Discussing Death with the Dying

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It is not easy to be prescriptive about this; everything depends on the nature and quality of your relationship with the person who is approaching death. What is right and fitting in one context would be a serious error of judgement in another.

That said, the one key guide is to wait for the person concerned to indicate - sometimes in quite an indirect and roundabout kind of way - that they are ready for this conversation. Sometimes they will ask outright: “Am I dying?”. More often it will be more indirect: “Who’s going to look after my cat when I’m gone?” or “I doubt whether I’ll live to go to Eastbourne with the Ellis’s as I had planned.”.

What do they want to hear you say? You must judge that for yourself, drawing on the knowledge you have of them, their beliefs, their fears, their personal journey. In my experience, most often they want reassurance on three essential points: that they are not going to be in terrible pain; that they are not going to be left alone in their last hours; that they are not going to face some hanging judge on the other side of the grave. Let's look at each of those.

Pain control

In theory, with very few exceptions, no one should die in pain if they have access to modern health care. The control of terminal pain has improved hugely in the last twenty years though it is still true that it is far better in most hospices - where there are often doctors with highly specialised training in the area - than it is in the average NHS hospital; and it is better there than it is if left to the GP and the District Nurse. This is sad in the light of the fact that most people approaching death are very clear that they want to die at home, where they are least likely to have a pain-free passing. That is increasingly widely recognised and it is now common for GPs to entrust powerful pain-control medication to whatever responsible adult has most frequent care of the patient., with instructions to “give it as it is needed,” Those who are unhappy about that will usually ensure a District Nurse can call sufficiently frequently to keep pain at bay.

To that extent, the first question can be answered encouragingly and honestly. “The professionals will not allow you to suffer pain in your last days.” But what can you say if you know that, however good their intentions, the fact is that the professionals are under such pressure that no one can guarantee that medication will actually be administered according to need? I suggest all you can honestly say then is that they will try; they will do their best; they see the need. If you find you cannot say that honestly, then you need to be on to the local Commissioning Group to ask what they are doing about it. And then your MP. For in that case the NHS is failing in one of its fundamental purposes. It may be a Health service, but that includes pain-control and especially terminal pain control.

Loneliness.

The second question is more difficult and is clearly heavily dependent on individual circumstances. In an ideal world no one should be left to die alone (unless they have expressed a preference for that). A comforting hand can make a huge difference. Even in hospital, that cannot be taken for granted. Here are two contrasting vignettes from my own experience. A male cancer patient clearly nearing death, is hugged by a trainee nurse, who gently calls his name and assures him he is “Alright, my duck.” My sister dies of cancer; the nurse allocated to her could not attend “Because I had to be at Hand-over.” (Luckily, I arrived on the ward just in time to be with her in her last moments.)

Obviously, a close friend or family member is likely to be more helpful at this point than even a skilled professional. Ideally it should be possible to arrange a rota so that the dying patient is never alone (nor feels intruded upon.) Sometimes a friendly presence is enough - without words or touch. It is important to remember, however, that hearing is the last faculty to shut down, so even if the patient is unresponsive, s/he may be able to hear what you say. So words of encouragement and appreciation can be very helpful. (So can reassurance about the future of immediate family or pets. Eg “Mum will be well looked after, Dad. We will take it in turns to see her each day, I promise”. “Fido will come to us. The children love him so I am sure he will settle in very soon.”)

Death is notoriously fickle - which is why doctors are very unwilling to tell you “how long she’s got”. This can make ensuring there is always some family member on hand almost impossible. It may be sustainable for a day or three, but most of us have other commitments that cannot be neglected for long. If it becomes more prolonged than you had expected, try to communicate to the patient when someone will be coming. The basic fear is that they will be left alone. If they know that Fanny will come at tea time and Bill tomorrow morning, that is often reassurance enough. If it happens - as inevitably it sometimes does - that the patient does in fact die alone, try to avoid feeling guilty about it. “If only I had gone….” That does not help the deceased - and it certainly does not help you.

Judgement.

Now, third; fear of the hanging judge. I believe this is less common than it once was, but it remains a buried anxiety, sometimes only to emerge in the last hours of a life. How you dispel it with integrity is for you to decide. Personally, apart from my own Christian faith, I find the accumulated evidence of people who have suffered “near-death experiences” gives firm empirical support to the view that we have nothing to fear about the immediate sequelae of death. Details vary enormously, of course; but I can remember no account that even mentions being judged or blamed or held to account. You would not want to rehearse all that evidence to the dying patient, of course; but you might want to allude to it obliquely: “Don’t worry, Mum. No one is going to blame you for anything. It isn’t like that…You’ll be welcomed with open arms.”

Alcohol.

Unfortunately, my own experiences oblige me to mention something I would have preferred to omit. Many people find these last days/hours of a loved one almost unbearable. They resort to the one analgesic they know will work - the bottle. I have been at bedsides where, for example, an only son has been draped across the bed of his dying father fast asleep and reeking of whisky. That may be extreme, but the issue is more common than is comfortable to admit. It puts you, as a close family member offering support to the dying relation, in a very difficult position. In hospital you can have a quiet word to a senior nurse and, hopefully, she will take the inebriate to a side room and give him some black coffee to sober him up. At home, if there are just one or two other mourners, it can be more difficult. Perhaps the best you can do is to transfer the drunk into a chair in a corner and leave him (only rarely her) to sleep it off. The dying patient may or may not be aware of what is going on. I remember one father, with only minutes left, looking his son up and down, smiling and saying, without rancour, ”Typical”. Perhaps that is the best you can hope for.

Reconciliation

A final thought. Is this the time to reconcile the so-far-irreconcilable? My own experience is mixed. For some, it has been a deeply healing, life-deepening experience. For others it has been deeply upsetting, even offensive, to both parties. Obviously, you need the permission, even encouragement from the patient to even try it. Springing it on them as a surprise is unkind and untruthful. It is for you to judge how much enthusiasm the patient is bringing to it; the less enthusiasm, the less sensible it is to proceed. It is always a risk - but it can prove a risk infinitely worth taking (especially for the mourners for whom it can be a real source of solace. “Well, at least she made it up with Alice - after all these years of bitterness. That’s a blessing.”)