When Doctors Say No: The Battleground of Medical Futility / Edition 1 available in Hardcover
When Doctors Say No: The Battleground of Medical Futility / Edition 1
- ISBN-10:
- 0253334632
- ISBN-13:
- 9780253334633
- Pub. Date:
- 10/22/1998
- Publisher:
- Indiana University Press
- ISBN-10:
- 0253334632
- ISBN-13:
- 9780253334633
- Pub. Date:
- 10/22/1998
- Publisher:
- Indiana University Press
When Doctors Say No: The Battleground of Medical Futility / Edition 1
Hardcover
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$25.95Overview
Product Details
| ISBN-13: | 9780253334633 |
|---|---|
| Publisher: | Indiana University Press |
| Publication date: | 10/22/1998 |
| Series: | Medical Ethics |
| Pages: | 208 |
| Product dimensions: | 6.12(w) x 9.25(h) x (d) |
| Age Range: | 18 Years |
About the Author
Read an Excerpt
When the Doctors Say No
The Battleground of Medical Futility
By Susan B. Rubin
Indiana University Press
Copyright © 1998 Susan B. RubinAll rights reserved.
ISBN: 978-0-253-33463-3
CHAPTER 1
WHOSE FACTS, WHOSE VALUES?
An Overview of the Futility Debate
A dilemma has captured the attention of health care professionals, patients, families, insurers, public policy analysts, and ethicists alike. It has arisen in response to the so-called problem of medical futility and finds its expression in the queries of physicians who ask, "If this treatment is futile, can't we just stop? Can t we just say no?"
This book is an attempt to answer their question, to critique both the concept of futility and the structure of the debate that surrounds appeals to futility in medical decision making, and finally to point the way towards a much needed, more defensible, and more fruitful line of inquiry.
The underlying question is a deceptively simple one: Should physicians be empowered to make unilateral medical decisions on the basis of futility? In other words, should physicians' opinions about the futility of a particular treatment be sufficient to justify their refusal to offer, provide or continue treatment that patients expressly desire?
In what follows, I will examine critically the nature and limit of the futility appeals made most frequently in the clinical setting and consider whether they are sufficient to justify physician unilateral decision making. In the end I will argue that no current formulation of futility is sufficient to justify physician unilateral decision making and that the use of the concept should be abandoned. In perhaps my most distinctive contribution to the debate, I will apply a social constructionist theory of knowledge to uncover and challenge the presumptions underlying the standard approach to futility judgments. I will also argue that the rhetoric of futility has distracted and deflected our attention and obscured the very issues most in need of considered public reflection and debate. Finally, I will consider the clinical and public policy implications of my argument and discuss some alternative responses available to a physician tempted to refuse to offer, provide, or continue treatment on the grounds of futility.
It is necessary to clarify my frame of reference and use of terms. I have deliberately focussed on futility conflicts that arise in the context of the individual physician-patient relationship because that is the paradigmatic example most thoroughly discussed to date in the literature, in the clinical setting, and at the institutional and public policy level. But other involved parties, such as non-physician health care professionals, family members or other surrogates, insurers, and even society at large have no less an important stake in the futility debate. In fact, much of what I say has significance beyond the individual physician-patient encounter.
Accordingly, the words "patient" and "physician" should be understood throughout to encompass far more than the individual patient and the individual physician in an individual medical encounter. For example, when a patient is incapable of participating in the decision making process, family members or other surrogate decision makers might find themselves facing conflicts over futility when they act on the patient's behalf. In such instances, one could substitute the words "family members" or "surrogate decision makers" for "patient." To avoid overly cumbersome prose, I intend the word "patient" to be read inclusively throughout, encompassing all such possibilities. Likewise, the wide range of health care professionals involved in any patients care might find themselves facing conflicts over futility. And further, it may be the medical profession's and not just the individual physician's assessment of appropriate behavior that is at stake in a conflict over futility. Again, to simplify the linguistics of my argument, I intend the term "physician" to be read inclusively as well, encompassing both non-physician health care professionals and the medical profession generally when appropriate.
This being said, my use of terms should not be misinterpreted to imply that the patient's interests and perspective will always be in harmony with the family's or surrogate decision maker's interests and perspective, that the individual physician's interests and perspective will always be shared by their peers, or that all potential conflicts are reducible to the physician-patient conflict. Clearly potential conflicts may exist not only between physicians and their patients, but also between patients and family members or other surrogate decision makers, between patients and their insurers, between patients and the larger society, among members of the health care team, between members of the health care team and family members or other surrogates, between members of the health care team and insurers, between the health care community and the larger society, and within the larger society. The complicated web of relationships converging in any given medical encounter inevitably expands the range of potential conflicts.
