Hospice Final Report [1]

DEVELOP, TRIAL AND EVALUATE A MODEL OF MULTI-DISCIPLINARY PALLIATIVE CARE FOR RESIDENTS WITH END-STAGE DEMENTIA CHIEF INVESTIGATOR Professor Jenny Abbey CO-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 Funded by The Prince Charles Hospital Foundation 2005

FINAL REPORT FEBRUARY 2008

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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 Research Queensland 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 Women’s Hospital

Professor Helen Edwards

DipAppSc., BA(Hons), PhD, RN, FRCNA Head, 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 and Education, 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

Alzheimer’s 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 .........................................11 CONCLUSIONS ...........................................................................................................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 .......................................................................................17 STUDY DESIGN........................................................................................................18 ETHICAL APPROVAL ..................................................................................................18 PHASE ONE............................................................................................................18 Resident case note audit.......................................................................................18 Carer interviews...................................................................................................18 PHASE TWO ...........................................................................................................19 Staff Education.....................................................................................................19 Knowledge of a Palliative Approach ...................................................................20 PHASE THREE: ......................................................................................................21 RESULTS ...................................................................................................................25 PHASE ONE............................................................................................................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 PHASE TWO ...........................................................................................................42 Education sessions ...............................................................................................42

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Staff Pre mmpc Questionnaire Results ................................................................42 Staff Post mmpc Questionnaire Results ...............................................................45 PHASE THREE .......................................................................................................50 A profile of residents who participated in the mmpc ...........................................50 Resident profiles...................................................................................................57 Case conference: an example .............................................................................58 Interviews 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 1 – THE SYMPTOM MANAGEMENT AT THE END-OF-LIFE DEMENTIA SCALE ..................................................................................................................................65 APPENDIX 2 – THE SATISFACTION WITH CARE AT THE END-OF-LIFE DEMENTIA SCALE .......................................................................................................................67 APPENDIX 3 – MMPC PRO FORMA ..............................................................................68 APPENDIX 4 – ASSESSMENT 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 7 —PRE – INTERVENTION RESPONSES TO QUESTIONS FROM THE PCQN BY PROFESSIONAL GROUP ...............................................................................................86 APPENDIX 8 POST – INTERVENTION RESPONSES TO NON PCQN QUESTIONS BY PROFESSIONAL GROUP ...............................................................................................87 APPENDIX 10 – POLICY FOR A PALLIATIVE CARE APPROACH ...................................91 APPENDIX 11 – PALLIATIVE CARE PLAN ...................................................................92 APPENDIX 12 – WORK INSTRUCTION FOR A PALLIATIVE APPROACH .........................98 APPENDIX 13 – PALLIATIVE 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......................................................................................................................26 Table 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 ........................................46 Table 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 Australia’s 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 one in 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 19978, 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 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 and evaluated 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 for residents and families prior to the introduction of a multidisciplinary model 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: • • • • •

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The routine use of case conferencing to discuss a palliative approach for residents with 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 this mainly 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 relative’s 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 was deteriorating 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 around o 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 in a 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 raised and 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 for their care.

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Carers also identified the loss they felt and the need for an adjustment in terms of what 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 general practitioners 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.

Main findings from this phase: •

•

• •

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Undertaking a second questionnaire with nursing staff proved to be difficult. The nurse 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 enrolled nurses (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 may have meant that follow-up results were not representative of the broad group of staff. Nevertheless, there were statistically significant differences in staff responses to some 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 families o Perceptions that the clinical team did not work together with the family o Belief that pain was not well managed o 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 multidisciplinary 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 resident’s 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 bereaved carers 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.

Main findings from this phase: •

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•

•

•

All residents were highly dependent for activities of daily living and more than half 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 saying ‘no’, 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 included pain, ‘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 of important palliative issues such as pain and symptom management, management of loss of the ability to swallow, discussion of the resident’s wishes if known regarding death and dying, and any family concerns. In both groups issues of nutrition and hydration were discussed. This occurred in the 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 Care scale (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 information to make decisions and remained comfortable with the decisions they had made. o More carers post mmpc agreed that all measures were taken to keep the resident comfortable. o More carers post mmpc indicated they were given enough information to understand 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 care provided. 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 concern with 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 the seventeen 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 given adequate 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 required to implement a palliative approach in RACFs. Staff provided positive feedback on the implementation of the mmpc in their RACFs. 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 positive reflections 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 benefit from 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 in facilitating an mmpc and case conferencing. 3. Continued education for all levels of staff based on the palliative care guidelines will be needed 4. Provision within RACFs for staff to discuss the care provided to residents who have 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 developed in this research be further validated and trialled 6. RACFs to undertake regular audits of palliative and end-of-life care to identify practices 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 higher cortical 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 confusion and disorientation speech and the ability to communicate often deteriorate to the point where the person 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 person’s ability or desire to move independently can decline, leaving them bed/chair bound the person’s capacity for self-care progressively diminishes, making them totally dependent on carers the person’s ability to eat independently gradually disappears, often associated with 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 atrophy and 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 Alzheimer’s Disease (AD) and present challenges to carers to define positive approaches to care to ensure the individual’s 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 - 14

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 noncancer 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 Cameron’s 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 choices and 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 longterm 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 framework around 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 nurse’s 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 takes skill 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 usually not 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 et al. 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 Molloy’s 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 multidisciplinary 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 palliative care (mmpc) 2. To evaluate the quality of the end-of-life experience before and after the introduction of the mmpc 3. To evaluate the palliative care knowledge and attitudes of staff and GPs concerning people with end-stage dementia before and after the introduction of the mmpc.

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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 retrospective audit 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 to capture 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 the 25 residents whose care was audited using the SM-EOLD. The quality of the end-oflife experience was measured using the scale ‘Satisfaction with Care at the End-ofLife 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 predeath 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 a comprehensive 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 at each RACF in one facility sessions on each ward were held at change of shift between the afternoon 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-face lecture supply to General Practitioners of a CD-ROM of the guidelines produced by the Commonwealth 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, the evidence 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 management o Dysphagia o Nutrition and hydration o Weight loss

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o o o o

Bowel care Skin integrity Fatigue Pain

Session 3 • • • • • • • •

End-of-life (terminal) care ‘I don’t 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 relative’s 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 resident’s familiar surroundings if adequately skilled staff were available 2. a multidisciplinary team that promoted goal setting in collaboration with the family was critical to providing a palliative approach 3. care should promote quality of life and dignity of the resident 4. 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 advance directives the resident had expressed 6. the resident had impeccable and ongoing assessment and adequate treatment of pain and other symptoms 7. the resident had spiritual and psychological support 8. 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 resident’s and family’s 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 described in 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 care and 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 case conference • a pro forma designed by the research team to summarise information that would be required for discussing a palliative approach for the resident (Appendix 3) • nursing staff reviewing care plans and documentation following the mmpc case conference to incorporate goals of care as discussed with the multidisciplinary team and family • formal liaison and support available from the area palliative care service for both 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 within the 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 decided by the GP, the multidisciplinary team, palliative care consultant and the resident’s lawfully authorised representative(s) Permission for inclusion in the study could not be obtained from the resident’s lawfully 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 resident’s GP.

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General Practitioner involvement Prior to the commencement of the mmpc the nine general practitioners who provided care at either one or both of the facilities were sent an information pack. General practitioners were then contacted by the Chief Investigator to discuss their involvement in the mmpc and specifically their availability for mmpc case conferences. Of the nine approached, 2 indicated they would have been willing to participate but were closing their practices, 3 general practitioners agreed to be involved in the project and the remaining 4 declined as they did not have care of residents who they thought were currently suitable or would be during the study period.

Recruitment of residents and families Nursing staff were asked to identify residents who met the criteria for inclusion in the mmpc and whose care was provided by one of the three general practitioners who had agreed to support the mmpc. Once the nursing staff had identified a resident as meeting these criteria, their family member or substitute decision maker was contacted by the nursing staff to ascertain whether the research team could approach them and invite them to participate in the study. Where possible (depending on geographical location) a member of the research team met in person with this person and gained consent. The resident’s general practitioner was then invited by the nursing staff to participate in a multidisciplinary palliative care case conference. The target sample for residents to be included in the mmpc was twenty five from the two facilities, based on the number of studies in the retrospective phase of the research. Recruitment in the larger of the two facilities became more difficult when one of the three GPs chose not to continue participating in the study. As this GP had the care of a significant portion of residents in the facility, estimated to be 70-80% of the facility’s total population, recruitment in this facility was affected (6, compared to 11 in the other facility). Due to financial constraints it was not possible to extend the study time, therefore the final sample for Phase Three was seventeen residents rather than the anticipated twenty five. A member of the research team visited the resident at least fortnightly to record care that had been required and provided (Appendix 4), informally interview staff regarding the residents’ condition and where possible speak with family members.

Data collection A range of data collection methods were employed to evaluate the mmpc. These included: • •

recording by the research team of the documented care provided to the resident and family each fortnight from the residents’ clinical case notes, using a template designed for this purpose, to ensure consistency of data collection documentation of mmpc goals and outcomes

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• • • • • •

a case note audit for each resident who died during the study period using the SMEOLD that had been used for residents in Phase One participant observation and photography (where possible and if consent was obtained) of nursing staff, family members and residents interviews conducted with nurses, doctors, multi-disciplinary personnel and ancillary staff, focusing on the management of the resident’s signs and symptoms and overall wellbeing during his/her final stages interviews with families regarding their perception of the palliative approach for their relative interviews with bereaved family members for residents who had died during the study 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 after the 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 a conference 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) although we 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 residents in 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 anxiety were 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 the introduction of the mmpc

Fear Anxiety Shortness of Breath Never Once a month 2-3 days month 1 x wk

Depression Agitation Resistiveness to care Pain Skin Breakdown Calm 0%

20% 40% 60% 80% 100%

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Case Note Audits – following the mmpc •

•

•

Of the 17 residents who participated in the mmpc 12 (71%) had a palliative care mmpc 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 to the mmpc being conducted. However, for one of 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 using the 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 the introduction of the mmpc

Fear Anxiety Shortness of Breath Depression

Never Once a month

Agitation

2-3 days month

Resistiveness to care

1 x wk

Pain Skin Breakdown Calm 0%

•

20% 40% 60% 80% 100%

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 SMEOLD The difference in numbers pre (n=25) and post (N=9) mmpc meant it is not feasible to 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 introduction of 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 the mmpc 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 indicate satisfaction in that carers strongly disagree or disagree that they needed more

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information or did not understand the person’s 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

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. # These questions are reverse coded

Strongly Disagree

Disagree

Agree

Strongly Agree

N 1

% 4

N 3

% 12

N 12

% 48

N 9

% 36

3

12

15

60

5

20

2

8

0

0

2

8

10

40

13

52

0

0

2

8

12

48

11

44

3

12

16

64

5

20

1

4

1

4

9

36

11

44

4

16

0

0

0

0

10

40

15

60

2

8

8

32

10

40

5

20

0

0

0

0

12

48

13

52

9

36

2

8

8

32

6

24

The SWC-EOLD – following the mmpc •

Carers of residents who died after the introduction of the mmpc were asked to complete 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 person would 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 person’s 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

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. # These questions are reverse coded

Strongly Disagree

Disagree

Agree

Strongly Agree

N 0

% 0

N 3

% 37.5

N 2

% 25

N 3

% 37.5

3

37.5

4

50

0

0

1

12.5

0

0

0

0

2

25

6

75

0

0

1

12.5

4

50

3

37.5

2

25

6

75

0

0

0

0

2

25

1

12.5

3

37.5

2

25

0

0

0

0

3

37.5

5

62.5

2

25

3

37.5

1

12.5

2

25

0

0

0

0

5

62.5

3

37.5

3

37.5

4

50

0

0

1

12.5

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

•

In addition to reporting percentage agreements and disagreements for each person completing the SWC-EOLD a total score can be calculated. The possible scores on the SWC-EOLD scale range from 10 to 40 with a higher score 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 that the 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 bereaved carers prior to the and after the introduction of the mmpc: o More carers post mmpc indicated they would not have made different decisions 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 the resident comfortable. This difference was not statistically significant o More carers post mmpc understood the care that was being provided. This difference was not statistically significant - 29

o More carers post mmpc disagreed that they felt the resident needed better medical 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 of the mmpc

4 3.5

Pre mmpc

3 2.5

Post mmpc

Mean

2 1.5 1 0.5 0 Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 SWC-EOLD Note a higher mean score indicates satisfaction

1 2 3 4 5 6 7 8 9 10

I felt fully involved in all decision making. I would probably have made different decisions if I had had more information. All measures were taken to keep my care recipient comfortable. The health care team was sensitive to my needs and feelings I did not really understand my care recipient's condition. I always knew which doctor or nurse was in charge of my care recipient. I feel that my care recipient got all necessary nursing assistance. I felt that all medication issues were clearly explained to me. My care recipient received all treatments or interventions that he or she could have benefited from. I felt my care recipient needed better medical care at the end of life.

