Very difficult to know how we will approach our death until we are in the shadow of it. Will we hold to the ideals we formed when we were healthy, or will fear, or pain, or desperate hope overturn them? There is an interesting blog touching on this theme over at the New York Times. The author’s father was a doctor, a specialist in infectious diseases. In robust professional life he refused to treat opportunistic infections in dying patients. Where death is inevitable, often as not infection is the door that lets it in. For his father, aggressively treating patients in these circumstances was “inhuman…morally wrong… and professionally bankrupt.”

Years later, following protracted decline from Parkinson’s disease, his father had to be admitted to a nursing home. The distance he had come from his healthy prime was stark:

I will never forget when I first saw him there. He was sitting in a wheelchair with his head almost on his lap. He was completely dependent on others. This image of my dad was particularly poignant: The last time I had been in a nursing home with him was when he was the medical director of one, caring for the same type of sad souls he had now become.

As he moved towards the end of his life, his son, also a doctor, began to explore treatment options with him. And it seemed that his views had changed. Gone was the clear-eyed grasp of death’s inevitability and the stern rejection of futile intervention. Any hope, however slight, was worth pursuing.

It wouldn’t be surprising if this kind of reversal were commonplace. I can imagine life coming to seem very precious as you realise you are close to the end of it. And there are times when I think we are almost hard-wired for hope.
How do we reconcile this knowledge with the growing ethical and legal emphasis on preparatory decision making in medicine? How should we view legal tools that permit us to bind ourselves to decisions at a time in the future when we lack the capacity to overturn them? In this instance, should we hold to the healthy man’s dismissal of an encumbered old age or the old man’s desire for life at almost any cost?

Where we retain the ability to make decisions about our treatment, the problem doesn’t press too hard—we are entitled to change our mind. But what about where capacity is lost? A loss of decision making capacity is not the same as a loss of all ability to take pleasure in life. How can we predict in advance of losing capacity what we will value when capacity is lost? I might now be horrified at the thought of living in a twilit world of nursing care and daytime television, but when the time comes I might take demonstrable pleasure in just these things. Which should take priority, my earlier views or the views of the apparently very different person they are about to be visited on?

The philosopher Ronald Dworkin has introduced an influential distinction here—between our critical and experiential interests. Our experiential interests refer to those things we do simply because of the pleasure we take in them: reading, eating, walking. It is easy to imagine how some of these pleasures can endure the loss of many of our mental faculties. Critical interests are linked to our integrity and self-understanding, to our enduring sense of the overall shape of our lives. In the language of contemporary bioethics our critical interests are linked to our autonomy, to that self we have in mind when we talk of the principle of self-rule. Called upon to adjudicate between our views when we had capacity and our experiential interests when capacity has flown, if we are serious about respecting autonomy, our critical interests should predominate. And this is the position that underlies the advance decision making powers in the Mental Capacity Act for England and Wales.

I am attracted by Dworkin’s distinction, but as I am sure he would have been the first to admit, it may not be the last word. For our sense of what our life means to us, our understanding of its purpose and structure—our critical interests—can change. Sometimes this can happen abruptly, following a crisis or illness. More often they migrate, shaped by our experiences, by the process of ageing itself. There can probably be no once and for all capture of our critical interests. In the law, which necessarily focuses on the practical, decision making capacity is the key. But in the complexity of real human lives, questions will always remain.

Julian Sheather is ethics manager, BMA. The views he expresses in his blog posts are entirely his own. This blog also appears on one of the BMA’s communities.