planning for future care guidance (adult): advance care ......planning for future care guidance...

Planning for Future Care Guidance (Adult): Advance Care Planning, ADRT & DNACPR

CESC//2016/241 Review Date November 2018 of 47

United Lincolnshire Hospital NHS Trust Lincolnshire Community Health Services

St Barnabas Lincolnshire Hospice Macmillan Cancer Support

Marie Curie Care Lincolnshire Partnership Foundation Trust

Lincolnshire CCGs

Planning for Future Care Guidance (Adult):

Advance Care Planning, Advance Decisions to Refuse Treatment & DNACPR

Reference No: / Policy No: CESC/2016/241 (formerly CESC/2014/132 and CESC/2012/075)

Version: 3.0

Ratified by: Clinical Effectiveness Steering Committee

Date ratified: 9 November 2016

Name of author: Anna Chippendale Pringle, Sarah Ward, Cheryl Kern, Emma Warner, Laurissa Beighton, Lesley Storey

Name of Contributor Dr Martin Latham, Jane Unwin,

Bromhead Care Home Liaisons service

Name of responsible committee/individual:

Lincs and Borders Palliative and End of Life Care Group & Countywide Macmillan Nurse Specialist Group

Date Approved by committee/individual: 9 November Clinical Effectiveness Steering Committee

Date issued: November 2016

Review date: November 2018

Target audience: Practitioners involved in advance care planning discussions in Lincolnshire

Distributed via: Website



Lincolnshire and Borders Countywide

Planning for Future Care Guidance (Adult): Advance Care Planning, Advance Decisions to Refuse Treatment and DNACPR

Version Control Sheet

Version Section/Para/Appendix

Version/Description of Amendments

Date Author/Amended by

1 New Updated guidelines April 2014 Anna Pringle, Louise Lee , Clare Fryer, Matthew Donnelly, Gill Homden

2 Appendix3 Additional ULHT DNACPR Form

Sept 2013 Anna Pringle, Louise Lee , Clare Fryer, Matthew Donnelly, Gill Homden

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Appendix 3

Updated Decision making framework

May 2016 Laurissa Beighton

4 Appendix 4 New DNACPR form May 2016 Laurissa Beighton

5 Section 6 update May 2016 Laurissa Beighton

6 Throughout policy

Minor amendments and simplification of text throughout

August 2016 Sarah Ward, Anna Chippendale Pringle, Emma Warner, Lesley Storey, Cheryl Kern, Dr Martin Latham.

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Contents Page

i. Version control sheet ii. Policy statement 4 iii. Advance Care Planning – quick reference guide 5

Section Page

1 Introduction 6

2 Care Planning 6

3 Advance care Planning (ACP) 7

3.1 What issues might advance care planning include? 7

3.2 Key principles of ACP 8

3.3 The differences between general care planning and

decisions made in advance 10

4 Making an advance statement (Advance Care Plan) 11

5 Making an advance decision to refuse treatment (ADRT) 11

5.1 A Quick Summary of the Mental Capacity Act (2005)

Code of Practice 12

5.2 ADRT Forms 13

5.3 Deciding whether an advance decision is valid 14

5.4 An Advance Decision check list 15

6 Making a Do Not Attempt Cardiopulmonary Resuscitation

decision 16

6.1 Unified Regional Principles intent 16

6.2 Purpose 16

6.3 Process 17

6.4 Review 18

6.5 Cancellation of a DNACPR Decision 18

7 Appointment of a Lasting Power of Attorney (LPA) 18

8 End of life care competencies 18

9 Additional information 19

10 References 19

Appendix 1 Thinking Ahead – Advance Care Plan

Appendix 1a Anticipatory Care Plan

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Appendix 2 NEOLCP ADRT Form 34

Appendix 3 DNACPR Decision Framework 38

Appendix 4 DNACPR Form 39

Appendix 5 Deactivation of ICD in EoL Care Leaflet 41

Appendix 6 Equality Analysis 46



Policy Statement Background

The purpose of this guidance document is to support staff involved with care planning and decision making for people with life limiting condition.

Statement

This guidance supports patients and staff to make individual decisions and to ensure patients’ wishes and decisions about their care and treatment are considered and respected.

Responsibilities

Compliance with the guidance will be the responsibility of all health care staff caring for adults in hospitals, residential/respite settings or in the patient’s own home. This guidance will be referred to as a best practice guidance to be applied by providers.

Training

It is the responsibility of each individual registered practitioner to ensure they keep up to date with this aspect of care. There is access to face to face training locally and on line training packages are also available nationally.

Dissemination

A copy of this guidance will be available for all staff on the trust intranet sites or www.EOL website. Ward, department and service leads will be responsible for ensuring relevant information is cascaded to all clinical staff in their area.

Resource implication

Identification of choices and preferences can lead to an increased sense of control and enhanced quality of life. It can assist people to remain in their home or normal residence if this is their preference.

Consultation

Countywide Macmillan Nurse Specialist Group ULHT Named Nurse Safeguarding Adults & Mental Capacity LCHST Resuscitation Lead Lincolnshire Palliative and End of Life Care Collaborative Forum ULHT Professional Standards Board LCHST nursing teams via Operational Leads St Barnabas Marie Curie Lincolnshire CCGs



Advance Care Planning – quick reference guide

Patient Information

Planning for your future care: A Guide

Useful patient information booklet available from the National End of Life Care Program Available at

http://www.nhs.uk/livewell/endoflifecare/documents/planning_your_future_care%5B1%5D.PDF http://www.nhs.uk?Planners?end-of-life-care?Pages/why-plan-ahead.aspx

Macmillan Your life and Your Choices: Plan Ahead: https://be.macmillan.org.uk/be/p-20337-your-life-and-your-choices-plan-ahead-england-and-wales.aspx

Advance Care Plan (ACP) (advance statement/wishes)/ anticipatory care plan

Use Lincolnshire ‘Thinking Ahead – ACP’ form or patients own

Form is a patient held record but should be shared with their consent

Not legally binding but must be considered as part of best interests judgements

Capacity, care planning and advance care planning in life limiting illness guide available at: http://www.nhsiq.nhs.uk/resource-search/publications/eolc-ccp-and-acp.aspx http://www.nhsiq.nhs.uk/resource-search/publications/eolc-planning-for-future-care.aspx

Advance decisions to refuse treatment (ADRT)

Use ADRT form available at: http://www.nhsiq.nhs.uk/resource-search/publications/eolc-adrt.aspx Original stays with patient.

Share with consent to all involved in care: GP, keyworker, Out of Hours, relative/carer, consultant, CNS, hospice, other care agencies.

Legally binding, applies to all caring staff if valid and applicable

A guide for health and social care professionals available at: http://www.nhsiq.nhs.uk/resource-search/publications/eolc-planning-for-future-care.aspx

DNACPR

Use DNACPR form as per Trust/Unit Policy

Share with consent, copy in medical records/systmone, original stays with patient. Copy shared as per Trust/Unit policy

Principles and form apply to all in a caring capacity

www.emas.nhs.uk

www.ulh.nhs.uk

http://www.eolc.co.uk/uploads/Unified-DNACPR-PolicyV6Jan2016.pdf

Lasting Power of Attorney (health/welfare)

Registered with Office of the Public Guardian

Legally binding if registered with the office of the Public Guardian

Forms can be obtained from the Office of the Public Guardian:

www.publicguardian.gov.uk tel: 03004560300

http://www.nhs.uk/livewell/endoflifecare/documents/planning_your_future_care%5B1%5D.PDF

http://www.nhs.uk/livewell/endoflifecare/documents/planning_your_future_care%5B1%5D.PDF

http://www.nhs.uk/?Planners?end-of-life-care?Pages/why-plan-ahead.aspx

https://be.macmillan.org.uk/be/p-20337-your-life-and-your-choices-plan-ahead-england-and-wales.aspx

https://be.macmillan.org.uk/be/p-20337-your-life-and-your-choices-plan-ahead-england-and-wales.aspx

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-ccp-and-acp.aspx

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-ccp-and-acp.aspx

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-planning-for-future-care.aspx

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-planning-for-future-care.aspx

