Jul 17, 2018

Dementia and the topic of assisted dying, far from being straightforward

A journalist recently wrote a piece in support of assisted dying concerning a colleague she had known professionally and personally for some time.

Polly Toynbee said of her colleague, Katherine Whitehorn, “She is not herself. Her old self would not recognise herself in this other being who sits in the care home. What or who she has become is a difficult philosophical question, but she is no longer Katharine Whitehorn as was.”

Whitehorn is living with Alzheimer’s disease. This disease is one that is showing no signs of dissipating among populations across the world. In fact, by 2025, experts have predicted that over 1.1 million people will be diagnosed with the condition in the UK alone.

The topic of assisted dying, far from being a straightforward one, is made all the more complex and loaded when the effects of dementia and mental degeneration are acknowledged. Experts across the health sector are raising concerns as to society’s current inability or lack of preparation in approaching and tackling the ethical issues that Alzheimer’s brings to bear.

When it comes to decisions for a person with dementia, who is to be responsible for how they are treated, especially when they can no longer assess or make those decisions? Is it appropriate and ethical for those who are currently lucid to draw up a contract for how our future selves are to be treated, even if our future selves may want to reject it?

Complex changes and alterations in symptoms as dementia progresses is making for extremely challenging situations and ethical responses. Aside from the momentous area of assisted dying, what should be the response of health care professionals if a decades long vegetarian suddenly starts craving meat? Or a happily-married monogamous patients start to display a desire for same-sex relationships as the disease progresses? How should we as a greater society and particularly, the healthcare community manage these altered decisions, opinions and behaviour when the causal links for these changes could be put down to pathological degeneration?

Work that has been stemming from academic Derek Parfit has proffered the view that after the onset of dementia a person’s self is altered, that they are no longer who they were. From this it can be extrapolated that the wishes of the former self would no longer apply or co-exist with the new self. The person has changed and is now in a different state of person-hood, the former self has no right to dictate how the new self is treated.

While a seemingly straightforward argument it leaves many uncomfortable questions to play havoc with practical approaches. Who is to really say that a person has changed? Would the former self, even if they had known the change to come, want to be treated differently and fed meat? Additionally this view would open the way for arguably immense exploitation of those who are in acutely vulnerable positions. Ethically fraught with difficulties this view and its consequences to wider society is not one that is likely to be accepted in the domain of modern medical ethics.

How are we then to proceed? George Gillett writing for the journal of medical sciences proposes that it is best to assume that someone with dementia is still the same person, even once their disease has progressed. He proposes that we still ask where does advanced care planning fit in to medical and societal ethics?

Gillett believes that in general our desire for control and agency, to make our decisions for ourselves still reverberates strongly. Quoting Dwokin, “to lead our own lives… according to some coherent and distinctive sense of character, conviction, and interest” is important for us, especially when it comes to putting in place boundaries and protection for our vulnerable future selves.

Dwokin, an academic, argues that while patients with dementia no longer qualify for a right to autonomy, since their cognitive capacity has been compromised, to not acknowledge the requests they have made in the past is to disrespect the autonomy of person-hood they once did have.

Gilett brings a different argument to the table. He argues that while dementia may impair some cognitive functioning and therefore the quality of decisions it may not nullify them to the right to autonomy and the right to decide some elements of their care. He also argues that not honouring advanced decisions in the whole should not be seen as a disrespect to past control and agency.

When it comes to assisted dying, Gillett argues that patients should always be able to consent to the given procedure when it takes place yet that the procedure should not be absolute in occurring even if it is put in place in advanced planning. He highlights that while advance decisions are currently popular, certainly giving a sense of control to a person, society and the medical community should be wary of placing entire control in the past self. He argues there is room to be aware of and act upon the ethical duties to the “voiceless patients who are bound to advance decisions they have no memory of awareness of.”

In all areas of medical and ethical complexity, it is important to acknowledge that absolute and unwavering approaches may do more harm than good when it comes to the fluid and unpredictable nature of humans and person-hood.

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