hospice final report [1]

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DEVELOP, TRIAL AND EVALUATE A

MODEL OF MULTI- DISCIPLINARYPALLIATIVE CARE FOR RESIDENT S

WITH END- STAGE DEMENTIA

CHIEF INVESTIGATOR

Professor Jenny AbbeyCO-INVESTIGATORS

Dr Carol Douglas

Prof Helen Edwards

Prof Mary Courtney

Dr Deborah Parker

Prof Patsy Yates

REPORT AUTHORS

Professor Jenny Abbey

Dr Sandy Sacre

Ms Jenneke Foottit

Dr Deborah Parker

Fun ded by The Pr ince Char les Hospi ta l Foun da t ion 2005

FINAL REPORT FEBRUARY 20 0 8


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Queensland University of Technology

Queensland Health

Abbey, J., Douglas, D., Edwards, H., Courtney, M., Parker, D., Yates, P. (2008).

Develop, trial and evaluate a model of multi-disciplinary palliative care for

residents with end-stage dementia.

February 2008

Correspondence: Professor Jenny Abbey, Professor of Nursing (Aged Care) |

Director QUT Dementia Collaborative Research Centre - Consumers, Carers &

Social ResearchQueensland University of Technology 148 Victoria Park Road, Kelvin Grove

QLD 4059 Australia


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PROJECT TEAM

Professor Jennifer Abbey RN, BN, PhD

Chief Investigator, Professor of Nursing (Aged Care)

Queensland University of Technology and The

Prince Charles Hospital

Dr Carol Douglas MB., Ch.B, Grad Dip Family Medicine,

Grad Dip Palliative Medicine, FRACGP 2000

FAChPM

Director of Palliative Care

Royal Brisbane and Womens Hospital

Professor Helen Edwards DipAppSc., BA(Hons), PhD, RN, FRCNAHead, School of Nursing

Professor of Nursing

Professor Mary Courtney BAdmin (Accounting), MHP, PhD, FRCNA,AFCHSE

Professor of Nursing, School of Nursing

Assistant Dean (Research), Faculty of Health

Dr. Deborah Parker BA, M Soc Sci, PhD

Co-Investigator, Senior Research Fellow, (formally

Dementia Collaborative Research Centre,

Queensland University of Technology)

Prof Patsy Yates RN, BA, DipAppSci, MSocSc, PhD

Professor, Director of Research - Nursing,

A/Director, Centre for Palliative Care Research andEducation, Qld Health, Subject Area Coordinator,

Cancer Nursing QUT

Ms Jenneke Foottit RN (General & Mental Health)

HonsB.SocSc(Nursing), M.Soc.Sc (past.

counselling).

Senior Research Assistant

Dementia Collaborative Research Centre,

Queensland University of Technology

Dr. Sandy Sacre RN, B Soc Sci (Psych), B Psych (Hons), PhD

Co-Investigator, Senior Research Fellow, Dementia

Collaborative Research Centre, Queensland

University of Technology

ACKNOWLEDGMENTS

The study has been funded by the Prince Charles Hospital Foundation and was

undertaken in two residential aged care facilities (RACFs), located in Brisbane,

Queensland. We would like to extend our sincere thanks to the staff and families

involved in the research.


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ABBREVIATIONS

Alzheimers Disease (AD)

As Required (PRN)

Assistant in Nursing (AIN)

Enrolled Nurse (EN)

General Practitioners (GPs)

multidisciplinary model of palliative care (mmpc)

Palliative Care Nurses Quiz (PCQN)

Registered Nurse (RN)

Residential Aged Care Facilities (RACFs)

SWC-EOLD Satisfaction with Care at the End-of-Life in Dementia

SM-EOLD Symptom Management at the End-of-Life in Dementia


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TABLE OF CONTENTS

ACKNOWLEDGMENTS ...........................................................................................3

ABBREVIATIONS......................................................................................................4

TABLES AND FIGURES ...........................................................................................7

EXECUTIVE SUMMARY .........................................................................................8

MAIN FINDINGS ..........................................................................................................9

Phase one: Understanding the quality of the end-of-life experience for residents

and families prior to the introduction of a multidisciplinary model of palliative

care (mmpc) ...........................................................................................................9

Phase two: Provision of an education program for staff and general

practitioners on the principles of a palliative approach .....................................10

Phase three: Development, trial and evaluation of a model of multi-disciplinary

palliative care for residents with end-stage dementia .........................................11CONCLUSIONS ...........................................................................................................12

RECOMMENDATIONS FOR IMPLEMENTATION OF A MULTIDISCIPLINARY MODEL OF

PALLIATIVE CARE FOR RESIDENTS WITH END-STAGE DEMENTIA:...............................13

STUDY REPORT ......................................................................................................14

BACKGROUND INFORMATION .........................................................................14

WHAT IS PALLIATIVE CARE FOR OLDER PEOPLE?.....................................................14

DEATH AS A MANAGED PROCESS..............................................................................15

PLANNING FOR LIVING AND PLANNING FOR DYING ..................................................16

AIMS OF THE PROJECT .......................................................................................17STUDY DESIGN........................................................................................................18

ETHICAL APPROVAL ..................................................................................................18

PHASEONE............................................................................................................18

Resident case note audit.......................................................................................18

Carer interviews...................................................................................................18

PHASETWO...........................................................................................................19

Staff Education.....................................................................................................19

Knowledge of a Palliative Approach ...................................................................20

PHASETHREE: ......................................................................................................21

RESULTS ...................................................................................................................25

PHASEONE............................................................................................................25

Case Note Audits prior to the mmpc .................................................................25

Case Note Audits following the mmpc ..............................................................26

Comparisons of Case Note Audits .......................................................................27

The SWC-EOLD prior to the mmpc ..................................................................27

The SWC-EOLD following the mmpc ...............................................................28

Comparisons of the SWC-EOLD prior to and following the introduction of the

mmpc....................................................................................................................29

Interviews with Bereaved Carers prior to the mmpc ...........................................31

PHASETWO...........................................................................................................42Education sessions...............................................................................................42


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Staff Pre mmpc Questionnaire Results ................................................................42

Staff Post mmpc Questionnaire Results ...............................................................45

PHASETHREE .......................................................................................................50

A profile of residents who participated in the mmpc ...........................................50

Resident profiles...................................................................................................57

Case conference: an example .............................................................................58Interviews with Bereaved Carers following the introduction of the mmpc .........59

Impact of the mmpc for general practitioners .....................................................62

Impact of the mmpc on residential staff ...............................................................62

DISCUSSION.............................................................................................................64

CONCLUSIONS........................................................................................................65

APPENDIX 1THE SYMPTOM MANAGEMENT AT THE END-OF-LIFE DEMENTIA SCALE

..................................................................................................................................65

APPENDIX 2THE SATISFACTION WITH CARE AT THE END-OF-LIFE DEMENTIA

SCALE .......................................................................................................................67

APPENDIX 3 MMPC PRO FORMA ..............................................................................68

APPENDIX 4ASSESSMENT OF RESIDENTS CARE.....................................................73

APPENDIX 5 -PRELIMINARY CODES FOR INTERVIEWS ..............................................82

APPENDIX 6-PRE INTERVENTION RESPONSES TO NON PCQN QUESTIONS BY

PROFESSIONAL GROUP...............................................................................................83

APPENDIX 7PRE INTERVENTION RESPONSES TO QUESTIONS FROM THE PCQN BY


APPENDIX 8 POST INTERVENTION RESPONSES TO NON PCQN QUESTIONS BY


APPENDIX 10POLICY FOR A PALLIATIVE CARE APPROACH ...................................91

APPENDIX 11PALLIATIVE CARE PLAN...................................................................92APPENDIX 12WORK INSTRUCTION FOR A PALLIATIVE APPROACH .........................98

APPENDIX 13PALLIATIVE CARE PROCEDURE FLOWCHART AND AUDIT TOOL.......99

REFERENCES.........................................................................................................102


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TABLES AND FIGURES

Figure 1- The SM-EOLD Scale for residents who died prior to the introduction of the

mmpc............................................................................................................................25

