Care for a dignified end of life
2014: Ethical dilemmas faced by carers and people with dementia
A dignified end of life is one in which the person with dementia is treated with care and respect as an individual, taking into account their needs and wishes, in the absence of pain.
Regarding access to palliative care services at the end of life
Dementia is considered as a life-limiting condition, even though people may live for many years after the initial diagnosis and receive psycho-social support and treatment for the symptoms. Consequently, it is also considered as a condition for which palliative care should be provided. Such care aims to improve quality of life, reduce suffering of patients and families and address physical, psychosocial and spiritual problems throughout the whole course of dementia. (17)
Owing to the origins and development of palliative care being linked to the care of people with cancer in the last stages of life, its appropriateness for people with dementia, even in the last stages of life, is often overlooked. Many people with dementia have no access to palliative care at the end-of-life. Palliative nursing care and spiritual end-of-life care for people with dementia is largely under-developed. (18) In addition, there have been reports of people with dementia being left in pain and being treated without due respect for their human dignity. (19) This can be very distressing for carers and for people with dementia who feel emotional and physical pain despite their cognitive difficulties and may sense the lack of respect for their dignity.
Interpreting and respecting previously expressed wishes
At the end of their lives, many people with dementia have reduced cognitive abilities and have difficulty or are unable to make decisions or express their wishes. Some may have a proxy decision maker and may have discussed their wishes with that person. However, as death tends to be a taboo subject, this is not always the case. Others may have recorded their wishes in an advance directive.  Depending on national legislation, the situation and the decision that needs to be made, previously expressed wishes may be advisory or legally binding.
As a person may have the ability to make a decision about one thing and not another and this may depend on a range of factors (e.g. the time of day, how they are feeling, the complexity of the issue, pain, tiredness and fluctuations in capacity), it must be determined each time whether they are able to make that decision. When the person is unable to do so and has made their wishes known, those wishes still need to be interpreted in the context of the current situation. Difficulties may arise when the wishes are ambiguous, do not clearly reflect the current situation or were made before certain medical advances were made. There may also be conflict when carers disagree with the previously expressed wishes or disagree amongst themselves as to how these should be interpreted. Some people feel that the person with dementia has changed so radically that they are no longer the same person and that, consequently, their previously expressed wishes are no longer relevant.
Deciding on behalf of the person with dementia
Carers and officially appointed proxy decision makers are sometimes asked to make decisions or play a role in decision making about end-of-life care and treatment. Some of these decisions have an impact on the person’s comfort, well-being and dignity, but some may affect the duration or experience of that person’s remaining life (e.g. linked to refusal or withdrawal of tube feeding, hydration and medication). If these processes and the consequences are not fully understood by carers, they may wrongly believe that they have contributed towards the person’s death or suffering.
Some carers and proxy decision makers feel overwhelmed by the responsibility and the possible implications of their decisions, wondering what the person would have wanted and whether they made the right decision. They may also have doubts about their decisions in relation to their own values, wishes and spiritual and religious beliefs, as well as those of the person with dementia.
Outside influences in relation to certain decisions about end-of-life care
Decisions made by people with dementia in relation to life-sustaining treatment, either in advance or at the time if they have sufficient capacity, may be influenced by social pressure and negative perceptions of the value of older people and/or people with dementia within society. In other words, some people feel that they should not insist on every effort being made to keep them alive because they are not worth it or are a burden to their families or society. Similarly, carers and other proxy decision makers may be influenced when making similar decisions by portrayals of dementia which emphasise the negative aspects of having dementia and assume that people with dementia have no quality of life. Personally, they may feel differently about it and want every effort to be made to keep them or their loved one alive but feel that insisting on this would be selfish or unreasonable. People are not always aware of such powerful societal influences.
Ethical issues when providing care to ensure a diginifed end of life
The main issues linked to the provision of care to ensure and dignified and painless end of life, which might have ethical implications, include the following:
- determining and interpreting wishes where there may be a conflict between what the person with dementia would have wanted and societal influences,
- dealing with possible discrepancies between former and current wishes of people with dementia,
- deciding on behalf of someone with dementia,
- dealing with difficulties accessing palliative care services,
- being involved in decisions about withholding and withdrawing investigations and treatments,
- dealing with the feeling that the person with dementia has changed so radically that they are no longer the same person.
Harry has always tried to exercise control over his life and has never shied away from difficult decisions. Shortly after diagnosis seven years ago, he wrote an advance directive in which he recorded his wishes in relation to every possible scenario he could imagine. He was quite an authoritarian person and generally distrustful of people, especially of doctors he didn’t know.
A few days ago, he was admitted to the emergency ward of a hospital following a mild heart attack. The hospital staff know that he has an advance directive in which it is stated that in the event of a heart attack when he has moderate to advanced dementia, he does not want to be resuscitated. If he has another attack and needs to be resuscitated he may therefore die. His wife, Marie, insists that although he is currently unable to communicate, once fully conscious he would tell them that he wants to live. It is so long since he wrote the document and at that time he had a different impression about what it would be like to have dementia. Also, he has changed a lot since he was diagnosed. He is much more trusting, openly affectionate and easy going. He has a grandson who adores him and he is enjoying life.
His son, who has not had much contact with him in recent years, argues that his father currently lacks the capacity to express his wishes and that his previous wishes should be respected to the letter. Marie feels helpless and unsure about who is right. She feels that he is not the same person as the one who wrote the advance directive.