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-adrt.aspx

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-adrt.aspx

http://www.emas.nhs.uk/

http://www.ulh.nhs.uk/



http://www.publicguardian.gov.uk/



1 Introduction A number of policy initiatives have placed emphasis on enabling patient choice about their care, discussions around needs and preferences, information, and greater partnership working between health and social care for people approaching the end of life (DH 2001, DH 2005, DH 2006, DH 2007, DH 2008a, DH 2008b, DH 2010, DH 2011). In particular the National Institute for Clinical Excellence (NICE 2004) produced guidance for improving supportive and palliative care for adult cancer patients. Key areas recommended for improvement were assessment and discussion about a person’s physical, psychological, social, spiritual and financial support needs, and choice about treatment and services. The Mental Capacity Act (HMSO 2005) was implemented in 2007 and seeks to empower people to make decisions for themselves wherever possible, and protect people who lack capacity by providing a flexible framework that ensures individuals’ best interests must be the basis for the decision making process. The Act offers guidance on giving appropriate help and support to people making their own decisions, determining if people have mental capacity to make their own decisions and acting in someone’s best interests when they lack capacity. Capacity refers to the ability to make a decision about a particular issue at the time the decision needs to be made or to give consent to a particular act. This guidance has been developed to help staff involved in care planning and decision making for people with life limiting illness. In addition, staff should refer to their local safeguarding policies, The Mental Capacity Act (2005) and Deprivation of Liberty Safeguards (MCA DoLS). http://www.dca.gov.uk/menincap/bill-summary.htm with particular reference to the following sections:

Best Interests section 4

Acts in Connection with Care or Treatment section 5

Advance Decisions to Refuse Treatment sections 24 -26 2 Care planning Care planning encompasses the care of people with and without capacity to make their own decisions. It involves a process of assessment and person centred dialogue to establish needs, preferences and goals of care, and making decisions about how to meet these in the context of available resources. It can be focused towards meeting immediate needs, as well as predicting future needs and making appropriate arrangements or contingency plans to address these. Where a person lacks capacity to decide, care planning must focus on determining their best interests, through consultation with the person’s relatives, carers and key professional carers by making decisions to protect these. Any information about what the person’s views might have been about the issue at hand, and any relevant advance statement that they made prior to their loss of capacity, should be taken into account when trying to work out what is in their best interests.

http://www.dca.gov.uk/menincap/bill-summary.htm



3 Advance Care Planning (ACP) Advance care planning is a voluntary process of discussion and review to help an individual who has capacity to anticipate how their condition may affect them in the future and, if they wish, set on record choices about their care and treatment and / or an advance decision to refuse a treatment in specific circumstances, so that these can be referred to by those responsible for their care or treatment (whether professional staff or family carers) in the event that they lose capacity to decide once their illness progresses (NEOLCP 2011). The individual may wish to include family and friends in discussions. ACP can help a person with life limiting illness to consider clinical or personal arrangements for the future progression of their illness which are not specific to anticipation of loss of capacity. Not every person will wish to engage in advance care planning. Some people may experience negative outcomes from the process since it may challenge their coping style or bring to mind issues about their illness and their future which they are not ready to think about. Others are comfortable with such discussions but, should they lose capacity in the future, prefer to leave such decisions to their carers. 3.1 What issues might advance care planning include? An ACP discussion might include the individual’s preferences, wishes, beliefs, values and feelings about:

Personal goals or aspirations for care

Their illness and prognosis

The types of care or treatment that are available and their benefits, harms and risks

The types of decisions that may need to be made about their care and treatment in the future

Financial / funeral planning It is recommended that, with the individual’s agreement, discussions are documented, regularly reviewed, and communicated to key persons involved in their care. Under the terms of the Mental Capacity Act 2005, formalised outcomes of advance care planning might include one or more of the following:

1. Advance statements to inform subsequent best interests decisions 2. Advance decisions to refuse treatment which are legally binding if valid and

applicable to the circumstances at hand, which can include DNACPR orders. (Countywide version available at www.eolc.co.uk)

3. Appointment of Lasting Powers of Attorney (‘health and welfare’ and/or ‘property and affairs’).

4. Deactivation Implantable Cardioverter Defibrillator (ICD) (https://www.resus.org.uk) https://www.resus.org.uk/EasysiteWeb/getresource.axd?AssetID=835&type=Full&servicetype=Attachment (ICD Leaflet Appendix 5)

Not everyone will wish to make such records/decisions. Less formally, the person may wish to name someone whom they wish to be consulted if they lose capacity.

https://www.resus.org.uk/

https://www.resus.org.uk/EasysiteWeb/getresource.axd?AssetID=835&type=Full&servicetype=Attachment

https://www.resus.org.uk/EasysiteWeb/getresource.axd?AssetID=835&type=Full&servicetype=Attachment



These are only relevant to the care and treatment of a person once they have lost capacity to make decision(s) about the issues they cover. Staff should try to avoid a rigid, prescriptive or routinised approach to initiating and conducting advance care planning if harm is to be prevented to the person concerned. This can be achieved by using an open question style of dialogue, and considering appropriate timing, listening for cues to start discussions, and an appropriate environment in which to initiate advance care planning. It is recommended that practitioners introduce the concept of ACP to patients and carers with the use of the information booklet ‘Planning For Your Future Care – a guide’ (NEOLCP) to prompt discussions about ACP and support verbal information given (available from: http://www.nhs.uk/livewell/endoflifecare/documents/planning_your_future_care%5B1%5D.pdf Available in other languages as follows: http://webarchive.nationalarchives.gov.uk/20130718121128/http://endoflifecare.nhs.uk/search-resources/resources-search/publications/planning-for-your-future-care-bengali-edition.aspx http://webarchive.nationalarchives.gov.uk/20130718121128/http://endoflifecare.nhs.uk/search-resources/resources-search/publications/planning-for-your-future-care-punjabi-edition.aspx http://webarchive.nationalarchives.gov.uk/20130718121128/http://endoflifecare.nhs.uk/search-resources/resources-search/publications/planning-for-your-future-care-polish-edition.aspx http://webarchive.nationalarchives.gov.uk/20130718121128/http://endoflifecare.nhs.uk/search-resources/resources-search/publications/planning-for-your-future-care-mandarin-edition-(1).aspx 3.2 Key principles of ACP

1. Effective communication, carried out with compassion and sensitivity, is fundamental to the process of providing good quality person centred care towards the end of life.

2. Care planning is the first step in making care and treatment decisions for a person with life limiting condition, irrespective of their capacity to participate or to decide.

3. A person’s participation in care planning (including advance care planning) is voluntary.

4. If a person with capacity chooses not to participate in care planning, their adequately informed consent must be gained in relation to any decisions about their care or treatment that result from care planning. Only a person with capacity who chooses to do so can take part in advance care planning.

5. There is a balance between the duty of providing the information a person wants or needs to ensure their adequately informed consent and over burdening a person with too much information.

6. The care provider may respond to ‘cues’ which indicate a person’s desire to make specific wishes or concerns known, e.g. worries about who will care for them.

http://www.nhs.uk/livewell/endoflifecare/documents/planning_your_future_care%5B1%5D.pdf

http://www.nhs.uk/livewell/endoflifecare/documents/planning_your_future_care%5B1%5D.pdf

http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/resources-search/publications/planning-for-your-future-care-bengali-edition.aspx



http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/resources-search/publications/planning-for-your-future-care-punjabi-edition.aspx



http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/resources-search/publications/planning-for-your-future-care-polish-edition.aspx



http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/resources-search/publications/planning-for-your-future-care-mandarin-edition-(1).aspx





7. Care and treatment decision-making by a person with life limiting condition requires that the individual has the capacity to understand, discuss options available and make decisions.

8. Where a person lacks capacity to decide, care planning must focus on determining their best interests and making decisions to protect these.

9. Any information given by an individual during any care planning discussion should be recorded and used correctly, with due reference to the Mental Capacity Act (2005).

10. Advance care planning is an aspect of care planning which can only be undertaken by a person who has capacity to decide. No pressure should be brought to bear by a health or social care worker, family or any organisation on the individual concerned to take part in advance care planning.