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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 and the coding categories refined and reduced to seven final themes. 1. 2. 3. 4. 5. 6. 7.

Nobody sat us down and said “This is going to happen” “To have one person that really knew her and me” “Why would you want to keep living like that” “I don't know if it was pain or the dementia” “Somewhere private for the last few days” Reluctance for interventions as death approaches “I wonder what I’ll do when I haven’t 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 relative’s 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 relative’s condition and particularly the possibility of impending death included: No, well as I say we expected it then. My sister didn’t but I did, cause you could see she was deteriorating…because when my sister said mums been moved into the other section (non-secure area), and I said well that’s the end of her. She won’t last there long. (I don’t know how long she was there) I don’t think it was very long, 2 or 3 months. (96) Oh yes you could see he was deteriorating every day we used to see him…we 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) - 31

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 didn’t realise he was quite at that stage….cause we could see that he was sinking but people do rally, 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 that’s why I think um we could have been a little bit better informed……….The doctor came and we were over visiting and he’d 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 didn’t in actual fact because he died that night but I’d 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 wasn’t there, I should have been but I wasn’t….to tell you the truth I didn’t 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 what happened. 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 she finally 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 relative’s 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 wouldn’t tell you anything, either you could stand at the desk for about 10- minutes and they would eventually say, can we help you, and we’d say how’s mum, oh yes she’s good, she’s good you know. And you would go in and mum wasn’t 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 didn’t get together enough to discuss how unhappy he was where he was. ….I would try to get him into 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, that’s 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 that’s 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 comfortable, yes. They all treated him so lovely, they really did. I couldn't fault it. It is such a busy place. Looking after a person that has been like that, it is such a constant sort of job. We all feel - the whole family believed that he was so well looked after down there. (24) In the nursing home I can't fault them in any way. My husband and I were very happy with everything that was done. There was nothing that - whatever my husband asked them to do, they did. (777) I stayed with her all night. She had a real peaceful night. They were very good to me. They allowed me to stay the night. They made a chair for me. There was a couple of older nurses like angels. They kept popping in. (4913) The way they treated us and her when she was dying I thought was lovely. It was just beautiful. I have no complaints. They were continually with us. They gave us a book to read to explain what she would be going through. They had her in the one room on her own. That was nice that there was nobody else there. They kept making her look pretty, fresh. She looked nice…….. They let us stay with her as long as we wanted to afterwards. We all took our turns on our own and we were all there together and we all left together. (85)

Carers were acutely aware of the staffing issues in residential care that impacted on what well meaning and skilled staff could achieve within the funding constraints. The positive comments which reflected how carers felt the resident had been cared for were predominantly focused on comfort. Unfortunately, negative comments illustrate the frustration with dealing with an understaffed and disjointed care system. The previous theme of carers not being provided information about deterioration and impending death is further illustrated by this theme, the inability for carers to have one person as the contact to discuss concerns. Why would you want to keep living like that For most carers’ there was clear recognition and acceptance that once their relative had reached the stage where eating and drinking become difficult or food and drink was being refused that this was a sign of impending death and no artificial hydration or nutrition should be provided. First of all at the beginning of the fortnight he said he was hungry, he didn’t have his eyes open but he said he was hungry and I said to the nurse to my friend actually he husband was down there and he’d passed away down there to, and I said to her well I don’t know, if he’s lying there and even though he’s half asleep why don’t they give him food, and she told the nurse and the next time I was down there the nurse said are you worrying we are not feeding him, well I said I am actually, I said well you know I just feel that that might be killing him or something. She said no, she explained to me the body breaks down and she explained it fully to me, she said if we feed him and he is breaking down…I had at the beginning of the fortnight, I had this tea or some liquid I could dribble in his mouth, that he could just sort of swallow, in the end he just didn’t sort of swallow. And I thought to myself this well this is how you go… and I rang the Dr and he said well look, , he said you know, I think poor old (resident’s name) is getting so weak, he said, we could put a tube - 35

and feed him with a tube, but he said do you really think he would want that. He said he’d get infections and everything, and I said no, no he wouldn’t, because he would be pulling it out wherever it was, and throwing it out and I just know he couldn’t so, he was very good too, he said if you ever need me, and I can help, feel free to do so. (13) I couldn’t fault them for the care that they gave her. They would sit and persevere to feed her; I wouldn’t even try, because she would not eat for me…Why would you want to keep living like that, you know. Its not a, you can’t go anywhere your just sitting, and your not with anyone except other people who are in the same position, at least mum could talk, some of them couldn’t even talk you know. The nurses were lovely because they did talk to her and they did pay her attention and everything, and they made a fuss over her, and um, I know that you know, if you don’t want to be like that, well I suppose you wouldn’t want to eat would you, and not only that its hard work for the body to digest food isn’t it, when you are so weak and frail, the body, everything is an effort for the body isn’t it…..I wouldn’t ask them to sit there for hours pushing food into her. I think that’s cruel. I wouldn’t expect them to do that. You can offer it, but if they don’t want it I would never force feed, no, no, they did persevere a little bit and some days she would have something but then another day she might go for 3 days and not have much you know. But I would just say to them don’t worry about it, you know, just give it to her and if she wants it and if she doesn’t want it then don’t worry about it.(25) However, for one carer the decision to discontinue feeding was difficult although in the end no artificial hydration or nutrition was provided: A couple of people there, when we were talking about wanting to try and feed her and somebody said to me "Is it for you that you want to do it or is it for her?"… I felt it was for her, to keep her going. Though maybe it is me being selfish, wanting to keep her going for me. (142) In one instance, when relatives were coming from interstate, artificial hydration was offered as a possible solution for prolonging death, however to no avail: They did their best to try and get some fluids in. She eventually stopped eating. When she stopped solids they started on fluids and tried as much as they could to keep up her fluids… Her daughter lives interstate and she was coming, I think my husband asked them to put her on a drip or something and tried to keep her going until the daughter came. They did do it but she didn't last until her daughter came, yes. (355) Knowledge that a person is unable to tolerate food and fluids is emotive for family members but most were comfortable that as difficulty with this increased continued nutrition or hydration by artificial means was not appropriate. However, there were examples illustrated by the previous two quotes where nutrition or hydration was pursued and adequate explanation regarding the trajectory of dementia was not provided. In the second quote there was no acknowledgement of impending death, and extraordinary life sustaining measures were put in place that only added to the burden of care for the dying person and did not change the outcomes. Three carers described that their relative had problems with laboured breathing in a variety of ways:

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Yes she was beautiful, you know, you couldn’t do anything for her, and she was just gasping, you could tell, you just felt like blowing and giving her some of your air. (96) The breathing was a bit heavy, we could notice it was getting, it was heavy to start with and then it started getting slower and slower. But actually the last night before, that night he died, his breathing was sort of more relaxed. The change from heavy breathing to oh yeh, I think he knew his time was up. (187) There was recognition by one carer of the change in breathing patterns and the carer described it with the colloquial term ‘death rattles’ Her breathing, I’ve never seen anybody die, and um it was just her breathing….it was funny because Nan used to call it the death rattles, she used to be a nurse herself, she used to talk about when people were dying they get this death rattles she called it, it sort of went straight through my mind when I heard her, it was just her difficulty breathing that’s all it was so, it just went through my mind because that’s what she always said (352)

I don't know if it was pain or the dementia Pain was a common symptom experienced, although for the most part relatives seemed content with the management of this: I think any time they thought he had discomfort they - he would complain about his knee sometimes or things like that, they always took care. I think the nursing were very observant and, when people have dementia, they don't always think to say - or even be able to say that they have got aches and pains. Dad was still able to complain a bit in a way…He would come and go a bit with his ability to express himself. He was still able to let you know if he wasn't well. (159) Some comments referred to the link between commencing Morphine as a sign of impending death: The doctors were coming all the time, and I think probably generally we all knew nothing was going to pull dad out of this because he was just so thin and his foot was then gangrenous, the toe, it gave him a lot of pain and he was in you know had a lot of strong drugs you know Morphine and so on and I knew too that when Morphine started that would be the beginning of the end.(97) There was also difficulty of judging whether the person was in pain or it was part of the dementia that caused them to verbalise and relatives not understanding this: Fortunately they have comfortable beds there that gave her a lot of support with the water beds, air beds. That was the main thing, because of the pain she was suffering. Not only with the dementia, she had other things going on with her neck such as osteoporosis. That was very painful and it went into her shoulder. What happened is that they said they couldn't correct it because the tissue just disappears from the bones and they are just rubbing. At her age there was nothing to do but give her pain-killers. She was on pretty powerful pain-killers a lot of the time…..Occasionally when I went to the hospital she was in a lot of pain, hanging on to her shoulder. I felt in the facility, yeah, I am pleased that they were controlling it, as far as I know. When you walked through the corridor towards

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her room you could hear her crying out and groaning and she was probably doing that for a long time. She was probably upsetting other patients. I don't know. That is very hard. What can you do, I suppose? That groaning - I don't know if it was pain or the dementia. It wasn't ever really clear to me. (46) Pain assessment and management for residents with end stage dementia is a complex and difficult task. The first quote illustrate that carers were aware that it was difficult for their relative to express their pain but they felt that the nursing staff were aware of his nonverbal pain behaviours. The second quote illustrates the perception that once someone is commenced on morphine that the person will not live long and the final quote captures one of the major issues facing staff in residential aged care facilities looking after people with end stage dementia. The crying out and groaning in this instance doesn’t appear to have been resolved with the relatives and while there is acknowledgment that she was on strong pain killers the fact that she was able to be heard as they entered the facility indicated that she was not comfortable.

Somewhere private for the last few days Few residents in the facilities had a single room and staff where possible made attempts to find a private area for the resident and their relatives to spend the last few days. One of the facilities had a palliative care room which was a disused shared room. As such it had room for relatives to stay overnight. They said they would put her into that room and I said that’s good and I stayed there that night, on the Wednesday night I stayed with her, because she sort of knew and wanted me, but once they got the Morphine into her she seemed to just sleep a lot, and not really, by the Saturday night she just wasn’t aware really. I talked to her and everything but I got no response. (25) In the other facility no extra space was available so it made it harder for relatives to provide ongoing support over a period of few days: But it probably would have been nice if they’d had a bed or something or a ward that a family member could be moved in with the patient and have a bed to sleep in to stay with him, they didn’t have that for me and you know for me, that’s fine I just wanted to be with dad and that’s it. Comfort wise I suppose that um and somewhere where I could have had a shower, my mother in law lived close and I was able to go there, but I was always scared that um he would die when I was away, and one day just near the end they told me to go and have a shower in one part which was another part of the building and even then I was worried dad would pass away when. (97) Where it was possible to move the resident after death into a private viewing area this was also appreciated by the family: They moved Dad's body into an unused room that had a bed and a little sitting area. They said that we could all come down and Dad just looked like he was asleep in the bed there. All of his daughters and a couple of his sons-in-law I suppose, we were all in the room. They made us tea and coffee. It allowed us time to deal with the fact that Dad had gone. Because he looked okay, it was like we were able to say goodbye in there really and I

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think they were very good with that. The staff were very attentive to all of us. I think they did that very well (159) Few residential aged care facilities have the luxury of private rooms for all residents. In one of the facilities four bed rooms were common, although some single rooms were available and these were used where possible. In the other facility there are two beds to a room but each area is separated by a partition providing some privacy for relatives. For relatives who wish to be present for extended periods during the last few days the staff make efforts to provide as much privacy and comfort as they can.

