Personal views: Deserted
Authors: Thurstan Brewin
Journal: BMJ (2001)

When a patient is dying at home—for example, from a cancer that has turned out to be incurable—it makes a big difference in my experience if the family doctor continues to call regularly, say once a week, rather than just waiting to be called out in a crisis. Otherwise, patients and relatives are liable to feel abandoned and deserted when they least expect it.


I saw this when working with the Ontario Cancer Foundation 40 years ago, then in Scotland as a clinical oncologist in the NHS, then while visiting Marie Curie Cancer Care centres all over the United Kingdom. Everywhere it was the same story. Some general practitioners continued to visit regularly and gave great support. Some visited only occasionally—often stiffly, awkwardly, and with no promise to call again. Many never visited. Both nurses and relatives would have liked a regular friendly weekly call, but it never came. 


Patients dying of heart failure have a better chance of being visited than those with cancer



My impression is that little has changed. Recently two friends of mine were each offered counselling by their general practitioners when their husbands died, but they had had no support when they most needed it. They were surprised and disappointed, as they liked their doctors and had previously found them helpful and understanding.

It seems that though many doctors accept visiting the dying and their relatives as part of their job, many others do not. Either they fail to understand the value of it, or they dread it so much that they find reasons for not doing it. This seems especially so if the cause is cancer. Patients dying of heart failure have a better chance of being visited.

The promise of a regular visit gives a special kind of support unlike any other. An invitation to contact the surgery if necessary is not the same. At each visit there needs to be a quick review of each symptom. Could there be a physical cause for it other than the leading condition? Could some needless fear be a factor? Could it be a side effect? Furthermore, it often helps—after more professional matters have been dealt with—to have a relaxed word, perhaps over a cup of coffee, about things that patient and relative have experienced or achieved in their lives. What have been their best moments? And their worst? Keep an eye open for family photos. Don't ask me why, but a little reminiscing takes some of the edge off fear and tragedy.

Another part of being natural and friendly (with patient or relative, separately or together) is to have a quick word about the football results, the weather, or the latest scandal in the headlines. Nothing could be worse than this if it's the last thing the patient is fit for, or is in the mood for. But at the right time it can reduce tension wonderfully.

It's the same in hospital. The idea that such small talk—perhaps spiced with humour —is somehow insincere or in bad taste when people are dying could not be more wrong. They are not dead yet and should not be treated as if they are. They deserve as much friendly respect as they did when they were well. They may still be watching a little television and may have an opinion on it. They may even be able to help others—perhaps the doctor—with advice of some kind.

Nothing must stand in the way of serious listening and frank explaining whenever needed, but it is clumsy to keep asking patients directly if they want this. It is better to sense when they do and when they do not, as good friends do.

Can busy general practitioners find the time? Broadly speaking, yes, because they are unlikely to have more than two or three patients in this position at any one time. Moreover, the essential concept—that the doctor (or at least the practice) will stay firmly with the patient and relative at their time of need and not desert them—can still be preserved if now and then the weekly visit is replaced by no more than a phone call. Always, if possible, having a word with the patient, not just with the relative.

Those of us who have never had too much difficulty with this scenario, whether in hospital or in the home, should not be pleased with ourselves but just be thankful. Meanwhile, the profession must face the fact that, however invidious and uncomfortable it is to discuss differences of this kind, many doctors find visiting the dying very hard. Medical schools could do more. The message needs further reinforcement at postgraduate level.

And if young doctors who hate the thought of such visits will do as many as possible—and do them in a friendly, positive, and interested way—they will soon learn how much difference it makes both to patients and to their relatives and with luck will gain confidence. In medicine much has changed but I doubt if the importance of this has. Or ever will.