11. Should an individual with capacity wish to record choices about their care and treatment, or an advance decision to refuse treatment, in advance of losing capacity, they should be guided by a professional with appropriate knowledge and this should be documented according to the requirements of the Mental Capacity Act 2005.

12. Any choices or advance decisions to refuse treatment recorded in advance of loss of capacity only become relevant when a person loses the capacity to decide about those issues.

13. Where an individual has capacity to decide, then they must check and agree the content of any care planning record.

14. Staff should make or share records of any discussion only with the person’s permission or if, in the case of someone who lacks capacity, this is judged to be in their best interests.

15. The person concerned should be encouraged to regularly review any care planning documentation, to update this as appropriate, and to ensure that revisions are shared with those they wish to involve in their care.



3.3 The differences between general care planning and decisions made in advance

General Care Planning

Advance Care Planning (ACP) - advance statement

Advance Decisions to Refuse Treatment (ADRT)

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

What is covered? Can cover any aspect of current health and social care.

Can cover any aspect of future health and social care.

Can only cover refusal of specified future treatment. May be made as an option within an advance care planning discussion.

Only covers decision about withholding future CPR.

Who completes it? Can be written in discussion with the individual who has capacity for those decisions.

Or Can be completed for an individual who lacks capacity in their best interests.

Is written by the individual who has capacity to make these statements. May be written with support from professionals, and relatives or carers. Cannot be written if the individual lacks capacity to make these statements.

Is made by the individual who has capacity to make these decisions. May be made with support from a clinician. Cannot be made if an individual lacks capacity to make these decisions.

Completed by a clinician with responsibility for the patient. Patient consent is sought only if an arrest is anticipated and CPR could be successful. Can be completed for an individual who does not have capacity if the decision is in their best interests.

What does it provide? Provides a plan for current and continuing health and social care that contains achievable goals and the actions required.

Covers an individual’s preferences, wishes, beliefs and values about future care to guide future best interests decisions in the event an individual has lost capacity to make decisions.

Only covers refusal of future specified treatments in the event that an individual has lost capacity to make those decisions.

Documents either – that CPR would not be successful and should not be attempted – an individual’s advance decision to refuse CPR.

Is it legally binding? No – advisory only.

No – but must be taken into account when acting in an individual’s best interests.

Yes – legally binding if the ADRT is assessed as complying with the Mental Capacity Act and is valid and applicable. If it is binding it takes the place of best interests decisions about that treatment.

Yes – if it is part of an ADRT. Otherwise it is advisory only, i.e. clinical judgement takes precedence.

How does it help? Provides the multidisciplinary team with a plan of action.

Makes the multidisciplinary team aware of an individual’s wishes and preferences in the event that the patient loses capacity.

If valid and applicable to current circumstances it provides legal and clinical instruction to multidisciplinary team.

Makes it clear whether CPR should be withheld in the event of a cardiac or respiratory arrest.

Does it need to be signed and witnessed?

Does not need to be signed or witnessed.

A signature is not a requirement, but its presence makes clear whose views are documented.

For refusal of life sustaining treatment, it must be written, signed and witnessed and contain a statement that it applies even if the person’s life is at risk.

Does not need to be witnessed, but the usual practice is for the clinician to sign.

Who should see it? The multidisciplinary team as an aid to care.

Patient is supported in its distribution, but has the final say on who sees it.

Patient is supported in its distribution, but has the final say on who sees it.

Clinical staff who could initiate CPR in the event of an arrest.



4 Making an advance statement (Advance Care Plan) Although ACP does not always need to be in writing, patients should be advised that professionals involved in their care and members of their family may find it helpful if their wishes and preferences are in writing, and a copy of their wishes given to everyone who needs to know. Such statements of values, wishes, priorities or preferences about what is to be done should the person lose capacity at some point in the future must be taken into account as part of an overall best interests judgement, but are not legally binding. There are many different forms available nationally on which individuals may document their advance statements, and professionals should be aware that they may encounter differing formats in their practice. If a patient does not already have an Advance Care Plan and wants to document their wishes and preferences, the ‘Thinking Ahead – Advance Care Plan’ found in appendix 1 should be used. Although a patient should be advised to keep the original Advance Care Plan and ensure it is accessible at all times, consent should be requested to share a copy with all care providers involved in the patient’s care. Where electronic systems are in place you should scan the form on to the system and discussions should be recorded in the appropriate section of the palliative care template. Within ULHT, ACP discussions should be documented in the clinical records and a copy of the ACP form filed in the front of the medical notes. The patient should be encouraged to regularly review and update any Advance Care Plan and to ensure that revisions are shared with those involved in their care. Encourage patient to transfer wishes to recognised documentation. These documents must be sent with the patient if transferred to a different care setting with different care providers. 5 Making an advance decisions to refuse treatment (ADRT) Adults with capacity have the right to refuse any medical treatment, even if that refusal results in their death (Mental Capacity Act 2005, sections 24-26). Advance decisions to refuse treatment (ADRT) that meet all the requirements of the Mental Capacity Act will be legally binding on health and social care professionals. This makes ADRT quite distinct from other aspects of advance care planning. Professionals have a responsibility to ensure patients receive proper medical advice about the implications of their decisions. The Mental Capacity Act (2005) and Code of Practice clearly define that the responsibility for making an advance decision lies with the person making it. This guidance states the legal requirements necessary for any advance decision to be valid and applicable and provides commentary to help with the sometimes difficult task of assessing whether or not an advance decision is binding. It will often be helpful for the person to discuss their advance decision with a healthcare professional. If necessary this professional may give advice or support during this



process about how to make the advance decision and ensure that health and social care professionals are aware of it. This may also be an opportunity to discuss the person’s future care and treatment. 5.1 A Quick Summary of the Mental Capacity Act (2005) Code of Practice -

Advance Decisions to Refuse Treatment

An advance decision enables someone aged 18 and over, while still capable, to refuse life- sustaining treatment for a time in the future when they may lack the capacity to consent to or refuse that treatment. An advanced decision cannot be used to deny the provision of ‘basic care’ e.g. hygiene, food and fluid orally, however it can be used to deny artificial nutrition and hydration.

An advance decision to refuse treatment must be valid and applicable to current circumstances. If it is, it has the same effect as a decision that is made by a person with capacity: healthcare professionals must follow the decision

Healthcare professionals will be protected from liability if they: o stop or withhold treatment because they reasonably believe that an

advance decision exists, and that it is valid and applicable o treat a person because, having taken all practical and appropriate

steps to find out if the person has made an advance decision to refuse treatment, they do not know or are not satisfied that a valid and applicable advance decision exists

People can only make an advance decision under the Act if they are 18 or over and have the capacity to make the decision. They must say what treatment they want to refuse, and they can cancel their decision – or part of it – at any time

If the advance decision refuses life-sustaining treatment, it must: o be in writing (it can be written by someone else or recorded in

healthcare notes) o be signed and witnessed, and o state clearly that the decision applies even if life is at risk

To establish whether an advance decision is valid and applicable, healthcare professionals must try to find out if the person:

o has done anything that clearly goes against their advance decision o has withdrawn their decision o has subsequently conferred the power to make that decision on an

attorney, or o would have changed their decision if they had known more about the

current circumstances

Sometimes healthcare professionals will conclude that an advance decision does not exist, is not valid and/or applicable – but that it is an expression of the person’s wishes. The healthcare professional must then consider what is set out in the advance decision as an expression of previous wishes when working out the person’s best interests (see chapter 5 of the Code of Practice)

Some healthcare professionals may disagree in principle with patients’ decisions to refuse life-sustaining treatment. Whilst they do not have to act against their beliefs, they must ensure that arrangements have been made for another professional to take over their role.