Reluctance for interventions as death approaches Carers were often in the situation where decisions on treatment were required such as the cessation of antibiotics or artificial hydration and nutrition. In the absence of an advance directive this was sometimes a difficult decision and differing opinions between family members were apparent: and so as he progressively got worse, they did have him on antibiotics and everything, and they said on the Tuesday we really think, you know they’d done his scans and everything and they said look there is nothing we can do but we can keep him alive if you want. We can keep force-feeding or intravenous feeding, and fluids and they said but I wouldn’t want that done to me, and why would you want to do that. To prolong someone’s, and if it’s really rough on them, but they had to talk about it. And I just said look, I don’t think I would want that done, I would definitely not want that done to me, and…. so you know it was very hard for her to agree to that, being his daughter you know, because its just such an emotional thing, that they can’t let go, but we just had to talk her through it and say that they agreed to stop the antibiotics on the Tuesday and then he died on the Thursday afternoon, between 5.30 and 6. (25) The Dr told me when he had a stroke like that he would keep sleeping more and more. Before that, when he was in the facility, having a run around the trees, he somehow put his scooter over the edge and he was rushed to the hospital. He had another stroke. They said "He can't come out of this." My brother was with me. He said "Do you want resuscitation?" I said "No." My brother said "Are you sure about what you are doing?" I said "I know exactly what I am going. We don't want him to get any worse than he is." We had already signed papers at the facility to say "No resuscitation". We don't want people to be a vegetable. (98) Quite frankly, if he had realised how bad he was going to get, he had said to me a few times that he would have been - being an electrician, he said he would have put 250 volts across himself. I think that was all talk….I shrugged it off because I knew I wouldn't do anything to bring it on…. I wouldn't have wanted say, for instance - he wasn't on life support - but I feel that - I don't know, being a Christian I just can't say "Don't give him medicine, don't give him that sort of thing." (475) One carer commented that she was unsure whether surgery for her mother three weeks prior to death to remove a malignancy may have caused her mother to suffer more. The daughter raised the issue of euthanasia:

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She wasn't looking good since they took a skin graft from the top of her thigh to cover her head when they took the lumps out……The doctor sort of indicated if she hadn't had it done it would have killed her and maybe have been worse. She may have suffered more but in retrospect maybe she hadn't. There is a lot to be said about euthanasia and lethal injections in some of the circumstances where people are dying. (49) In rare instances where an advance directive was completed it provided clear directions for the carer: There was a nurse there. I can't remember her name. She was an older nurse. She said to me that because Mum had to sign papers years before, that she didn't want to be kept alive in any way if she was going to die, she wanted to go naturally - that was already put down. I think the nurse thought what I did, just letting my mum go rather than trying there was more signs of things happening, going wrong. They could have tried to keep her alive a bit more but she would have gone eventually. She went very quietly in the end, fortunately. ……….. It wasn't me saying it. She had already made the Yes she made it so much easier. I knew she wanted it. I wanted it because she wanted it and it was made very clear. She might have had the stroke then because her handwriting wasn't good. The reason she wrote - she wanted to die with dignity. (46) Two quotes illustrate the importance of the person having made an advance directive. In one instance the daughter did not have to make those difficult decisions and the comment on the advance directive signalled her mothers wish – to die with dignity. In the other the issue of resuscitation had been discussed and documented and could be enacted in instances of acute events. In one quote the relative speaks openly about euthanasia, in this instance referring to the dilemma that the treatment may have been worse than no treatment. The reference to the need for euthanasia indicates that at the point where these decisions had to be made the choice of desire to end the suffering was not legally available.

I wonder what I’m going to do when I haven’t got him Dementia also affected the relationships that carers had with their relatives particularly close relatives such as a spouse or a daughter. The constant care required meant maintaining meaningful social relationships were difficult: Four and a half… She lived with us. I did all the nice things for her. I did all the right things for her. In the end she started to get unmanageable. She couldn't go to the toilet properly. I would tell her to do something, wipe her bottom or put the paper in the toilet. I got cranky with her. I will never forgive myself for this: I yelled at her. ...I can't forgive myself for just doing that to her. I swore at her. That wasn't me.. apologised to her. She said "What are you apologising for?" I said "Can you forgive me?" She said "Of course I forgive you." She forgot. (142) Similarly for carers who had daily contact the issue of what to do when the person had died was raised: Like I say I was there every afternoon for 2 and half years and I took treats down to my husband and he knew me, because he had Parkinson, and he was just getting confused probably in the last six months in my opinion, to the extent I was worried about him

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getting confused, but it was probably a type of dementia, and spent the afternoon with him ….. I thought one day, I remember me thinking to myself walking in there one day, gee I wonder what I’m going to do when I haven’t got him and I can’t come down, and then I thought don’t worry about that it might be a long time and who knows what happens, but I think the mere fact that I did that everyday with him and being an active person I think that now I’m, I don’t think there’s anything, and I wouldn’t go and say to the doctor that she might say oh you know, you’re a bit depressed have a pill or something. I don’t know whether she would. (13) The themes from interviews with bereaved carers prior to the implementation of the mmpc illustrate a number of issues. The first two themes illustrate the poor communication between relatives and staff. Relatives were often unaware of the trajectory of dementia and particularly indicators that death was imminent. This seems compounded by the lack of coordination or one person within the facility to whom the relatives could communicate regarding their relatives care. However, despite this relatives on the whole seemed clear on the futility of prolonging life by artificial means such as hydration or nutrition. They were also very aware of other symptoms such as pain and the difficulties of discerning whether their relative’s behaviour, such as calling out or groaning was pain or part of the dementing process. In instances where advance directives were available the dilemma of what to do when faced with emergency events or life prolonging decisions was alleviated. Structural limitations within residential care, particularly the lack of single rooms or relative space were highlighted when a relative wished to spend extended periods of time by the bed side. This structural problem will eventually be overcome with new facilities subject to tighter controls on the number of occupants per room. In the meantime where facilities have rooms with multiple beds efforts within the facility should be made for privacy. The difficulty for some relatives adjusting to a change in routine once the person has died also suggests that bereavement follow up and support should be available. It was also clear from the interviews that most carers view palliative care as the same as terminal care or care in the last days of life.

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PHASE TWO

Education sessions During December 2004 and January 2005 four education sessions were held at each facility and were well attended by staff members. A total of 167 staff members from the two facilities attended the education sessions. From Facility One, 40% and from Facility Two, 68% of staff members attended at least one education session.

Staff Pre mmpc Questionnaire Results Respondents Two hundred and sixty six questionnaires were distributed to nursing staff before the introduction of the mmpc and 157 were returned, an overall response rate of 59%. The response rate for Facility Two (76%) was higher than for Facility One (54%). Of the 157 responses, 50 (32%) were from Registered Nurses, 25 (16%) were from Enrolled Nurses and 81 (52%) from Assistants in Nursing. The median length of time respondents had worked in aged care was 15 years with the minimum 1 year and maximum 40 years.

Summary of results Responses to the non – PCQN questions Tables 4 to 6 show responses from all staff to the 25 non-PCQN questions prior to the mmpc. Table 4 indicates that while staff feel able to support families at the time of a resident’s death, in situations were there is conflict or differing opinions staff are less confident in providing this support. There are statistically significant differences in responses between professional groups (RN, EN, AIN) for Q11 and Q15 with RNs feeling more confident than ENs and AINs (see Appendix 6). Table 4 - Responses to psychosocial questions pre mmpc QUESTION 10. I feel comfortable talking to residents about dying

11. I feel confident discussing death with resident’s families

13. I feel confident about dealing with family members who are angry about care

14. I feel confident talking with residents and their relatives when there is conflict

15. I feel confident dealing with situations in which there are differing opinions

17. I feel able to support families at the time of a resident's death

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Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes

N 97 18 40 88 21 44 57 41 55 46

% 62.6 11.6 25.8 57.5 13.7 28.8 37.3 26.8 35.9 30.3

No Sometimes Yes No Sometimes

57 49 66 30 58

37.5 32.2 42.9 19.5 37.7

Yes No Sometimes

122 8 23

79.7 5.2 15

Table 5 indicates that there were mixed responses to organisational issues regarding providing a palliative approach. While staff indicate that they feel valued as a team member they do not feel supported following a resident’s death and would like more reflection on a resident’s death. There are statistically significant differences between professional groups (RN, EN, AIN) for questions 2, 12, 16, 21 and 22. While more RNs felt their opinion was valued in discussing the care of dying residents (Q2), for the remaining questions AINs reported more positive responses therefore indicating they were more confident about having a process to follow in the care of a resident and that staff are supported including debriefing (Appendix 6). Table 5 - Responses to organisational questions pre mmpc QUESTION 2. I believe my opinion is valued when discussing care of dying residents

3. I feel valued as a team member involved with caring for dying residents

12. There is a process for me to follow if I feel uncertain about the care of a resident

16. I believe that staff are supported following a resident’s death

19. The nurses in our organisation usually agree on care given to terminally ill residents

20. When caring for a terminally ill resident, doctors, nurses and families work together

21. After a resident's death the nurses and care workers talk about what we did well

22. After a death, the nurses and care workers talk about what could be done better

Yes No Sometimes

N 96 17 41

% 62.3 11 26.6

Yes No Sometimes Yes

111 14 31 133

71.2 9 19.9 86.9

No Sometimes Yes No Sometimes Yes

10 10 60 45 52 83

6.5 6.5 38.2 28.7 33.1 53.2

No Sometimes Yes

26 47 82

16.7 30.1 52.2

No Sometimes Yes

16 59 42

10.2 37.6 27.1

No Sometimes Yes

68 45 32

43.9 29 20.5

No Sometimes

59 65

37.8 41.7

Table 6 indicates that staff feel confident in many aspects of the clinical management required for dying residents although perceptions of pain management appears mixed. The low scores on questions pertaining to setting up a Graseby pump and drug conversion reflect the diversity of skill level (RN, EN, AIN) of the respondents. There are statistically significant differences between professional groups (RN, EN, AIN) for questions 1, 7, 8, 23 and 24 with RNs being more confident with these tasks (see Appendix 6).

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Table 6 – Responses to clinical management questions pre mmpc QUESTION 1. I am confident when discussing with others my assessment of a resident's symptoms

4. I have received extra training to help me care for dying residents

5. My knowledge of the process of dying is good

6. I always put the resident’s quality of life before routine nursing practice

7. It is essential that dying residents are turned every 2-3 hours

8. I am reluctant to use morphine for dying residents who don't have cancer

9. Pain is well managed in our organisation

18. It is always fully explained to me why treatments are introduced or changed

23. I am comfortable explaining resident's symptoms to GPs

24. I am competent setting up a Graseby pump

25. I am confident converting one analgesic drug to another

Yes

N 115

% 77.2

No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes

7 27 82 67 7 118 18 18 142 3 10 45 69 38 8 104 8 63 18 74 62

4.7 18.1 52.6 42.9 4.5 76.6 11.7 11.7 91.6 1.9 6.5 29.6 45.4 25 6.7 86.7 6.7 40.6 11.6 47.7 39.5

No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes

42 53 83 28 25 30 94 8 23 81 20

26.8 33.8 61 20.6 18.4 22.7 71.2 6.1 18.5 65.3 16.1

Responses to the PCQN questions Table 7 indicates the responses to the 17 PCQN questions. Similar to the results from Tables 4 to 6 there are a number of questions where responses indicate the need for education or organizational change. These include: • •

Knowledge of the appropriateness of the palliative care Pain and symptom management

For 12 (questions 1, 2, 7, 8, 11, 12, 15, 16, 21, 22, 23 and 24) of the 17 questions there are significant differences between professionals groups reflecting the bias of questions towards the more professionally qualified. While RNs have a higher correct response rate to most questions there is indication that knowledge in providing a palliative approach can be improved in regard to pain and symptom management (see Appendix 7).

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Table 7 - Responses to PCQN questions prior to the mmpc

1. Palliative Care is appropriate only in situations where there is evidence of a downhill trajectory 2. It is crucial for family members to remain at the bedside until death occurs 3. The provision of palliative care requires emotional detachment 4. The philosophy of palliative care is compatible with that of aggressive treatment 5. Morphine is the standard used to compare the analgesic effect of other opioids 6. The extent of the disease determines the method of pain treatment 7. Adjuvant therapies are important in managing pain 8. During the last days of life, the drowsiness associated with electrolyte imbalance may decrease the need for sedation 9. Drug addiction is a problem when morphine is used on a long term basis for the management of pain 10. Individuals who are taking opioids should also follow a bowel regime 11. Drugs that can cause respiratory depression are appropriate for the treatment of severe dyspnoea 12. Suffering and physical pain are synonymous 13. The use of placebos is appropriate in the treatment of some types of pain 14. In high doses, codeine causes more nausea and vomiting than morphine 15. Pethidine is not an effective analgesic in the control of chronic pain 16. Manifestation of chronic pain are different from those of acute pain 17. The pain threshold is lowered by anxiety or fatigue

Correct Answer F

N

%

78

50.3

F

108

69.2

F T

108 8

69.2 5.2

T

39

28.1

F T T

72 91 32

48 62.8 22.2

F

96

65.8

T T

111 44

77.6 32.6

F F

57 81

39 58.7

T

56

40

T T T

49 78 63

35 54.5 43.4

Staff Post mmpc Questionnaire Results Respondents Doing a questionnaire with nursing staff proved to be difficult. The nurse 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. Two hundred and sixty six questionnaires were distributed to nursing staff before the introduction of the mmpc and 157 were returned, an overall response rate of 59%. Two hundred and sixty six questionnaires were distributed to nursing staff at the completion of the introduction of the mmpc (November 2005) and the response rate was much lower at 42 (15.8%). Of the 42 responses, 6 (14.3%) were from registered nurses, 10 (23.8%) were from enrolled nurses and 26 (61.9%) from assistants in nursing. The median length of time respondents had worked in aged care was 15 years with the minimum 1 year and maximum 30 years.