Figure 2 - The SM-EOLD Scale for residents who died following the introduction of

the mmpc......................................................................................................................26Table 1 - The SM-EOLD for residents prior to and following the introduction of the

mmpc............................................................................................................................27

Table 2 - The SWC EOLD Scale prior to the introduction of the mmpc .................28

Table 3 - The SWC- EOLD Scale following the introduction of the mmpc ...............29

Figure 3 - The SWC-EOLD Scale prior to and following the introduction of the mmpc

......................................................................................................................................30

Table 4 - Responses to psychosocial questions pre mmpc ..........................................42

Table 5 - Responses to organisational questions pre mmpc ........................................43

Table 6 Responses to clinical management questions pre mmpc .............................44

Table 7 - Responses to PCQN questions prior to the mmpc........................................45

Table 8 Responses to psychosocial questions post mmpc ........................................46Table 9 Responses to organisational questions post mmpc......................................47

Table 10 Responses to clinical management questions post mmpc .........................48

Table 11 - Responses to the PCQN questions post mmpc...........................................49

Figure 4 - Correct responses to the PCQN questions prior to and following the

introduction of the mmpc.............................................................................................49

Table 12 - Average length of stay for study residents in the facility prior to the mmpc

......................................................................................................................................50

Table 13 Residents Classification Category............................................................51

Table 14 - Palliative Care Casemix Classification Definitions ...................................51

Table 15 - Hydration status for study residents at initial assessment ..........................51

Table 16 - Nutrition status for study residents at initial assessment............................52

Table 17 - Behavioural problems for study residents at initial assessment .................52

Table 18 - Skin integrity for study residents at initial assessment...............................52

Table 19 Symptoms for residents at initial assessment ............................................53

Figure 5 - Percentage of residents with symptoms at initial assessment .....................54

Table 20 - Percentage of residents with symptoms during the study ..........................55

Figure 6 - Percentage of residents with symptoms during the study...........................55

Table 21 - Regular medications for study residents.....................................................56

Table 22 - PRN medications for study residents .........................................................56

Table 23 - Regular opioids prescribed for study residents during the study ...............57


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EXECUTIVE SUMMARY

The rapid growth of the older segment of Australias population and the corresponding

effect on the increase in the expected growth in numbers of people with dementia will be

of great concern in the next two decades. In 1976, one in six older people (those 65 and

above) was aged 80 and over; by 1999 it was one in five; by 2016 it is projected to be onein four; and by 2041 one in three older people will be over 80 years. The proportion of

older people who require care in a Residential Aged Care Facility (RACF), at this time is

approximately 8% (Commonwealth of Australia 2003). However, projections of the

increase in the number of people over 80 years of age make it likely that this figure will

increase exponentially.

In 2005, there were 161, 765 residential aged care places available in Australia. Death is

the likely exit point for most people who enter a residential aged care facility with 84% of

separations in 2005 accounted for by the residents death (Australian Institute of Health

and Welfare (AIHW) 2006). Since the introduction of the new aged care reforms of 1997-

8, there is a responsibility for aged-care staff to document and manage the death of thosein their care in a systematic, planned fashion. When there is a clear prognosis and an

understood trajectory towards death as is often the case with cancer, death can often be,

perhaps usually, a straightforward, well-planned and managed process. However, for

people with chronic conditions and a long drawn out deterioration of health before death a

framework different to that derived from acute palliative-care service models, is needed, a

framework that can be organised, planned and executed mainly by nurses, after due

consultation and with the support and collaboration of other health professionals. A best

practice approach could be one that involves an interdisciplinary team using case

conferences which include the client's relatives and friends, education for staff and

supportive management structures (Froggatt, Poole et al. 2002)

In Australia the need for a structured palliative approach in residential aged care facilities

has previously been identified (Abbey 2003; Parker, Grbich et al. 2005) and a

commitment by the Australian government to develop guidelines for a palliative approach

is evidence of this need (Commonwealth Department of Health and Ageing 2004). At the

time of this present study, while these guidelines were available, the national

implementation strategy for the guidelines had not been commenced.

This study aimed to develop a structured model of multi-disciplinary palliative care

(mmpc) for people with end-stage dementia. The mmpc was based on the Guidelines for a

Palliative Approach in Residential Aged Care (2004). This model was then trialled andevaluated in two RACFs in Australia during 2005.

This study utilised a multi-method approach and included both retrospective and

prospective data collection and analysis. The study was conducted in three phases over a

14 month period during 2004 -2005, consisting of:

Phase 1. Understanding the quality of the end-of-life experience for residents and

families prior to the introduction of a multidisciplinary model of palliative care.

Phase 2. Provision of an education program for staff and general practitioners on

the principles of a palliative approach.


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Phase 3. Development, trial and evaluation of a model of multi-disciplinary

palliative care for residents with end-stage dementia

Main Findings

The main findings will be summarized in point form under the three phases of the study.

Readers are encouraged to refer to the relevant sections of the report for further details.

Phase one: Understanding the quality of the end-of-life experience forresidents and families prior to the introduction of a multidisciplinarymodel of palliative care (mmpc)

This was achieved in two ways: a case note audit of twenty five residents with end-stage

dementia who died in the two RACFs during 2004; and interviews with carers of these

residents to determine their perceptions of care provided.

Main findings from this phase:

The routine use of case conferencing to discuss a palliative approach for residentswith end-stage dementia was limited

The use of advance health directives for residents was minimal.

Documentation of the recognition of a palliative phase to care was evident but thismainly occurred a few days prior to death indicating the recognition of terminal care

rather than a palliative approach.

Common symptoms in the 90 days prior to death were agitation, resistance to care,

pain and skin breakdown. Carers were overall satisfied with their opportunity to make decisions regarding

their relatives care, the level of comfort of their relative, the sensitivity shown to

them as carers and with the nursing care and treatments provided. Their main

concerns were not having enough understanding of who was coordinating care, not

having enough information about how medication was managed and how medical

decisions were made.

Reports from carers regarding whether they were aware that their relative wasdeteriorating and expected to die varied, with some indicating they knew and were

told, and others being unaware of how close death might be.

Comments were predominately expressions of dissatisfaction aroundo The lack of time available to staff to spend with their relatives or other

residents.

o The loss of identity of their relative as communication became impaired.o Lack of information about the trajectory of dementia.o Limited opportunity for emotional support from staff.

Issues about lack of privacy were raised particularly for those who were either not ina single room or where no private room was available for terminal care.

Discussion with carers on whether to stop or withhold treatment was an issue raisedand mainly concerned the use of antibiotics.

Carers spoke of the impact of caring for a relative with dementia over many years,

often without any recognition and therefore not having much positive reward fortheir care.


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Carers also identified the loss they felt and the need for an adjustment in terms ofwhat to do with the time they now had available which had previously been spent at

the facility.

Phase two: Provision of an education program for staff and generalpractitioners on the principles of a palliative approach

Face-to-face lectures, CD-ROM lectures, provision of a copy of the guidelines to each

section of the two RACFs and the provision of relevant literature. General practitioners

who attended the RACFs on a regular basis were invited to sessions, sent a CD-ROM of

the training sessions and an electronic copy of the guidelines.

Change in knowledge and attitudes of nursing staff to providing a palliative approach was

measured with a questionnaire administered prior to the education and at the completion

of the mmpc. No formal assessment of general practitioner knowledge was undertaken.


Undertaking a second questionnaire with nursing staff proved to be difficult. Thenurse unit managers were supportive and went to great lengths to encourage staff to

complete the questionnaires, but high staff turnover in one facility, a building

program that affected the units where people with dementia were mainly cared for,

and changes in management teams and structures probably had an impact on the

completion of post mmpc questionnaires. The overall response rate for the pre-test

was 59%. And for the post-test was 15.8%.