Advance decisions to refuse treatment for mental disorder may not apply if the person who made the advance decision is or is liable to be detained under the Mental Health Act 1983

5.2 ADRT Forms There is no set form for written advance decisions because content may vary depending on a person’s wishes and situation. Many different forms are available nationally on which individuals may document their ADRT, and professionals should be aware that they may encounter these in their practice. If a patient does not already have an ADRT, the ADRT form should be downloaded from the National End of Life Programme website at: (Appendix 2). In cases where the person is making an advance decision to refuse life sustaining treatment it must be in writing and include:

Full details of person making the decision, date of birth, home address, distinguishing features

Name and address of GP

Who copies have been distributed to

Date written (and dates if reviewed)

Stating clearly the decision, the treatment to be refused and the circumstances in which the decision will apply. The statement “even if life at risk” should be included for each refusal

Can include medical / everyday language but it must be clear

Signed by the maker and witnessed and signed by the witness in the presence of the above person (witnessing the person’s signature is essential when a decision to refuse life-sustaining treatment is being made. The witness is witnessing the signature and the fact that it confirms the wishes set out in the advance decision)

Stating that the document is to be used if person lacks capacity (in introduction on current form)

The patient should be advised to keep the original document and ensure it is accessible at all times. Consent should be requested to share a copy with all care providers involved in the patient’s care. Where electronic systems are in use, the form should be scanned on to the system and discussions recorded in the appropriate section of the palliative care template. Within ULHT, ADRT discussions should be documented in the medical records and a copy of the ADRT form filed in the front of the medical notes. Anyone who has made an ADRT should be advised to review and update it if circumstances change, whilst they have capacity. Decisions made a long time in advance are not automatically invalid or inapplicable, but they may raise doubts when deciding if they are valid and applicable. 5.3 Deciding whether an advance decision is valid Health care professionals should assess whether an advance decision is valid and applicable and record their determination. It must be assessed in the circumstances



existing at the time the decision about treatment needs to be made. Events that would make an advance decision invalid include those where:

The person withdrew the decision while they still had capacity to do so

After making an advance decision, the person made a Lasting Power of Attorney (LPA) (Health) giving an attorney authority to make treatment decisions that are the same as those covered by the advance decision

The person has done something that clearly goes against the advance decision which suggests that they have changed their mind



5.4 An Advance Decision check list

Always assume the person has capacity to consent to or refuse treatment. You are required to maximise the person’s capacity and facilitate communication.

QUESTION ANSWER

Yes/No

1. Does the person have capacity to give consent to or refuse treatment him or herself, with appropriate support where necessary?

YES: The person has capacity to make the

decision him or herself. The advance decision is not applicable. Ask what s/he wants to do NO: Continue with check list

IS THE ADVANCE DECISION VALID? 2. Has the person withdrawn the advance

decision? (This can be done verbally or in writing)

YES: This is not a valid advance decision.

Make sure that you have identified and recorded the evidence that the person withdrew the advance decision. NO: Continue with check list

3. Since making the advance decision, has the person created a lasting power of attorney (LPA) giving anybody else the authority to refuse or consent to the treatment in question?

YES: This is not a valid advance decision. The

donee(s) of the LPA must give consent to or refuse the treatment. The LPA decision must be in the person’s best interests. NO: Continue with check list

4. Has the person done anything that is clearly inconsistent with the advance decision remaining his/her fixed decision?

YES: This is not a valid advance decision. It is

important to identify what the person has done, discuss this with anybody close to the person, explain why this is inconsistent with the advance decision remaining his/her fixed decision, and record your reasons. NO: The advance decision is valid. Continue

with the checklist.

IS THE ADVANCE DECISION APPLICABLE? 5. (a) Does the advance decision specify

which treatment the person wishes to refuse?* (b) Is the treatment in question that specified in the advance decision?

YES: to both (a) and (b): Continue with the

checklist NO: This is not an applicable advance decision

6. If the advance decision has specified circumstances in which it is to apply (see question 3 above), do all of those circumstances exist at the time that the decision whether to refuse treatment needs to be made? (N.B. It is possible for a person to decide that the advance decision should apply in all circumstances)

YES: Continue with the checklist NO: This is not an applicable advance decision

7. Are there reasonable grounds for believing that circumstances exist which the person did not anticipate at the time of making the advance decision and which would have affected his/her decision had s/he anticipated them?

YES: If such reasonable grounds exist, this will

not be an applicable advance decision. It is important to identify the grounds, discuss this with anybody close to the person, and identify why they would have affected his/her decision had s/he anticipated them, and record your reasoning. NO: Continue with the checklist

LIFE SUSTAINING TREATMENT

8.

Is the decision both valid and applicable according to the criteria set out above?

YES: Continue with the check list NO: This is not a binding advance decision to

refuse the specified life sustaining treatment

9.

In your opinion is the treatment in question necessary to sustain the person’s life?

YES: Continue with the checklist NO: This is a binding advance decision to

refuse the specified non-life-sustaining treatment. It must be respected and followed.



*NB It is encouraged that the persons own language is used (layman’s language) to specify both treatment and circumstances Further information on Advance Decisions to refuse treatment can be found at: http://www.ncpc.org.uk or visit the ADRT training website at http://www.adrtnhs.co.uk 6 Making a Do Not Attempt Cardiopulmonary Resuscitation decision Staff must adhere to the Unified Do Not Attempt Cardiopulmonary Resuscitation Policy (Adult) (DNACPR) 6.1 Unified Regional Principles intent The DNACPR principles will ensure the following:

All people are presumed to be “For CPR” unless a valid DNACPR decision has been made and documented or an Advance Decision to Refuse Treatment (ADRT) prohibits CPR and the patient has lost capacity

All DNACPR decisions are based on current legislation and guidance

When CPR would not restart the heart and breathing of the individual, it will not be attempted

When CPR might restart the heart and breathing of the individual, discussion will take place with that individual if this is possible (or with other appropriate individuals for people without capacity), although people have a right to refuse to have these discussions. It is important to acknowledge that the patient, for whatever reason, may intentionally avoid these discussions without directly refusing

The form for adult DNACPR decisions will be used (see appendix 1)

Sensitive communication concerning the individual’s resuscitation status will occur between the professional making the decision and the individual themselves; all members of the multidisciplinary healthcare team involved in their care and across the range of care settings and the individuals family and/or carers where appropriate

Each provider organisation will be responsible for providing awareness, education and training for employed staff affected by this document to ensure staff are able to meet the requirements of these principles

6.2 Purpose These principles provide a framework to ensure that DNACPR decisions:

respect the wishes of the individual, where possible

reflect the best interests of the individual

10.

Does the advance decision contain a statement that it is to apply even if the person’s life is at risk?

YES: Continue with the checklist NO: This is not a binding advance decision to

refuse the specified life-sustaining treatment.

11.

Is the advance decision:

In writing AND

Signed by the person making it or by somebody else on his behalf and at his direction AND

Signed by a witness?

YES TO ALL: This is a binding advance

decision to refuse the specified life-sustaining treatment. It must be respected and followed. NO TO ANY: This is not a binding advance

decision to refuse the specified life- sustaining treatment.

http://www.adrtnhs.co.uk/



provide benefits that are not outweighed by futility These principles provide clear guidance for clinical staff. These principles ensure that DNACPR decisions refer only to CPR and not to any other aspect of the individual’s care or treatment options. 6.3 Process Under the Mental Capacity Act (2005), staff are expected to understand how the Act works in practice and the implications for each patient for whom a DNACPR decision has been made. The decision-making framework is illustrated in Appendix 3. In Community Organisations that use EMAS Forms can be downloaded from http://www.emas.nhs.uk . Care should be taken when completing Section 2 on the East Midlands DNACPR form. Within ULHT forms are available on wards/central stores. The person making a DNACPR decision is responsible for communicating the decision to colleagues within the same care setting. Once the decision has been made, it must be recorded on the organisationally approved form and full documentation of the discussion with the patient and or their family recorded. This must include consideration relating to capacity, with the consent of the patient, the person in charge of the patient’s daily care is responsible for communicating the decision to colleagues on discharge or transfer. Electronic forms must be printed and signed. The original DNACPR form should stay with the patient in all places of care. Duplicate copies can be taken for the patient’s notes and for legal and audit purposes. Only the original is a valid document as duplicated may have been superseded. In LCHS the completed form should be scanned onto electronic system (please refer to Allow Natural Death Policy). (NB. DNACPR forms are no longer sent to EMAS to register) Information regarding the background of the decision, the reasons for the decision, those involved in the decision and a full explanation of the process must be recorded in the individual’s notes / care records / care plans. We recommend there is good communication and liaison with Key workers to transcribe the DNACPR form ideally within 24hrs. The form will stay with the person, located as follows:

Hospitals, own home, nursing homes, in-patient Specialist Palliative Care setting: in the front of person’s notes

GP surgeries: ensure that the DNACPR decision is recorded in the individual’s electronic problem list using the appropriate Read Code.

