Books

On lying and dying

Elisabeth Whipp

The Hospice Movement Sandol Stoddard (Cape £5.95) Lying Sisela Bok (Harvester £6.50) Doctors on Trial John S. Bradshaw (Wildwood £5.95) We all fear death, as children fear to go in the dark. One of the most frightening powers of modern medicine is the ability to prolong life. This lengthening of days has made no significant difference to the survival statistics of the over-forty age group since the beginning of the century, but, with aggressive intervention, we can officiously keep alive for a few weeks even those suffering from the most miserable illnesses.

I learnt early in my medical career that dying was not only frightening, but dehumanising. No longer is it a matter of quiet decline in the familiar bedroom, with straw thoughtfully strewn on the street: it is being disposed of in some institution, long before the symptoms become embarrassing, with the period of dependency and slow deterioration almost unimaginably extended. Tubes, wires, monitors and pacers record the failing functions. In many hospitals the 'terminals' are still shunted to one end of the ward, where no ward round ever penetrates. There it is hoped that these embarrassing lumps of still living flesh will, as quietly and unobtrusively as possible, expire without further troubling our consciences. Relief of pain is patchy, injections of opiates reserved for the times when they scream too loudly. Only a few years ago nobody, except junior nurses and the padre perhaps, wanted to talk to these caricatures of the once living. We were not taught any remedy for the other less vocal symptoms: the silent chokings and stranglings or, less frightening but often as horrible, the itchings and smelly sores. To pass finals, we were not expected to have a working knowledge of even simple analgesia — but would have failed if unable to maintain a blood sugar or blood pressure just so.

It is not surprising that I agonised over the ethics of euthanasia, although I knew it to be illegal. There was also the awful task of telling relatives, and sometimes the patients themselves, that there was no hope of recovery, that the disease was moving implacably forward, and that there was nothing more we could do. This goes against all medical training. Medicine is a doing business, and defeat is not on the syllabus.

It tvas from the work done in hospices that many of us cancer specialists discovered that the decision that there is no more to be done means not the withdrawal of treatment but the application of active and therefore doing principles to the patient. Difficult as it is for the natural sceptic to absorb the hospice's combination of spirituality and hard medicine, there is no doubt that, whether in the daily care of Hindoo, Catholic, Protestant or agnostic, their methods work. Pain can be relieved, anxiety and misery reduced.

Sandol Stoddard's book, engagingly subtitled A Better Way of Caring for the Dying, is not, thank Aesclepius, another American D-I-Y book, but an account, if slightly p0-faced, of the movement which started in London less than twenty years -ago. Not only do the hospice people study and almost always ameliorate most of the more awful symptoms and stresses of those who are dying, but they engender a real trust. This extends to the family and friends of the patient and reduces those hideous family estrangements resulting from the frequent lying and hiding.

Tolstoy, in The Death of Ivan Illych, described the misery: 'This deception tor tured him — their not wishing to admit that they all knew and what he knew, but wanting to lie to him concerning his terrible condition, and wishing and forcing him to participate in that lie. Those lies — lies enacted over him on the eve of his death and destined to degrade this awful solemn act to the level of their visitings, their curtains, their sturgeon for dinner — were a terrible agony for Ivan Illych.'

Things are gradually changing and, over the last few years, more and more patients are being let into the secret of what most of them already suspected or guessed. Interestingly, most patients had much more dreadful imaginings of the business of dying than we ever dreamt of. Most envisaged a screaming horror, choking slowly in pools of blood. Yet it is now rather a slow, quiet separation from the world. With good symptom control, it is rare to have any panic, and the actual moment of death is so quiet as to be almost unrecordable.

Many people still regard the removal of the sting from death's tail as an unwar ranted meddling with the serene nature of a neat literary death — the sort Shakespeare and Dickens so lovingly detailed. In older societies, death is more frequently observed and less hidden, the anxieties therefore more acceptable. A hospice almost always has a strong Christian basis, and most of the workers agree that 'a caring community is necessarily religious'. The pioneers concentrated on simple means to relieve common symptoms. They found that mental torment, although partly relieved by drugs, was best dealt with by simple day-to-day talking. Sometimes the tea lady was found to be the best therapist. Though embarrassingly pi in places — 'working beautifully with her own grief' is only one of the lesser infelicities — Sandol Stoddard has written a fair account of the hospice venture, and one that should help alleviate the terror most of us feel about our final quietus.

Lying, of course, is not confined to the dying. Sissela Boltis a philosopher who works with the Harvard and MIT medical groups and so has a particularly sharp nose for the frequent deceptions practised by the medical profession, but she also applies herself to politicians, lawyers and other highly mendacious professional groups.

The Hippocratic Oath is strong on confidentiality and protecting one's colleagues, but not a whiff of what the patient deserves to know. Bok has examined many other medical oaths, but could only come up with one sixteenth-century practitioner who ever made it part of his practice to tell the truth to his patients. Medical lying, Bok feels, comes under the same umbrella as the most sinister form of deception — the paternalistic variety.

'And deception may well have outranked force as a means of subjection: duping people to confirm, to embrace ideologies and cults — never more zealously perpetrated than by those who believe that the welfare of the deceived is at issue.'

Lying is an elegant book, provoking and revealing. In the third book under review, Dr Bradshaw has also attempted, though less successfully, to shake complacency. Striving for the dramatic, he sets his data within an imaginary Court of Inquiry. As Ivan Illich (no relation) points out in his rather testy introduction, there is not much information here that was not included in Illich's own Medical Nemesis, published in 1976. The facts are staggering, and perhaps more accessible in Dr Bradshaw's book. But, in going for the mid-Atlantic market, the irritations of court-room style and clumsy thumb-nail sketches of stock med ical characters become intrusive. Surely Sir Guy Chumley is mis-spelt? And who would believe in the lovely Professor Gloria Dible?

After a ponderous summing up, the Judge proffers a not very compelling vision of how revolution must take place in Western Medicine. He finds doctors, on all counts, Guilty, in that they cause more ill-health than otherwise. This he finds inextricably mixed up with the fact that Lord Nuffield made motor cars.

A new religion must be sought, he advises. 'Youth may find such a religion; its parents hardly. The alternative is that the ill-health of our present society, its terrible cancerous disease, will prove mortal to it, and to us and to our children; and will ensure that our children's children shall never be born.' Probably as well. Even without the devilish meddlings of western medicine, all the ills to which flesh is heir are thus quite neatly avoided — at least for him. The rest of us will just have to go on coping with them until the Revo comes.