In the post mmpc round, fewer registered nurses (14.3% vs. 32%), more enrollednurses (23.8% vs. 16%) and more assistants in nursing (61.9% vs. 52%) completed

and returned questionnaires. While these differences are not statistically significant,

they may have impacted on the reliability of the results.

The low post-mmpc response rate compared with the pre-mmpc response rate mayhave meant that follow-up results were not representative of the broad group of staff.

Nevertheless, there were statistically significant differences in staff responses tosome questions pre- and post-mmpc. There were significant positive changes in staff

belief that they could reflect on what could have been done to improve care and staff

felt that their clinical management skills had increased.

There were some results in a negative direction including:o Staff confidence in discussing impending death with familieso Perceptions that the clinical team did not work together with the familyo Belief that pain was not well managedo Discomfort in speaking with GPs about residents symptoms.

Some of these differences may be due to the differences in sample size and

education level of staff completing the pre and post questionnaires. For example,

these results may have resulted from a higher proportion of assistants in nursing

than registered nurses completing the follow-up survey. However, another

explanation is that having been exposed to information and education about how to

improve palliative care, staff may have become more aware of their skills deficits

and lack of confidence in terms of applying these new skills.


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Phase three: Development, trial and evaluation of a model of multi-disciplinary palliative care for residents with end-stage dementia

In the final phase a model of multidisciplinary palliative care based on the palliative

approach guidelines (Commonwealth Department of Health and Ageing 2004) was

developed. This model included education of staff as previously described,

multidisciplinary case conferencing using the enhanced primary care guidelines and

implementation of palliative goals. Ongoing liaison between specialist palliative care

services, residents, relatives, staff of the RACFs and the residents general practitioner

was also available.

This model was trialled for a period of approximately 10 months during which time

seventeen residents of those identified by staff as requiring a palliative approach were

suitable for inclusion in the study. Of these residents, nine died during the trial of the

mmpc. It was originally envisaged that comparisons would be possible between the

experiences of the twenty five deceased residents and their bereaved carers who were

included in the retrospective study, and a sample of twenty five residents and bereavedcarers after the introduction of the mmpc. Unfortunately recruitment difficulties and

financial constraints limited the comparison group to seventeen residents and most

specifically the nine who died during the mmpc.


All residents were highly dependent for activities of daily living and more thanhalf were reported as having severe difficulties understanding the need for care

measures. These difficulties are sometimes documented as resisting care or

resistive to care, indicating that the person uses non-verbal methods of sayingno, sometimes perceived as inappropriately (for example when the resident is

incontinent and staff would prefer to change the clothes and bed linen and the

person prefers them not to).

Most common symptoms were weakness/fatigue, dysphagia, anorexia,pruritis/rashes, restlessness, anxiety, anorexia and vomiting.

For the nine residents who died, symptoms in the 90 days prior to death includedpain, resistance to care indicating severe communication difficulties, skin

breakdown, agitation and shortness of breath. The frequency of recording of those

symptoms for the nine residents after the introduction of mmpc was greater than

for the twenty five residents prior to the mmpc. It appears that the education on

the importance of documentation of symptoms had made staff more aware of the

need to document troublesome symptoms.

Multidisciplinary case conferencing provided opportunity for discussion ofimportant palliative issues such as pain and symptom management, management

of loss of the ability to swallow, discussion of the residents wishes if known

regarding death and dying, and any family concerns.

In both groups issues of nutrition and hydration were discussed. This occurred inthe multidisciplinary case conference after the introduction of mmpc, but for the

pre mmpc group this was often done informally and therefore may not have been

documented.

Overall carer satisfaction ratings using the Satisfaction with End-of-Life Carescale (SW-EOLD) were generally high both pre mmpc (mean 30.7, standard


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deviation 4.6) and post mmpc (mean 31, standard deviation 3.8) indicating little

change between the two groups in terms of satisfaction with care overall, but

when examining individual questions the carers in the post mmpc group had

higher satisfaction ratings on four of the ten questions, although none reached

statistical significance.

o More carers post mmpc believed they had been given enough informationto make decisions and remained comfortable with the decisions they had

made.

o More carers post mmpc agreed that all measures were taken to keep theresident comfortable.

o More carers post mmpc indicated they were given enough information tounderstand that the person was approaching the end stage of their disease

and by implication, the end of their life.

o More carers post mmpc indicate satisfaction with the medical careprovided.

Interviews with bereaved carers post mmpc indicated a high level of satisfaction

with the care their relative received.

While experiences of bereaved carers prior to the mmpc indicated some concernwith privacy, late recognition of the need for a palliative approach or even

impending death, these issues were not raised by carers in the post mmpc group.

All residents in the study were receiving multiple medications with twelve of theseventeen residents on opioid analgesics and pain control was generally

satisfactory overall for the post mmpc group.

One carer however, identified that she did not think her husband was givenadequate pain relief in the few hours prior to death and she perceived this was

reluctance from the registered nurse related to giving the final dose of morphine.

This issue highlighted the ongoing need for education and culture change requiredto implement a palliative approach in RACFs.

Staff provided positive feedback on the implementation of the mmpc in theirRACFs. This included raising awareness of the need for a palliative approach for

residents with dementia, opportunity to discuss palliative issues with other team

members and relatives at multidisciplinary case conferences and increased

interaction with carers regarding palliative care issues that had been discussed at

the mmpc case conference.

While general practitioner involvement in the study was limited positivereflections from those involved regarding the use of case conferencing indicated

the viability of using multidisciplinary case conferencing as a tool for

implementing a structured palliative approach for residents who would benefitfrom it.

Conclusions

This study illustrated the positive contribution of providing a structured multidisciplinary

palliative approach for residents with end-stage dementia. While further evaluation of this

model is required the commitment of staff to the development of a palliative approach

policy and appropriate documentation is encouraging.


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Recommendations for implementation of a multidisciplinary model of palliative care

for residents with end-stage dementia:

1. A multidisciplinary model of palliative care for people in the late-stages of

dementia is a best practice approach

2. An education program for staff is required within RACFs to become skilled infacilitating an mmpc and case conferencing.

3. Continued education for all levels of staff based on the palliative care guidelineswill be needed

4. Provision within RACFs for staff to discuss the care provided to residents whohave died including what was done well and what could have been improved

assists in continuing improvement

5. The documentation for the mmpc and palliative care case conferencing developedin this research be further validated and trialled

6. RACFs to undertake regular audits of palliative and end-of-life care to identifypractices that require improvement in addition to those which are providing desired

outcomes.


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STUDY REPORT

BACKGROUND INFORMATION

Dementia is described in medical terms as: A syndrome due to disease of the brain,

usually of chronic or progressive nature, in which there is disturbance of multiple highercortical functions, including memory, thinking, orientation, comprehension, calculation,

learning capacity, language and judgment. Consciousness is not clouded. Impairments of

cognitive function are commonly accompanied by and occasionally preceded by

deteriorating emotional control, social behaviour or motivation. This syndrome occurs in

Alzheimer's disease, in cerebrovascular disease, and in other conditions primarily or

secondarily affecting the brain (Jorm and Henderson 1993).

Some general groups of symptoms and behaviours have been identified that can signify

the end-stage of dementia (Shuster 2000; Abbey 2003):

there is often a progressive worsening of memory resulting in increased confusionand disorientation

speech and the ability to communicate often deteriorate to the point where theperson may eventually become incoherent or completely mute

behavioural changes may occur which can lead to a person being belligerent,sobbing or screaming; or strikingly passive and quiet, immobile and detached

the persons ability or desire to move independently can decline, leaving thembed/chair bound

the persons capacity for self-care progressively diminishes, making them totallydependent on carers

the persons ability to eat independently gradually disappears, often associatedwith a diminished ability to swallow and increased risk of aspiration. A

progressive loss of appetite almost always follows

other complications can include bowel and bladder incontinence, muscle atrophyand contractures, increased susceptibility to delirium, recurrent infections,

pneumonia, pain, peripheral shutdown, pressure ulcers and general skin breakdown

delirium can result in increased restlessness and agitation

The appearance and prominence of these symptoms will vary between individuals due to

differing disease processes, individual differences and co-existing conditions such as

cardiac failure, diabetes and cancer. Volicer (2002) indicated that these progressive

changes in functioning mark end-stage Alzheimers Disease (AD) and present challengesto carers to define positive approaches to care to ensure the individuals quality of life.

