Research into end-of-life care
2011: Ethics of dementia research
In 2008, Alzheimer Europe produced recommendations on the good end-of-life care of people with dementia based on the work of a multi-disciplinary working group comprised of experts in the field of palliative care, medicine, psychiatry and psychology, as well as carers, in collaboration with the board of Alzheimer Europe and its member associations (Alzheimer Europe, 2008).
In its recommendations on good end-of-life care, Alzheimer Europe stated its opinion that a palliative care approach should be adopted for people with end-stage dementia as attempts to cure and prolong life are inappropriate for them. It nevertheless respected the right to individual choice and emphasised that palliative care is not limited to the actual end of life but should be introduced in a seamless manner, overlapping and complementing good dementia care. In this way palliative care is not restricted to the last days or months of life even though the provision of palliative care services may increase towards the end of the person’s life. Palliative care and end-of-life care are therefore not synonymous. A definition of each is provided below.
Definition of palliative care
Alzheimer Europe’s working group on good end-of-life care agreed on the following definition of palliative care, which is adapted from and closely resembles that developed by the World Health Organisation in 2002.
“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
- affirms life and regards dying as a normal process;
- intends neither to hasten nor postpone death;
- does not aim to prolong life;
- strives for a good death (the least distressing passage partly due to the relief of suffering from pain and other distressing symptoms)
- may however be used in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications;
- integrates the psychological, religious and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- aims to enhance the quality of life of patients;
- offers a support system to help family and friends cope during the patient’s illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- is an attitude, a philosophy and a method which should be possible in any environment.”
Definition of end-of-life care
End-of-life care is the care provided to people at the end of their lives. It may involve a palliative approach but not necessarily. People may want to pursue all available medical options (including treatment for other conditions they may have in addition to dementia).
People with dementia who are dying are not all in the final stage of dementia (Lynn and Adamson, 2005). The end of life is difficult to define as dementia does not follow the kind of steady, linear trajectory that is common to many other terminal conditions. Cox and Cook (2007) identify three distinct groups of people with dementia who may need end-of-life care. These are:
- People who reach the end of life but die from some other identifiable condition, such as cancer, before reaching the final stage of dementia.
- People who reach the end of life with a complex mix of mental and physical problems but where the effect on brain functioning is not as advanced.
- People who reach the end of life and die of the complications of dementia, such as end-stage dementia.
Alzheimer Europe’s working group on good end-of-life care defined the end-of-life as being a matter of days or weeks before the actual moment of death (Alzheimer Europe, 2008). This definition is not dependent on any particular stage of dementia. Clearly, good end-of-life care must, by definition, be ethical and much of what applies to good end-of-life care applies to research into end-of-life care and to the involvement of people who are dying with or from dementia in it.
Insufficient research into the end-of-life care of people with dementia
Palliative care services dedicated to the specific needs and situation of people with dementia (and their carers) are not very common throughout Europe. In the United Kingdom, for example, two thirds of patients with cancer who die receive some form of palliative care compared to only one out of twenty non-cancer patients (which includes those with motor neurone disease and AIDS) (Hospice Information Service, 2001 and Addington-Hall and Higginson, 2001).
Staff in palliative care centres and those who provide palliative care at home may therefore be less familiar with issues specifically related to the care of people dying with or from dementia. Similarly, healthcare staff providing end-of-life care or treatment in hospitals or at home are perhaps not sufficiently trained in dementia care or in communicating with people with dementia.
In addition to increasing access to palliative care for people with dementia, research is needed to develop and improve the quality of end-of-life care in general (i.e. including but not limited to palliative care). This might include the development of more effective pain scales, as well as measures to increase comfort and assess quality of life in end-stage dementia. Research of no direct medical benefit is also important for the advancement of knowledge which may improve the care and treatment of people with end stage dementia in the future.
Dementia is not always recognised as a terminal condition. Consequently, it is not always recorded as the actual cause of death on the death certificate, or at least not as the main cause of death, even when this is clearly the case. This may have an impact on the acquisition of medical knowledge about the final stage of dementia and on the ability to accurately predict the end-of-life of people with dementia. Research is therefore needed to develop indicators of the final prognosis, with the ability to predict the last weeks and days of life as this has important consequences for the care and treatment provided.
Conflicting views and interests
Whereas with end-of-life care, the emphasis is on the patient, as explained earlier, one of the aims of palliative care is to provide a support system to help family and friends cope during the patient’s illness and in their own bereavement. Taking up the time and energy of the person with dementia in his/her last moments of life may deprive families of precious time with that person. This would be particularly relevant if the person with dementia was in residential care, hospital or a hospice and if relatives and friends lived some distance away. Addington-Hall (2002) argues in favour of respecting the principle of autonomy (which would mean letting the patient decide) but encouraging him/her to discuss the issue with his/her family or close friends. If the person lacks the capacity to decide and did not previously express his/her wishes, there would be a risk of close relatives and friends deciding on behalf of the person with dementia against his/her participation either directly or by blocking potential researchers’ access to him/her.
Stereotyping and devaluation
There is a danger that blanket judgements will be made about the value or quality of life of people in the advanced stages of dementia, but also generalizations about what is good for people with end-stage dementia. Such judgements and generalizations may be well intentioned but fail to respect the individuality of each person with dementia.
There is also a risk of failing to recognise the personhood of people with advanced dementia due to stereotypes about awareness, capacity and the ability to communicate. This can happen at any stage of dementia but in the end stage, it may be more likely. In some cases, their failure to recognise loved ones, difficulties communicating and changed physical appearance and behaviour may make it difficult for families to consider them as the same person or in the extreme as being a person at all. This puts the person with dementia in an extremely vulnerable position.
- The issue of recording dementia as the cause of death on death certificates should be addressed.
- Stereotypes about people who are dying with or from dementia (e.g. linked to wellbeing, quality of life and capacity) should be challenged.
- Research should be carried out to develop more precise indicators of the end of life for people with dementia.
- Research should be carried out to develop appropriate end-of-life care and treatment for people with dementia (including palliative care).
- It should not be presumed that people with dementia would not want to participate in end-of-life research.
- Researchers should approach people who are dying with or from dementia (and their carers) about research with great sensitivity, paying attention to possible signs that they do not want to discuss the issue or that they are either not aware of, or in denial, about their prognosis.
Last Updated: Friday 14 November 2014