Michael Lowe,
tutor in clinical ethics,
John Hunter Hospital,
Locked Bag No 1,
Newcastle,
New South Wales,
Australia

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Respect for patients' autonomy is a fundamental part of good clinical practice and is reflected in the use of formal policies for informed consent.1 However, patients may not be competent to make decisions when choices about life sustaining resuscitation need to be made, and thus doctors may be involved in the process of making decisions for incompetent patients. It is important to approach this correctly so that optimal care can be guaranteed especially where there is conflict between family members, or with medical staff.

There are three approaches to making decisions for incompetent patients: consideration of their best interests; consideration of what the patient would wish to do in the circumstance if they were competent (substituted judgment); and consideration of any previously expressed wishes (a living will or advance directive: see fig 1). Criteria based on the principle of "best interests" are often considered the least justifiable in making decisions for incompetent patients, and advance directives the most reliable.2 We explore these concepts in detail so that junior medical staff can develop a coherent approach to making decisions for incompetent patients.

Best interests
Decisions about medical care for patients who have never been competent, such as children with learning difficulties, are generally made on the basis of what is perceived to be in their best interests. Views about what constitutes an individual's best interests may differ, and in some cases this concept may not apply. Conflict over the appropriateness of care is not uncommon, particularly where decisions are being made for children--for example, blood transfusions for Jehovah's Witnesses. Parents may refuse to allow their child to have a blood transfusion on religious grounds whereas medical opinion might be that a transfusion could save the child's life. In such instances the courts will usually uphold the medical viewpoint.

Case study Paul is a 26 year old man who was brought to the emergency room with severe head injuries after falling from scaffolding. He was intubated and ventilated at the work site and was diagnosed as having brain stem death soon after admission to hospital. In discussions with his girlfriend it was clear that he had talked about transplantation on several occasions and had said that he would like to be an organ donor. His parents, on the other hand, were horrified at the idea believing that this would constitute "mutilation" of his body.

Best interests standards are even more problematic when making decisions for incompetent adults. For instance, in a study where people were asked to imagine themselves as being an incompetent patient with a poor prognosis, around 70% said they did not want life sustaining treatment. Unfortunately, the choices that patients would make cannot be predicted by health, functional status, age, or other demographic features, and doctors are poor judges of patients' preferences.3 Given such a circumstance it is clearly difficult to decide what is in a patient's best interests.

Substituted judgments
In an effort to overcome some of the problems raised, and to counter the perceived paternalism of "best interests" criteria, substituted judgments have been proposed. Proxy decision makers, often close family members, attempt to reach the decision that they believe the patient would reach if he or she were competent. This is based on a personal knowledge of the patient's values and beliefs rather than on what they believe to be in the patient's best interests.4

It is generally accepted that this approach is ethically more desirable than using the "best interests" standard, and that proxies should be guided towards this approach when making decisions for incompetent patients. Although the concept of "substituted judgment" attracts wide support, studies suggest that there are many practical problems.

For instance, while research in the United States showed that between 16% and 70% of patients have discussed end of life decisions with their family or other potential proxies, these discussions were often vague and did not include specific treatment options.5 There may also be a disparity of views between patients and their proxies--studies show that agreement is reached in 50% to 90% of cases.6 7 It seems reasonable to conclude that if proxy decision makers are unable to recall direct and specific discussions with the patient about proposed treatments, their substituted judgments may not accurately reflect the patient's wishes.

For advance directives to offer the greatest benefits: The forms must be carefully drafted and validated They should be discussed with doctors Individuals should carry a copy A copy should be recorded in the medical notes They should include both general and specific considerations They should be periodically reviewed They should be discussed with proxies Patients must be competent when they are written Advance directives should only be activated when the patient is incompetent

Some authors suggest that the accuracy of substituted judgments is impossible to verify or is fundamentally unsound and that we should return to altruistic judgments based on our perceptions of a patient's best interests. Ramsey states: "Let's be candid about this: some of those dying may have wishes still to struggle and live on for a while longer, for a variety of reasons. If they could tell us so, their wish should be honoured and supported. If not, there is no reason for courts, physicians, or families to get bogged down in surmising what patients would wish if competent, or to pretend that sound medical decisions to discontinue treatment are correct because the patient would have said so if he could. All that we can say, within the fallible, finite, human community of medical care, is that we have done the best that we objectively know to do, namely, to cease treatment when, and only when, to continue would only prolong the dying of the dying."8

Advance directives
The use of advance directives such as living wills and durable powers of attorney for health care are formal attempts to involve competent patients in decision making should they become incompetent in the future. A living will is a legal document in which a competent person sets out their healthcare preferences and specifies a limited range of instructions for care before incapacity occurs. A durable power of attorney for health care allows people to appoint another person as their agent to make all healthcare decisions after they have become incapacitated. Informal, oral advance directives, such as statements made to family or a doctor, have always been an integral part of medical practice but as noted earlier these are often vague and non-specific.

There is widespread professional and public endorsement of advance directives.10 Patients often fear that they will become prisoners of technology--subjected to life saving technologies that are unwanted and of questionable benefit. Indeed research suggests that proxies for patients are more likely to favour life sustaining interventions than patients themselves and that doctors recommend more aggressive therapy than they would choose for themselves.11 12 Perhaps the most important role of advance directives is that they stimulate communication between doctors and patients, and they encourage doctors to consider patients' wishes.