What is Palliative Care for Older People?

Palliative care is defined by the World Health Organisation (and others) as the total care

of people whose disease is not responsive to curative treatment and includes control of

symptoms, in particular pain, and care of the family of the dying person (Davies 2004). A

report in 2004 by the World Health Organisation (Davies, J et al. 2004) examining the

needs for palliative care in older people, suggested that older people have special needs

related to multiple medical problems of varying severity, the cumulative effect of which

my be greater than any one disease and therefore causing greater impairment and care

needs. Their research showed that cognitive impairment was a common occurrence in the


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last year of older adults lives, along with continence issues and sensory losses. Their

suggestion was for a palliative approach to be based on the need of the person and the

family rather than prognosis (Davies, J et al. 2004), given the difficulty in predicting the

course of chronic illness. A related report (Davies 2004) found that the unmet palliative

care needs of older people and their families include pain management, issues of non-

cancer illnesses including heart failure and dementia, multiple problems related to ageing,communication and patient-centred care, and preferences for place of care and place of

death. Implied in the report was the need for excellent symptom control and being able to

remain in the place of residence until death.

There are many debates about futile treatment (Shah and Lloyd-Williams 2003) and Barr,

Graham and Ireland (2002) argued that many older people want a choice of palliative care.

The kind of assistance which older people, their family and their friends require will need

to be individualised. However, all would probably feel vulnerable and/or confused. Older

people often felt powerless in the hands of health professionals (Cameron 2002)and felt

conflict about their increasing dependence on health professionals. One of the participants

in Camerons study expressed it as follows:

How do you tell a doctor that you think he was wrong? a woman asked. I am afraid of

offending him, and I really need him. I don't want him to be cross with me or think I am

critical of his care. (p544)

Cameron (2002)s research found that older adults needed effective resolution of ethical

conflict related to making decisions in order to find meaning in suffering, harmony in

unpredictability and less fear of death. Participants indicated that effective resolution of

ethical conflicts helped them to live with meaning and integrity and failure to resolve

conflict in this way led to stress, compromised integrity, and decreased quality of life

(p545). From this it follows that health professionals need to become skilled in promoting

open and easy dialogue about difficult issues with attention to listening and supporting.

This would allow for the development of a plan of care that is recognised and accepted as

suitable by the person who is dying or their legitimate representatives.

Death as a Managed Process

Since the introduction of the new aged care reforms of 1997-8, there is a responsibility for

aged-care staff to document and manage the death of those in their care in a systematic,

planned fashion. When there is a clear prognosis and understood trajectory towards death

as is often the case with cancer, death can often be, perhaps usually, a straightforward,

well-planned and managed process. The sick person will usually be aware of their choicesand fully able to make them. Families can interrupt their own lives and rally round the

person who is dying, with the communication being of obvious benefit to both parties.

However, if death does not come gently and predictably as is often the case with long-

term chronic illnesses such as emphysema and dementia, the dying person, families,

carers, doctors and nurses often come face to face with their values, hopes and limitations

in a more complex, untidy and stressful process.

It is this confrontation with limitations and choices that underpins a discussion of

palliative care for older people. An interdisciplinary approach using case conferences

which include the client's friends and relatives, education for staff and supportive

management structures has been advocated (Froggatt, Poole et al. 2002). The frameworkaround which to build policies for palliative care for older people needs to be based on


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more than emotional responses, historical practice or anecdotal evidence that says 'we do

it anyway', without clarification of the issues. Planning for death needs to be a systematic

process, with a well-defined purpose and a structure which is contextualised to suit the

population in care, the carers themselves and the culture in which this care takes place.

Planning for Living and Planning for Dying

The indicators for the introduction of a palliative approach for those with cognitive

impairment are more complex than for those who could indicate their wishes for care,

compounded by a lack of research on what would trigger a move towards a palliative

approach for older people. The nurses knowledge of and relationship with, the older

person and his or her family and friends is vitally important. The previously expressed

wishes of the individual and the present concerns of family and friends are paramount.

Covinsky (2003) undertook a study to characterize the functional trajectories during the

last two years of life of people with progressive frailty and found that for people with and

without cognitive impairment there was a prolonged, steady increase in functional

dependence evident at least one year before death. There were no incidents or abrupt

decline in function which signal impending death. To differentiate the client's needs takesskill and an intimate relationship (Maynard, Whittle et al. 2003). The greatest

apprehension of people in a study on end-of-life preferences among older people is that

they will not experience a peaceful, pain-free, dignified death(Nahm and Resnick 2001).

Offering a model of care that provides palliation has been shown to improve quality of life

and meet the expectations of persons with dementia and their families as well as

containing some of the cost associated with end stage care (Billings 1998). However,

education is needed to prepare staff for this difficult work.

An Australian study (Doyle and Ward 1998) found that dementia care training is usuallynot linked to competency standards or staff appraisal, and the emphasis on dementia care

in generalist education institutions varies considerably. Shanley, McDowell & Wynne

(1998) evaluated a short course on caring for people with dementia and found that a

course based on interactive teaching, with follow-up and an action plan included, had

positive outcomes for dementia care. A Swedish study (Skog, Grafstrom et al. 1999)

found that education changed the outlook of a group of trainees from seeing people with

dementia as a homogeneous group to seeing them as unique human beings.

A group of nurses and physicians, led by Ladislav Volicer, has been writing about the

introduction of forms of palliative care for people with dementia for the past two decades.

Their evidence, ranging from 1986 to 2003 (Volicer, Brown et al. 1986; Volicer, Seltzer etal. 1989; Volicer, Hurley et al. 1993; Volicer, Collard et al. 1994; Volicer 1997; Volicer,

Hurley et al. 2001; Volicer, McKee et al. 2001; Volicer 2002; Volicer and Hurley 2003)

emphasises that, in the end-stage of dementia, comfort care, delivered by knowledgeable,

educated staff is the paramount objective.

Also important is Molloys evidence showing the usefulness of advance directives in

RACFs (Molloy and Guyatt 1991; Molloy and Urbanyi 1992; Molloy, Guyatt et al. 2000).

Molloy confirms results such as those from Akerlund and Norberg (1990) which

demonstrate that staff personalities, beliefs and individual values have the most significant

effect on care that is supplied to the residents, reinforcing the need for educated staff and

clear formal protocols if care is to be consistent.


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In Australia, Hudson and Richmond (1994; 2001) describe a palliative approach to be

used in RACFs and supply examples of documentation which can be used by nurses.

Hudson and Richmond supply exemplars from their work in RACFs, based on their

background as palliative care nurses, and offer suggestions for an effective palliative

approach which arose from what had worked in clinical practice. However, there is no

evidence that these suggestions were incorporated into practice in other RACFs

In a study by the Chief Investigator (Abbey 1995) questions were raised about the benefit

of life-sustaining procedures applied without the benefit of a coherent policy and ethical

framework, and which depended on the values and personalities of staff rather than agreed

protocols. A report in which the Chief Investigator was heavily involved, Palliative care

in Nursing Homes, was furnished to the Commonwealth Government (Maddocks, Abbey

et al. 1996), followed by the production of an education package outlining techniques to

introduce palliative care into nursing homes. Funding was not available at the time to

evaluate the use of this education package. More recent work by Maddocks et al (1999)

demonstrated that training of staff within RACFs can improve knowledge, skills and

attitudes in caring for people with life limiting illnesses.

The recognition by the Australian Government of the need for a national approach to

providing palliation for residents in RACFs led to the development of Guidelines for a

Palliative Approach in Residential Aged Care Facilities (Commonwealth Department of

Health and Ageing 2004). These guidelines highlighted that to provide effective and

humane clinical care for residents with end-stage dementia a structured approach would

be required.