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Differences between professional groups Due to the small numbers in each professional group in the post intervention response no analysis was undertaken to distinguish between professional groups (see Appendix 8 and 9 for descriptive results).

Differences between pre and post questionnaire respondents The number of questionnaires available for analysis after the mmpc was much smaller than the number of questionnaires returned before the introduction of the mmpc, for reasons previously stated. There were also differences in the composition of the two groups. In the post mmpc group, there were fewer registered nurses (14.3% vs. 32%), more enrolled nurses (23.8% vs. 16%) and more assistants in nursing (61.9% vs. 52%). While these differences are not statistically significant they will have an impact on the results. Similarly, the poor response rate post the introduction of the mmpc compared with pre introduction of the mmpc does not reflect the broad range of knowledge and attitudes of staff.

Summary of results Responses to the non – PCQN questions Table 8 to 10 shows responses to the 25 non-PCQN questions after the introduction of the mmpc. Table 8 indicates a statistically significant difference between staff’s confidence in discussing death with families (Q11) following the introduction of the mmpc, however this is in a negative direction. This result may be due to the small number of staff who completed the post test questionnaire, the change in professional mix to fewer registered nurses who usually answer families’ questions about the care or an increase in knowledge due to exposure to learning but not yet enough experience to be confident in applying the knowledge. While not statistically significant staff felt able to support families at the time of a resident’s death (Q17) and felt more confident dealing with family members who are angry about care (Q13) following the introduction of the mmpc, suggesting the application of new knowledge and skills . Table 8 – Responses to psychosocial questions post mmpc Question 10. I feel comfortable talking to residents about dying

11. I feel confident discussing death with resident’s families #

13. I feel confident about dealing with family members who are angry

14. I feel confident talking with residents and relatives when there is conflict

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Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes

N

%

19 9 14 15 12 14 17 13 10 10

45.2 21.4 33.3 36.6 29.3 34.1 41.5 31.7 24.4 24.4

15. I feel confident dealing with situations in which there are differing opinions

17. I feel able to support families at the time of a resident's death

No Sometimes Yes No Sometimes Yes No Sometimes

18 13 18 10 13 30 0 11

43.9 31.7 43.9 24.4 31.7 73.2 0 26.8

# Indicates statistically significant difference pre mmpc and post mmpc

Table 9 indicates there was a statistically significant difference for staff being able to reflect on what could be done to improve care (Q22). A statistically significant difference was also found for Q20 however this indicates those staff completing the post mmpc questionnaire felt that the clinical team does not work together with the family as much as those who completed the pre mmpc questionnaire. This difference may be due to the differences in sample size, differences in professional levels of staff completing the pre and post questionnaires, response to acquiring knowledge but still lacking confidence in applying it or education raising awareness of how it could be done better. Table 9 – Responses to organisational questions post mmpc QUESTION 2. I believe my opinion is valued when discussing care of dying residents

3. I feel valued as a team member caring for dying residents

12. There is a process for me to follow if I feel uncertain about care

16. I believe that staff are supported following a resident’s death

19. The nurses usually agree on care given to terminally ill residents

20. When caring for a terminally ill resident, doctors, nurses and families work together

N 20 10 12 22 6 14 37 3 2 14 18 10 22 10 10 13

% 47.6 23.8 28.6 52.4 14.3 33.3 88.1 7.1 4.8 33.3 42.9 23.8 52.4 23.8 23.8 31

No Sometimes Yes

9 20 9

21.4 47.6 21.4

No Sometimes Yes No Sometimes

20 13 11 23 9

47.6 31 26.2 52.4 21.4

#

21. After a resident's death the nurses and care workers talk about what we did well

22. After a death, we talk about what could be done better

Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes

#

# Indicates statistically significant difference pre mmpc and post mmpc

Table 10 indicates a statistically significant difference in knowledge for three questions (Q7, Q9, Q23) related to clinical management skills. While for Q7, this difference indicated an increase in knowledge after the introduction of the mmpc, for the questions related to perception of pain management and speaking to General Practitioners regarding symptoms less respondents answered positively. Similar to the results discussed from Table 9, this difference may be due to the differences in sample size and the professional levels of staff completing the pre and post questionnaires. Traditionally ENs and AINs would not speak directly to GPs but relay information through the RN. The response to the

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pain management question may also indicate a raised awareness of pain due to the education and research and may counter intuitively be a good result. Table 10 – Responses to clinical management questions post mmpc QUESTION 1. I am confident when discussing with others my assessment of a resident's symptoms

4. I have received extra training to help me care for dying residents

5. My knowledge of the process of dying is good

6. I always put the resident’s quality of life before routine nursing practice

7. It is essential that dying residents are turned every 2-3 hours

#

8. I am reluctant to use morphine for dying residents who don't have cancer

9. Pain is well managed in our organization

#

18. It is always fully explained to me why treatments are introduced or changed

23. I am comfortable explaining resident's symptoms to GPs

24. I am competent setting up a Graseby pump

25. I am confident converting one analgesic drug to another

#

Yes

N 25

% 59.5

No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes Yes No Sometimes

3 14 23 16 2 29 4 9 38 1 2 5 31 5 2 29 1 14 12 15 11 17 13 11 21 7 5 31 3 7 28 2

7.1 33.3 56.1 39 4.9 69 9.5 21.4 92.7 2.4 4.9 12.2 75.6 12.2 6.3 90.6 3.1 34.1 29.3 36.6 26.8 41.5 31.7 28.2 53.8 17.9 12.8 79.5 7.7 18.9 75.7 5.4

# Indicates statistically significant difference pre mmpc and post mmpc

Responses to the PCQN questions Table 11 indicates the responses to the 17 PCQN questions. For only one question (Q5) was there a statistically significant improvement in knowledge regarding the use of morphine as the standard to compare other analgesics. Differences in correct responses are illustrated by the bar chart in Figure 4.

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Table 11 - Responses to the PCQN questions post mmpc

1. Palliative Care is appropriate only in situations where there is evidence of a downhill trajectory 2. It is crucial for family members to remain at the bedside until death occurs 3. The provision of palliative care requires emotional detachment 4. The philosophy of palliative care is compatible with that of aggressive treatment 5. Morphine is the standard used to compare the analgesic effect of other opioids 6. The extent of the disease determines the method of pain treatment 7. Adjuvant therapies are important in managing pain 8. During the last days of life, the drowsiness associated with electrolyte imbalance may decrease the need for sedation 9. Drug addiction is a problem when morphine is used on a long term basis for the management of pain 10. Individuals who are taking opioids should also follow a bowel regime 11. Drugs that can cause respiratory depression are appropriate for the treatment of severe dyspnoea 12. Suffering and physical pain are synonymous 13. The use of placebos is appropriate in the treatment of some types of pain 14. In high doses, codeine causes more nausea and vomiting than morphine 15. Pethidine is not an effective analgesic in the control of chronic pain 16. Manifestation of chronic pain are different from those of acute pain 17. The pain threshold is lowered by anxiety or fatigue

Correct Answer F

N 25

% 59.5

F

27

65.9

F T

28 3

66.7 7.1

T

14

38.9#

F T T

14 24 14

34.1 57.1 34.1

F

21

50

T T

27 10

64.3 24.4

F F

13 21

32.5 51.2

T

16

40

T T T

12 21 16

29.3 51.2 38.1

# Indicates statistically significant difference pre mmpc and post mmpc

Figure 4 - Correct responses to the PCQN questions prior to and following the introduction of the mmpc 100 90 80 70 Pre mmpc

60 % 50 40

Post mmpc

30 20 10 0 1

2

3

4

5

6

7

8

9 10 11 12 13 14 15 16 17

Question

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PHASE THREE

A profile of residents who participated in the mmpc The following results summarise the demographic and clinical profile of the 17 residents and their families who participated in the mmpc. Data related to the introduction of the mmpc was collected from 1st February 2005, until the death of the resident or the end of the data collection period (31st October 2005), whichever came first. Of these 17 residents, 9 (53%) died during the introduction of the mmpc. All deaths occurred within the RACFs.

Time in residential care The length of time residents had been in the facility prior to participation in the study varied greatly. One resident had been in the facility for 44 years, while at the other extreme a resident had been in the facility only 35 days. Because of this variation, the median length of time in facilities is reported in Table 12.The median length of time in the facilities for residents who died during the introduction of the mmpc was 4.6 years which is greater than those who did not die (2.5 years) although this difference is not statistically significant. Table 12 - Average length of stay for study residents in the facility prior to the mmpc

All residents (n=17) Residents who didn’t die (n=8) Residents who died (n=9)

Median number of Years in facility 2.8 2.5 4.6

Age and Gender The average age of the residents in the sample was 82 years. The youngest resident in the study was 59 yrs of age and the oldest was aged 107 years. Thirteen (76.5 %) residents were female.

Marital Status Seven (41.2%) of the residents were widowed, 6 (35.3%) were married, 1 (5.9%) was divorced and 3 (17.6%) were never married.

Country of Birth Australia was the country of birth for 14 (82.4%) of residents, with 1 resident born in South Africa, India and the United Kingdom respectively.

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Resident Classification Scale All residents were classified as highly dependent, with 76.5% in the two highest Resident Classification categories (Table 13). Table 13 – Residents’ Classification Category RCS Category 1 2 3 Total

N 3 10 4 17

% 17.6 58.8 23.5 100

Palliative Care Phase The Palliative Care Casemix Classification (Eagar 1997) was used to assess residents at initial and then each subsequent assessment. This classification is based on the premise that palliative care can be divided into a number of Phases of Care which are clinically meaningful. There are 5 phases (see Table 14). At initial assessment no residents were classified in the terminal phase, 7 (41.2%) were considered stable and 10 (58.8%) were considered deteriorating. Of these 10 residents, 7 (70%) died during the introduction of the mmpc, with a median time of 41 days, however the range was from 13 days to 180 days. Table 14 - Palliative Care Casemix Classification Definitions Phase Unstable Stable Deteriorating Terminal

Definition Unexpected or unplanned problems resulting in change in management All residents not classified acute, deteriorating, terminal The development of new, expected problems not requiring a change in management, but not in terminal phase Death likely in a matter of days, no acute interventions

Nutrition and hydration No residents were receiving artificial hydration at the commencement of the mmpc, and 5 (30%) were on fluids that were thickened to manage swallowing difficulties. Only one resident received subcutaneous fluids for hydration prior to death (Table 15). Table 15 - Hydration status for study residents at initial assessment Fluid consistency Category 1 Category 2 Category 3

Definition Cannot be drunk through a straw or cup, spoon required Cannot be drunk through a straw but can be drunk from a cup Can be drunk through a Straw, or cup

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N 11

% 64.7

1

5.9

4

23.5

Nil orally Artificial hydration Total

1 0 17

Subcutaneous fluids

5.9 0 100

Only 1 resident was not taking any food or fluids orally at the commencement of the mmpc. No residents were receiving artificial nutrition at the commencement of the mmpc and for no residents was this commenced during the mmpc (Table 16).