This book begins with an analysis of the paradigmatic conflict between physicians and patients in order to specify concretely what is at stake in the futility debate and in any futility conflict. Then, to situate the debate in its broader context, I consider the relationship between the medical profession and society, and the specific roles each plays in addressing the concerns outlined in this book. By extension, my discussion addresses many of the concerns particular to other stakeholders such as family members, other surrogate decision makers, non-physician health care professionals, and insurers. A central framing question concerns standing: Who among the various stakeholders should have the authority to make which kinds of decisions? In the course of this book I consider this question at the level of the individual encounter, as well as at the level of institutional and public policy.
At its heart the futility debate is a debate about power: who should have it, and how it should be exercised. Not insignificantly, the debate is taking place in an era characterized by an increasingly competitive health care marketplace, a rise in managed care, growing attention to cost and the demands of the bottom line, and heightened interest in the standardization of medical practice. As a result, the stakes of the futility debate are important not only for health care professionals and patients, but for the broader society as well. At issue is the very meaning and place of medicine in society, and the scope of authority that society grants to health care professionals.
Given the diverse range of concerns surrounding the futility debate, it is necessary to be clear about the limited focus of this book. This is not a book about the broad problem of the need to set limits in medicine, to ensure the just allocation of our health care resources, to prioritize our needs, to contain or reduce costs, to improve efficiency, or to reform the health care system. Rather, this book offers an extended examination of the specific proposal that limits be set on the basis of medical judgments of so-called futility. Unquestionably, limits can and should be set in medical encounters. At issue in this book is whether futility can ever be a defensible ground for such limit setting.
An Introduction to the Debate
The appeal to futility as a justification for withholding or withdrawing treatment, even against the express wishes of patients, has gained tremendous popularity in the clinical setting and medical literature. The appeal is generally grounded in the widespread conviction that physicians are not obligated to provide, and patients do not have a right to receive, medically futile treatment.
The strength of this increasingly popular conviction and the frequency with which it is now expressed in the clinical context marks a significant shift in the paradigm case of end-of-life decision making in bioethics and has ushered in a new era of clinical dilemmas. While the older paradigm arose from a clash between patients who wanted to "say no" to medical interventions and health care professionals who wanted to "do everything possible" despite patient resistance, the newer paradigm arises from precisely the opposite conflict: a clash between patients who want "everything possible" done and health care professionals who want to "say no" to medical interventions they deem futile.
But while there is a fairly clear ethical and legal framework for understanding and responding to the older paradigm case of bioethics, a framework for the newer paradigm case of futility is still emerging. Though there is a growing body of literature on the use of the concept of futility to set limits, the concept itself, and the debate surrounding it, have yet to be the subject of a sufficiently thorough and critical conceptual analysis. This book advances the discussion by offering a new perspective on the structure and meaning of the futility debate and by underscoring the need for a new and more direct approach to the real problems underlying conflicts over futility.
The contemporary debate on the appropriate meaning and application of the concept of futility has been framed in several fundamentally mistaken ways. First, a potentially misleading philosophical analogy — the fact/value distinction — has been used to organize the variety of meanings ascribed to the notion of futility. Second, undefended presumptions have been made in favor of the nearly universal tendency to draw different conclusions about the normative weight of futility judgments depending on whether they are more factually or evaluatively based. Third, proposals for physician unilateral decision making as an answer to the identified conflict between physicians and their patients have given the debate a misguided focus and tone. I will comment briefly on each of these presumptions in turn.
The Fact/Value Distinction
Regardless of the normative position they endorse, nearly all participants in the futility debate share an acceptance, albeit oftentimes implicit, of the fact/value distinction as a rough way of contrasting different senses of futility. Considering the difficulty of formulating a single universally applicable definition of futility, what is remarkable about the futility literature is not that attempts have been made to categorize different senses of futility, but rather that the results have been so uniformly consistent on both sides of the debate.
In the standard analysis, the concept of futility is understood to have at least two broad meanings, depending upon whether it is more substantially an evaluative or factual judgment. This is not to say that all contributors to the debate assume that all futility judgments must be either exclusively factually or exclusively evaluatively based. In fact, since it has increasingly been suggested that even so-called factual judgments of futility have an evaluative component, the distinction is not being used as rigidly as it once was. Nonetheless, the futility debate remains guided by the notion that futility judgments, and the conflicts that arise from them, seem sometimes more driven by values and sometimes more by facts.