This particular study sought to develop, trial and evaluate a structured model of multi-

disciplinary palliative care (mmpc) in two RACFs in Australia.

AIMS OF THE PROJECT

For a population of residents diagnosed as being in the end-stage (terminal) of a

dementing illness in two residential aged care facilities:

1. To develop, trial and evaluate a structured model of multi-disciplinary palliativecare (mmpc)

2. To evaluate the quality of the end-of-life experience before and after theintroduction of the mmpc

3. To evaluate the palliative care knowledge and attitudes of staff and GPsconcerning people with end-stage dementia before and after the introduction of themmpc.


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STUDY DESIGN

This study took a multi-method approach and included both retrospective and prospective

data collection and analysis. The study was conducted in three phases over a 14 month

period. These phases consisted of:

Phase 1. Understanding the quality of the end-of-life experience for residents and

families prior to the introduction of a multidisciplinary model of palliative care.

Phase 2. Provision of an education program for staff and general practitioners on

the principles of a palliative approach.

Phase 3. Development, trial and evaluation of a model of multi-disciplinary

palliative care for residents with end-stage dementia

Ethical approval

Ethical approval for the study was obtained from the Queensland University of

Technology Human Ethics Committee and the Prince Charles Hospital Health Service

District Ethics Committee.

PHASE ONE

This phase of the study aimed to collect baseline information on the care provided to

residents with end-stage dementia in the two RACFs and their families prior to the

introduction of the mmpc. This information was provided by a case note audit of residents

that had a diagnosis of dementia and who had died in the two facilities during the year

2004. In addition, the closest living relative/lawfully authorised representative of the

person who died was interviewed regarding their perceptions of care that had been

provided.

Details of the data collected in this phase include:

Resident case note audit

Between October 2004 and January 2005 the research team undertook a retrospectiveaudit of case notes recording details of symptom control and clinical management in

the last 90 days of the life of 25 residents with a diagnosis of dementia who died in

either of the two RACFs during the year 2004. A scale designed by researchers tocapture this, Symptom Management at the End-of-Life in Dementia (SM-EOLD)

(Volicer, Hurley et al. 2001) was used to record findings (Appendix 1).

Carer interviews

The research team interviewed relatives/lawfully authorised representative(s) of the25 residents whose care was audited using the SM-EOLD. The quality of the end-of-

life experience was measured using the scale Satisfaction with Care at the End-of-

Life in Dementia (SWC-EOLD) (Volicer, Hurley et al. 2001) (Appendix 2). The

SWC-EOLD evaluates the satisfaction of the family members with the process of pre-

death care, including not only the care provided to the resident but also that provided


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to the family and significant others. Interviews were taped, transcribed and analysed

thematically.

PHASE TWO

This phase of the project which overlapped with Phase One included the provision of acomprehensive education program on the principles of a palliative approach for nursing

staff of all designated levels at the two facilities. To allow maximum flexibility education

sessions were delivered in each section of the two residential aged care facilities and at a

time most convenient for nursing staff to attend. Due to the amount of information that

was considered important for nursing staff to understand a palliative approach, four

education sessions over a period of one to two months were scheduled. Details of this

phase include:

Staff Education

The education program was based on the Guidelines for A Palliative Approach in

Residential Aged Care Facilities (Commonwealth of Australia 2003). Education provided

included:

A series of four face-to-face in-service lectures and activities for nursing staff ateach RACF

in one facility sessions on each ward were held at change of shift between theafternoon and night shift, repeating the content of the lectures for those unable to

attend daytime sessions

provision of lectures on a CD-ROM for nursing staff unable to attend a face-to-facelecture

supply to General Practitioners of a CD-ROM of the guidelines produced by theCommonwealth Dept of Health and Ageing,A Palliative Approach to Residential

Aged Care Facilities (Commonwealth of Australia 2003). GPs were also invited to

attend in-service lectures scheduled for RACF staff.

distribution to all staff of educational literature outlining, among other things, theevidence base being used for the model of multi-disciplinary palliative care

Topics:

Session 1

The palliative approach

End-of-life (terminal care)

Denying death

Attitude, knowledge, skills and process in relation to dignity and quality of life

Session 2

Physical symptom assessment and managemento Dysphagia

o Nutrition and hydrationo Weight loss


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o Bowel careo Skin integrityo Fatigueo Pain

Session 3 End-of-life (terminal) care

I dont know what to say awkward questions

Medication management

Death rattle

Nausea and vomiting

Suction

Signs of death

Bereavement support for the family

Session 4 A structured approach how do we put it together?

Documenting observations

Documenting residents needs

Documenting relatives needs

Writing care plans

Case conferencing

Knowledge of a Palliative Approach

To gauge a change in knowledge of and attitude to the provision of a palliative approach,nursing staff were asked to complete a questionnaire prior to the education sessions

(October 2004 January 2005) and then again at the completion of the trial of the mmpc

(November 2005).

A questionnaire from a study on palliative care nurse practitioners in RACFs was used

with permission (Maddocks, Parker et al. 1999). The questionnaire consists of 17 items

adapted from the Palliative Care Quiz (PCQN) {Ross, 1996 #91}and 25 questions

developed by Maddocks et al (1999). All items had fixed responses; the responses to the

17 items from the PCQN were true or false and the other 25 items which addressed

attitudes and perceived confidence with providing a palliative approach had responses of

yes, no or sometimes. The research team scored the questionnaires.

Questionnaires were distributed by the research team and nursing staff were asked to

complete the questionnaires and place them in a box in the area they worked in. Responses

from the questionnaires were entered into an SPSS version 13.0 data file.

Whilst nursing staff were encouraged to complete the questionnaire at both time points

(pre and post mmpc), the movement of staff through facilities made it more likely that

only a small percentage of staff would have completed both pre and post mmpc

questionnaires. The data were therefore analysed with statistical methods for independent

groups. The results need to be interpreted with caution, because there are confounding

elements as the groups are not truly independent.


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Descriptive responses are reported for all questions both pre and post mmpc. The

questionnaire identified professional levels of staff (i.e. registered nurse, enrolled nurse

and assistant in nursing), making some comparison between groups possible.

PHASE THREE:

In this phase the development and trial of the multidisciplinary mmpc for residents with

end-stage dementia was undertaken. This part of the study adopted a case management

approach, with the research team tracking the care required and received by residents who

had been identified with end-stage dementia and requiring a palliative approach to their

care.

The mmpc introduced into the two facilities was based on the publication Guidelines for A

Palliative Approach in Residential Aged Care Facilities (Commonwealth of Australia

2003).

The principles forming the basis of the mmpc in this study were:

1. a palliative approach could be provided in the residents familiar surroundings ifadequately skilled staff were available

2. a multidisciplinary team that promoted goal setting in collaboration with the familywas critical to providing a palliative approach

3. care should promote quality of life and dignity of the resident4. both health professionals and families were aware of any legal or non-legal

advance directives, in particular with regard to life-sustaining treatment measures

such as hydration and nutrition, or had conversations with the person with

dementia in the past in which the person had indicated their wishes in the event of

severe debilitating illness

5. health professionals and families would agree to adhere to any legal advancedirectives the resident had expressed

6. the resident had impeccable and ongoing assessment and adequate treatment ofpain and other symptoms

7. the resident had spiritual and psychological support8. the family would be supported throughout the trajectory of care and in particular

would be made aware of the signs of impending death so as to facilitate the

residents and familys wishes at death and in bereavement

9. the use of trained palliative care volunteers could be integrated into the

multidisciplinary team to provide a palliative approach

Support for implementation:

1. Education for nursing staff on the principles of a palliative approach (as describedin Phase Two).

2. Multidisciplinary case conferencing with the resident, their family, nursing,medical and allied health staff using the Enhanced Primary Care Guidelines

(Harvey 2006).