Down the corridor, in another ward, there is a lady with severe dementia called Dawn. When she was younger, Dawn’s mother looked after her own mother who had dementia. She had a manual job with long hours, three children and a husband with alcohol abuse problems. She had no support and was not on good terms with her mother (i.e. with Dawn’s grandmother). She used to frequently say things like, “If I ever get like that, please put me out of my misery” and “please don’t let me ever be a burden to anyone”.
Dawn had a happy marriage, gets on well with her daughter and son and has a network of close friends. Her husband has since died and her son and daughter are being consulted about the possible withdrawal of liquids and food. Dawn has expressed a few times since diagnosis concerns about being a burden to her family. Her son feels that Dawn’s previously expressed wishes (which were not recorded), about not wanting to be a burden to others, do not really reflect her own beliefs but rather those of her mother. Her daughter accepts unquestioningly that a person would not want to be a burden to their relatives and that her mother made her views very clear.
Ethical commentary by Prof. Julian Hughes (United Kingdom)
Harry has changed. It could be said that it’s a dramatic change, from ‘authoritarian’ to ‘affectionate’. But we all change in a variety of ways over the course of our lives and some of these changes are equally dramatic: from the child to the punk rocker to the partner in the law firm and so on. We both are and are not what we once were.
The Law will be different in different countries. But, before proceeding, it is worth noting two general issues. First, when we talk about advance directives we should ask whether the circumstances covered by the directive are actually the circumstances that now obtain. How did Harry imagine ‘moderate to advanced dementia’? There are grounds for thinking that he thought it would be much worse than it is for him. What has changed since he wrote his advance directive and does this have a bearing on how we should interpret it? Secondly, when a person lacks capacity (or competence) and others must, therefore, make decisions for them, these should be based as broadly as possible. Everyone’s views need to be heard and then judgements can be made that are likely to be the best for Harry.
And this takes us back to thinking about Harry being the same person. Whether or not we think he is the same person will depend on how broadly we think about what it is to be a person. Some have suggested that a person is someone who can remember. Obviously, this then poses a threat to people with dementia who have memory problems. But there are other aspects to being a person.
As persons we have bodies. We also have families, cultures, histories, moral and religious views, and so forth. We are situated or embedded in these multiple fields, which all contribute to our being the persons that we are. In which case, Harry is the person he is in part because of his history (so we cannot ignore his past wishes). But his body also locates Harry as the man who is before us now. We have good testimony from someone who is very close to him, namely his wife (Marie), that he has changed. Her views need to be given a good deal of weight because of the role that she plays in his narrative or story, which partly defines him as a person. This does not mean that we should ignore the views of his son. But the broad view of the person means that we have to try to keep every aspect of his beingthisperson in view: the concrete circumstances he now finds himself in, his past and present, his beliefs and those of the people who are near to him. It may seem as if we have to act with the wisdom of Solomon; but why should we have presumed that it would be easy to make decisions for other people?
Ethical commentary by Ms Jana Kasparkova (the Czech Republic)
The person with advanced dementia needs increasing levels of nursing care and gradually becomes totally dependent. In the twilight phases of dementia life can be compared to “the flickering of a candle”. We would usually wish people with very advanced dementia to be cared for with understanding, kindness, consideration and sensitivity. People must be pain-free and kept clean; they should have company and enjoy the kindness of human touch. Many relatives and professionals would assume that the person dying with dementia needs to be supported to live well without "undue interference", especially where this – whether it be unnecessary diagnostic procedures, the provision of food or fluids by artificial means (e.g. tubes or drips), the inappropriate use of catheters or drugs and so forth – might prolong distress without improving the quality of the person’s life. We may assume that it does not make sense to prolong the suffering of someone who is very impaired. In other words, we need a palliative approach.
However, judgements about quality of and meaning in life can be largely subjective and, if the judgement is to be made, it should try to respect the view of the person with dementia. Ideally, the person might express his or her wishes in advance and record them in writing (i.e. in an advance directive), as Harry did. However, where there is no advance statement, decisions about whether to provide potentially life-prolonging treatments have to be made by caregivers or by officially appointed representatives. On the one hand, carers recognise the inevitability of death, which will bring about an end to suffering; on the other, carers may also feel burdened with guilt and shame for seeming to accelerate the death of a close relative, whether on the basis of an advance directive or on the decisions of carers. Confusing and contradictory feelings are, in such circumstances, entirely normal.
For Dawn’s family the difficult dilemma concerns food and fluids. They are faced by uncertainty over what Dawn had in mind when she talked of not wishing to be a burden. It may help relatives to hear that at the end of life people probably have reduced feelings of hunger and thirst. Liquids can still be used at least to moisten the lips to reduce dryness and to give comfort. The main thing in the case of Dawn’s family must be to try to help them to understand what is happening to Dawn and why, what will help and what will not, what will be a burden and what will not. In addition, their own thoughts and feelings need to be acknowledged. In the final phase of life, communication between health professionals and family or other close non-professional carers will be vital. It is by good communication (listening and hearing as well as informing) that the right care and support will be negotiated. This teamwork can help carers to make their final decisions based on the patient's wishes and in accordance with the person’s life, values, beliefs and conscience.
 See section on the initial period of adaptation (page 19).
Last Updated: Monday 08 February 2016