Or with patients medical notes as per local policy Patient transport services, ambulance crews and all other organisations transferring patients between departments, other healthcare settings and home should ask

http://www.emas.nhs.uk/



individuals and/or carers about end of life care choices and abide by the DNACPR decision. The DNACPR form must be carried with the individual on all journeys or as per local policy. The patient information leaflet ‘Time to talk’ or your local information leaflet should be made available, where appropriate, to individuals and their families and carers. The ‘Time to talk’ leaflet can be downloaded from the East Midlands Ambulance Service website at: http://www.emas.nhs.uk/contact/care-decisions/ 6.4 Review The DNACPR should be reviewed when there is a change in care setting or clinical responsibility. 6.5 Cancellation of a DNACPR Decision In some circumstances, a decision may be made to cancel or revoke the DNACPR decision. If the decision is cancelled, the DNACPR form should be crossed through with two diagonal lines in black ball-point ink and the word ‘CANCELLED’ written clearly between them, dated and signed by the healthcare professional. It is the responsibility of the healthcare professional cancelling the DNACPR decision to communicate this to all parties informed of the original decision. Electronic versions of the DNACPR decision must also be cancelled. 7 Appointment of a Lasting Power of Attorney (LPA) (Health / Welfare) Many people prefer not to make advance decisions, and instead leave healthcare professionals to make decisions in their best interests when a decision needs to be made. Another option is to make a Lasting Power of Attorney. This allows a trusted family member or friend to make personal welfare decisions, such as those around treatment, on someone’s behalf, and in their best interests should they ever lose capacity to make those decisions themselves. Where there is a registered LPA for health and welfare, the view of the LPA must be understood to be, and have the same weight as, the decision of the patient themselves. If an individual wishes to give another person legal authority to make decisions on their behalf they should be advised that they can get a special form from the Office of the Public Guardian. They should be advised that their LPA will need to be registered with the Office of Public Guardians before it can be used. Office of Public Guardian can be contacted at: www.publicguardian.gov.uk Tel. 0300 456 0300 8 End of life care competences Staff should have undertaken Mental Capacity Act training prior to supporting patients with Advance Care Planning. In addition, local optional ACP training is available within Lincolnshire and e-learning resources are available at: www.eolc.co.uk

http://www.emas.nhs.uk/contact/care-decisions/

http://www.publicguardian.gov.uk/



9 Additional information In 2012, Skills for Care, Skills for Health and the National End of Life Care Programme have set out a framework of competences, values and knowledge relating to end of life care which includes advance care planning. This optional training can be found on the websites: www.skillsforcare.org.uk and www.skillsforhealth.org.uk 10 References National Institute for Clinical Excellence (2004) Guidance on Cancer Services. Improving Supportive and Palliative Care for Adults with Cancer. The Manual. National Institute for Clinical Excellence: London. Department of Health (2001) National Service framework for Older People. Department of Health: London. Department of Health (2005) National Service Framework for long term conditions. Department of Health: London. Department of Health (2006) Our health, our care, our say: a new direction for community services. Department of Health: London. Department of Health (2007) Cancer Reform Strategy. Department of Health: London. Department of Health (2008a) End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. Department of Health: London. Department of Health (2008b) High Quality Care for All – Next Stage Review. Department of Health: London. Department of Health (2010) Equity and excellence: Liberating the NHS. Department of Health: London. Department of Health (2011) Improving Outcomes: A Strategy for Cancer. Department of Health: London. Mental Capacity Act (2005) HMSO: London. National End of Life Care Programme (2011) Capacity, care planning and advance care planning in life limiting illness. A Guide for Health and Social Care Staff. National End of Life Care Programme and The National Council for Palliative Care (2008) Advance Decisions To Refuse Treatment: A Guide for Health and Social Care Professionals.

Skills for Care, Skills for Health, National End of Life Care Programme (2012) Developing end of life care practice: a guide to workforce development to support

http://www.skillsforcare.org.uk/

http://www.skillsforhealth.org.uk/



social care and health workers to apply the common core principles and competences for end of life care, Available at: www.skillsforcare.org.uk, and www.skillsforhealth.org.uk





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Appendix 1: Thinking Ahead - Advance Care Plan

Thinking Ahead

Advance Care Plan



Thinking Ahead – Advance Care Plan This is not a legal document, but a guide to care that can alter at any time following discussion of any changes. The aim of any discussion about thinking ahead (sometimes called advance care planning) is to develop a better understanding and recording of your priorities, needs and preferences for care and those of your family/carers. That should support planning and provision of care and enable better planning ahead to best meet those needs. The plan enables a more proactive approach, and ensures that it is more likely that the right thing happens at the right time. Your views may change over time therefore this plan can change at any time. This is a planning document to be individualised and reviewed as needed and is in addition to, for example, Advance Directives or other legal documents.

Review It is important to review everything you have written every few months, and make changes you want to. This is especially important if there has been a significant change in your health needs. Such as prognosis/diagnosis. You can change anything within this booklet just by adding to it or altering it as you wish. Initial or sign and date alterations. If anyone has a copy tell them of any changes you have made. NB: If you have made an Advance Decision to Refuse Treatment (ADRT) and wish to change it, you should complete a new form – please ask your doctor or nurse who will help you. This is because it is a legally binding document and needs to be very clear to be valid.

REVIEW 1: This Advance Care Plan was reviewed and confirmed by me I have / have not made changes to it Signature ……………………………………………………………….. Date: …………………………………………..

REVIEW 2: This Advance Care Plan was reviewed and confirmed by me I have / have not made changes to it Signature …………………………………………………………….. Date: …………………………………………..

REVIEW 3: This Advance Care Plan was reviewed and confirmed by me I have / have not made changes to it Signature ……………………………………………………………. Date: …………………………………………..



Review/Amendments Sheet

Version Description of amendments

Date Reviewer Contact details of reviewer



Patient Name: Address: DOB: Hosp / NHS No:

Date ACP Completed Place of Care GP Details:

Family Members / Informal Carers involved in Advance Care Plan Discussion:

Name Relationship Telephone/Contact details

(1)

(2)

Health Care Professional(s) involved in Advance Care Plan Discussion:

Name Role/Registration No. (GMC/NMC)

Signature Date

(1)

(2)

Preferred Place of Care

If your condition starts to deteriorate and you become more unwell, where would you most like to be cared for?

1st Choice:

2nd Choice

Comments: (e.g. family views / support)

Preferred Place at the end of my life

1st Choice:

2nd Choice



There may be other preferences that you wish to document below. It is best practice for your preferences of care to be taken into account by health care professionals making decisions about you should you be unable to tell them at the time. With regard to treatments and care, you are reminded that you can only express a preference, you cannot demand them. Any specific refusals of treatment can be recorded later.

If I become unwell, my preferences regarding care are as follows:

Your preferences of care are individual to you. However some examples could include:-

At this time of your life what is it that makes you happy and or what is important to you?

What elements of care are important to you?

What would you like to happen in the future?

Ask Someone to Speak for you



You may have formally appointed someone to make decisions on your behalf using a Lasting Power of Attorney. If so, please provide their details below

Name:

Address:

Postcode:

Telephone Number:

Relationship to you:

Is your LPA Health / Welfare

Is your LPA Property / Financial offers

Are your LPA’s registered

If you are unsure if your LPA is valid, please contact: - Public Guardian on 0300 456 0300

If you have not registered a Lasting Power of Attorney, is there someone who knows you well and understands what is important to you? This person could be consulted about your care in the event that you are unable to make decisions for yourself. If so, please provide their contact details below:

Name:

Address:

Postcode:

Telephone Number:

Dependants

Who are your dependents?

Do you need to consider any preferences /wishes / plans for their future?

Would you like information on how to leave memories or memory boxes?

