Volume 11, Number 1, February 2000

Book Review - When Doctors Say No: The Battleground of Medical Futility

Randall Sargent, MD, CCFP
Medical Director, Bethany Care Centre Calgary

Susan Rubin's contribution to the Medical Ethics Series edited by D. Smith and R. Veatch analyzes the conclusion that certain medical interventions are futile and are therefore not an option. In her summary remarks, she states that "futility" is an ill-founded concept that should be viewed as a red herring as it diverts attention from the need for improved overall communication amongst patients, their social supports, and the medical team. Whether the setting is a community, long term care, or acute care site, there are common elements in this decision making process that are short-circuited when one component acts without input from the others.

Susan Rubin has divided the book into chapters that present the various aspects of the "futility" debate: the collision of facts and values; a "constructionist" analysis of what most people mean by the term "futility"; the evaluative aspects of "futility" terminology; and the impact of physiology on the categorization of "futile" interventions. In her concluding chapter she discusses the alternatives to "futility" as a cornerstone of the decision-making process. She appeals for a second look at the process of health care decision making and suggests that there are avenues available that make superfluous the need to invoke "futility" arguments. She argues that there are other more ethical avenues of discussion that can ensure respect for the autonomy of the patient without compromising the role of patient supports and medical experts.

It is tempting to think that, as examples in this book often portray, this is only an issue relevant to end-of-life decisions. In truth, the issues addressed by Rubin are present whenever care decisions are made. The central player is the person who has become a patient of the health care system. Ethically speaking, this person is an autonomous being with full decision making power with respect to their health care needs. The patient's support system ideally has the patient's best interest in mind and may act as legal proxy. The role of the various health experts is to analyze the malady, offer interventions that have a chance of restoring health, provide expert opinion, and support the patient. These relationships can, however, go off track at several points, including when a patient is unable to speak on their own behalf, there is disagreement or disinterest on the part of the social supports, or there is a failure of the health experts to provide sufficient options or background information to the patient or their proxy.

I have been privy to discussions about the long-term care needs of people resident in institutional settings. Though the Canadian health care system is not based on management by private interest "for-profit" groups, some long term care facilities are privately owned. This, I believe, affects the range of options available. Residents of long-term care facilities can be viewed as no different from patients who are labeled 'terminally ill.' In such a setting, if a cost-benefit analysis test was carried out, certain options such as CPR could be deemed "futile" or "unlikely to restore health." There is anecdotal evidence ('facts' according to Susan Rubin) that there is little benefit in attempting to resuscitate people whose age is beyond 84 years. Often, attempts to resuscitate at any age do not extend longevity, are costly to the health care system, and fail to return the person to health. Given these facts, there is a temptation to formulate a plan that does not include the option of resuscitation for any patients beyond a specified age. This raises the question - who makes a decision that affects the health of another person? Should all patient requests be obliged? What about requests to be kept alive at all costs?

The only approach that I have seen work in long term care is the one in which the medical experts bring information about the full range of options (not just the ones they deem "appropriate") and answer questions about these options. The patient is present, or has a proxy present who hopefully has the legal power to speak from their understanding of the patient's perspective. Other supports and interest groups may also be present, but more for support than the power to make decisions. Suggestions can come from any source. Within this arena the options, problems, and hopes of each contributor can be brought to the table and discussed. The decision that results is ideally supported by all participants, and thus less likely a source of objections in the future.

Labeling an intervention as "futile," according to Susan Rubin, has a place in this type of discussion only as an opinion based either on the values of a participant in the discussion, or on "facts" derived from scientific inquiry. "Futility" cannot ethically form the sole basis for a person's health management decisions. "Futility" is inappropriate as a rationalization for budget management, limiting resources, or profiteering. Susan Rubin's concern about the medical experts' (read doctors) approach to decision-making focuses on a lack of information disclosure, unilateral decision making, and professional hubris.

I do not recommend this book for general reading because it seems excessively focused on the claim that "futility" is the final court of appeal. I did, however, enjoy the depth of analysis of the concept of "futility" as a modifier of options in health care. The need for sound health care system management is obvious, but inherent in this is the need to treat patients in an ethical manner. More often than not, given knowledge of the options available, the patient makes a decision that meets their needs within the needs of the health care system. This is the point that Susan Rubin drives home, and it is a good one.

Christopher James Doig, MD, MSc, FRCPC
Office of Medical Bioethics, University of Calgary

The paradigm of futility, defined as the provision of medical care in situations where treatment is deemed without benefit, has generated considerable controversy. "When Doctors Say No," is the latest work to address this topic. The author, Dr. Susan Rubin, is a philosopher and ethicist described as the cofounder of the "Ethics Practice," a California firm providing clinical ethics and bioethics education consulting.