Studies have found that about 90% of patients desire some form of advance directive such as a conversation with their doctor, a living will, or a durable power of attorney. While many people endorse the concept of advance directives, few patients actually discuss these with their doctor. Patients seem to believe that doctors should take the initiative in these discussions and that such issues are only relevant to those who are old or in poor health.

However, apart from in the USA, few hospitals have policies on advance directives or proxy decision makers. There are considerable theoretical and practical problems with advance directives. Many directives are framed in vague terms using expressions such as "no heroic measures," or "withhold measures that serve only to prolong the process of dying." Although these problems can be resolved through the use of more carefully worded documents (see fig 2)13 it is impossible to anticipate the range of situations that may occur.

There is also the issue of whether patient preferences remain the same over time. Studies suggest that patient preferences may change in short periods of time owing to the onset of illness, although formally recording one's preferences does seem to limit this variability. Patients also vary in how strictly they want their advance directives to be followed.14 For these reasons it is generally recommended that patients have a living will together with durable power of attorney, so that healthcare decisions can vary depending on circumstances.

Case study John is a 32 year old man with stage 4b HIV. He had a week-long cough, a fever and was delirious; he was brought in to the outpatients clinic by his partner. His oxygen saturation was 62%. The HIV registrar thought that he probably had pneumocystis carinii pneumonia. According to his partner, John's memory had been deteriorating for several months and he often forgot to take his medications. His partner stated that he did not believe that John would benefit from ventilation and produced a document signed by John that assigned all decision-making responsibilities to his partner.

We believe that advance directives are likely to become more common in the future. For instance, in 1992 in the United Kingdom the Terence Higgins Trust distributed over 20 000 copies of a living will and healthcare proxy form for patients with HIV infection or AIDS.

The law
In the United States, legal recognition of living wills has existed since 1976. Since 1991, the Patient Self Determination Act has required health institutions to inform patients of both their right to refuse life sustaining treatment and their right to complete an advance directive. Currently 47 American states have laws on advance directives or healthcare proxies.

Other countries lag behind on explicit legal recognition of advance directives. In a landmark case in the United Kingdom--involving Mr Bland who was in a persistent vegetative state and sustained by artificial feeding--the House of Lords noted that advance directives could be legally binding if they were expressed as clear instructions.15 Consequently, competent and informed advance refusals of medical treatment can be legally binding in the United Kingdom if certain conditions are met.

In Australia there is no legal recognition of advance directives. However, in some Australian states proxies (relatives or others) may be appointed to refuse resuscitation on behalf of an incompetent patient; doctors are legally obliged to comply with such orders.

Conclusion
People cannot be certain that their wishes for healthcare treatment will be obeyed if they become incompetent. Perhaps the best means that we have for ensuring future care is through adequate and detailed communication between doctors and family, along with documentation of any decisions reached where individuals so desire. Advance directives are likely to play an increasingly important role in making decisions for incompetent patients. If an advance directive is not available, decisions should be based upon carefully considered substituted judgements made by surrogate decision makers in preference to consideration of best interests criteria.

Advance directives should be appr-oached formally and are legally binding in some countries. Patients rarely discuss these issues with their doctors although many would like to. Advance directives may improve the process of decision making by focusing on the patient's wishes and by facilitating open and honest exploration of issues that are important to them.

Care needs to be taken when making decisions for incompetent patients and it is likely that this can only be done adequately using a combination of substituted judgments, a consideration of a patient's best interest, and advance directives.

References

1 Doyal L. Advance directives. BMJ 1995;310:612-3.

2 American College of Physicians' ethics manual. 3rd ed. Ann Intern Med 1992;117:947-60.

3 Emanuel LL, Barry MJ, Stoeckle JD, Ettleson LM, Emanuel EJ. Advance directives for medical care--a case for greater use. N Engl J Med 1991:324 (13) 889-95.

4 President's commission for the study of ethical problems in medicine and biomedical and behavioural research. Washington DC: US Government Printing Office, 1990:132-3.

5 High DM. All in the family: extended autonomy and expectations in surrogate health care decision making. Gerontologist 1988;28:46-52.

6 Seckler AB, Meir DE, Mulvihill M, Paris PEC. Substituted judgement: how accurate are proxy predictions? Ann Intern Med 1991;115:92-8.

7 Hare J, Pram C, Nelson C. Agreement between patients and their self selected surrogates on difficult medical decisions. Ann Intern Med 1992;152:1049-54.

8 Ramsey P. Two step fantastic; the continuing case of Brother Fox. Theological Studies 1981; 42:133-4.

9 Robertson GS. Making an advance directive. BMJ 1995; 310:236-8.

10 Buchanan AK, Bock DW. Deciding for others: the ethics of surrogate decision making. Cambridge: Cambridge University Press, 1989.

11 Seckler AB, Meir DE, Mulvihill M, Paris PEC. Substituted judgement: how accurate are proxy predictions? Ann Intern Med 1991;115:92-8.

12 Angel M. Prisoners of technology: the case of Nancy Cruzan. N Engl J Med 322; 1226-8.

13 Silberfield M, Nash C, Singer PA. Capacity to complete an advance directive. J Am Geriatr Soc 1993;41:1141-3.

14 Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their directives followed? JAMA 1992;267:59-63.

15 Airedale NHS Trust v Bland [1993]. 1 ALL ER 859.