The aims of the mmpc case conference were to: identify care needs from a multidisciplinary perspective


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identify outcomes to be achieved by members of the mmpc team giving careand service to the resident

identify the tasks that need to be undertaken to achieve those outcomes

allocate those tasks to members of the mmpc team

assess whether previously identified outcomes (if any) have been achieved

3. Support for nursing staff in the implementation of an mmpc. This included:

mentoring by research staff member to assist in facilitating the mmpc caseconference

a pro forma designed by the research team to summarise information thatwould be required for discussing a palliative approach for the resident

(Appendix 3)

nursing staff reviewing care plans and documentation following the mmpc caseconference to incorporate goals of care as discussed with the multidisciplinary

team and family

formal liaison and support available from the area palliative care service forboth nursing staff and general practitioners

Implementation of the model of multidisciplinary palliative care

Senior nursing staff were asked to identify residents within their facilities who may be

suitable for inclusion in the study.

Inclusion criteria:

Diagnosis of dementia in residential care notes

Incontinence

Functionally non-verbal or making noises that might appear to show distress

Showed a reduced interest in, or opposition to, taking food and fluids

Had experienced weight loss

Experienced pain

Had poor skin integrity

Had poor peripheral circulation

Judged by experienced nursing staff that they would be expected to die withinthe next 12 months

Exclusion criteria:

The resident had no diagnosis of dementia

The resident was not considered to be in the end-stage of their disease as decidedby the GP, the multidisciplinary team, palliative care consultant and the residents

lawfully authorised representative(s)

Permission for inclusion in the study could not be obtained from the residentslawfully authorised representative(s)

There was, or had been, family conflict about their clinical management

Permission for inclusion in the study could not be obtained from the residentsGP.


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a case note audit for each resident who died during the study period using the SM-EOLD that had been used for residents in Phase One

participant observation and photography (where possible and if consent wasobtained) of nursing staff, family members and residents

interviews conducted with nurses, doctors, multi-disciplinary personnel and

ancillary staff, focusing on the management of the residents signs and symptomsand overall wellbeing during his/her final stages

interviews with families regarding their perception of the palliative approach fortheir relative

interviews with bereaved family members for residents who had died during thestudy period, including the administration of the SWC-EOLD scale used to

retrospectively review satisfaction with care for bereaved carers in Phase One

administration of the palliative care nursing staff questionnaire prior to and afterthe introduction of the mmpc


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RESULTS

PHASE ONE

Case Note Audits prior to the mmpc

Of the 25 residents included in the retrospective audit, three (12%) had aconference relevant to palliative care recorded in their files in the 90 days

immediately prior to death. Of these three, two had the involvement of the family,

General Practitioners and nursing staff members and one was attended only by

nursing staff and no family. In the two multidisciplinary conferences the issue of a

palliative approach and psychosocial issues were discussed. However, in the

nursing only conference, despite being conducted only 19 days before the resident

died, no documentation of the discussion of a palliative approach was recorded in

the nursing notes. All three case conferences were recorded on a standard form

used by the facilities but no formal structure to record planned results of actions

from the conference was evident in the case notes.

Only 2 (8%) of the 25 residents had an Advance Health Directive (AHD) althoughwe were able to find documentation in 19 (76%) of the residents notes that

indicated the person required a palliative approach in the 90 days prior to death.

The median number of days for which the actual delivery of palliative approach

was documented for these residents was three days, indicating this mode of care

was introduced only when the resident was very close to death.

The SM-EOLD scale was used to quantify symptoms experienced by the residentsin the 90 days prior to death. Figure 1 indicates that agitation, resistiveness to care,

pain and skin breakdown were the most common symptoms recorded in the

residents case notes in the 90 days prior to death. Fear, depression and anxietywere only recorded for a small number of residents but this may be more likely to

reflect a failure to record these symptoms in the notes rather than the absence of

these symptoms altogether (Figure 1).

Figure 1- The SM-EOLD Scale for residents who died prior to theintroduction of the mmpc

0% 20% 40% 60% 80% 100%

Calm

Skin Breakdown

Pain

Resistiveness to care

Agitation

Depression

Shortness of Breath

Anxiety

Fear

Never

Once a month2-3 days month1 x wk


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Case Note Audits following the mmpc

Of the 17 residents who participated in the mmpc 12 (71%) had a palliative caremmpc conducted as part of the study. Attendance at these mmpcs varied but all

were attended by the residents General Practitioner, at least one senior nursing

staff member and a member of the research team. Allied health staff varied from

social workers, occupational therapists, physiotherapists and pastoral care workers.

In all but two mmpcs at least one member of the family was present.

The 5 residents who did not have an mmpc during the study period died prior tothe mmpc being conducted. However, for oneof these residents a case conference

had occurred prior to the introduction of the mmpc. For this resident the issues of

advance directive and palliative care were discussed and documented.

For the 9 residents who died during the study period case notes were audited usingthe SM-EOLD scale. This indicated that the symptoms of pain, resistiveness to

care, skin breakdown, agitation and shortness of breath were the most common

symptoms recorded in the residents case notes in the 90 days prior to death.Depression was not recorded at all and fear only for one resident (Figure 2).

Figure 2 - The SM-EOLD Scale for residents who died following theintroduction of the mmpc

0% 20% 40% 60% 80% 100%

Calm

Skin Breakdown

Pain

Resistiveness to care

Agitation

Depression

Shortness of Breath

Anxiety

Fear

Never

Once a month

2-3 days month

1 x wk

Only 2 (11.8%) of the 17 residents had a written an Advance Health Directive,however 9 (52.9%) had appointed an Enduring Power of Attorney and all but 2

residents had funeral details recorded. Both of these 2 residents had appointed an

Enduring Power of Attorney. One of the residents with an Advance Health

Directive also had appointed an Enduring Power of Attorney.


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Comparisons of Case Note Audits

The case notes of 25 residents who died prior to the introduction of the mmpc and the case

notes of the nine residents who had died following the mmpc were audited using the SM-

EOLD The difference in numbers pre (n=25) and post (N=9) mmpc meant it is not feasibleto perform inferential statistical comparisons of the data, but as can be seen in Table 1

there are some differences in the recording of symptoms. Shortness of breath, pain,

anxiety, resistiveness to care and agitation were recorded more frequently for the nine

residents following the introduction of the mmpc. It appears the focus on the importance

of accurate and timely documentation of symptoms during the education sessions accounts

for an increase in awareness of symptoms and better reporting. Ratings of pain illustrate

this point. Following the introduction of the mmpc pain was reported for a greater number

of residents as occurring as frequently as weekly with a lower number reporting pain as

never present. The education program addressed the importance of documenting the

presence of pain and the effectiveness of any interventions. A higher recording of the

presence of pain may indicate that the education sessions were effective, leading to better

assessment and better practice.

Table 1 - The SM-EOLD for residents prior to and following the introductionof the mmpc

Never Once a month 2-3 days month 1 x wk

% % % % % % % %

Pre Post Pre Post Pre Post Pre Post

Calm 0 0 0 0 4 22.2 96 77.8

Skin Breakdown 20 11.1 20 22.2 12 11.1 48 55.6

Pain 24 0 12 0 24 22.2 40 77.8

Resistiveness to care 48 22.2 20 0 32 11.1 28.6 66.7

Agitation 60 11.1 12 11.1 28 44.4 19 33.3

Depression 96 100 4 0 0 0 0 0

Shortness of Breath 64 11.1 24 66.7 4 22.2 8 0

Anxiety 88 55.6 8 22.2 4 0 0 22.2

Fear 96 88.9 4 11.1 0 0 0 0

The SWC-EOLD prior to the mmpc

Carers whose relative had died in the 12 months prior to the introduction of themmpc were asked to complete the SWC-EOLD Scale during an interview. Table 2

indicates high satisfaction levels for involvement in decision making (Q1),

measures for comfort care (Q3), sensitivity to carer needs (Q4), nursing assistance

(Q7) and provision of treatments that the person would have benefited from (Q9).