Rubin's central thesis is "a deceptively simple one . . . [s]hould physicians be empowered to make unilateral decisions on the basis of futility?" Rubin's position is no, stating both that the current conceptual understanding of futility is suspect, and that there can be no justification for unilateral physician decision making. Rubin's lofty objectives in this short text are: (1) to critique the current formulation of futility, (2) to challenge the presumptions within the debate using a social constructionist theory, and (3) to persuade physicians tempted to unilaterally refuse treatment to adopt an alternative course of action. Unfortunately, Rubin is unsuccessful in achieving any of these goals.

In the first of five chapters entitled "Whose Facts, Whose Values?", Rubin identifies two essential categories of futility that have been previously defined in the literature: evaluative futility (treatment that is deemed not worthwhile), and factual/physiologic futility (treatment that will not work). Rubin then provides an overview for her following chapters. She argues that the fact-value distinction is arbitrary and that no difference exists. If the reader accepts this contention, then the only logical conclusion that follows is agreement that all decisions must be value based. Therefore, only a patient's specific values should be paramount in clinical decision making. With this understanding, limits on patient decision making can justifiably be imposed only when socially sanctioned by the greater society. Limits by unilateral physician decision, or based on professional healthcare guidelines, are morally and ethically indefensible.

In the second chapter - "What do People Mean by Futility: A Conceptual Analysis" - Rubin begins the chapter with the assertion "the concept of futility has yet to be the subject of a sufficiently systematic conceptual analysis . . . [t]his chapter fills this gap in the existing discussion." The chapter accurately recites work previously published, but with an analysis that is at best sophomoric. The author does not demonstrate an innovative or unique perspective, or much in the way of an original contribution. Given the initial promise to the reader, the chapter provides nothing better than a simple disappointment.

"A Question of Values: The Problem with Evaluative Futility," and "The Power of Positivist Thinking: The Problem with Physiologic Futility" are the titles of the third and fourth chapters and represent the best of what Rubin has to offer. In chapter 3, using the concept of the generalization of expertise argument first presented by Robert Veatch, Rubin effectively argues the position that only the individual's values are relevant when decisions based on 'worth' are considered. Furthermore, Rubin provides an excellent balance in discussing the objections to the generalization of expertise argument. In chapter 4, Rubin identifies three presuppositions that are fundamental to accepting physiologic futility as a just concept: (1) we can know the truth, (2) knowledge is autonomous, and (3) scientific method will lead to the truth. She then argues, using a social constructionist theory, that decisions based on physiologic futility can only be value based. To paraphrase the argument, the scientific foundation inherent to the 'factual method' ignores the social structure that permits the privileged/powerful and their unique inherent value system, to influence/dictate the (1) scientific questions to be asked, (2) methods to be used, (3) interpretation applied to data, and (4) dissemination of the results. Rubin states, "I contend that in light of these problems, the practice of privileging or making an exception of physiologic futility and using it to justify physician unilateral decision making ultimately becomes indefensible."

In the final chapter, Rubin comments that her intent has been to advance discussions both by offering a new perspective in the structure and meaning of the futility debate and by underscoring the need for a new and more direct approach to the real problems. Particularly after two interesting preceding chapters, this chapter is again one of disappointment. Rather than building on the arguments and offering an innovative or unique solution to clinical ethical problems with futility, her final appeal to use ethics committees or the courts when differences in opinion seem irreconcilable, resonates hollow.

Rubin's book provides an important balance to other work already available. The obvious is as an alternative perspective to Schneiderman and Jecker's "Wrong Medicine." Rubin's thesis is not as mature as the thesis presented by Jecker and Schneiderman. However, this may reflect the latter two authors' many previous publications and presentations; Rubin does not appear to have had the same opportunity to benefit from criticism and discussion that arise from peer review publication and public presentation.

I remain perplexed by arguments put forward suggesting that physicians and other health care workers are motivated to limit treatment interventions due to considerations other than the best interests of the patient. Many, including Rubin, suggest that the position of power in the patient- 'physician' relationship is a key factor. I would disagree. Engaging in discussions to withdraw care, or deciding 'to give up' or limit aggressive treatment, are humbling acts, not ones of power. I think many would agree that it is often more expedient, and financially rewarding, for a physician to continue treatment, and not to limit interventions. When the patient dies, the physicians reap the praise of the family for 'doing everything possible'. So why take the time and emotional energy to attempt to counsel families to withdraw treatment? Furthermore, what is the motivation of other health care workers? From anecdotal experience, it is often nurses that first question whether persisting with treatment is futile. Often, prior to conflict between the health care team and family, conflict will have arisen between nurses and physicians with the former suggesting treatment is futile, and the latter arguing that treatment is necessary. Rubin, as many authors before her, fails to identify the proportionally greater emotional burden borne of these workers, and explain the basis behind their opinion that care is futile. I personally think that the hours a nurse spends directly at the bedside identifying the pain, discomfort, and lack of benefit associated with persistent treatment, provide a unique perspective as yet insufficiently explored in this debate. I hope that future work by experts in the area will focus on a conceptual understanding of the roles and beliefs of all members of the health care team, and how these beliefs influence their actions.