End of life planning and care for people with dementia

end of life blogPlanning for the end of someone’s life is a very challenging time.  There are many considerations for the person with dementia, their carers and professional health workers.  Of course, keeping the individual and their wishes firmly in frame is of critical importance.

I really like the words of Alzheimer’s Australia President, Ita Buttrose:

“End of life care is a sensitive and complex topic. All too often, decisions regarding end of life care are made towards the end of the dementia journey at a time when the person living with dementia is often unable to relay their preferred care choices.

Dementia is a terminal illness, but the trajectory of the disease is different from other conditions such as cancer. The life expectancy of an individual with dementia is unpredictable and the disease can progress for ten years or more.
Traditional approaches to terminal disease such as palliative care services are often not designed for the long trajectory or the complexity of issues that dementia raises around capacity and choice at end of life. Some consumers have been told that they are not eligible for palliative care services because the person was not ‘dying quickly enough’.
Some of the most poignant stories I have heard during my time as President of Alzheimer’s Australia have been about the difficulties of care at the end of life.
During our consultations on aged care reform in 2011, family carers told us they were racked with guilt because they had been unable to persuade staff to respect the documented wishes of the person with dementia. The result had been a painful and undignified death.
Family carers also feel that the provision of information about advance care directives is lacking. In cases where the person’s wishes are not documented, family carers are left with questions as to what choices to make.
These issues add to the already considerable distress experienced by people living with dementia, carers and family members. If we are to avoid unnecessary trauma at end of life for the person and the family carer then frank and open discussions are needed much earlier.” Models of Dementia Care: Person-centred, Palliative and Supportive, p. 3
Below are items from our collection that may be of use to carers, people with dementia and professional health workers during End of Life Planning and dementia-focused palliative care.

Research paper: Models of Dementia Care: Person-Centred, Palliative and Supportive, Alzheimer’s Australia

research paper 35The purpose of this paper is to generate discussion regarding how we care for people with dementia at the end of their lives. This paper sets out a new model of care underpinned by the principles of person centred care, palliative care and supportive care which will allow the person with dementia to live well and have control over decisions relating to their care.

DVD: The Patient’s Choice: Quality at the End of Life, Rural Health Education Foundation

Death is one of society’s last taboos. Advance care plans get people thinking and talking – to their families and their doctors. They give patients a voice, and provide health professionals with clear indications about choices at the end of life.pall_care_dvd
This DVD explores the issues involved in end of life care. It looks at the need for the patient to have accurate information and a specific assessment of their situation; it examines the use of advance care plans; and explores the latest developments in palliative and end of life care.

Book: Living and Dying with Dementia: Dialogues about Palliative Care, N. Small, K. Froggatt and M. Downs

Living_dying_dementiaImprovements in health care mean that people are now living longer, but this creates the paradox of chronic illness becoming increasingly prevalent. Dementia is one of the most feared conditions associated with an ageing population, and it promises to become the major health challenge of the 21st century. How society, and we as individuals, respond to dementia is crucial.

Inevitably, people living with dementia will die, but their needs at the end of life are not well known. This book describes what might be achieved if the values and best practice of both dementia and palliative care are brought together, to achieve quality end of life care for this specific group of patients.

Booklet: A booklet for older people and their families: How a palliative approach can help older people being cared for at home, Department of Health and Ageing, Australian federal government.

booklet_familiesThis booklet is for older people living in the community and for their family and friends. It is a simplified summary of a much more detailed document called Guidelines for a palliative approach for aged care in the community setting (also called the Community care guidelines) which is also available from Alzheimer’s Australia Vic Library but not detailed in this blog post. This plain English summary provides older people and their family carers with helpful information about good care practices for older people living in the community.

Most of the information in this booklet is based on ‘good practice points’ agreed by the experts who developed the Community care guidelines.

This resource is available in our library, and you can order your own copy  via the Department of Health’s website. Hint: you need to carefully look at the list of publications, it’s in there!