Q2, Q5 and Q10 are negative questions. Results for Q2 and Q5 therefore indicatesatisfaction in that carers strongly disagree or disagree that they needed more


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information or did not understand the persons condition. Results for Q10 indicate

that there was some dissatisfaction with the medical care received with 56% of

carers agreeing or strongly agreeing with this statement. These results are

supported by Q6 which indicates 40% of carers did not know who was in charge of

care and Q8 where 40% of carers felt medications were not clearly explained.

Table 2 - The SWC EOLD Scale prior to the introduction of the mmpc

Question StronglyDisagree

Disagree Agree StronglyAgree

N % N % N % N %

1 I felt fully involved in all decision

making.

1 4 3 12 12 48 9 36

2# I would probably have made

different decisions if I had had more

information.

3 12 15 60 5 20 2 8

3 All measures were taken to keep mycare recipient comfortable.

0 0 2 8 10 40 13 52

4 The health care team was sensitive

to my needs and feelings

0 0 2 8 12 48 11 44

5# I did not really understand my care

recipient's condition.

3 12 16 64 5 20 1 4

6 I always knew which doctor or

nurse was in charge of my care

recipient.

1 4 9 36 11 44 4 16

7 I feel that my care recipient got all

necessary nursing assistance.

0 0 0 0 10 40 15 60

8 I felt that all medication issues were

clearly explained to me.

2 8 8 32 10 40 5 20

9 My care recipient received all

treatments or interventions that he or

she could have benefited from.

0 0 0 0 12 48 13 52

10# I felt my care recipient needed better

medical care at the end of life.

9 36 2 8 8 32 6 24

# These questions are reverse coded

The SWC-EOLD following the mmpc

Carers of residents who died after the introduction of the mmpc were asked tocomplete the SWC-EOLD scale during a bereavement interview. Table 3 indicates

high satisfaction levels for measures for comfort care (Q3), sensitivity to carer

needs (Q4), nursing assistance (Q7) and provision of treatments that the personwould have benefited from (Q9). Q2, Q5 and Q10 are negative questions. Results

for Q2 and Q5 therefore indicate satisfaction in that carers strongly disagree or

disagree that they needed more information or did not understand the persons

condition.Results for Q10 indicate that there was satisfaction with the medical

care received with 87.5% of carers disagreeing or strongly disagreeing with this

statement. Q6 indicates 37.5% of carers did not know who was in charge of care

and Q8 indicates 62.5% of carers felt medications were not clearly explained,

suggesting that carers accept medical care as being as good as is possible and

perhaps the authority of the doctor as the expert, without necessarily having their

needs for information met.


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Table 3 - The SWC- EOLD Scale following the introduction of the mmpc

Question Strongly

Disagree

Disagree Agree Strongly

Agree

N % N % N % N %1 I felt fully involved in all decision

making.

0 0 3 37.5 2 25 3 37.5

2# I would probably have made

different decisions if I had had more

information.

3 37.5 4 50 0 0 1 12.5

3 All measures were taken to keep my

care recipient comfortable.

0 0 0 0 2 25 6 75

4 The health care team was sensitive

to my needs and feelings

0 0 1 12.5 4 50 3 37.5

5# I did not really understand my care

recipient's condition.

2 25 6 75 0 0 0 0

6 I always knew which doctor or

nurse was in charge of my care

recipient.

2 25 1 12.5 3 37.5 2 25

7 I feel that my care recipient got all

necessary nursing assistance.

0 0 0 0 3 37.5 5 62.5

8 I felt that all medication issues were

clearly explained to me.

2 25 3 37.5 1 12.5 2 25

9 My care recipient received all

treatments or interventions that he or

she could have benefited from.

0 0 0 0 5 62.5 3 37.5

10# I felt my care recipient needed better

medical care at the end of life.

3 37.5 4 50 0 0 1 12.5

# These questions are reverse coded

Comparisons of the SWC-EOLD prior to and following the introductionof the mmpc

In addition to reporting percentage agreements and disagreements for each personcompleting the SWC-EOLD a total score can be calculated.

The possible scores on the SWC-EOLDscale range from 10 to 40 with a higherscore indicating more satisfaction. The SWC-EOLD scores for carers prior to the

mmpc ranged from 23 to 39 with mean of 30.68 (standard deviation 4.57). The

SWC-EOLD scores for carers after the mmpc ranged from 24 to 34 with a mean of

31 (standard deviation 3.8), indicating a slightly higher satisfaction rating, however

this was not statistically significant. The sample size is too small to have statistical

power, and the results need to be interpreter with caution. At best it indicates thatthe direction is positive, and that in a larger study results may prove the

effectiveness of the mmpc. In this study the findings were strengthened by the

results of the interviews with carers (as reported in the next section).

Figure 3 indicates the differences between ratings on the SWC-EOLD for bereavedcarers prior to the and after the introduction of the mmpc:

o More carers post mmpc indicated they would not have made differentdecisions and therefore were satisfied with the direction of care provided.

This difference was not statistically significant.

o More carers post mmpc agreed that all measures were taken to keep theresident comfortable. This difference was not statistically significant

o More carers post mmpc understood the care that was being provided. Thisdifference was not statistically significant


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o More carers post mmpc disagreed that they felt the resident needed bettermedical care at the end of life, indicating satisfaction with care. This

difference was not statistically significant

.

Figure 3 - The SWC-EOLD Scale prior to and following the introduction ofthe mmpc

Note a higher mean score indicates satisfaction

1 I felt fully involved in all decision making.

2 I would probably have made different decisions if I had had more information.

3 All measures were taken to keep my care recipient comfortable.

4 The health care team was sensitive to my needs and feelings

5 I did not really understand my care recipient's condition.

6 I always knew which doctor or nurse was in charge of my care recipient.

7 I feel that my care recipient got all necessary nursing assistance.8 I felt that all medication issues were clearly explained to me.

9 My care recipient received all treatments or interventions that he or she could have

benefited from.

10 I felt my care recipient needed better medical care at the end of life.

0

0.5

1

1.5

2

2.5

3

3.5

4

Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10

SWC-EOLD

Mean

Pre mmpc

Post mmpc


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Interviews with Bereaved Carers prior to the mmpc

Twenty-five carers whose family member had died before the introduction of the mmpc

were interviewed by a member of the research team to ascertain from their perspective

satisfaction with care and issues concerning palliative care for their relative who had died.Interviews were conducted in the carers own home and tape recorded. Interviews were

transcribed and analysed thematically by two members of the research team using NVIVO

software. In addition, at the interview carers were asked to complete the SWC-EOLD

scale (already reported).

Analysis of Interviews

All interviews were read without coding, and then re-read to identify possible preliminary

codes. A total of 20 preliminary codes were developed (see Appendix 5). All interviews

were initially coded using these 20 codes. Information at each code was then reviewed andthe coding categories refined and reduced to seven final themes.

1. Nobody sat us down and said This is going to happen2. To have one person that really knew her and me3. Why would youwant to keep living like that4. I don't know if it was pain or the dementia5. Somewhere private for the last few days6. Reluctance for interventions as death approaches7. I wonder what Ill do when I havent got him

Nobody sat us down and said This is going to happen

Carers were asked to reflect on whether they had recognised any change in their relatives

health to indicate that a palliative approach may be warranted or whether they had been

informed by nursing or medical staff that a change in the individuals condition indicated

this was the case.