Table 16 - Nutrition status for study residents at initial assessment N 2 7 7 1 0 17

Full diet Soft diet Pureed diet Nil Orally Artificial feeding (PEG, NG) Total

% 11.8 41.2 41.2 5.9 0 100

Mental State and Behavioural Problems All residents were assessed as disorientated on initial assessment and only 1 resident was semi-conscious on entry to the study. Residents exhibited a range of behavioural problems at initial assessment. The main behaviours were being uncooperative or resistive, being verbally aggressive or verbally disruptive (Table 17). Table 17 - Behavioural problems for study residents at initial assessment N 10 6 6 5 2

Uncooperative/resistive Verbal aggression Verbally disruptive Physical aggression Demanding

% 58.8 35.3 35.3 29.4 11.8

Skin Integrity Only a small number of residents had problems with skin integrity at initial assessment. Table 18 - Skin integrity for study residents at initial assessment

Pressure Areas Wound Care Skin tears

N 3 3 6

% 17.7 17.7 35.3

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Symptom Prevalence All residents had pain recorded as a possible symptom in their notes, however at initial assessment no residents were rated by the researchers as in pain using the Abbey Pain Scale. This result is now viewed with caution as the Abbey Pain Scale has been modified to measure pain on movement only, not at rest, and in this study it was still used at rest. Other symptoms were rated as mild, moderate or severe. Table 19 indicates the most common symptoms experienced by residents at the initial assessment were weakness/fatigue, dysphagia, anorexia, pruritis/rashes and anxiety. No residents had dyspnoea or oedema at the initial assessment. Table 19 – Symptoms for residents at initial assessment Symptom Dyspnoea Oedema Nausea Diarrhoea Insomnia Depression Oral discomfort Vomiting Constipation Cough Restlessness Anxiety Weakness/fatigue Dysphagia Anorexia Pruritis/rashes

None N % 17 100 17 100 16 94.1 16 94.1 15 88.2 15 88.2 15 88.2 13 76.5 13 76.5 13 76.5 12 70.6 10 58.8 6 35.3 7 41.2 10 58.8 10 58.8

Mild Moderate N % N % 0 0 0 0 0 0 0 0 0 0 1 5.9 1 5.9 0 0 1 5.9 0 0 2 11.8 0 0 1 5.9 1 5.9 3 17.6 1 5.9 0 0 3 17.6 1 5.9 3 17.6 0 0 1 5.9 2 11.8 1 5.9 2 11.8 1 5.9 2 11.8 4 23.5 3 17.6 3 17.6 2 11.8 4 23.5

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Severe N % 0 0 0 0 0 0 0 0 1 5.9 0 0 0 0 0 0 1 5.9 0 0 4 23.5 4 23.5 8 47.1 4 23.5 1 5.9 1 5.9

Figure 5 indicates the total percent of residents who were noted to be experiencing these symptoms at initial assessment. No residents experienced oedema or dysphasia at this assessment. Figure 5 - Percentage of residents with symptoms at initial assessment Oedema Dyspnoea Diarrhoea Nausea Oral discomfort Depression Insomnia Cough Constipation Vomiting Restlessness Anxiety Pruritis/rashes Anorexia Dysphagia Weakness/fatigue

0

20

40 60 % of Residents with symptom

80

100

Symptom Prevalence during the study Only 4 residents had an Abbey pain score greater than 0, recorded by the researchers at their assessments. However, on reviewing case notes all residents at some point during the study had pain as a symptom documented in their notes. Most prevalent symptoms reported in the case notes for residents throughout the study were weakness/fatigue, dysphagia, anorexia, pruritis/rashes, restlessness, anxiety, anorexia and vomiting (Table 20 and Figure 6).

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Table 20 - Percentage of residents with symptoms during the study Symptom Insomnia Oedema Nausea Diahorrea Dyspnoea Depression Pain Oral discomfort Constipation Cough Vomiting Anorexia Anxiety Restlessness Pruritis/rashes Dysphagia Weakness/fatigue

N 0 1 1 1 2 4 4 4 5 5 7 7 7 9 10 11 15

% 0 5.8 5.8 5.8 11.7 23.5 23.5 23.5 29.4 29.4 41.1 41.1 41.1 52.9 58.8 64.7 88.2

Figure 6 - Percentage of residents with symptoms during the study

Insomnia Oedema Nausea Diahorrea Dyspnoea Oral discomfort Depression Pain Cough Constipation Vomiting Anxiety Anorexia Restlessness Pruritis/rashes Dysphagia Weakness/fatigue

0%

20%

40%

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60%

80%

100%

Medication Management Most residents were on multiple medications. The most common of these were laxatives such as Coloxyl with senna and Movicol. Twelve residents were on opioid analgesics. Only 6 (35.3%) of residents were on regular non-opioid analgesia such as Paracetamol and 5 (29.6%) residents were on antibiotics (Table 21). Table 21 - Regular medications for study residents

Other Laxatives Opioids Tranquilizers Non-Opioid analgesia Antibiotics Antidepressants Anti-emetics

N 15 12 12 10 6 5 4 1

% 88.2 70.6 70.6 58.8 35.3 29.4 23.5 5.9

Of the 12 residents on regular opioids, 10 were also ordered laxatives. Of the five residents on antibiotics, three were already prescribed these at the initial assessment, for two of these residents antibiotics were ceased after a fortnight and the third resident died the following week while on antibiotics. For the other two residents who were commenced on antibiotics during the study, both were ceased after a fortnight and neither was taking antibiotics at the time of death. The most common prn (as needed) medications for residents were laxatives, opioids and non-opioid analgesia (Table 22). Table 22 - PRN medications for study residents

Laxatives Non-Opioid analgesia Opioids Sedatives Other Anti-emetics Antidepressants Antibiotics

N 12 8 8 5 5 0 0 0

% 70.6 47 47 23.5 23.5 0 0 0

Opioid analgesics Opioids mostly commonly prescribed on a regular basis during the study were Fentanyl patches (5 residents), oral morphine mixture (3 residents) and Kapanol (2 residents). Some residents were on more than one opioid simultaneously.

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

Fentanyl patch Fentanyl patch + oral morphine mixture Kapanol Oxycontin Tramadal Endone Morphine mixture oral Subcutaneous morphine - qid Subcutaneous morphine via pump

N 3 2 2 1 1 1 1 1 1

% 17.6 11.7 11.7 5.8 5.8 5.8 5.8 5.8 5.8

As required (prn) opioids administered were predominantly morphine subcutaneously (5 residents), Endone (2 residents) and oral morphine mixture (2 residents). For the 9 residents who died in the study, 8 residents (88.9%) were on opioids, 6 were on regular and prn opioids simultaneously, 1 was on regular opioids only and 1 was on prn opioids only.

Resident profiles The 17 residents who participated in the mmpc were all long term residents within the facility and not residents who had been admitted from acute care or transferred from other settings. The length of stay of these residents provides opportunities for staff to become familiar not only with the resident’s needs but also the relatives. As the resident’s ability to communicate diminishes with the progression of the dementia, staff knowledge of the resident may assist in discerning the resident’s wishes. Only 6 of the 17 residents had spouses which meant for many of the residents, the relatives were daughters, sons or other family members. Predicting the final trajectory for residents with end stage dementia is difficult, however using the palliative care casemix classification the researchers identified 10 of the residents as in the deteriorating phase and seven of these died during the study period. No residents included in this part of the study were receiving parental nutrition and no residents were commenced on this during the study period. Artificial hydration by subcutaneous fluid was provided to one resident in the days prior to death. Symptoms were recorded from resident’s case files or observation by the researcher at the time of the assessment. As such, the symptoms recorded largely reflect those symptoms most commonly noted by nursing staff. Dysphagia was prevalent and this was also reflected in the range of modified diet and fluids which residents were ordered. Minimal change in the frequency of symptoms recorded at initial assessment and over the study period indicated that for these residents the most common symptoms were weakness/fatigue, dysphagia, pruritis/rashes and restlessness. To reflect the range of symptoms, residents were on a large variety of medications, with 12 (70.6%) of the residents on regular opioids at the time of enrolment to the study and 6 of these also being prescribed prn opioids for breakthrough pain. Of the 12 residents on regular opioids, 10 were also prescribed a laxative. The low rating of pain for residents during the study (23.5%) indicates that the management of pain was well controlled. Five residents were on

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antibiotics during the study, however only one resident died while on antibiotics. Overall, symptom management for residents appeared to be appropriate.

Case conference: an example A key feature of this study was the scheduling of an mmpc case conference for residents with end stage dementia. For each resident enrolled into the study, the nursing staff contacted the general practitioner, allied health staff and relevant family members to arrange an mmpc case conference time. Of the 17 residents in the study, 12 had an mmpc case conference conducted. Of these 12, 4 died during the study period. To illustrate the impact of the mmpc case conference a brief overview of the outcome of the mmpc and subsequent care prior to death are discussed for two residents who both had acute events and died. Marjorie Marjorie was an 84 year old widow who had been in the residential care facility for 5 years. She had a primary diagnosis of dementia and a cerebrovascular accident (CVA) that had left her with contractures of the left arm. Her daughter lived 2 hours away and visited infrequently but had frequent phone contact with the facility. Marjorie was nonverbal in her communication; she had dysphagia and had been assessed by a speech pathologist for a modified diet. Her food was vitamised and her fluids thickened. On admission to the study she was only on Oxycontin 20mg twice daily and Panadol prn. She was classified as being in a stable palliative care phase. The mmpc case conference The mmpc case conference was scheduled for 5 weeks after enrolment to the study. Her daughter was unable to attend the case conference but was happy for this to proceed in her absence. The staff had discussed with the daughter issues regarding a palliative approach that would have been discussed at the case conference. The daughter agreed that a palliative approach was appropriate and although Marjorie did not have an advance health directive her daughter who had enduring power of attorney had specified she did not want her mother transferred to an acute hospital and no artificial hydration and nutrition was to be provided. The mmpc case conference was attended by Marjorie’s general practitioner, the facility social worker and five nursing staff members, three registered nurses and two care workers. There was discussion regarding the daughter’s wishes – ‘for comfort care only’. Nursing staff indicated that while at present she was in a shared room that if required they would try and move her to a single room or the palliative care room which they can use for a few days. The nursing staff felt that at present her pain was well controlled by the regular Oxycontin and the general practitioner agreed that if she was unable to swallow oral medication due to deterioration he would provide opioids by an alternative route. Marjorie had her funeral wishes documented and her family was to be kept informed of any change in condition.

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An acute event leading to death Four days after the mmpc case conference Marjorie had a further CVA, became unresponsive, was unable to swallow and her tongue was protruding. The daughter was informed of her mother’s condition but at that time preferred not to visit. The general practitioner was informed and he provided a phone order for subcutaneous morphine 10mg as required every 6 hours. The following day the nursing staff contacted the general practitioner for an increase in the morphine dose as they felt Marjorie was uncomfortable. A phone order for 10mg of morphine every 4 hours was provided. The nursing staff contacted her daughter and informed her that her mother continued to deteriorate. Her daughter preferred not to visit. On the third day following her CVA Marjorie continued to deteriorate, she developed a respiratory stridor and had excessive oral secretions. She was ordered Atropine as required, relocated to the palliative care room and her daughter informed. Her daughter expressed the wish not to be contacted during the night if her mother died. Marjorie died at 4am. In the morning the facility social worker contacted the daughter to inform her of her mother’s death and offer support. The daughter expressed disappointment that she did not live closer and was unable to be with her. The social worker note indicates further follow up as required. Comments regarding palliative care The nursing staff considered that they had been able to care appropriately for Marjorie as she was dying. They had kept her daughter informed, provided the physical care she required and had liaised with the general practitioner by phone to change her oral opioid to subcutaneous in the absence of a swallowing reflex, and for Atropine to manage excess secretions. The staff felt they were able to provide Marjorie with some privacy in the last 24 hours by transferring her to the palliative care room. The trajectory of dementia, particularly complicated by other co-morbidities, is hard to predict. This was demonstrated in Marjorie’s case as it had not been expected that three days after her palliative mmpc she would have a CVA and die within three days of this occurrence. This illustrated to the staff that it is wise not to wait until an acute event to discuss a palliative approach for residents with end stage dementia. Attached to the report is an example of a case study, “Paul” that describes in more detail the management of the care of a resident, using the mmpc. Further case studies are being written about other participants in the study and will be available at a later date.

Interviews with Bereaved Carers following the introduction of the mmpc For the nine residents who died during the prospective study, bereavement interviews were conducted with seven carers. One resident did not have any living family members and one family was unavailable for interview. Interviews were transcribed and analysed thematically by two members of the research team using NVIVO software. Seven themes emerged. 1. Awareness of what is happening 2. Feeling supported 3. Recognising and managing pain

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4. 5. 6. 7.

If he didn’t eat, then he didn’t eat “Can’t I tear it up” Somewhere private for the last few days All of a sudden they’ve gone

Awareness of what is happening For relatives that had been involved in the study the recognition of the need for a palliative approach to their relatives care was discussed during the consent procedure and then again in the mmpc. In this respect, all the relatives in the study were aware that their relative was in the end stages of dementia often in combination with other co-morbidities. One relative felt that he had not received adequate information early in the disease, particularly what the trajectory of care was. He felt that when he was approached to be involved in a palliative care study that he was relieved to be aware of this: In palliative care, I knew exactly you’re in the final stages and I thought you know when there’s only a few weeks to go. (1) Feeling supported One carer who stayed overnight as the staff had identified his relative was close to death commented on how much he felt supported at her death: Everybody was so kind you know, and the nurses the night she passed away were absolutely wonderful. They just all came, the whole four of them came, cause there’s only four nurses on at night time. They made sure I was comfortable and that sort of thing and her too. (3) This relative was also pleased with the medical care given: Even when she passed away the doctor came in at four o’clock in the morning and she was wonderful. (3) Recognising and managing pain Pain was a common symptom mentioned by carers. For one resident, pain was difficult to control as his pain was primarily on movement. While this resident was on an increasing dose of regular opioids, breakthrough medication for movement pain was required frequently throughout the day and night. For this resident, the relatives felt that a more acceptable level of pain control could have been achieved in the last 24 hours and felt this may have been because the registered nurse was not comfortable with administering opioids: At about 7 o’clock one of the enrolled nurses came in again to see how things were going and she said ‘I just don’t get this’ and my daughter went out again and said ‘he needs the morphine’ and the registered nurse said the doctor said I’ve given him as much as he can have. She didn’t give it again until about 10ish, when she was going off duty at 10.30, and I reckon she just didn’t want to deal with it, and then he passed away at 7 minutes to 11. (1)

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One carer expressed that he felt staff had difficulty recognising that his wife was in pain due to her inability to communicate verbally or with facial expressions. Her husband would advocate on her behalf but sometimes felt that he was not listened to.