If you would like further information please refer to www.eolc.co.uk or a health professional

http://www.eolc.co.uk/



Making Decisions about your Future Care To ensure you are able to make an informed choice, please discuss this section with a health professional. Is there anything from the following list that you would object to?

Yes Comments

Admission to a residential care home setting

Admission to a hospital setting

Admission to a hospice setting

Non Invasive Ventilation

Intravenous antibiotics (given via a drip in hospital)

Oral antibiotics

Enteral feeding

Deactivating implantable cardioverter-defibrillator (ICD)

Do Not Attempt Cardiopulmonary resuscitation (DNACPR)

Use of a syringe driver or injections to manage my symptoms

Use of medication to reduce any symptoms I may have such as sedatives

Using equipment to keep me safe e.g. bed rails, cot sides

Do you have a Living Will or Legal Advance Decision to Refuse Treatment document?

Yes No

If YES, please give details (who has a copy?)



Putting your affairs in order

Ensuring that your paper work and documents are up to date and easy to find will save time and reduce anxiety for your family / next of kin if you become unable to attend to your affairs or if you are taken ill or suddenly die. Tick below to show that you have thought about and recorded in a safe place the details listed. Have you nominated someone you can trust who will be able to access those details if the need ever arises? (Please do not include any personal details in this section) e.g. Bank account details.

Addresses and Contact Number of Family, Friends and Colleagues

Pension details

Birth / Marriage Certificate Bank Name / Account Details (including credit card)

Will

Hire Purchase Agreements

Personal effects

Passport

Details of any Funeral Arrangements or Preferences

Tax Office address and Contact details

Other Important Documents/Contacts e.g. solicitor

Digital legacy / information

Organ Donation / Donor Card Other:

Insurance Policies

Other:

Mortgage Details

Other:

Do you have beliefs (faith, religion and cultural/ spiritual values) around life and death that might affect what you would like to happen? What are they? Do your family members know about or share your beliefs?



My Funeral Plan

I have a funeral Plan

Yes

No

If Yes, my plan is located:

If no, I wish to be:

Buried Cremated

Other Information:

I want to donate my organs, tissue and/or body

For medical research Yes No

I am on the NHS organ donor register Yes No

For another purpose Yes No

Comments:

For more details about donations ring 0300 123 23 23 or see www.uktransplant.org.uk

Patient Signature:

Date:

Next of Kin/Carer Signature: (if present)

Date:

Care home / healthcare Professional signature:

Date:

A Proxy/LPA

Date:

I consent for my GP to share this information with health and social care professionals who may be involved in my care in the future. These could include e.g. out of hours GPs, NHS 111/999 services, ambulance staff and staff in A&E at a hospital.

I agree to the above I do not agree to the above

The information recorded on this form may also be stored electronically, and shared via EPaCCs. It can only be accessed by those with a legitimate need to see information about me.

I agree to the above I do not agree to the above

http://www.uktransplant.org.uk/



Bibliography:

• Advance Decisions to Refuse Treatment: a Guide for Health and social Staff (2008) • Nottinghamshire Advance Care Plan • ULHT Planning for Future Care Guidance (Adult) Advance Care Planning, ADRT & DNACPR • www.uktransplant.org.uk • Our Voice Advance Care Planning – Thinking about your Future Health C are • Say it Once – My Advance Care Plan (2015) • My Advance Care Plan – NHS West Kent/Heart of Kent Hospice/ Hospice in the Weald and the • Ellenor Lions Hospice. • Planning for your future care (Advance Care Planning – St Helena Hospice (2)

If a patient is deemed not to have capacity as per (MCA 2005) in relation to making health care decisions for future care, please refer to anticipatory care planning document

http://www.uktransplant.org.uk/



Appendix 1a: Thinking Ahead – Anticipatory Care Plan

Patient Name: DOB:

NHS Number GP:

Address Surgery:

Telephone number: GP’s Telephone Number:

Place of Care: Lasting Power of Attorney for health?

Mental Capacity Assessment: with relation to anticipatory care planning

The patient is able to: Yes No

Understand the relevant information x

Retain that information x

Use or weigh that information as part of the process x

Communicate their decision x

Meeting held on best interests basis x

Date of Advanced Care Plan discussions

Family members/informal carers involved in Advanced Care Plan Discussions

Name: Relationship:

Name: Relationship:

Health care professional(s) involved in Advanced Care Plan Discussions

Name:

Registration Number:

Role: Care Home Liaison Practitioner

Name:

Registration Number:

Role:

GSF status years months weeks days

Background Information:

What do you not want to happen? Is there anything you worry or fear happening? Please see attached:

Do not Attempt Cardiopulmonary Resuscitation Document

Is there another advance care plan document?

Informal Spokesperson (NOK):

Telephone Number: Address:

Formal Spokesperson: (Find attached LPA documents)

Telephone Number: Address:

Preferred place of care: (If residents condition was to deteriorate where would they most like to be cared for?)

Summary:



Health Professional:

Signature: Date:

NOK involved in discussions? (Yes/No)

Once completed, the ACP should be kept at with copies in the General Practice and hospital records Consent to share with / copy to:

GP Date………..

Neighbourhood Team Date…………

Family/Carer Date………..

Care Home Date…………

Hospital/other Date……….

To be reviewed if views, preferences or circumstances change.

Contributor: Bromhead Care Home Liaisons service

Contact Details If you have any questions or concerns please do not hesitate to contact one of the frailty team via email or telephone. We are available Monday to Friday 8.00am to 4.00pm. • Graham Wilson: [email protected] • Lindsey Mills: [email protected] • Lesley Storey: [email protected] • Gill Garden: [email protected]

Telephone: 0787 4665889

© United Lincolnshire Hospitals NHS Trust Issued: February 2016 Review: February 2018

ULHT-LFT-2225 Version 1

If you require this information in other languages, large print, audio (CD or tape) or Braille please email the Public Information Team [email protected]

The Trust endeavours to ensure that the information given here is accurate and impartial.

www.ulh.nhs.uk

A Guide to Anticipatory Care

Planning

Choose a suitable picture from the photo library. If you want to use colour on the front page try using the

reverse logo to make it stand out.





Anticipatory Care Plan This leaflet is for the families of a person with frailty and/or dementia who is unable to express their wishes about how and where they wish to be cared for at the end of their life. We are giving you this leaflet so that you can think about your relative’s wishes and what they would or would not want at end of life. This leaflet also gives you the opportunity to have discussions with other family members about your relative’s anticipatory care plan.

What is an Anticipatory Care Plan An anticipatory care plan is a document used to record a person’s wishes about different aspects of care as they near the end of their life. This includes where the person prefers to die and whether they would wish to be resuscitated in the event of a cardiac arrest. Other issues that can be covered in an anticipatory care plan include the use of artificial feeding or administration of fluid, treatment of infections, medication and whether someone would wish to be admitted into hospital if they became unwell.

What to consider when making an Anticipatory Care Plan Although it may be upsetting to think about these things, it is helpful for all those involved in caring for your relative to know what they would want to happen to them before the situation arises. In order to achieve a “good” death staff need to be aware of a person’s wishes in advance. This will enable them to share this information with all those concerned, including the person’s GP, the ambulance service and other healthcare professionals. Things to discuss and consider include: • What would your relative have wanted?

