Ethics resources in health care institutions: Rise, reception, scope, and limits

Introduction

Virtually every significant health care decision has an ethical component. Partly in recognition of this, and partly because accreditation requires it, most health care institutions in BC have access to ethics resources. These can come in the form of a regional ethics committee, an ethics committee attached to the institution, or ethics consultants. All typically provide ethics education, write guidelines, and offer a consultation service.

Ethics resources are not always welcomed by physicians. Since ethics committees are interdisciplinary, and professional ethicists typically are not medical people, we sometimes see a “Who-are-you-to-tell-us-what-to-do?” attitude from physicians. We also sometimes find ethics committees and ethicists given too much respect. The cult of expertise is so common in health care that ethicists are often treated as experts whose job it is to pronounce what is right and wrong. Both reactions are mistaken. My aim here is to explain why they are mistaken by describing what is involved in settling the kinds of ethical issues that come for consultation. Understanding what clinical ethics is should pave the way for a better reception and use of ethics resources.

Health care has recently undergone a Copernican revolution. The Hippocratic tradition, which gave physicians’ judgment dominance over patients’ preferences, has given way to a patient- and family-centred philosophy. This philosophy can be stated in the form of a decision tree, as follows. Patients who have decision-making capacity are decision makers: they can refuse all treatment, however appropriate, and live with risk, neglect, self-neglect, and abuse. If patients lack decision-making capacity, others—typically the patient’s family and physician—will make the decisions. Surrogate decision-makers must first try to make the decision that the patient would have made—a so-called substituted judgment. Failing that, they must make the decision that a reasonable person in the patient’s position would make—a so-called best-interest judgment. But just because patients or families request treatment does not mean that it should be provided. Physicians have professional autonomy, and can say no when they think the request inappropriate.

Examples from the decision tree

This decision tree is the establishment; it underlies every code of health care ethics in Canada as well as Canadian health care law. The main business of clinical ethics is to apply it to reality, and this creates nightmares at every point. It is useful to work through the decision tree and see how this can happen.

Decision-making capacity

A 16-year-old patient with serious burns arrives in emergency and declines blood products; a frail elderly person wants to live at home at risk; a recently widowed woman starts to give away family heirlooms to strangers. Whether intervention in these cases is appropriate depends on whether these persons have decision-making capacity. But the test for this is far from clear. Does a person just have to show understanding of the nature and consequences of decisions, or also appreciation? Is a cognitive grasp of the situation enough, or can judgment-distorting elements such as mental illness, emotional states, and influence of others get factored in? Whatever the test, applying it and judging inner states from outward criteria is fraught with difficulty, and there is no reason to think competency testing is any more accurate than educational testing. Thus the first determination the decision tree requires is not easy.

Substituted judgment

There are also often daunting problems in trying to arrive at a substituted judgment. If a patient leaves an instructional directive that rejects any life-sustaining treatment in the event he becomes demented, does that apply if once demented he seems to be rather enjoying life? If a patient stipulates in a living will that she does not want life-preserving surgery, does that mean that surgery cannot be performed if it is also a comfort measure? The problem with instructional directives is that they are typically insufficiently informed and do not match the exact circumstances in which they are brought into play. Families and physicians are left with the problem of trying to divine the writer’s intention. Must they take this to be what the person actually wrote, or may they speculate about what the person would have written if he or she had known more?

Best-interest judgment

Arriving at best-interest judgments can be equally or more vexing. A child with significant deficits is born; a stranger is brought to hospital with a severe stroke; an elderly person becomes depressed, stops eating, and ECT is recommended. To apply the “reasonable person in the patient’s position” standard, what do decision-makers have to strip away from (or add to) themselves to become the “reasonable person”? And once in that guise, it is difficult for them to put themselves in the position of the patient and say what that person would want: to predict, for example, what would be the statistically likely preference of a Chinese Catholic who has suffered a severe stroke with deficits of X and a prognosis of Y, or whether a newborn with substantial mental and physical problems would prefer non-existence to existence.

Determining when physicians can refuse to provide requested treatment gives no relief from difficulty. A noncompliant substance-abuser who lives in a park presents for his third valve replacement; a patient with terminal metastatic cancer refuses a “do not resuscitate” order; a family insists on tube feeding for a loved one in a permanent coma; parents demand maximally aggressive treatment for an anencephalic infant. Physicians are often sorely tempted to refuse these persons the treatments they seek by appealing to some combination of futility, harm to patient, harm to others, excessive cost, or conflict with conscience. But the exact definitions of these concepts, and when they can be used to justify refusing requested treatment, is not well understood ethically or legally. What is meant by futility? Why should futility, in any sense, be a justification for saying no if the treatment has psychological benefits for the patient or family, as it typically would? Can cost and harm to others be invoked to refuse a particular patient treatment, given the way money is spent and risks accepted elsewhere in any hospital? Can physicians insist on their judgment of what is harmful to the patient under a philosophy of patient- or family-centred care? Should demands for treatment based on culture or religion be given any more weight than those based on idiosyncratic preferences? Are there any limits to appeals to conscientious objection, and if so, how are they set?

The examples above illustrate how difficult it is to apply the standard decision tree to flesh and blood cases and, as remarked earlier, doing this is the main business of clinical ethics. Reflecting on the difficulties, we can see that clinical ethics requires a marriage of ethical and clinical components. The aim is to arrive at decisions that are backed by reasons as strong as or stronger than those backing any alternative decisions that could have been made instead. The role of ethicists and ethics committees in this collaboration is to provide elements that physicians and other health care providers may not feel confident about—the decision tree, and the distinctions and arguments that are necessary for its application. The role of health care providers to provide the clinical information—diagnosis, prognosis, treatments available, risks and benefits, preferences, and so on—that gives the tree application to cases. Sometimes ethics committees and ethicists overstep their role; sometimes they fulfill it badly. But, properly construed and carried out, ethics committees and ethicists should not call forth either the resentment or the deference they occasionally do. And sometimes they actually help.

Suggested reading

Beauchamp TL, Childress JF. Principles of Biomedical Ethics. New York: Oxford University Press, 1994.

Jonsen AR, Siegler M, Winslade W. Clinical Ethics. New York: McGraw-Hill, 1992.

Pellegrino ED. Patient Autonomy and the Physician’s Ethics. Annals RCPSC 1994;27:171-173.

Singer PA (ed). Bioethics at the Bedside: A Clinician’s Guide. Ottawa: Canadian Medical Association, 1999. [CMA Review]

Veatch RM. The Basics of Bioethics. Upper Saddle River, New Jersey: Prentice-Hall, 2000.  

Alister Browne, PhD

Dr Browne is the chair of the Department of Philosophy, Langara College; ethics consultant, Vancouver Hospital and Health Sciences Centre; clinical associate professor, Department of Family Practice, Faculty of Medicine, UBC. Dr Browne is chair of the ethics committee of Vancouver Hospital and Health Sciences Centre and a member of the ethics committees of GF Strong Rehab and George Pearson Centres, British Columbia’s Children’s Hospital, Sunny Hill Hospital, and Burnaby Hospital. He is also on the board of directors of the BC Civil Liberties Association and a member of the steering committee for the British Columbia Centre for Excellence in HIV/AIDS, St Paul’s Hospital.