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Et In Arcadia Ego

Vaitsa Giannouli asks philosophical questions about dementia and responsibility.

During the last five years, as I examined numerous older people with different forms and stages of cognitive deficits ranging from Mild Cognitive Impairment to Alzheimer’s dementia, a plethora of thought-provoking philosophical questions arose. I believe that questions are more important than answers (“Judge a man by his questions rather than by his answers”: Voltaire), and like Richard Feynman “I would rather have questions that cannot be answered than answers that cannot be questioned.” Therefore I want to draw your attention to some important but widely ignored philosophical questions relating to dementia. I’ll be quoting many thinkers but “I quote others only in order to better express myself” (Montaigne). In order to be a free thinker and not accept everything I hear, I need to be critical and prepared to evaluate everything I believe.

Perhaps a lived example could best introduce some of the hidden dilemmas encountered in the care of the cognitively impaired. Mary is an eighty-five-year-old patient suffering from mild Alzheimer’s disease. She’s in the first stage of a devastating process which in varying degrees affects mental activities, personality, and social behaviour. Mary has a family consisting of adult children and grandchildren. Like most of us, she also constantly has choices to make. She needs to take decisions on various longer-term financial issues large and small that she has not yet arranged. Can she cope?

In clinical terms, evaluating someone’s competence to make decisions can involve the assessment of specific capacities – including the capacity for medical consent, the capacity for sexual consent, testamentary capacity, driving capacity, capacity for independent living, and (thinking of Mary) financial capacity. The first question that troubled me, due to its implications for everyday practice in dealing with dementia, comes from moral philosophy. Is it right – or even the duty of the state/caregivers/family – to take control over the decisions of someone with dementia, such as Mary? More mildly put, should we interfere with (assist, manage) the financial or other decision-making of older adults suffering from cognitive deficits such as Alzheimer’s?

Jean-Paul Sartre wrote, “man is nothing else but what he purposes, he exists only in so far as he realizes himself, he is therefore nothing else but the sum of his actions” (Existentialism is a Humanism, 1946). But what happens if someone – in our case Mary – cannot realize herself through decisions, through action?And what of doubtful cases of behaviour, others find merely odd? As Diogenes said, “It is not that I am mad, it is only that my head is different from yours.”

Based on our response to Sartre’s idea, should we take decisions on behalf of older patients with cognitive deficits, or just leave them to take care of their affairs as and when they can, even if they risk possible financial exploitation and abuse? In other words, should we leave them in the storm unprotected, like Shakespeare’s King Lear? After all, we can “cause evil to others not only by our actions but by our inactions” as John Stuart Mill reminded us; or as Voltaire said, “every man is guilty of all the good he did not do.” We might also remember that “mercy without justice is the mother of dissolution; justice without mercy is cruelty” (Aquinas), and further, that “no act of kindness, no matter how small, is ever wasted” (Aesop). Also, “you can easily judge the character of a man by how he treats those that can do nothing to him” (Goethe). We might also think that “it is not so much our friends’ help that helps us, as the confidence of their help” (Epicurus).

Choosing Ethical Principles

Principlism is an approach to applied ethics popular for the examination of moral dilemmas in healthcare. It is based upon a handful of core ethical principles: respect for autonomy, beneficence, non-maleficence, and justice, and stresses the need for wisdom and practical judgment in intelligently applying those principles. Applying these principles is rarely straightforward of course. Take autonomy. Even if you “never impose on others what you would not choose for yourself” (Confucius), this doesn’t guarantee that your decisions for the affairs of others are the right ones, or those that they would have followed themselves. Principlism has also attracted heavy criticism over the potential for contradictions between its core principles, and for not offering a way to rank those principles when they conflict.

Apart from this, in the case of dementias we have another problem to think about too. To understand what dementia sufferers might choose for themselves, we need to understand what is it like to be a person with dementia-cognitive deficits. What is it like to be a bat, asked Thomas Nagel, but can we ever adequately understand another person’s perspective?

It is important that people with dementia know themselves, even if Thales said that knowing yourself is most difficult thing in life. Many centuries later Søren Kierkegaard and other existentialist philosophers also argued over self-knowledge. But specifically for our considerations, in order to take a decision, for example regarding financial matters, do we only or primarily need to understand thoughts (that is, our cognitive or rational thinking), or do we need to understand emotions as well? Are emotions equally important? Given that those with dementia have emotional changes as well as cognitive deficits, we need to ask, does human behavior flow from three main sources: desire, emotion, and knowledge (Plato)? Or is it rather the case that “to think and to be is the same thing” (Parmenides)? (cf ‘I think, therefore I am’ – Descartes; and “I call him free who is led solely by reason” – Spinoza.)

