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Deciding When to Die
Who should have the power to end or prolong a life? What ethical choices lie behind such power? What role does a patient have? Averil Stedeford, retired GP and experienced hospice care worker, challenges us to think again about these and other ethical dilemmas.
It used to be thought that the timing of birth and death was in the hands of God and could not be altered. Now doctors have some control over when and how a fatally ill person may die and this new power brings with it new problems. Attitudes range from the belief that life should be preserved at all costs, however much suffering is involved, to the advocacy of euthanasia. The ethical issues could confront any of us, as I discovered while I stayed close to a friend through her last illness.
'Mary,' was suffering from Iymphoma. A first course of chemotherapy had given her an excellent remission, but when the disease recurred it became clear that her body could not cope with such an assault again. On the day the decision was made to switch to palliative care, she sent for me. After we had shared our grief, she began to plan a party, which was clearly intended to be a celebration and a farewell. Two months later this took place, bringing together her family, most of whom live abroad, and her many friends. Her illness made her anaemic and she was given several transfusions to keep her going. More blood two days before the party gave her the boost she needed, and left us all with a happy memory of her enjoying the occasion. Afterwards, her relatives dispersed, leaving a sister to care for her. Most of her affairs were in order. She completed her funeral arrangements and began to live in one room in her home, in a limbo of waiting.
'Nothing went right from then on' she told me much later. I thought so too, but because I was neither a member of her medical team nor a relative I could not intervene unless she asked me to, which did not happen until two days before her death. Repeatedly she became weak and breathless from anaemia and was transfused. A tumour enlarged and she grew impatient with her treatment and suffering. She said she tried to tell her consultant that death from anaemia would be preferable to the state she was in, and that she saw no point in transfusions now that the benefit was so brief. Her sister, most reluctantly, had to leave her. Then she had a major haemorrhage into her bowel while she was alone at home. This brought her very close to death and I thought 'Surely they will let her go now!' However she was given five pints of blood, and kept in to await a vacancy in the local hospice. Ten days later she died.
|It had been nine weeks since her party. Without any more transfusions,
she could have died within two or three weeks, comfortable and with some of her family
present. Why did she and they have to suffer so much for so long? With their agreement,
I met her consultant. He greeted me with 'We failed her. She died.' 'Mary' appreciated
the good remission she had, and I know she would not have agreed with him in the
sense in which he was defining failure. But he had failed to listen and understand
when she tried to tell him she was ready and wanting to die. In addition he believed
that no patient should be allowed to die of anaemia. As a doctor, I felt this should
be challenged, and did so in an article in the British Medical Journal 1
There I wrote that someone like 'Mary', who understood her illness well, should be encouraged to take the lead in managing her own death, and should be able to trust her medical team to co-operate with her as far as is medically and ethically possible. Of course this does happen already for some people, especially cancer patients, and it is becoming more common as the philosophy of the hospices spreads through our healing professions. But there is a long way to go, as 'Mary's' case illustrates.
There are other attitudes to death which I want to challenge. Do we, for instance, over-value putting up a great fight against illness? I came to know a young woman who was near to death, but determined to carry on with chemotherapy although it was causing her much suffering and the chance of success had become almost nil. She felt she had always tried very hard at everything she did, e.g. at school, and she would be letting her parents down if she agreed to stop (which was what she wanted to do.) Her parents wanted her to stop too, but dared not tell her so. They were afraid she would misunderstand and would think they wanted her to die because they could not cope with her illness any longer. The relief was almost joyful when both parties discovered that they wanted the same thing. The staff were glad to stop the chemotherapy and she was soon strong enough to go home for a few precious days before she died.
A woman in an old people's home had one illness atter another. Recovery was slower with each episode and she also began to get confused. Knowing her life history, I said to her 'You have been a great fighter all your life. You don't have to go on fighting if you don't want to. It would be alright to let go and join Bill (her husband). God will understand'. She was so ill that I was uncertain whether she heard or understood, but she seemed peaceful when I left her. I expected her to die within the next few days, but she got better! Friends said she had become almost her old self again. Weeks later, a member of staff came to collect her dinner tray and bring her coffee. She had finished her meal and was dead in her chair. I think this reminds us that a person can be made whole and then die.
So far I have discussed the deaths of people like ourselves who are relatively well cared for and usually have someone to speak for them if necessary. There is much that can be done to make our dying easier, and I have addressed this in my book Facing Death2. Here I would just like to remind readers that dying is meant to be the finale of a life, and it may be God's gift to end suffering. It is as natural as giving birth. When it proceeds smoothly, it can often take place at home where familiar surroundings, and especially the presence of a loved person, contribute to its peaceful progress. We should strive for this to be the case more often.
The Iona Community is especially concerned for those who have no one to speak for them, whose life and death is managed by strangers. Consider, for instance, the elderly person who says to anyone who will listen 'I never want to be put in a home. I want to die in my own house'. When she is found unconscious and hypothermic on her floor, she will be taken to hospital, resuscitated, found to be no longer able to cope alone, and the very thing she dreaded will happen. Is this inevitable? Couldn't she be left to die in her house, watched over by people who knew that was her wish, and monitored by the local general practice? Could those involved cope with the inevitable charge of negligence?
Or take the seriously deteriorated alcoholic, with whom many attempts at rehabilitation have failed. Everyone says 'Drink will be the death of him'. When liver damage takes him to the brink, he will be admitted to hospital and treated very expensively in an acute ward until he is able to leave, only to return within weeks. In his most sane moments, is this what he would have wanted?
There are other important questions. Who should make decisions about how much effort should be put into preserving any life, young or old, that is threatened? What about the practice of writing 'Not for resuscitation' in case notes'? Sometimes this is done without the knowledge of the patient or relatives. What about discrimination related to age'? Is it a misuse of scarce resources to prevent the death of the recluse and the alcoholic described above? If it is wasteful, and particularly if it delays the treatment of a waiting-list patient whose life might be saved, is it also wrong? Hospital staff and chaplains, relatives and those who give care in the community, often watch such events helplessly and feel there must be a better way. We must join with others in trying to find it.
1 Stedeford. A, Personal View, British Medical Journal, 2001, 323:56
2 Stedeford, A, Facing Death: Patients, Families and Professionals 2nd ed. 1994 Sobell Publications, Oxford International Centre for Palliative Care. The Churchill Hospital, Oxford OX3 7LJ St£8.00 +St£ I .S0 p&p.
Also informative: The Natural Death Handbook £12.95 (cheque ) £13.50 (card) from the Natural Death Centre. 20 Heber Road. London NW2
Averil Stedeford was in General Practice while her children were young. She then trained as a psychiatrist and psychotherapist and worked in the Oxford Hospice for twelve years, caring for patients and families, supporting staff and teaching. She has been retired for 13 years.
First published in Coracle, the magazine of the Iona Community, September 2001. For further information contact <email@example.com>. Website: www.iona.org.uk
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