Should you write a living will?

Have we lost the ars moriendi - the art of dying? Deborah Jackson examines the issues to be raised in a medical-legal seminar tomorrow, while Celia Haddon tells of the problems surrounding the death of her mother, who wished to die in ignorance of her cancer
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A man aged 61 was close to death. He had suffered a major stroke and had deteriorated through the night. In the morning, two nurses arrived at his bed to give him physiotherapy. His family, certain that death was near, pleaded with them not to move him. They insisted it was a necessary part of his programme of care. Only after an appeal to the house doctor did they agree that he was too ill to be taken from his bed for manipulation and exercises. He died within two hours.

A year later, an elderly man lay in another hospital ward, exhausted and uncommunicating in the final stages of Alzheimer's disease. He was peaceful and ready for death. For some days, he had refused to eat. In the end, the nursing staff, who had been diligent in their task of keeping him comfortable and alive, allowed him to die.

These men were my father and my grandfather. Neither had indicated how they wished to die.

Death has been high in the British consciousness for some months, with reports that mourners are not given enough privacy and the very public death of a Dutchman by euthanasia on television. In a world where death is concealed and sanitised in hospitals, we have lost the ancient ars moriendi, the art of dying.

Tomorrow, the British Medical Association will announce new guidelines to health professionals on drawing up "living wills", advance statements by patients on their treatment before death. After years of discussion, the BMA has finally reached agreement with the Law Commission that such statements should be legally binding.

The move has been welcomed by the Voluntary Euthanasia Society, Exit. But some people are deeply disturbed by what they call "creeping euthanasia". Life, an anti-euthanasia pressure group, argues that the BMA's guidelines will create new fears for patients and "corrupt the medical profession, turning doctors into dispatchers".

The BMA steering group on advance statements believes that they are needed to protect health professionals as well as to allow patients to express their wishes in the event of incapacity.

"We have been in favour of patients making advance statements for a long time," says a spokesman. "We feel it helps those caring for the patient, doctors, nurses and counsellors. People will be able to say exactly what they would like to see happen to them at the end of their lives, or at a time when they have lost the capacity to make decisions for themselves.

"Instead of doctors hoping they are doing what the patient would want, they will be able to refer to an advance statement. Our only problem up to now has been a doctor's right to conscientious objection if he is asked to do something he does not believe in. In such cases, the doctor will be duty bound to refer that patient to someone else."

Exit has campaigned for living wills since the Seventies, when the idea was first proposed by an American lawyer. They offer members a standard form, or "advance directive", while the BMA prefers the less combative phrase "advance statement".

But advance statements need not only request a graceful death. They could equally be used to express the desire that life be sustained at all costs, or that painkillers should not be used if they would shorten life. Other requests might include the desire to stay at home, or for certain people to be kept from the deathbed.

"We are delighted. This is really good news for our members and others," says Meredith MacArdle, of Exit. "For a long time, the BMA preferred to operate judicious medical paternalism. But many people believe it is important that their final wishes should be respected.

"One of the big concerns doctors had was that they didn't know what the law was and that they could be charged with negligence. We accept that this is a partnership between patient and healthcare team. We advise people to discuss their directive with their doctor."

The BMA also reminds us that some requests will not be legally binding. They say it is meaningless, for instance, to ask for life support to be turned off in the event of injury, because "life support" cannot be easily defined. Nor are doctors allowed to hasten death. But it is just this kind of difficult distinction which worries the Life group.

"The BMA are betraying the high principles of the medical profession," says Jack Scarisbrook, chairman of Life. "There is no need for advance directives to protect doctors - this is BMA euthanasia-speak.

"There is no problem with the law as it stands, for giving drugs for the alleviation of pain if the intention is to relieve pain. If the intention is to procure death, that is quite different. It is the intention that matters.

"There is now no pain that cannot be brought under control. We should be rejoicing in the hospice movement, which makes advance directives quite unnecessary. The pressure for creeping euthanasia is extraordinary and quite relentless."

Most people hope to pass on in their sleep, but this is not the way the average person dies. For many, death does not come with dignity, and when, or how, we choose. It may certainly comfort some, and help our carers, if we can prepare living wills while we are still well enough to mind what happens to us. At the very least, it's time we talked about it.

Final wishes: an `advance directive'

To my family, my physician and all other persons concerned, this directive is made by me (name) at a time when I am of sound mind and after careful consideration. I declare that if at any time the following circumstances exist, namely:

(1) I suffer from one or more of the conditions mentioned in the schedule; and (2) I have become unable to participate effectively in decisions about my medical care; and (3) two independent physicians are of the opinion that I am unlikely to recover; my directions are as follows:

1. that I am not to be subjected to any medical intervention or treatment aimed at prolonging or sustaining my life

2. that any distressing symptoms are to be fully controlled by appropriate analgesic even though that treatment may shorten my life.

SCHEDULE

A Advanced disseminated malignant disease

B Severe immune deficiency

C Advanced degenerative disease of the nervous system

D Severe and lasting brain damage

E Senile or pre-senile dementia

F Any other condition of comparable gravity

Signed .............................

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