If he didn’t eat, then he didn’t eat Relatives spoke of the decisions or circumstances around their relative stopping eating and drinking. For one family, the mmpc case conference was an opportunity to discuss a change in the resident’s ability to manage food that the family had been providing. The family welcomed this discussion and were also clear that at the point where he didn’t want to eat that was okay: If he didn’t eat, then he didn’t eat…He stopped eating a week before he died (4) Other relatives were also clear about not having artificial hydration and nutrition: They said to me ‘she’s not eating anymore’ so I said ‘forget the tube, forget about the feeding. Enough is enough, she’s suffered, she wants to go. I know she wants to go. The nurse said to me ‘she’s not taking food anymore’ So I went and had a chat with the senior nurse and that’s when I sort of decided yes, this is the way to go, the nurse said ‘she’s only got a few weeks to go (1)

Can’t I tear it up’ One resident had an advance health directive but his wife struggled when it was actually time to implement it when her husband’s condition changed: The doctor up there sort of drew me out into the passage and she almost indicated that, you know, that she didn’t think he was going to be here for much longer and I said ‘can’t you cancel that (referring to the written advance health directive), can’t I tear it up’ I know that we both had agreed on that long before, so I knew but it’s quite hard though … I mean when you’re filling in that form you think that, and I think that I know I wouldn’t want to be kept alive on any kind of support system at all if I knew that there was no hopes. So that we understood that perfectly. But you know it’s fine to write it down and fill it in, but when it actually comes to the nitty gritty, and you’re faced with that thing it’s quite hard. But I knew that’s what he wanted anyway cause we’d agreed on it long before. (6)

All of a sudden they’ve gone Two of the residents’ families did not live in the metropolitan area and they chose not to visit in the final few days or after the death of their relative. Other members of families who lived locally coped in different ways. The daughter of one of the residents had difficulty with coping with her fathers impending death and preferred to stay at home. She chose not to visit the RACF after his death although she was able to attend the funeral. Relationships between the staff and family members where their relative has been in the RACF for a long time became very important. One carer commented

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It’s like you’ve lost members of your family, all those people become really important to you, all of a sudden they’ve gone. (4) Another relative spoke about trying to adjust to life after his wife had died. He had visited everyday for many years: You really want, as though you’re back in the normal rhythm. You feel as though you’ve been outside for so long you just want to get back to normal. (1)

Somewhere private for the last few days In contrast to the pre mmpc bereavement interviews no mention was made regarding privacy issues. While two of the residents were in a single room, 3 of the other 7 residents were moved into a single room designated as the ‘palliative care room’ in the 24-48 hours prior to death. These were all residents who had been in 4 bed-share rooms. Residents who died in two-person shared rooms were not relocated. Family members did not make comment about the need for more privacy with their relatives.

Impact of the mmpc for general practitioners Both general practitioners that participated in the mmpc felt that the mmpc case conferences were very useful and that it improved dialogue between carers, nursing staff and family. However, one general practitioner felt the process was a bit formalised and goals could have been a bit briefer. While the goal was to conduct the mmpc case conferences over a twenty minute period per resident in one facility some conferences did exceed this time. Overall, the feeling was the introduction of a palliative approach for residents with end-stage dementia was a very positive step forward and also raised the awareness with staff regarding pain management and the futility of active treatment.

Impact of the mmpc on residential staff The impact of the mmpc on staff has already been discussed in terms of changes in knowledge, skills and attitudes as assessed by the pre and post mmpc staff survey. During the project we also interviewed staff regarding their views on the mmpc. Positive comments from staff illustrated how the mmpc enhanced the care of residents with endstage dementia: The multidisciplinary model of palliative care: • Raised awareness within the facility that death and dying are important aspects of care and should be planned for, integrating as much as possible the resident’s and family’s wishes • Provided opportunities for staff to talk more openly about residents who were dying • Case conferences with the GP and family facilitated conversation about dying and provided a clear plan of action to follow • Case conferences provided opportunities for staff to discuss sensitive and sometimes difficult issues such as hydration and nutrition • Following the mmpc case conferences there was a perception by staff that there was increased interaction amongst family members

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•

Facilitated the implementation of a palliative care volunteer program in one of the facilities.

Development of documentation for implementation of the palliative approach While there were positive outcomes from the mmpc also highlighted were a number of issues that we had not specifically included or addressed in the mmpc. These issues were mainly concerning policy and procedural issues for implementing a palliative approach. In particular staff identified the need for: 1. A consistent palliative care policy 2. A generic palliative care plan 3. The ability to audit the charts of residents who had died to assess whether a palliative approach had been possible

As the research project drew to a close discussions took place with staff about documentation that could support the continued implementation of the palliative approach. In discussion with the research staff, present documentation was amended or rewritten. Attached as Appendices 10 – 13 are the five pieces of documentation seen as necessary for such implementation – • the palliative approach policy; • flow chart; • care plan; • work instruction • audit tool. All these pieces of documentation will be further refined by the research team. An application for further research monies has been made to test these tools, and re-test the implementation plan. The audit tool is being tested for face validity by colleagues in Western Australia.

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DISCUSSION Awareness of the palliative needs of people living in RACFs has grown in developed countries in the last 20 years, in particular the development of a national three year Endof-Life Programme in the United Kingdom and the Guidelines for a Palliative Approach in Residential Aged Care Facilities (Commonwealth Department of Health and Ageing 2004) in Australia. The present study aimed to develop, implement and evaluate a multidisciplinary model of care for residents with end-stage dementia. Multidisciplinary care for residents in RACFs varies depending on the residents’ needs and access to care providers. Members of the multidisciplinary team should where possible include the resident and family, staff of the facility, general practitioner, relevant allied health professionals, volunteers and external medical or nursing specialists. This study was conducted in the context of a dynamic health care system. At the commencement of the study guidelines for a palliative approach in residential aged care facilities (Commonwealth Department of Health and Ageing 2004) had been developed but the national dissemination of these guidelines had not commenced. Despite this, the guidelines were central to the development of the model of multidisciplinary care for residents with end-stage dementia in this study. In addition to the incorporation of these guidelines other developments within the Australian health system have supported the role of general practitioners providing comprehensive care planning in RACFs. Specifically, these developments provided financial incentives under the Enhanced Primary Care scheme for general practitioners to conduct multidisciplinary case conferences in RACFs (Commonwealth Department of Health and Aged Care 2006). The utility and acceptability of GPs participating in multidisciplinary case conferences for patients referred to specialist palliative care services has been evaluated by Mitchell (2005). He argues that case conferences between GPs and specialist palliative care services improved the level of information exchange particularly with regard to discharge planning. In the present study, case conferences that included the multidisciplinary team, family and general practitioner provided opportunity to discuss the palliative approach for residents with end stage dementia. Issues discussed included pain and symptom management, nutrition and hydration, spiritual care and anticipatory grief of the family. Evaluation from family, residential care staff and general practitioners indicated that the multidisciplinary palliative case conference provided opportunity to discuss a clear plan of care for the resident and ensure that the resident and families wishes were documented. In this study two validated measures the SWC- EOLD and the SM-EOLD were utilised in an attempt to evaluate the mmpc. Quantification of relatives satisfaction with end-of-life care and quantification of symptoms is difficult and the SWC-EOLD and SM-EOLD developed by Volicer, Hurley and Blasi (2001) did not provide sufficient level of detail to adequately describe the experience and allow comparisons before and after the mmpc. While it is acknowledged that lack of change was influenced by an inadequate sample size, intuitively it was clear that the rich qualitative experience discussed in the relative interviews was lost in having to categorise components of care.

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CONCLUSIONS This study has illustrated the potential positive contribution of providing a structured multidisciplinary palliative approach for residents with end-stage dementia. While further refinement and evaluation of this model is required the commitment of staff to development of a palliative approach policy and supporting documentation is encouraging. The research team has a number of suggestions for how the provision of a multidisciplinary approach for residents with end-stage dementia in all facilities in Australia can be achieved: 7. A multidisciplinary model of palliative care for people in the late-stages of dementia is a best practice approach 8. An education program for staff is required within RACFs to become skilled in facilitating an mmpc and case conferencing. 9. Continued education for all levels of staff based on the palliative care guidelines will be needed 10. Provision within RACFs for staff to discuss the care provided to residents who have died including what was done well and what could have been improved assists in continuing improvement 11. The documentation for the mmpc and palliative care case conferencing developed in this research be further validated and trialled 12. RACFs to undertake regular audits of palliative and end-of-life care to identify practices that require improvement in addition to those which are providing desired outcomes.

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Appendix 1 – The Symptom Management at the End-of-Life Dementia Scale

SM-EOLD Item Pain Shortness of breath Skin breakdown Calm Depression Fear Anxiety Agitation Resistive to care

Never

Once a month

2 or 3 days/month

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Once a week

Appendix 2 – The Satisfaction with Care at the End-of-Life Dementia Scale

SWC-EOLD Strongly agree I felt fully involved in all decision making I would probably have made different decisions if I had had more information All measures were taken to keep my care recipient comfortable The health care team was sensitive to my needs and feelings I did not really understand my care recipients condition I always knew which doctor or nurse was in charge I feel that my care recipient got all necessary nursing assistance I felt that all medication issues were clearly explained to me My care recipient received all treatments or interventions that he or she could have benefited from I felt my care recipient needed better medical care at the end of his or her life

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Disagree

Agree

Strongly Agree

Appendix 3 – mmpc Pro forma

CASE CONFERENCE NURSING REVIEW A Structured Palliative Care Approach for Residents with Dementia

Resident’s name_____________________________________________________________

Family/POA_____________________________________________

Short history since admission ___________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

NUTRITION AND SWALLOWING Current status Full diet Full/Soft/Pureed diet Thin/Cat 3/Cat 2/Cat 1 Artificial feeding/hydration Nil orally

Yes Difficulty with swallowing Yes Weight gain (last 6months)More than 5kg Weight loss (last 6 months)More than 5kg Yes

No No No

If difficulty swallowing describe interventions or plan ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

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INFECTIONS Number of infections in last 12 months (or since admission) Number in last 12 months

Treated with antibiotics

Not treated with antibiotics

Chest infection Urinary infection Other infections specify

Comments ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

BODY BREAKDOWN Pressure areas Wound care Skin tears Peripheral circulation limited

Yes Yes Yes Yes

No No No No

Comments ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

MAIN CO-MORBIDITIES AND SYMPTOMS Problem

Main concerns

Pharmacological interventions

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Non-pharmacological interventions

Comments ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

List Relevant Regular Medications administered in the last 48 hours Code

Medication

Route

Dose

Frequency

Relevant PRN Medications administered in the last 48 hours Code

Medication

Route

Dose

Frequency

No of doses**

Comments (include difficulty in administration) ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

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ADVANCE CARE PLANNING Evidence of an Advance directive Yes

No

Date completed, relationship (if applicable)

Enduring Power of Attorney Advance Health Directive Funeral wishes documented

Summary of resident’s wishes if documented ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

Summary of family expressed wishes if documented ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

SERVICE PROVIDERS INVOVLED

Indicate members of the multidisciplinary team that you feel need to be invited to attend the mmpc Allied Health Staff

Date of last visit

Physiotherapist Occupational Therapist Speech Pathologist Continence Nurse Advisor Podiatrist Diversional Therapist Dietitian Pastoral care Palliative Care service Other External services Other Other

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Invite to mmpc Yes No

SUMMARY LIST OF CARE PLAN PROBLEMS ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

IDENTIFIED GOALS TO BE DISCUSSED AT mmpc ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________

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Appendix 4 – Assessment of residents’ care

INITIAL ASSESSMENT A Structured Palliative Care Approach for Residents with Dementia Entered in Database Study ID number: __________ Initial Ax Date: _________ Facility admission date: ________________

Facility: ____________________________________________ Level of care

Low Care / High Care

Surname:___________________________ Given Names: _______________________ Title:_________ 1.