Booklet: A booklet for care workers: How a palliative approach can help older people receiving care at home, Department of Health and Ageing, Australian federal government

booklet_care_wkrsThis booklet is for care workers providing a palliative approach to care for older people living in the community and support for their family carers. It is a simplified summary of a much more detailed document called Guidelines for a palliative approach for aged care in the community setting (also called the Community care guidelines) which is also available from Alzheimer’s Australia Vic Library but not detailed in this blog post. This plain English summary provides care workers with helpful information about good care practices for older people living in the community.

Most of the information in this booklet is based on ‘good practice points’ agreed by the experts who developed the Community care guidelines.

Part A – includes general information care workers need to consider when caring for older people who are receiving apalliative approach to care at home.

Part B – includes information care workers need to consider when caring for specific groups of people who are receiving apalliative approach to care at home.

This resource is available in our library, and you can order your own copy via the Department of Health’s website. Hint: you need to carefully look at the list of publications, it’s in there!

Book: Decision-making, Personhood and Dementia: Exploring the Interface, edited by D. O’Connor and B. Purves

decision_makingDementia is a devastating disorder which may dramatically interfere with decision-making abilities. Effort has focused on trying to determine when a person is no longer capable of making particular decisions or is globally incompetent. However, much less focus has been placed on understanding how the capacity to make decisions influences one’s view of oneself, one’s world and one’s treatment by others. This book aims to broaden discussion around this issue by moving beyond a focus on notions of capability and competence to explore the importance of personhood and the underlying complexities of decision-making for those with dementia.

Based on papers from the Centre for Research on Personhood in Dementia (CRPD) workshop, experts in dementia care, law, ethics and philosophy discuss the interface between dementia, personhood and decision-making. Drawing on a wide range of interdisciplinary and international perspectives, the book forges new understandings of relationships between everyday, informal decision-making and more formal biomedical or legal processes for assessing competence.

This collection of papers provides an in-depth understanding of decision-making in relation to dementia for researchers, healthcare practitioners, service providers, legal professionals and anyone with an interest in personhood in dementia care.

DVD: Dementia Palliative Care: An education resource for health workers, South Australia & Northern Territory Dementia Training Study centre

dem_pall_care_dvdAn education resource for health workers introduces the essential elements necessary for health workers to support people with advanced dementia to live well until they die. Dementia is a life threatening condition and the principles of palliative care underpin good dementia care, diagnosis to death. Health workers involved in caring for people with dementia need information, emotional support, and skills to positively impact the many people who are living with dementia.

Research Paper: Wrestling with dementia and death: A report for Alzheimer’s Australia, Professor J. Abbey

report34It is never easy to have discussions about death and dying or to face the reality that you or someone you love has a terminal illness. People put off discussing preferences about end of life care for as long as possible. Research from Palliative Care Australia in 2011 found that only about a third of Australians have discussed preferences for end of life care with their family. Even amongst older people, only about half had discussed their preferences with their family.

For people with dementia and their carers, talking about death and dying is complicated by the progressive nature of the disease and the eventual loss of capacity of the person with dementia to be involved in decisions about their care. People with dementia are encouraged to document their wishes for end of life care early on in the dementia journey, but discussions about the realities of death and dying are often avoided for as long as possible.
For consumers there are two main strategies to ensure that individuals with dementia receive end of life care that meets their wishes.
First, there is a need to demystify concepts and experiences of end of life care. This paper, Wrestling with Dementia and Death, attempts to do this by providing an overview of some very challenging practical issues faced by individuals with dementia and their families at the end of life. This paper may be difficult and confronting for some people as it covers difficult issues such as nutrition and hydration at end of life. But it will be a valuable resource for many who are seeking more information about what to expect towards the end of life and how to develop an appropriate care plan. This paper should be read in conjunction with Alzheimer’s Australia’s Planning for the End of Life for People with Dementia by Professor Colleen Cartwright which provides detailed information about options for advance care planning and legal issues around capacity.

Resource kit: Providing culturally appropriate palliative care to Aboriginal and Torres Strait Islander peoples, The National Palliative Care Program

pall_care_aboriginal_tsiPalliative care providers throughout Australia and the Australian Government Department of Health and Ageing have recognised that palliative care provision needs to be more culturally appropriate to meet the needs of Indigenous Australian palliative patients, their families and communities.

