25m

g dl

Require

s

In b

ed m

ore

mobilis

atio

n

than

50

of t

ime

Conserv

ative

man

agem

ent

gt 2 Non-e

lectiv

e

adm

issio

ns

Patie

nt has

expre

ssed a

Iden

tifica

tion b

y

GP (alr

eady

)

Surp

rise q

uestio

n

Other

(plea

se sp

ecify

)


Yes 15 625

No 6 25

Other 3 125



16

14

12

10

8

6

4

2

0

Number of Units






46


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


Yes 8

No 7

Some but not all 3

Donrsquot know 0


APPEN

DICES






47













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk













documentation







48







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk







APPEN

DICES


49

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Yes

No

Donrsquot

know

Via let

ter

Via em

ail

Via phone c

all

Via in

tegra

ted

health

care

reco

rd

Other

(plea

se sp

ecify

)


8

6

4

2

0

Number of Units




18

16

14

12

10

8

6

4

2

0

Number of Units

50







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk







Number of Units






APPEN

DICES

51

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Yes

No

Donrsquot

know


25

20

15

10

5

0

Number of Units


52










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk










References



APPEN

DICES

53

2009












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk












My kidney disease



the end of my life


54






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk






1

2




APPEN

DICES

55














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk














56

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Address

Patient name


Date completed

Hospital contact

GP details

Name


Contact telephone









Review date Date

APPEN

DICES

57







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk







58


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


1

2







APPEN

DICES

59


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


Advancing disease 1









(Renal Version)









concerns





Booklet






60















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk















APPEN

DICES

61



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk



Community PD

Salford H

Satellite HD

Wards









Never


Sometimes ndash 50

Often ndash 75

Always ndash 100





62


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


Course 1 Course 2

Name of course


Level of Study




Course 1 Course 2

Name of course



Length of course




End of Life Care


Yes No


End of Life Care


Yes No

APPEN

DICES

63









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk









families and carers








families and carers

64


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk


Yes No





Yes No




APPEN

DICES

65






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk






Agree








66










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk










end of their life





Yes No

Workload

Time restraints


Environment

APPEN

DICES

67










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk










their families

16 Care after death





1 2 3 4 5 NA



68








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk








Very confidentshy18


Nothing at allshy0

Not very muchshy2

A little bitshy33

Quite a lotshy55

A great dealshy10





9shy41

8shy15

6shy3

5 to 1shy0




9shy40

8shy16

6shy3

5 to 1shy0

APPEN

DICES

69



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk



10 Very muchshy76

9shy15

8shy9

7 to 1shy0




9shy25

8 to 1shy0


Listen


To follow model










Empower patients


70












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk












Yesshy100

APPEN

DICES

71











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk











72








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk








Gender Y Y Y Y Y

Ethnic group





Y Y Y Y










Y Y Y Y


Y Y Y


Y Y Y




APPEN

DICES

73








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk








Audit questions






74

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

Data items required










Data items required




a Key worker



d EoLC tool in use

APPEN

DICES

75

wwwkidneycarenhsuk

wwwkidneycarenhsuk

getting it right: end of life care in advanced kidney disease

Health & Medicine