• Would they want to be resuscitated if their heart stopped? • Would they want to be artificially fed with a tube in their nose

or stomach? • Would they have wanted to go to hospital, or remain in their

own care home, if their needs could be met there? • Before they became unwell, did they ever talk about how or

where they wanted to die? How will the Anticipatory Care Plan be used? Following discussion with family we will draw up the anticipatory care plan. You will then be shown the plan and if you feel that this is an accurate record of your wishes or your relative’s wishes we will ask you to sign it and give you a copy to keep. This is not a legal document, but a guide to care and can be altered at any time following discussion of changes. Copies of the anticipatory care plan will be kept in the care home notes, with the GP and ambulance service. Further Information You can find further information regarding Anticipatory Care plans on the following websites: • www.goldstandardsframework.org.uk/advance-care-

planning • www.adrt.nhs.uk • www.nhs.uk • www.dyingmactters.org/overview/resources • www.nhsiq.nhs.uk/resource-search/publications/eolc-

ppc.aspx • http://alzheimers.org.uk


CESC//2016/241 Review Date November 2018 Page 34 of 48

Appendix 2: NEOLCP ADRT Form

My Advance Decision to Refuse Treatment

My Name

Any distinguishing features in the event of unconsciousness

Address

Date of birth

Telephone number

What is this document for? This advance decision to refuse treatment has been written by me to specify in advance which treatments I don’t want in the future. These are my decisions about my healthcare, in the event that I have lost mental capacity and can not consent to or refuse treatment. This advance decision replaces any previous advance decision I have made. Advice to the reader I have written this document to identify my advance decision. I would expect any health care professionals reading this document in the event I have lost capacity to check that my advance decision is valid and applicable, in the circumstances that exist at the time. Please check Please do not assume I have lost capacity before any actions are taken. I might need help and time to communicate. If I have lost capacity please check the validity and applicability of this advance decision. This advance decision becomes legally binding and must be followed if professionals are satisfied it is valid and applicable. Please help to share this information with people who are involved in my treatment and care and need to know about this. Please also check if I have made any other statements about my preferences or decisions that might be relevant to my advance decision. This advance decision does not refuse the offer and / or provision of basic care, support and comfort.



My Name

My advance decision to refuse treatment

I wish to refuse the following specific treatments:

In these circumstances

(Note to the person making this statement: If you wish to refuse a treatment that is or may be life-sustaining, you must state in the box above that you are refusing that treatment even if your life is at risk as a result. An advance decision refusing life-sustaining treatment must be signed and witnessed).



My Signature (or nominated person)

Date of Signature

Witness

Witness signature

Name

Telephone

Address

Date

Person to be contacted to discuss my wishes

Name

Relationship

Address

Telephone

I have discussed this with (e.g. name of Healthcare Professional)

Profession / Job title Contact details Date:

I give my permission for this document to be discussed with my relatives / carers YES NO (please circle one)

My General Practitioner is: (name) Address: Telephone: Optional Review Comment Date / Time Maker’s signature Witness signature



The following list identifies which people have a copy and have been told about this Advance Decision to Refuse Treatment (and their contact details)

Name Relationship Telephone Number

Further information (Optional) I have written the following information that is important to me. It describes my hopes, fears and expectations of life and any potential health and social care problems. It does not directly affect my advance decision to refuse treatment but the reader might find it useful.



Is cardiac or respiratory arrest a clear possibility for

the patient? No

Appendix 3: DNACPR Decision Making Framework

Yes

No

Is the patient willing to discuss

his/her wishes regarding CPR?

If cardiorespiratory arrest occurs in the absence of a recorded

decision there should be an initial presumption in favour of

attempting CPR.

Anticipatory decisions about CPR are an important part of high

quality care for people at risk of death or cardiorespiratory arrest.

Decisions about CPR are sensitive and complex and should be

undertaken by experienced members of the healthcare team with

appropriate competence.

Decisions and CPR require sensitive and effective communication

with patients and those close to patients.

Decisions about CPR must be documented fully and carefully in the

patient’s record.

Are the potential risks and

burdens of CPR considered

to be greater than the likely

benefits of CPR?

Does the patient lack capacity and have an

advance decision

specifically refusing CPR

or have an appointed

attorney, deputy or

guardian? Yes

No

Yes

Yes

Is there a realistic chance that CPR could be

successful?

No

It is not necessary to discuss CPR with the patient unless they

express a wish to discuss it.

If a DNACPR decision is made on clear clinical grounds that

CPR would not be successful there should be a presumption in

favour of informing the patient of the decision and explaining a

reason for it (see section 2). Subject to appropriate respect for

the confidentiality those close to the patient should also be

informed and offered an explanation.

Where the patient lacks capacity and has a welfare attorney or

court-appointed deputy or guardian, this representative should be

informed of the decision not to attempt CPR and the reasons for

it as part of the on-going discussion about the patient’s care.

If the decision is not accepted by the patient, their representative

or those close to them, a second opinion should be offered.

If a patient has made an advance decision refusing CPR and the

criteria for applicability and validity are met, this must be

respected.

If an attorney, deputy or guardian has been appointed they

should be consulted.

When there is only a small chance of CPR being successful

and/or there are questions about whether the burdens outweigh

the benefits of attempting CPR, the involvement of the patient

(or, if the patient lacks mental capacity, those close to the

patient), in making the decision is crucial.

Respect and document their wishes (see section 2). Discussion

with those close to the patient may be used to guide a decision in

the patient’s best interests, unless confidentiality restrictions

prevent this.

The patient must be

involved in deciding

whether or not CPR will be

attempted in the event of

cardiorespiratory arrest.

Yes

No



Appendix 4: DNACPR form


Policy no. CESC/2012/075 Page 41 of 47

Appendix 5: Deactivation of ICD Leaflet

Deactivating the shock function of an implantable cardioverter defibrillator (ICD)

towards the end of life

A guide for patients and carers

This leaflet is for people who have an implantable cardiac defibrillator (ICD) and may be helpful also to their family or close friends.

It discusses when it may be best for you to have the shock function of your ICD turned off (deactivated). It may be important to consider this if you develop a terminal illness, become very frail or decide that you no longer wish to receive shocks from your ICD.

Your specialist nurse, cardiac physiologist, cardiologist or other member of the ICD team will be happy to discuss this. In fact, they may have mentioned this when you first received your ICD.

It is important that you and your family or close friends have the opportunity to discuss this so that everyone understands what is involved and you can make your own personal wishes clear.



What does an ICD do? An ICD constantly monitors your heart to identify abnormalities of its rhythm that could cause you to collapse or die suddenly. If one of these rhythms occurs the ICD will recognise it and either:

pace your heart very quickly to interrupt the abnormal rhythm or

deliver a shock to your heart to put the rhythm back to normal. Whilst the shock only lasts for a split second, some people describe the shock as being very unpleasant or painful, similar to a “kick in the chest”. However, receiving a shock can also be reassuring, by showing that your ICD is working and preventing sudden death. If your heart beats abnormally slowly your ICD may also work as a pacemaker to keep your heart beating at the correct rate. Some people have an ICD that is combined with cardiac resynchronisation therapy (CRT-D), which may help to improve the efficiency of the heart’s pumping action. A member of your ICD team will be able to explain which type of ICD you have. The pacemaker function, resynchronisation function and defibrillator (shock) function can be adjusted independently of each other. This will usually be done by a cardiac physiologist, using a similar programmer to the one used for routine checks on your ICD in the clinic. Why would an ICD be deactivated? In the future you may decide that you no longer wish to receive treatment from your ICD, particularly shock treatment. It is possible that your health may deteriorate and the focus of your care will be on your comfort rather than trying to prolong your life. For some people this may be due, for example, to progression of advanced heart disease or lung disease, or for others it may be due to development of a new problem such as advanced cancer or a severe stroke. When someone’s health deteriorates in one of these ways they usually want to make sure that the last stages of their life are as comfortable as possible. If a person has an ICD and is at or nearing the end of their life there is a risk that they will receive shocks from their ICD, in particular during the last few hours or days of their life, causing distress both to them and to their family. Receiving shocks from your ICD in those circumstances, when you are dying from an irreversible condition, is unlikely to prolong your life in a way that you would want. Therefore, it is important that you discuss your preferences and wishes for your care and treatment with your healthcare team. This should include discussions about whether you wish to have your ICD deactivated, if so when you may wish that to happen, and also whether or not you would want to have attempted resuscitation. It is best to consider and discuss your wishes whilst you are well enough to make choices. If you prefer not to do that, others may have to make those choices for you if your health deteriorates and you are too unwell to decide for yourself. If these matters have not been discussed with you and you would like more information please talk to a member of your healthcare team. If that person cannot help you, ask them to contact someone who can, for example your Specialist Nurse or Cardiac Physiologist.



