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Switching off gran

By: Michael Rennie
The Guardian, April, 12, 2001

Doctors think it is their right to decide when to stop treatment. So do patients and their families.

Last year, a 67-year-old patient from Southampton discovered after leaving hospital that a junior doctor had written a do not resuscitate (DNR) order for her without consulting her or her husband. Age Concern claimed to know of more than 100 similar cases that it promised to bring to the attention of Alan Milburn, the health secretary. 

At its annual conference, the British Medical Association resolved that junior doctors should not be coerced into signing DNR orders. It called upon its own ethics committee to consider whether doctors should be obliged to get prior written consent from patients and families before writing such orders. The Department of Health has since written to chief executives of all NHS trusts, instructing them to make sure that agreed resuscitation policies not only have patients' rights at their heart but are readily available to patients and their families.

The sadly often well-founded perception by patients that doctors are paternalist and authoritarian has been fanned by the media, and was worsened by Mr Milburn's willingness to lay blame for the recent Alder Hey affair indiscriminatingly at the feet of the medical profession. 

In these circumstances, the instructions concerning treatment for the terminally ill would, if instituted, be astonishingly good examples of best practice in the open, patient-oriented NHS New Labour tell us they are determined to deliver.

Oddly, no explicit deadline for implementation was given. For a policy with such important consequences for clinical care, and of such avid interest to patients, their relatives and the media, this is surprising. Most of the obligations the Mr Milburn placed upon chief executives are sensible. They should allow difficult decisions to be made more easily and more acceptably to those they affect.

However, making the policies on resuscitation and other critical treatments readily available to patients and their families is likely to have a major impact upon decisions to withhold and withdraw treatment from terminally ill patients, which may not necessarily be in their best interests. In Britain, as elsewhere in Europe, medical paternalism is being beaten back by health care professionals with much more open, flexible and humane attitudes than their predecessors.

Nevertheless, unlike in the US where most doctors accept the primacy of patient autonomy and the overriding will of the family in life or death decisions, doctors in Britain have traditionally regarded decisions concerning whether to resuscitate as their primary responsibility, even their right. In this they are probably very similar to Swedish doctors, two-thirds of whom wished to make decisions concerning, for example, continuation of ventilation, without reference to the families of patients who were incapable of deciding on their own behalf. Such attitudes and practices are unlikely to survive pressure from patients and their families once the text of any policy is made accessible to them. Some patients and their relatives will simply not accept the professional right of doctors to make important medical decisions, as has been amply illustrated by the substantial number of parents who refuse to accept conventional medical opinion on the safety and efficacy of the MMR vaccine for their children.

Once policies become transparent, the wishes of the families will inevitably assume much more importance. If patients are not competent, major difficulties will arise when families disagree with the decisions of doctors. Advance directives (so-called living wills) will not necessarily solve the problem.

Very often, as is shown by experience in the US, there are conflicts between what the patient says should happen and what the decision turns out to be. Also, even when patients participate in decisions concerning themselves and are sanguine at the time of the discussion, within a week up to a third may have become substantially distressed and wish to change their minds. Under the new Human Rights Act, the right to life is fundamental.

It may not be sufficient for doctors to argue that resuscitation should be denied where there was, say, only a 20% chance of intervention resulting in a patient's recovery to a satisfactory state of existence. It may be possible to argue that the only justification for withdrawing a treatment would be absolute certainty of its futility.

The European court has been silent on this matter, presumably because it will be so difficult to resolve. In the current circumstances of near paranoia about hospitals and doctors, and as the expectations of patients increase inexorably, the formulation and implementation of rational, humane, practical and acceptable resuscitation policies will be extraordinarily difficult. 

Michael Rennie is professor of physiology at Dundee University