Accordingly, when futility operates as a primarily evaluative judgment, it is understood to mean that a treatment is inappropriate because it would just not be worth it. When futility operates as a primarily factual judgment, it is understood to mean that a treatment is ineffective because it would just not work. I call these two different kinds of futility judgments evaluative futility and factual or physiologic futility respectively to underscore the influence that the fact/value distinction has had in organizing the debate.
Because the fact/value distinction has so significantly influenced the structure and nature of the futility debate, I will use it as a way of deconstructing the different kinds of arguments represented in the literature. But as will become evident, my initial application of the distinction will be only as a heuristic or organizing device, not as an endorsement of the distinction itself or its use in the futility debate. In fact, I will ultimately argue that the fact/value distinction cannot be sustained, and so neither can the standard normative distinction between factual or physiologic futility and evaluative futility.
Shifting Obligations
The presumption that some futility judgments are based on value-free scientific facts while others are based on value-laden opinions has supported the nearly universal practice of according different normative weight to judgments of physiologic and evaluative futility. In fact, most contributors to the futility debate rely on the fact/value distinction to draw different normative conclusions depending on which kind of futility judgment is at issue.
The popular approach has been to acknowledge the selection of values to be primarily, if not exclusively, in the patient's domain and to assume the interpretation of facts to be primarily, if not exclusively, in the clinicians domain. Of course, not all commentators accept this distinction as defined. In fact, some would assign to physicians the latitude both to interpret the facts and to select the values according to which potential treatments would be selected. But for the most part, contributors to the debate rely on the fact/value distinction to defend a different division of labor.
From this perspective, a tentative framework for decision making about potentially futile treatments has evolved, and gone without further challenge. This framework takes seriously the role of patients in making value judgments about the worth, desirability, and appropriateness of treatments their physicians identify as medically acceptable. And in most interpretations, the framework acknowledges the role society may have in limiting the availability of certain kinds of treatments. But the framework just as clearly delineates a category of treatments with respect to which patient value judgments about worth and desirability are considered irrelevant: namely, treatments that have been deemed ineffective or physiologically futile.
According to the popular strategy of making an exception of physiologic futility, physicians' obligations to their patients are thought to shift depending on the sense in which treatments are judged to be futile. Significantly, it has been assumed that physicians have a stronger obligation to provide treatments that they, in opposition to their patients, deem evaluatively futile, than to provide treatments that they, in opposition to their patients, deem physiologically futile.
Early evidence of the now popular approach to futility judgments, the prominence of the fact/value distinction, and the view that physicians' obligations shift depending upon the type of futility at issue can be found in a number of important documents, including the Hastings Center's 1987 Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying. In a section on futility, the Guidelines explain:
In the event that the patient or surrogate requests a treatment that the responsible health care professional regards as clearly futile in achieving its physiological objective and so offering no physiological benefit to the patient, the professional has no obligation to provide it. However, the health care professional's value judgment that although a treatment will produce physiological benefit, the benefit is not sufficient to warrant the treatment, should not be used as a basis for determining a treatment to be futile.
The Hastings Center Task Force, consistent with the thinking of the time, deliberately limited the authoritative scope of professional futility judgments. While health care professionals' judgments of physiologic futility justify foregoing treatment requested by patients, their evaluative judgments of the treatment's worth do not warrant provider refusal.
An influential 1988 article by Stuart Youngner entitled "Who Defines Futility?" bolstered the Hastings Center's stance and further solidified what has since become the popular approach to the problem of futility. He claimed,
Physicians are in the best position to know the empirical facts about the many aspects of futility. I would argue, however, that all, except for physiological futility and an absolute inability to postpone death, also involve value judgments. ... Physicians should not offer treatments that are physiologically futile or certain not to prolong life Beyond that, they run the risk of "giving opinions disguised as data."
At issue in each of these documents, and in most of the literature that followed from them, is the nature and scope of expertise and the relationship between facts and values. Consistent with the Hastings Center's Guidelines, Youngner makes an exceptional case of physiological futility. In all cases but physiological futility, treatment decisions properly belong to patients because they involve personal value judgments about which only patients are expert. But in cases of physiological futility, treatment decisions properly belong to physicians because they involve factual scientific judgments about which only physicians are expert.
(Continues...)
Excerpted from When the Doctors Say No by Susan B. Rubin. Copyright © 1998 Susan B. Rubin. Excerpted by permission of Indiana University Press.
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