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HEALTH ETHICS TODAY
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.
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