Are we necessarily even talking about the same person? Do the people taking the decisions continue to be the same at different moments in time – especially when we have evidence of rapid neurodegeneration, as with dementia? In other words, can we apply to older adults with dementia, John Locke’s description of the person as “a thinking intelligent being, that has reason and reflection, and can consider itself as itself, the same thinking thing, in different times and places; which it does only by that consciousness which is inseparable from thinking, and… [is] essential to it”? (An Essay Concerning Human Understanding, 1689). Or is Heraclitus right instead when supposing that “no man ever steps in the same river twice, for it’s not the same river and he’s not the same man”?

Moreover, are adults with dementia free when taking decisions? Do people with dementia have free will; and if not, until when do they have it? Or is Sartre right that “man is condemned to be free; because once thrown into the world, he is responsible for everything he does” (Being and Nothingness: An Essay on Phenomenological Ontology, 1943). Moreover, is freedom ‘the power to choose our own chains’ (Rousseau), or ‘the right to live as we wish’ (Epictetus)? And is it true that ‘nothing can exist without a cause’ (Voltaire), or rather is it the case that ‘free will is to mind what chance is to matter’ (Darwin)? David Hume wrote that there is no such thing as freedom of choice unless there is freedom to refuse. That idea is surely relevant here.

Also connected with issues of personal identity: if a decision has been taken years ago, for example, in the form of a living will, should this decision be changed if the person who made the decision is no longer capable of understanding the situation, or the decision they made?

Modern Ethical Concerns

Does special treatment (or control) of adults with dementia and their financial decisions imply ageism, stereotyping, discrimination, or other oppression against them on the basis of their age? And do we accept Plato’s argument for the three parts of the soul – the rational, the appetitive, and the spirited – by which adults with dementia, deprived of the rational, have to accept a different, treatment? Or should we support Erasmus’s view that “he who allows oppression shares the crime” – in line with Diderot’s saying, “no man has received from nature the right to command others”?

Does cultural relativism influence the decisions taken by third parties such as lawyers, judges, mental health experts, and family members/caregivers concerning capacity in elders? And if this does happen, to what extent is it acceptable? As Immanuel Kant wrote, “I ought never to act except in such a way that I can also will that the maxim of my action should become a universal law” (Groundwork for a Metaphysics of Morals, 1785). Or is man ‘the measure of all things’ (Protagoras), including the specifics of right and wrong? If so, is Nietzsche right when saying that “we have to assess the value of our values since values are relative to one’s goals (which are frequently wicked when we are talking about money) and one’s self” (Thus Spoke Zarathustra, 1868)? Thomas Hobbes wrote that “good and evil are names that signify our appetites, and aversions; which in different tempers, customs and doctrines of men are different” (Leviathan, 1651).

What is justice and injustice in the case of financial decisions in dementias? Aristotle said that justice consists in what is lawful and fair, with fairness involving equitable distributions and the correction of what is inequitable. Plato said that the worst form of injustice is pretended justice. Ought this to refer to clinical practitioners applying out-of-date laws that do not treat people with dementia according to recent scientific findings and current socio-cultural reality – perhaps just to keep up the appearance that care is being taken of the elderly?

Conclusions

These considerations show that concerning the ethics of dementia care, there are more questions than answers (‘One thing only I know, and that is that I know nothing’ – Socrates). From diagnosis to treatment we are surrounded by unsolved questions. This is partly because medicine, law, neuroscience, psychology, and ethics have different languages. But although “language is the source of misunderstandings” (Saint-Exupery), “doubt can only be removed by action” (Goethe). In other words, perhaps interdisciplinary approaches will be shown to support the idea that “coming together is a beginning; keeping together is progress; working together is success” (Henry Ford). This should remind us that in order to find answers to these philosophical questions concerning clinical practice, “alone we can do so little, together we can do so much” (Helen Keller).

Vaitsa Giannouli took her PhD in Neuroscience at the School of Medicine of the Aristotle University of Thessaloniki, Greece.