Male

2.

Marital Status:

Female 1. married

Birthdate: _________________ Age______________ 2. de facto

3. widowed

4. divorced

5. separated

6. never

Country of birth:_______________ Identifies as: _____________________________________________ Relative’s Name: __________________________________ Relationship: _______ Address: _______________________________________________________________________________________ Phone (h) ________________________ (w) ____________________ (m) _____________________________________ General Practitioner: Name: ___________________________________Phone: __________________ Address: _______________________________________________________________________________________

List 5 main diagnoses: Diagnosis

Code

Relevant History: ________________________________________________________________________________ _______________________________________________________________________________________ RCS Classification: __________________________________ Date of Classification: ______________ Palliative Care Phase: (tick one box only) Stable

Deteriorating

Unstable

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Terminal

PHYSICAL ASSESSMENT AND MANAGEMENT (1) Nutrition 1 2 3 4 5

(2)

Full diet Soft diet Pureed diet Thin diet Cat 1

1 1 1

Yes Yes Yes

2 2 2

No No No

1 1

Demanding Uncooperative/resistive

1 1

orientated conscious

2 2

disorientated semi-conscious

3 3

2 2

unable to assess unconscious

Skin integrity 1 1 1

Pressure areas Wound care Skin tears

Yes Yes Yes

2 2 2

No No No

WATERLOW SCORE ________ DATE ASSESSED _______ (5) Other

Initial assessment only

Vision difficulties Hearing difficulties

(6)

Yes Yes

Mental State (tick appropriate number)

Orientation in time & place Level of consciousness

(4)

Cat 2 Cat 3 Artificial feeding Artificial hydration Nil orally

Behavioural Problems (tick appropriate number)

Verbal aggression Physical aggression Verbally disruptive

(3)

6 7 8 9 10

1 1

Yes Yes

2 2

No No

Pain Assessment

Abbey Pain Score 1. Vocalisation 2. Facial expression 3. Change in body language 4. Behavioural change 5. Physiological change 6. Physical changes

OR Other pain scale score (provide details) ________ ________ ________ ________ ________ ________

TOTAL Abbey Pain Score_________ If Abbey Pain Score 3 or greater OR interventions and effectiveness

other pain scale indicates pain, assess

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No No

_______________________________________________________________________________ (7)

Other Unpleasant Symptoms

Evaluate each symptom experienced in last 2 weeks: 0=none 1=mild 2=moderate 3=severe 1. 2. 3.

Nausea ___________ 5. Weakness/fatigue______ 9. Mouth ulcers___________ Vomiting _________ 6. Dysphagia___________ 10. Oral discomfort________ Dyspnoea_________ 7. Anorexia____________ 11. Pruritus/rashes__________ 4. Insomnia _________ 8. Depression __________ 12. Anxiety _______________ 17. Resistance to food______ Any other symptoms: (details)

13. Constipation________ 14. Diarrohea___________ 15. Cough_____________ 16. Restlessness ________

For every unpleasant symptom with a score of 2 or 3, assess interventions and effectiveness _______________________________________________________________________________________

(8)

List ALL Regular Medications

Code

(9)

Medication

PRN Medications

Code

Route

Dose

Frequency

**administered in the previous 2 weeks

Medication

Route

Dose

Frequency

No of doses**

Comments: _______________________________________________________________________________________

EXTERNAL SERVICE PROVIDERS (10)

Pattern / level of General Practitioner Involvement:

Case conference completed

1

Yes

2

Date of conference

No

How often does the GP visit: 1. Weekly

2. Fortnightly

3. Monthly

4. Six weekly

Comment on date and notes of last GP visit:____________________________________________________________ _______________________________________________________________________________________

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(11) Details of the Palliative Care Service Consultancy in Resident’s Care: Name of PC Service Date of Referral Reasons for referral

Visit dates of PC team

Actions taken

Comments re appropriate care

ADVANCE CARE PLANING (12) Assessment and Care Planning

(obtain photocopy if possible)

Evidence of an Advance directive Yes

No

Date completed, relationship (if applicable)

Enduring Power of Attorney Advance Health Directive Funeral wishes documented Comments:

PSYCHOSOCIAL (13) Cultural and spiritual Are there any cultural or spiritual requirements of the resident and family that have been are identified and documented: 1. Yes 2. No Detail: _______________________________________________________________________________ Is there evidence the staff have met these identified cultural needs:

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1. Yes

2. No

Comment: ______________________________________________________________________________ (14) Family involvement Comment on the extent/nature of the family involvement/presence in last 2 weeks___________________

Prompt questions 1. What things has the resident been talking about 2. What are the family talking about 3. How are you (resident or family member) thinking about what’s ahead (15) Intimacy/relationships Are there any intimacy/relationship needs identified 1. Yes 2 No Is there evidence that staff have meet intimacy/relationship needs 1. Yes 2. No _

Any other comments regarding events in the past 2 weeks:_______________________________________

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FORTNIGHTLY ASSESSMENT (May also be used for change in condition) A Structured Palliative Care Approach for Residents with Dementia Entered in Database Assessment:

2

3

4

5

6 7

8

(tick) Date________ Study ID Number______

Resident’s Name_________________________________________________________________________ Facility________________________________________________________________________ __________ Has site of care changed since last assessment? 2. Public Hospital 3. Private Hospital care level 7. Another Aged Care Facility

1. Yes 2. No 4. Hospice

If ‘YES’ indicate current site of care: 5. Aged Care Facility - different

(Details please):________________________________________________________________________________ Date of Transfer:_________________ Date of discharge from new site: (if applicable)_______________________

Main Reason for Transfer: 1. 2. 3. 4.

rapid deterioration symptom management increased nursing need ______________________ GP request

5. Condition stabilised/improved 6. Desire for care at ‘current site’ 7. Investigation & active treatment

9. Terminal care 10. Family request 11. Other

8. Acute event:_________________

Movement in the Aged Care Facility Has resident been moved within the same aged care facility due to deterioration?

1. Yes

2. No

If ‘Yes’ record details:_____________________________________________________________________________

Palliative care phase Stable

Deteriorating

Unstable

Terminal

Has the resident been re-classified within the aged care facility due to deterioration: 1. Yes 2. No RCS re-classification___________________________ Date of new classification:________________________

PHYSICAL ASSESSMENT AND MANAGEMENT (1) Nutrition 1 2 3 4 5

Full diet Soft diet Pureed diet Thin diet Cat 1

6 7 8 9 10

Cat 2 Cat 3 Artificial feeding Artificial hydration Nil orally

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(2)

Behavioural Problems (tick appropriate number)

Verbal aggression Physical aggression Verbally disruptive

(3)

1 1 1

Yes Yes Yes

2 2 2

No No No

1 1

Demanding Uncooperative/resistive

Yes Yes

2 2

No No

Mental State (tick appropriate number)

Orientation in time & place Level of consciousness

(4)

1 1

orientated conscious

2 2

disorientated semi-conscious

3 3

unable to assess unconscious

Skin integrity

Pressure areas Wound care Skin tears

1 1 1

Yes Yes Yes

2 2 2

No No No

WATERLOW SCORE ____ DATE ASSESSED_________ (5) PAIN ASSESSMENT Abbey Pain Score:_________

Other pain assessment score _____________

If Abbey Pain Score 3 or greater interventions and effectiveness

OR

other pain scale indicates pain, asses

______________________________________________________________________________

(6) Other Unpleasant Symptoms Evaluate each symptom experienced in last 2 weeks: 0=none 1=mild 2=moderate 3=severe 1. 2. 3. 4.

Nausea ___________ Vomiting _________ Dyspnoea_________ Insomnia _________

5. Weakness/fatigue_____ 6. Dysphagia___________ 7. Anorexia____________ 8. Depression __________

9. Oedema _____________ 10. Oral discomfort________ 11. Pruritus/rashes_________ 12. Anxiety _______________

13. Constipation________ 14. Diarrohea__________ 15. Cough____________ 16. Restlessness ________

Any other symptoms: (details)

If score of 2 or 3, assess interventions and effectiveness__________________________________________ _______________________________________________________________________________

(7) Regular Medications Have there been any difficulties with administration of medications in past 2 weeks: 1. Yes 2. No

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If Yes, please indicate: 1. dysphagia Other________________

2. Nausea and vomiting

3. Refusal to take 4.

_____________________________________________________________________________________________________________

Have there been any changes to regular medications in past 2 weeks:

1. Yes

2. No

Reason: _______________________________________________________________________________________

Document any changes to regular medications that have occurred in the past 2 weeks Medication

(8)

PRN Medications

Date changed

Route

Dose

Frequency

Code

No of doses**

Code

**administered in the last 2 weeks

Medication

Route

Dose

Frequency

EXTERNAL SERVICE PROVIDERS (9) Pattern / level of General Practitioner involvement in past 2 weeks How often has the GP visited in the last fortnight: ______________________ Has the frequency of visits changed since the resident became palliative: 1. Yes

2. No

If yes, what difference did the visits make to the resident’s care: ____________________________________________

(10) Palliative care service involvement in the resident’s care in past 2 weeks Date, reason for visit, action, effectiveness

_______________________________________________________________________________

ADVANCE CARE PLANING (11) Have there been changes to Advance Directives documentation in the past 2 weeks 1.Yes 2. No Comments

Has there been a change to the goals of the mmpc 1. Yes 2. No Comments______________________________________________________________________

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PSYCHOSOCIAL (13) Cultural and spiritual Are there any new cultural or spiritual requirements of the resident and family that have been are identified and documented: 1. Yes 2. No Detail: _______________________________________________________________________________ Is there evidence the staff have met these new identified cultural needs:

1. Yes

2. No

Comment: ______________________________________________________________________________ _______________________________________________________________________________ (14) Family involvement Comment on the extent/nature of the family involvement/presence in last 2 weeks___________________

Prompt questions 4. What things has the resident been talking about 5. What are the family talking about 6. How are you (resident or family member) thinking about what’s ahead (15) Intimacy/relationships Are there any new intimacy/relationship needs identified in the last 2 weeks 1. Yes 2 No Is there evidence that staff have meet these new intimacy/relationship needs 1. Yes 2. No Any other comments regarding events in the past 2 weeks:_______________________________________

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Appendix 5 - Preliminary codes for interviews

1. Carer and resident interactions 2. Death – alone/not alone 3. Dissatisfaction with care 4. Movement within the facility 5. Nutrition/hydration 6. Palliative care – recognition 7. Preparation for death – carer 8. Satisfaction with care 9. Symptom management 10. General Practitioners 11. Carer coping 12. Advance directives 13. Movement within the facility 14. Medication issues – carer 15. Spiritual care 16. Dementia knowledge 17. Euthanasia 18. Hospital 19. Privacy 20. Rehearsal for death

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Appendix 6 - Pre – intervention responses to non PCQN questions by professional group (# significant difference between groups) RN QUESTION 1. I am confident when discussing with others my assessment of a resident's symptoms

EN

AIN

N

%

N

%

N

Yes No Sometimes

45 0 2

95.7 0 4.3

17 0 7

70.8 0 29.2

50 7 15

Yes No Sometimes

36 1 10

76.6 2.1 21.3

15 2 7

62.5 8.3 29.2

39 14 23

# 69.4 9.7 20.8 # 51.3 18.4 30.3

Yes No Sometimes

39 2 7

81.3 4.2 14.6

18 1 5

75 4.2 20.8

47 11 19

61 14.3 24.7

Yes No Sometimes

23 23 2

47.9 47.9 4.2

15 9 0

62.5 37.5 0

39 33 5

50.6 42.9 6.5

Yes No Sometimes

39 2 7

81.3 4.2 14.6

18 2 4

75 8.3 16.7

54 14 7

72 18.7 9.3

Yes No Sometimes

40 1 6

85.1 2.1 12.8

21 0 3

87.5 0 12.5

74 2 1

Yes No Sometimes

9 29 9

19.1 61.7 19.1

5 12 7

20.8 50 29.2

29 27 19

Yes No Sometimes

1 46 1

2.1 95.8 2.1

1 19 0

5 95 0

5 36 7

96.1 2.6 1.3 # 38.7 36 25.3 # 10.4 75 14.6

2. I believe my opinion is valued when discussing care of dying residents

%

3. I feel valued as a team member involved with caring for dying residents

4. I have received extra training to help me care for dying residents

5. My knowledge of the process of dying is good

6. I always put the resident's quality of life before routine nursing practice

7. It is essential that dying residents are turned every 2-3 hours

8. I am reluctant to use morphine to dying residents who don’t have cancer

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RN QUESTION 9. Pain is well managed in our organisation

