BLOG: The end of the story?

In the final of a series of articles on our care, Dr Jeffrey Stephenson, consultant in palliative medicine and medical director, explores what makes a good death.

So what makes a good death? In hospice care we certainly have an idea in mind of what a good death looks like: peaceful; in bed; pain and other symptoms controlled; loved ones by the bedside, or at least with that option; relationships restored; affairs in order; closure on the important issues that have arisen. That may not be everyone’s ideal. Some may wish to go out fighting, never accepting the affront of death, ‘raging against the dying of the light’ (Dylan Thomas).

For most people a good death involves being comfortable with symptoms controlled, being with loved ones, and retaining some sense of control and independence for as long as possible. Place of death is often less of a priority than one might expect, given the recent emphasis on achieving preferred place of death. Although many patients express a wish to die at home, this may change as they get nearer the end and the priority becomes feeling safe and not a burden to loved ones.

The top priority for most, being comfortable and pain free, is entirely achievable for almost all, provided there is access to the appropriate medication and staff who understand how to use it safely and effectively. And as a last resort we can sedate the patient for those last hours or days until death. Sadly, we have still not consistently achieved this for all patients dying in any setting, and therein lies the ongoing challenge of service planning and education.

For some people a good death would involve control over the timing and manner of their dying through assisted suicide. Sometimes this is driven by a fear of a difficult death, or a desire to avoid gradual deterioration and increasing dependence with implications on perceptions of dignity. One might suggest that if hospices are genuinely concerned with promoting choice and dignity in dying then assisted suicide should be something they would support. There are certainly strong and valid arguments on both sides of the debate. At the moment assisted suicide remains illegal, and hospices are not in the business of deliberately hastening people’s deaths by any means.

Personally, I am against a change in the law to allow it in any form. While sympathetic and concerned for the distress of individual patients who want it, as a doctor I also have a duty to the wider community, and I am more concerned about the implications for the much larger majority of vulnerable patients who would never otherwise consider it. I believe that, whatever safeguards were put in place, there would be an inevitable slide down a slippery slope, and I am not reassured by the flawed experience of other places that allow it. I do not see how one can prevent a right to die becoming a duty to die in the minds of vulnerable, often elderly patients.

We do not need assisted suicide to give people a comfortable and dignified death. There is of course much that we can’t control as we deteriorate gradually from a chronic illness. But for those of us who have the privilege of being able to prepare for our deaths there are some things we can control. We can set out what we do and don’t want to happen to us as we get more poorly, through wills and advance care planning. We can talk to loved ones and professionals about what is important to us, and appropriate support and medication can be put in place. And we can get our affairs in order, say the things we want to say, reconcile with those who have drifted away for whatever reason.

We can finish well. Our story can end well. And in fact our story needn’t end with our death if our legacy lives on in the lives of those we have touched, whether family, or friends, or strangers who for a brief time joined us in our journey and helped us write the last chapter. St Luke’s is committed to achieving that for as many people as possible, for our whole community. A community where every dying person can feel connected and no person has to die alone. A community where everyone can achieve a peaceful and comfortable death that is free from pain and distress.

“You matter because you are you, and you matter to the end of your life. We will do all we can to help you die peacefully, but also to live until you die” (Cicely Saunders).