Who will make a decision to deactivate my ICD? This decision will usually be made by you, supported by your healthcare team and, if you wish, by your family or others who are close to you. You may want to have several discussions to make sure that you are happy with the decision and that deactivation of your ICD can be carried out in the right place and at the time that you feel is right for you. Please remember that deactivation of an ICD is reversible. That is, the ICD shock function can be turned back on (re-activated) if you change your mind or if your condition improves. Sometimes a decision to deactivate an ICD has to be made as a matter of urgency by the doctor responsible for your care. This would usually be necessary if you become very ill and are unable to make choices about your treatment yourself. Any such decision would be made in your best interests and would be handled with care and sensitivity. Whenever possible, this would be undertaken with advice from your family or other people who know you well, unless you have stated that you do not want them involved. Discussing your views and preferences in advance will help to make sure that any decisions that are made for you are the ones that you would have wanted. How is an ICD deactivated? There are two ways of deactivating the shock function of your ICD: 1. Using a programmer similar to the one used in the clinic for routine checks on

your ICD. The shock function is turned off but all the other functions remain active. This means that if your heart beats too slowly, the pacemaker function will still work. If your ICD also provides CRT, this will continue to help the pumping action of your heart. Deactivation takes only a few minutes and is usually done by a physiologist or ICD nurse, usually in the clinic or occasionally at home.

2. If deactivation is needed urgently and it is not possible to arrange immediately for your ICD to be deactivated using a programmer, it can be deactivated by using a large magnet. The magnet is placed on the skin directly over the ICD and secured with adhesive tape.

This will stop the ICD delivering shocks. For some people it will be necessary to remove the magnet momentarily and tape it back in place every 7 hours. When a magnet is used for urgent deactivation, it is best regarded as an emergency, temporary arrangement. In most cases the ICD should be deactivated with a programmer as soon as this can be arranged.



It is important to remember that although the shock function of the ICD is deactivated, the pacemaker function is still working, either for treatment if your heart beats too slowly or for resynchronisation therapy for heart failure. These pacemaker functions can be disabled too, but this is hardly ever necessary because:

you are unlikely to be able to feel the tiny electrical signals that pace the heart, so pacing does not cause pain or discomfort;

you are likely to feel worse if your heart beats too slowly or if the pacemaker function is withdrawn when it has been helping to reduce symptoms from heart failure.

Where will the ICD be deactivated? Whenever possible it is recommended that an ICD is deactivated in your local ICD or Pacemaker Clinic. This is most likely to be at the hospital where you attend for your regular checks on your ICD. If you are too unwell to attend a clinic and you are in a nursing home, a hospice, community hospital or your own home it may be possible to arrange deactivation there. However, this would need to be planned carefully so that a physiologist can attend. If you decide that you would like your ICD deactivated but think that you would be unable to attend a clinic please ask what arrangements can be made for you locally. Who should I discuss this with? It is usually best to talk about deactivation of an ICD when you are well and active so that all the people who care about you understand what the decision involves, the reasons for considering it and the reasons for the decision you make. The people that you want to discuss this with may include:

your family, partner or carers;

your cardiologist or heart failure consultant;

your heart failure nurse if you have one;

your General Practitioner (GP);

your palliative care specialist if you have one;

your cardiac physiologist or arrhythmia nurse;

your pastoral care adviser if you have one. These people can help you, if you wish, together with your family or others close to you to reach a decision about ICD deactivation that you are comfortable with. If your family, partner or carers need further information or explanation about deactivation, a member of the healthcare team will provide this if you wish them to.



Summary Deactivation of an ICD:

Is completely painless;

Will make no difference to how you feel, other than making sure that you do not receive shocks that may be painful;

Will not cause death but in time allows a natural death - it simply means that as you reach the last stages of your illness you will remain free from shocks;

Is a reversible process and if the situation changes or you wish to change your mind it can be turned on again (“reactivated”) If you decide that you do not wish to have your ICD deactivated it will be left active. The decision can be reconsidered and discussed at any stage as your condition changes or if you wish to change your mind.

The following space is for you to write down any questions that you may have for your healthcare team.

Who else can I talk to about this?

Your Cardiology team

Counsellors

Pastoral carers

Independent advocacy services

Patient support groups [Arrhythmia Alliance (www.heartrhythmcharity.org.uk), British Heart Foundation (www.bhf.org.uk), Dying Matters (www.dyingmatters.org) and National Council for Palliative Care (www.ncpc.org.uk).]

If you feel that you have not had the chance to have a proper discussion with the healthcare team, or you are not happy with the discussions you have had, please contact PALS https://www.ulh.nhs.uk/patients/patient-experience/pals/ who can help you or the people close to you and deal with your suggestions, worries or complaints.

https://www.ulh.nhs.uk/patients/patient-experience/pals/



Appendix 6: Equality analysis

Title: Planning for Future Care Guidance (Adult): Advance Care Planning, Advance Decisions to Refuse Treatment and DNACPR

Relevant line in: Adults with life limiting illness

What are the intended outcomes of this work? This guidance supports patients and staff to make individual decisions, and to ensure patients’ wishes and decisions about their care and treatment are considered and respected. Identification of choices and preferences can lead to an increased sense of control and enhanced quality of life. It can assist people to remain in their home or normal residence if this is their preference.

Who will be affected? Staff, patients and carers.

Evidence

The Government’s commitment to transparency requires public bodies to be open about the information on which they base their decisions and the results. You must understand your responsibilities under the transparency agenda before completing this section of the assessment.

What evidence have you considered?

National Institute for Clinical Excellence (2004) Guidance on Cancer Services. Improving Supportive and Palliative Care for Adults with Cancer. The Manual. National Institute for Clinical Excellence: London.

Department of Health (2001) National Service framework for Older People. Department of Health: London.

Department of Health (2005) National Service Framework for long term conditions. Department of Health: London.

Department of Health (2006) Our health, our care, our say: a new direction for community services. Department of Health: London.

Department of Health (2007) Cancer Reform Strategy. Department of Health: London.

Department of Health (2008a) End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. Department of Health: London.

Department of Health (2008b) High Quality Care for All – Next Stage Review. Department of Health: London.

Department of Health (2010) Equity and excellence: Liberating the NHS. Department of Health: London.

Department of Health (2011) Improving Outcomes: A Strategy for Cancer. Department of Health: London.

Mental Capacity Act (2005) HMSO: London.

National End of Life Care Programme (2011) Capacity, care planning and advance care planning in life limiting illness. A Guide for Health and Social Care Staff. Available at: http://www.endoflifecareforadults.nhs.uk/assets/downloads/ACP_booklet_June_2011__with_links.pdf

http://www.endoflifecareforadults.nhs.uk/assets/downloads/ACP_booklet_June_2011__with_links.pdf



National End of Life Care Programme and The National Council for Palliative Care (2008) Advance Decisions To Refuse Treatment: A Guide for Health and Social Care Professionals. Available at: http://www.endoflifecareforadults.nhs.uk/publications/pubadrtguide

Skills for Care, Skills for Health, National End of Life Care Programme (2012) Developing end of life care practice: a guide to workforce development to support social care and health workers to apply the common core principles and competences for end of life care, Available at: www.skillsforcare.org.uk www.skillsforhealth.org.uk www.endoflifecareforadults.nhs.uk

Engagement and involvement Was this work subject to the requirements of the Equality Act and the NHS Act 2006 (Duty to involve)? No

How have you engaged stakeholders in gathering evidence or testing the evidence available? This work was led by the Countywide Macmillan Nurse Specialist Group. It has been supported by the Lincolnshire Palliative and End of Life Care Collaborative Forum with representation from health and social care providers, private and 3rd sector providers, EMAS and patient/carer representation.

How have you engaged stakeholders in testing the policy or programme proposals? All stakeholders were invited to comment on the guidance when in draft format.

For each engagement activity, please state who was involved, how and when they were engaged, and the key outputs: Any comments received from stakeholders where considered and incorporated into the final version of the guidance document.

Summary of Analysis Considering the evidence and engagement activity you listed above, please summarise the impact of your work. Consider whether the evidence shows potential for differential impact, if so state whether adverse or positive and for which groups. How you will mitigate any negative impacts. How you will include certain protected groups in services or expand their participation in public life.

The work undertaken will ensure consistent practice across the county and continuity of care for patients.

http://www.endoflifecareforadults.nhs.uk/publications/pubadrtguide



http://www.endoflifecareforadults.nhs.uk/