EN

AIN

N

%

N

%

N

%

Yes No Sometimes

19 5 24

39.6 10.4 50

8 5 11

33.3 20.8 45.8

33 8 35

43.4 10.5 46.1

Yes No Sometimes

35 3 10

72.9 6.3 20.8

15 3 6

62.5 12.5 25

41 12 23

Yes No Sometimes

39 3 5

83 6.4 10.6

10 4 10

41.7 16.7 41.7

35 14 26

Yes No Sometimes

35 7 6

72.9 14.6 12.5

23 1 0

95.8 4.2 0

69 2 4

53.9 15.8 30.3 # 46.7 18.7 34.7 # 92 2.7 5.3

Yes No Sometimes

20 11 17

41.7 22.9 35.4

9 9 5

39.1 39.1 21.7

24 21 30

32 28 40

Yes No Sometimes

18 13 17

37.5 27.1 35.4

6 11 6

26.1 47.8 26.1

17 33 24

23 44.6 32.4

Yes No Sometimes

24 8 16

50 16.7 33.3

15 2 7

62.5 8.3 29.2

23 20 32

30.7 26.7 42.7

Yes No Sometimes

13 12 23

27.1 25 47.9

7 10 7

29.2 41.7 29.2

37 22 19

47.4 28.2 24.4

Yes No Sometimes

39 2 7

81.3 4.2 14.6

21 0 3

87.5 0 12.5

56 6 12

75.7 8.1 16.2

10. I feel comfortable talking to residents about dying

11. I feel confident discussing death with resident's families

12. There is a process for me to follow if I feel uncertain about the care of a resident

13. I feel confident about dealing with family members who are angry about care

14. I feel confident talking with residents and their relatives when there is conflict

#

15. I feel confident dealing with situations in which there are differing opinions

#

16. I believe that staff are supported following a resident's death

17. I feel able to support families at the time of a resident's death

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RN QUESTION 18. It is always fully explained to me why treatments are introduced or changed

EN

AIN

N

%

N

%

N

%

Yes No Sometimes

22 8 18

45.8 16.7 37.5

7 6 11

29.2 25 45.8

29 28 21

37.2 35.9 26.9

Yes No Sometimes

28 8 12

58.3 16.7 25

12 3 9

50 12.5 37.5

39 15 23

50.6 19.5 29.9

Yes No Sometimes

23 2 23

47.9 4.2 47.9

13 2 9

54.2 8.3 37.5

43 12 23

Yes No Sometimes

8 20 20

16.7 41.7 41.7

5 10 9

20.8 41.7 37.5

28 35 13

Yes No Sometimes

4 16 28

8.3 33.3 58.3

5 8 11

20.8 33.3 45.8

21 32 24

Yes No Sometimes

45 0 3

93.8 0 6.3

14 4 4

63.6 18.2 18.2

21 24 16

Yes No Sometimes

23 21 4

47.9 43.8 8.3

4 17 1

18.2 77.3 4.5

3 52 2

55.1 15.4 29.5 # 36.8 46.1 17.1 # 27.3 41.6 31.2 # 34.4 39.3 26.2 # 5.3 91.2 3.5

Yes No Sometimes

14 18 11

32.6 41.9 25.6

6 13 3

27.3 59.1 13.6

3 46 5

5.6 85.2 9.3

19. The nurses in our organisation usually agree on care given to terminally ill residents

20. When caring for a terminally ill resident, doctors, nurses and families work together

21. After a resident's death the nurses and care workers talk about what we did well

22. After a death, the nurses and care workers talk about what could be done better

23. I am comfortable explaining resident's symptoms to GPs

24. I am competent setting up a Graseby pump

25. I am confident converting one analgesic drug to another

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Appendix 7 —Pre – intervention responses to questions from the PCQN by professional group (# significant difference between groups) Correct Answer QUESTION 1. Palliative Care is appropriate only in situations where there is evidence of a downhill trajectory 2. It is crucial for family members to remain at the bedside until death occurs 3. The provision of palliative care requires emotional detachment 4. The philosophy of palliative care is compatible with that of aggressive treatment 5. Morphine is the standard used to compare the analgesic effect of other opioids 6. The extent of the disease determines the method of pain treatment 7. Adjuvant therapies are important in managing pain 8. During the last days of life, the drowsiness associated with electrolyte imbalance may decrease the need for sedation 9. Drug addiction is a problem when morphine is used on a long term basis for the management of pain 10. Individuals who are taking opioids should also follow a bowel regime 11. Drugs that can cause respiratory depression are appropriate for the treatment of severe dyspnoea 12. Suffering and physical pain are synonymous 13. The use of placebos is appropriate in the treatment of some types of pain 14. In high doses, codeine causes more nausea and vomiting than morphine 15. Pethidine is not an effective analgesic in the control of chronic pain 16. Manifestation of chronic pain are different from those of acute pain 17.The pain threshold is lowered by anxiety or fatigue

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RN

EN

AIN

F F F T T F T T

N 27 37 41 4 18 33 41 16

% 56.3 77.1 85.4 8.5 38.3 71.7 87.2 34

N 11 18 19 0 7 11 13 6

% 45.8 75 79.2 0 31.8 45.8 54.2 26.1

N 37 48 42 3 11 26 35 9

% 47.4 62.3 54.5# 3.9 17.2 34.2 50 12.7

F

42

87.5

16

66.7

35

50#

T T

44 21

91.7 47.7

18 6

81.8 25

45 16

66.2# 25

F F T T T T

28 38 23 24 30 30

59.6 80.9 50 51.1 65.2 62.5

9 15 5 7 14 13

39.1 65.2 21.7 30.4 60.9 54.2

19 26 28 17 32 19

26.4 40.6 41.2# 25.8 45.7 27.9

Appendix 8 Post – intervention responses to non PCQN questions by professional group RN QUESTION 1. I am confident when discussing with others my assessment of a resident's symptoms

EN

AIN

N

%

N

%

N

%

Yes No Sometimes

5 1 0

83.3 16.7 0

6 4 0

60 40 0

14 3 9

53.8 11.5 34.6

Yes No Sometimes

5 1 0

83.3 16.7 0

3 2 5

30 20 50

12 7 7

46.2 26.9 26.9

Yes No Sometimes

4 0 2

66.7 0 33.3

3 1 6

30 10 60

15 5 6

57.7 19.2 23.1

Yes No Sometimes

2 3 0

40 60 0

8 1 1

80 10 10

13 12 1

50 46.2 3.8

Yes No Sometimes

3 1 2

50 16.7 33.3

10 0 0

100 0 0

16 3 7

61.5 11.5 26.9

Yes No Sometimes

5 0 1

83.3 0 16.7

10 0 0

100 0 0

23 1 1

92 4 4

Yes No Sometimes

1 5 0

16.7 83.3 0

1 7 2

10 70 20

3 19 3

12 76 12

Yes No Sometimes

0 6 0

0 100 0

0 7 0

0 100 0

2 16 1

10.5 84.2 5.3

2. I believe my opinion is valued when discussing care of dying residents

3. I feel valued as a team member involved with caring for dying residents

4. I have received extra training to help me care for dying residents

5. My knowledge of the process of dying is good

6. I always put the resident's quality of life before routine nursing practice

7. It is essential that dying residents are turned every 2-3 hours

8. I am reluctant to use morphine to dying residents who don’t have cancer

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RN QUESTION 9. Pain is well managed in our organisation

EN

AIN

N

%

N

%

N

%

Yes No Sometimes

3 0 3

50 0 50

1 3 6

10 30 60

10 9 6

40 36 24

Yes No Sometimes

3 1 2

50 16.7 33.3

5 3 2

50 30 20

11 5 10

42.3 19.2 38.5

Yes No Sometimes

2 0 4

33.3 0 66.7

4 3 3

40 30 30

9 9 7

36 36 28

Yes No Sometimes

3 2 1

50 33.3 16.7

10 0 0

100 0 0

24 1 1

92.3 3.8 3.8

Yes No Sometimes

2 1 3

33.3 16.7 50

5 3 2

50 30 20

10 9 6

40 36 24

Yes No Sometimes

1 0 5

16.7 0 83.3

4 3 3

40 30 30

5 15 5

20 60 20

Yes No Sometimes

3 1 2

50 16.7 33.3

4 1 5

40 10 50

11 8 6

44 32 24

Yes No Sometimes

2 3 1

33.3 50 16.7

2 3 5

20 30 50

10 12 4

38.5 46.2 15.4

Yes No Sometimes

4 0 2

66.7 0 33.3

8 2 0

80 20 0

18 0 7

72 0 28

10. I feel comfortable talking to residents about dying

11. I feel confident discussing death with resident's families

12. There is a process for me to follow if I feel uncertain about the care of a resident

13. I feel confident about dealing with family members who are angry about care

14. I feel confident talking with residents and their relatives when there is conflict

15. I feel confident dealing with situations in which there are differing opinions

16. I believe that staff are supported following a resident's death

17. I feel able to support families at the time of a resident's death

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RN QUESTION 18. It is always fully explained to me why treatments are introduced or changed

EN

AIN

N

%

N

%

N

%

Yes No Sometimes

3 2 0

60 40 0

2 5 3

20 50 30

6 10 10

23.1 38.5 38.5

Yes No Sometimes

6 0 0

100 0 0

2 3 5

20 30 50

14 7 5

53.8 26.9 19.2

Yes No Sometimes

3 1 2

50 16.7 33.3

3 1 6

30 10 60

7 7 12

26.9 26.9 46.2

Yes No Sometimes

2 2 2

33.3 33.3 33.3

0 5 5

0 50 50

7 13 6

26.9 50 23.1

Yes No Sometimes

2 3 1

33.3 50 16.7

1 6 3

10 60 30

8 13 5

30.8 50 19.2

Yes No Sometimes

0 5 1

0 83.3 16.7

4 4 2

40 40 20

6 16 4

23.1 61.5 15.4

Yes No Sometimes

3 2 1

50 33.3 16.7

3 7 0

20 70 0

0 22 2

0 91.9 8.3

Yes No Sometimes

3 2 1

50 33.3 16.7

3 7 0

30 70 0

1 19 1

4.8 90.5 4.8

19. The nurses in our organisation usually agree on care given to terminally ill residents

20. When caring for a terminally ill resident, doctors, nurses and families work together

21. After a resident's death the nurses and care workers talk about what we did well

22. After a death, the nurses and care workers talk about what could be done better

23. I am comfortable explaining resident's symptoms to GPs

24. I am competent setting up a Graseby pump

25. I am confident converting one analgesic drug to another

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Appendix 9 —Post – intervention responses to questions from the PCQN by professional group (* correct response,) Correct Answer QUESTION 1. Palliative Care is appropriate only in situations where there is evidence of a downhill trajectory 2. It is crucial for family members to remain at the bedside until death occurs 3. The provision of palliative care requires emotional detachment 4. The philosophy of palliative care is compatible with that of aggressive treatment 5. Morphine is the standard used to compare the analgesic effect of other opioids 6. The extent of the disease determines the method of pain treatment 7. Adjuvant therapies are important in managing pain 8. During the last days of life, the drowsiness associated with electrolyte imbalance may decrease the need for sedation 9. Drug addiction is a problem when morphine is used on a long term basis for the management of pain 10. Individuals who are taking opioids should also follow a bowel regime 11. Drugs that can cause respiratory depression are appropriate for the treatment of severe dyspnoea 12. Suffering and physical pain are synonymous 13. The use of placebos is appropriate in the treatment of some types of pain 14. In high doses, codeine causes more nausea and vomiting than morphine 15. Pethidine is not an effective analgesic in the control of chronic pain 16. Manifestation of chronic pain are different from those of acute pain 17.The pain threshold is lowered by anxiety or fatigue

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RN

EN

AIN

F F F T T F T T

N 5 5 5 0 4 4 5 2

% 83.3 83.3 83.3 0 66.7 66.7 83.3 33.3

N 4 7 8 1 4 4 7 5

% 40 70 80 10 40 40 70 50

N 16 15 15 2 6 6 12 7

% 61.5 60 57.7 7.7 30 24 46.2 28

F

4

66.7

8

80

9

34.6

T T

6 3

100 50

9 2

90 20

12 5

46.2 20

F F T T T T

3 4 3 4 4 4

50 66.7 60 66.7 66.7 66.7

4 8 6 3 6 5

40 80 60 30 30 50

6 9 7 5 11 7

25 36 28 20 44 26.9

Appendix 10 – Policy for a Palliative Care Approach

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Appendix 11 – Palliative Care Plan

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- 93

- 94

- 95

- 96

- 97

Appendix 12 – Work Instruction for a palliative approach

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Appendix 13 – Palliative Care Procedure Flowchart and Audit Tool

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