MY father died a fortnight ago. It was unexpected and shocking. He was 70 and, as far as anyone knew, in good health. The days and nights since have been a strange, raw and difficult time. It has been a period in which I have felt both absence from, and heightened presence in, the world. In the midst of it all, I have learned about, and reflected on, matters of ethics – some fundamental and profound and some seemingly minor but nonetheless life-altering.
First, I have been reminded that discussing an experience in the abstract rarely prepares for the moment that experience occurs. I am a proponent of what is known in the USA as “the conversation”. I prefer a series of discussions. However, I do subscribe to the view that talking about death and reflecting on our preferences, beliefs and expectations is not merely valuable, but necessary. It allows for informed decision-making, particularly when proxies and substituted judgments become involved. It facilitates the best possible care in the most difficult of circumstances. Perhaps less often-acknowledged, such conversations create space and opportunity for meaningful connections that will endure beyond death.
Yet, we must take care not to misrepresent these conversations about death and dying. They cannot and will never alter the complex emotions that ebb and flow when someone dies. It does not matter whether the death is sudden like my father’s or anticipated for some time. The sense of disbelief and unfamiliarity of crossing into the terrain of the recently bereaved is unavoidable. Death and dying can be prepared for in many ways, but we cannot dodge, nor should we seek to dodge, the emotional ballast that is grief. For it is borne of love, and the loss of love cannot be rehearsed or controlled: it can only be felt.
We cannot dodge, nor should we seek to dodge, the emotional ballast that is grief. For it is borne of love...
Secondly, I have learned that there are hundreds, maybe thousands of people, making a quiet but unforgettable difference when someone dies. They are not the healthcare professionals whom I have necessarily identified as significant or considered in any of the teaching or writing I have done over the years on ‘end-of-life care’. That has been a significant omission and oversight on my part; for these men and women have been transformative in improving the experience of my family in recent weeks.
I refer to the healthcare assistant who silently sat with my sister whilst she telephoned the rest of us to let us know the news. I refer to the cleaner who, on finding me in the lavatories, asked if I was okay before enquiring whether I would like her to stay or would prefer to be alone. I refer to the parking attendant who gently handed us a pass to get out of the car park when we realised none of us had change for the ticket machine. I refer to the mortuary assistant who managed to be both attentive and unobtrusive when we visited. I refer to the funeral directors who explained honestly and kindly what options were available to us whilst we waited for the coroner to report. I refer to the coroner’s administrator who kept us informed, without being asked, at each stage.
These were not merely acts of kindness. They were moral acts. They were, in ethical language, demonstrations of virtue and values. These were individuals who will not be forgotten and whose faces, voices and gestures of empathy shall endure.
Thirdly, there have been moments of defensiveness or even hostility from professionals who are charged with care. It saddens me that these few, but nonetheless bruising, encounters have been with doctors and nurses. There are, almost certainly, sound reasons why they have responded as they have: they may be exhausted, recently bereaved themselves, numbed by many years of disease and death, ill or otherwise struggling, or perhaps they were anxious about not being able to explain what happened. The institution may have communicated its own fears about an unexplained death with the concomitant possibilities of complaints or even litigation. A culture of inquiry may quickly become one of interrogation and inquisition.
I do not blame these people. I do however know afresh what courage and commitment it takes for individuals to act with integrity and openness even when they are themselves wrung out, afraid or cowed by the system within which they work.
Ethics is often represented as concerning ‘dilemmas’ or momentous decisions. It is rarely so. More often, it is a series of small everyday choices and incremental decisions about how to behave that may not even be conscious. This is as much the stuff of the ‘ethics of end of life’ as debate about assisted dying or the negotiation of advance decisions.
My father taught me that.
Deborah Bowman is Professor of Bioethics, Clinical Ethics and Medical Law at St George’s, University of London