Some comments that indicated relatives were aware of their relatives condition and

particularly the possibility of impending death included:

No, well as I say we expected it then. My sister didnt but I did, cause you could see shewas deterioratingbecause when my sister said mums been moved into the other section

(non-secure area), and I said well thats the end of her. She wont last there long. (I

dont know how long she was there) I dont think it was very long, 2 or 3 months. (96)

Oh yes you could see he was deteriorating every day we used to see himwe knew it was

coming, the nurses were pretty, they deal with it all the time and they knew exactly and

they sort of let us know that when they moved him to the last room where the family

spends time, he was only there for a couple of days.we could see the changes over the

years, the last two years, my attitude was we should hurry and not let him suffer. I did

ask, is there anything I can do?, and my daughter was reading up on, cause they leave you

this little book in the room, just to explain things to you, what these little stages are and

how before they actually die. (187)


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I didn't realise he was in the last stages, no, no, no. No, not really. Then again we were

just - even when I looked after him - if he was late stirring in the morning I would send my

husband in, just in case. I couldn't face the fact that he might not be with us any more.(24)

Some families had been given an indication by health professionals prior to coming into

the RACF:

The nurse in charge at the hospital informed us that she had seen quite a few with this

particular affliction and she said they usually only last 12 to 18 months so she was pretty

well spot on. She was the first one who was truthful in telling us what to expect, what

length of time he had left. We appreciated that. (186)

This comment indicates that medical staff in the acute care environment had not clearly

discussed the trajectory of dementia with the family but one of the nursing staff had

broached this topic. As indicated this was greatly appreciated by the family.

They said she would have to go into care. There was no way I could do that here. She

would literally have to be showered, toileted. She could get out of bed, still shuffle to the

toilet. Because of her strong will, she tried. Then I had to start to look around. That was

hard. She was dying. I knew, wherever she went, it wouldn't be long. It was the next step.

It was a lot of strain on me at that time, looking for places. .As far as going into

palliative care, I think the palliative time is the hardest time, I guess, for saying goodbye

and preparing yourself and letting them go. For the carer, maybe the palliative time is the

carer's time as well, when they need the support the most..I needed someone for me

too. I was anxious. I was pleading with my mum, "Go, Mum. Go peacefully. Don't fight

it." I didn't think I would ever say that. I didn't want to see her suffer. It was good that -they listened as far as what my mother wanted, although she couldn't speak. I wanted her

to go without machines or drugs. Even antibiotics - as long as she wasn't in pain. There

was no quality of life for her. (99)

There was a need for health care professionals to realise that the relatives were not

necessarily aware of how much a person had deteriorated or the implications of infections,

frailty and deterioration:

Everything was malfunctioning. Yes it was the doctor told us that on the last day, that

everything was just gradually going down, the heart, the liver, kidneys and we didnt

realise he was quite at that stage.cause we could see that he was sinking but people dorally, I mean he'd had a previous infection and he looked, he just sort of sat in a huddle

but he got better from that thats why I think um we could have been a little bit better

informed.The doctor came and we were over visiting and hed had a chest infection

all week and he came down with pneumonia, and the doctors said that he probably had a

few days but he didnt in actual fact because he died that night but Id gone home but my

sister has a sixth sense about these things because she went back with one of her

daughters and he died while she was there but I wasnt there, I should have been but I

wasnt.to tell you the truth I didnt expect it to be as quick. (335)

One carer identified that it was sometimes hard to get an idea of exactly what was

happening and some idea of timeframes:


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We made a point of going there one afternoon. We went and sat on the seashore and

waited for him (the GP) to do his rounds. I got him to ring me on my mobile so I could

come in. He was a little hard to nail down. That's par for the course. I appreciate that.

That was at a time when dad was no longer eating or drinking. He asked us what level of

care did we want for him and that's a tough decision but we both said - we are not medical

- medically qualified. He had no quality of life so we said "Let him go. which is whathappened. We only met him once or twice. We rang him a couple of times at his rooms.

We spoke to him. The nursing staff kept us informed with medication.It wasn't

explained to us. Nobody sat us down and said "This is what is going to happen." All along

the way it was said to us - I was getting to a point where I had enough so to speak and it's

really sad. I felt I was being a bit cold about it and saying it was time for him to move on.

I was like "How long is this going to be?" They said there was no timeframe. It could take

a day or a week or two weeks. Whenever I asked they were up-front about it and

explained it as nicely as they could. Nobody sat down with us like the doctor and said "No

further care." Nobody physically gave us a spiel about it. I think in our minds we were

clear on what was going to happen. (355)

I was there the night before and nobody indicated to me that they thought she was any

different or that they thought she was dying but I felt it. I came home and I rang my sister.

I said "Have you been up to see (name suppressed) this week?" She said "No." I said "If I

were you I would get up there tomorrow morning." They rang me up at six o'clock that

Saturday morning and she was gone. If you are seeing someone all the time you don't

notice so much but, if you see someone every second or third day, they change. It was her

breathing I had noticed. It was not 100 percent. She was 92.

I knew that she wasn't 100 percent but a couple of other times she had come very close to

it too where all of a sudden she was not well and I thought "You don't look good. You

don't sound good." She came good. She sort of brightened up and she was fine. That was

about a year ago. It was a few years before that. Her general health remained about the

same but, because when you go there she is in bed all the time and she is bathed and

clean, it wasn't that obvious that she was deteriorating. You could still notice a bit of

deterioration. (333)

Even at the last day when she began to die, that was about a week previous but when it got

to the last night I spent a fair bit of time down there. I thought she would be gone by the

morning. I knew it was going to happen. It was a question of time and she was gone in

the morning. He (the GP) had a chat to me. He told me the situation when she was dying -

this will die off and that will die off and finally the last thing will go. You don't just die

like that. It seems you go in stages. It took over a week. Bits and pieces died off until shefinally died. (954)

These quotes illustrate that for bereaved carers prior to the introduction of the mmpc

limited information was provided regarding the possible trajectory of dementia or

impending death of their relative. This was despite carers themselves often having an idea

that their relative was deteriorating, likely to die and they would have welcomed

conversations regarding this. In the final quote a conversation with the general

practitioner meant the carer was clear on what might happen and was able to be present at

the time of death.

To have one person that really knew her and me


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Carers made comments about aspects of care they were dissatisfied with. This ranged

from lack of time staff had to spend with their relative, co-ordination of care, lack of

information, perceptions of a loss of identity of the person by staff and not enough

emotional support for the carers both during and after their relatives death. The following

quotes by carers seem to sum up a problem within the residential aged care system that is

exacerbated when someone is dying:

The thing I felt most is to really have one person - I know it's impossible - that really

would know her well enough - and me. That would be the ideal situation. I was talking to

different nurses at different times. They are doing different shifts. You get the agency

nurses. You are getting lots of different people at the facility. You are trying to

communicate with them. You might get told one thing by one. Occasionally you make a

connection.(99)

She was just like a number there, they wouldnt tell you anything, either you could stand

at the desk for about 10- minutes and they would eventually say, can we help you, and

wed say hows mum, oh yes shes good, shes good you know. And you would go in andmum wasnt good. (96)

I always felt that she was just lonely because she wasn't with the others. She loved

her music and I don't think that was played enough to her. I think she should have had

her music. We took a radio and cassette player over to her. I think she should have had

that continuously playing to her. She loved her music. She would sit there and whistle.(142)

I think possibly there was a lack of communication between whoever was on that

particular shift and the next shift and ah the boss man perhaps they just didnt get

together enough to discuss how unhappy he was where he was. .I would try to get himinto an area where he had a little less noise and little bit more privacy, cause he did have

to fight off a couple of men that happened to come round and blunder through his curtain,

thats why I feel a sliding door that staff can open and he can open from the inside just to

give a little more privacy for a private person. ..just for that little bit more privacy. I

think thats very important. (35.

I think the main thing is staff. I think the nurses done everything they could, ah but I think

they were overworked and they would have liked to give the patients more sort of care but

they done a good job with the hours they were there. (3)

I know that they were horribly understaffed as most care places are. He was bedbound

and I would say in the fetal position all the time. I used to wheel him out in his special

chair outside to get some sunshine and away from inside. It used to worry me a bit that

when I left him - I used to go up every day and feed him at lunchtime. It used to worry me

- when I left I know the girls were anxious to get them all to bed because of the time factor

and the staff. Then I thought "Well, that's going to go on until the next day until almost

nearly lunchtime. (29)

Despite these negative comments carers also referred to the positive way that their

relatives had been cared for in the facility. These included comments concerning comfort

for the resident and carer, respect and being able to provide what the resident required:


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They were wonderful they did keep her comfortable I will admit. (96)

He was very comfortabl

hospice final report [1]

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