Bioethics for clinicians: 5. Substitute decision-making Neil M. Lazar, MD, FRCPC; Glenn G. Greiner, PhD; Gerald Robertson, LLB, LLM; Peter A. Singer, MD, MPH, FRCPC	Order now!
Canadian Medical Association Journal 1996; 155: 1435-1437 [résumé]

Dr. Singer's work is supported by the National Health Research and Development Program through a National Health Research Scholar Award. The views expressed here are the authors' and not necessarily those of their supporting groups or employers.

Series editor: Dr. Peter A. Singer, University of Toronto Joint Centre for Bioethics, 88 College St., Toronto ON M5G 1L4; fax 416 978-1911; peter.singer@utoronto.ca

© 1996 Canadian Medical Association (text and abstract/résumé)

• Letters: Safe havens for addicted mothers, A.E. Chudley; H.L. Bright; D.H. Smith; response: E. Flagler

Abstract

Mr. O is an 85-year-old widower who was diagnosed with Alzheimer disease 10 years ago. His clinical condition has deteriorated, and he is no longer able to maintain an adequate energy intake by mouth. Feeding by nasogastric tube has been tried, but the patient repeatedly pulls out the tube. The option of using a surgically placed feeding tube is being considered by his caregivers. His family include five adult children, all of whom are available. Two of them think their father would want the feeding tube, two others think he would not want it, and one does not know what he would want.

Mrs. P, a 73-year-old widow with advanced chronic obstructive pulmonary disease and osteoporosis, has recently moved into a nursing home because of deteriorating health. Her closest family members include three married children. One daughter lives in the same city, and the other two children live more than an hour away by car. Mrs. P's breathing deteriorates suddenly and she is transferred to hospital for assessment and treatment. When she is seen in the emergency department she is confused because of either respiratory failure or the toxic effects of an infection. Blood analysis reveals significant hypoxemia and respiratory acidosis. The attending physician wonders whether or not Mrs. P should be intubated. She has never required intubation before, and her hospital records give no instructions with regard to resuscitation. Mrs. P's daughter has just arrived and is waiting to talk to the physician.

What is substitute decision-making?

Why is substitute decision-making important?

Ethics

First, the substitute decision-maker should be the person or persons with the best knowledge of the patient's specific wishes, or of the patient's values and beliefs, as they pertain to the present situation. In general, close relatives are preferred as substitute decision-makers in the belief that they will know the patient well enough to replicate the decision that the patient would make if he or she were capable. Of course, the patient may be estranged from his or her spouse, parents, children or siblings, and in some instances a friend or perhaps the patient's primary care physician or nurse will know the patient's wishes best.

Second, the task of substitute decision-makers is to decide not how they would want to be treated were they in the patient's situation but, rather, how the patient would want to be treated. Despite the best intentions and most sincere efforts of those involved, it sometimes remains a mystery what the patient would have chosen. When good information about the patient's wishes, or values and beliefs, is lacking, or when the available information is contradictory, the decision-maker may be forced to make a judgement as to the patient's best interests in the given circumstances.

Finally, when relatives disagree they should be encouraged to focus their attention on the question of what the patient would want to be done or what is in the patient's best interests.

Law

Policy

Empirical studies

How should I approach substitute decision-making in practice?

The most appropriate person to act as substitute decision-maker is someone appointed by the patient while he or she is still capable, or by a proxy advance directive or by a court. Other substitute decision-makers, in their usual order of ranking, include the patient's spouse or partner, child, parent, sibling or other relative. In some jurisdictions a public official will serve as substitute decision-maker for a patient who has no such person available.

The criteria on which the decision should be based are the specific wishes previously expressed by the patient, the patient's known values and beliefs, and the patient's best interests. The patient's wishes are those preferences expressed by the patient while he or she was competent that seem to apply to the decision that needs to be made. Some patients record their wishes in an advance directive. Values and beliefs are less specific than wishes but allow the substitute decision-maker to infer, in light of other choices the patient has made and his or her approach to life in general, what he or she would decide in the present situation. The calculation of a patient's best interests is based on objective estimates of the benefits and burdens of treatment to the patient.

The role of the health care professional is to facilitate the process of substitute decision-making by providing information that will enable the substitute to make an informed choice on the patient's behalf. Health care professionals should guide the substitute to consider the patient's previously expressed wishes, values and beliefs, or best interests (in this order). When it is apparent that the substitute is making a choice that is significantly different from what the patient might have chosen, health care providers find themselves in a difficult situation and should seek advice from colleagues, ethics committees and legal counsel.

The cases

Mr. O is permanently incapable because of his Alzheimer disease. The problem is that his five children cannot agree on what treatment he would choose. In such situations, sensitive counselling with the family is needed; if this still does not resolve the conflict, referral to a board (e.g., the Consent and Capacity Board in Ontario) or to the courts might be required. As soon as the conflict with respect to who will make the decision for the patient is resolved, the proposed treatment can be discussed with that person. In this case, a social worker is able to bring the family together to reach a consensus as to which children are in the best position to act as substitute decision-makers. The patient dies from progressive Alzheimer disease 6 months later without a feeding tube being placed.

Mrs. P is judged to be temporarily incapable. After discussing the patient's incapacity, the physician asks the daughter whether she knows what her mother would want if the situation deteriorates further. The daughter says that Mrs. P's quality of life declined after her husband died. Although she has never discussed this sort of situation directly with her mother, she does not think that her mother would want resuscitation. However, she is uncomfortable making this decision on her own. The physician suggests that she consult with her siblings. The physician says that in the meantime everything possible will be done to avoid intubation; however, intubation will proceed if it becomes medically necessary. Two hours later the daughter reports to the physician that all of the children feel that Mrs. P would refuse intubation if she were capable. Although the physician makes it clear that Mrs. P might be able to make this decision herself if she recovers from the current episode, the daughter requests that a "do not intubate" order be placed on the patient's chart. The physician agrees to write the order and plans to discuss it with the patient if her capacity improves.

References

1. Buchanan AE, Brock DW. Deciding for others: the ethics of surrogate decision-making. Cambridge (UK): Cambridge University Press, 1989.
2. Alberta Law Reform Institute. Advance directives and substitute decision-making in health care. Edmonton: The Institute, 1991. Report for discussion no 11.
3. Robertson GB. Mental disability and the law in Canada, 2nd ed. Toronto: Carswell, 1994.
4. Rasooly I, Lavery JV, Urowitz S, Choudhry S, Seeman N, Meslin EM, et al. Hospital policies on life-sustaining treatments and advance directives in Canada. CMAJ 1994;150:1265-70.
5. Choudhry NK, Ma J, Rasooly I, Singer PA. Long-term care facility policies on life-sustaining treatments and advance directives. J Am Geriatr Soc 1994;42:1150-3.
6. Joint statement on resuscitative interventions (update 1995). CMAJ 1995;153:1652A-1652C. [full text / texte complet]
7. Emanuel EJ, Emanuel LL. Proxy decision-making for incompetent patients: an ethical and empirical analysis. JAMA 1992;267:2067-71.
8. Tsevat J, Cook EF, Green ML, Matchar DB, Dawson NV, Broste SK, et al. Health values of the seriously ill. Ann Intern Med 1995;122:514-20.
9. Seckler AB, Meier DE, Mulvihill M, Paris BE. Substituted judgment: How accurate are proxy predictions? Ann Intern Med 1991;115:92-8.