Contrary to popular belief, Indigenous Australian culture is not a single culture. Rather it comprises a number of different cultures which share some common values and beliefs. The diverse cultures of Indigenous Australians, the influence of European cultures and religions, and other social and environmental factors all contribute to the broad range and diversity of cultural beliefs and requirements of Indigenous Australians. There is no single formula or set of practices which can be applied to meet these needs.

The Practice Principles are based on a holistic approach to palliative care, responding to the spiritual, emotional, social, psychological, physical and economic needs of the Indigenous Australian patient.
The CD-ROM is designed to support the implementation of the national Practice Principles on the provision of culturally apprioprate Palliative Care of Indigenous Australian people

Happily, this resource is available in our library, and you can order your own copy via the Department of Health’s website. Hint: you need to carefully look at the list of publications, it’s in there!

Research Paper: Planning for the End of Life for People with Dementia: Part One, Professor C. Cartwright, Alzheimer’s Australia

report23p1This booklet provides people with dementia, and those close to them, with information about their rights regarding options and choices for care in the time leading up to the end of life. It also seeks to assist family members, friends and health care providers to understand what they can do to support the person and/or their carer to have their end-of-life care decisions respected.
The booklet considers what a diagnosis of dementia may mean for patients, their families and friends. It provides information to assist with understanding what legal mechanisms are available to put plans in place for a future time, including the time leading to the end of life, when the person with dementia will have lost capacity to make their own decisions. This can include:
  • Advance Financial Planning
  • Advance Care Planning
  • Making Funeral Arrangements.
There is also a section which discusses bereavement care for carers/families/friends.
Understanding what Advance Care Planning options are currently legally available in Australia can assist people with dementia and their carers with planning to ensure that their wishes are known and respected and that their legal rights are protected.

Research Paper: Planning for the End of Life for People with Dementia: Part Two, Professor C. Cartwright, Alzheimer’s Australia

report23p2Part 2 of the publication is a discussion about additional end-of-life options which may become legally available at some time in the future, i.e., assisted death (usually called euthanasia or assisted suicide). Alzheimer’s Australia is not advocating that such options become available and takes a neutral position about them. However, there is a need for an informed debate on the issues, given that well-conducted research indicates that a significant proportion of the community supports making such options available.
Some people believe that they should have the right to make decisions about their own bodies and about the way they die; in other cases people see the current legal and medical options as inadequate. While Australia was the first place in the world to pass legislation allowing both euthanasia and physician-assisted suicide (i.e. the Northern Territory Rights of the Terminally Ill Act (1995)), that legislation was overturned by the Commonwealth’s Euthanasia Laws Act (1997) and at present these options are illegal throughout Australia. However, given that assisted dying Bills are regularly presented to state/territory parliaments in Australia (e.g. the recent: Western Australian Voluntary Euthanasia Bill 2010, introduced to the Parliament by the Hon Robin Chapple on 20 May 2010; the South Australian Voluntary Euthanasia Bill 2010, introduced to the Parliament by the Hon Bob Such MP on 24 June 2010; and the Restoring Territory Rights (Euthanasia Laws Bill) introduced into Federal Parliament on 29 September 2010 by the Hon Bob Brown, leader of the Greens Party), it is possible that, at some time in the future, legislation will be passed that allows such options. It is therefore important for the arguments for and against assisted dying to be understood and for open debate to be encouraged. We hope that the information provided in this document will contribute to that debate.
Section 2 of Part 2 asks: What is doctor-assisted dying*? and identifies what is and what is not euthanasia. In Section 3, arguments for and against doctor-assisted dying are provided and in Section 4 some issues which relate specifically to assisted dying for people with dementia are considered.
*(Note: while it is possible in some countries, such as Switzerland, for people to be assisted to die by someone other than a medical practitioner, in most countries – including Australia – legislation which has been enacted or proposed limits the carrying out of such actions to medical practitioners and therefore the term “doctor-assisted dying” will be used in this publication.)

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