As you read this, some 10,000 to 25,000 adults and 4,000 to 10,000 children are being supported and maintained by modern medical technology in a permanent vegetative state with no hope of recovery and at a cost of one to seven billion dollars each year.
How we got into that predicament and what can be done about it is the focus of the second edition of Wrong Medicine. The authors, Lawrence J. Schneiderman and Nancy S. Jecker, are medical ethicists with a distinguished record of work centered on futile medical treatment. They view this as a serious and growing problem for our society and one where physicians play a central role in clarifying both the patient and the public's perception of the problem.
Medical futility, in the authors' view, is "any effort to provide therapy to a patient that is highly likely to fail and whose rare exceptions cannot be systematically produced." The physician's role should be patient focused and directed toward "the suffering person, not the biological organism or failing body part." They even propose some metrics for futility, suggesting that if a therapy hasn't worked in the last 100 patients, it is reasonable to conclude that it is futile.
At first that struck me as a bit simplistic. But if there are no benefits in 100 patients, then benefit is indeed unlikely (p<0.01).That seems to be a reasonable hypothesis on which to begin discussion. While there is a general definition of futility in any situation, it has most relevance to futile interventions at or near the end of life.
Using a series of carefully selected examples of medical futility including the cases of Nancy Cruzan, Terri Schiavo, Baby K, and others less well known, Schneiderman and Jecker illustrate the various dilemmas surrounding such treatment and address the arguments voiced against discontinuation of futile treatment.
Meaningful treatment, the authors say, should distinguish between an effect and a benefit. They argue that a treatment is futile if the patient lacks the capacity to comprehend the benefit of treatment or if treatment fails to release the patient from total dependence on intensive medical care.
They emphasize that the determination of medical futility refers to a particular treatment of a particular patient at a particular time. In that sense, it is quite distinct, but often confused with rationing, which involves prioritization of scarce resources among many patients. Medical futility applies even if resources are abundant and cheap.
A centerpiece of the argument is that discontinuation of futile treatment does not imply discontinuing care, but rather, serves to redirect efforts to focus on treatments that maximize comfort and dignity.
Schneiderman and Jecker believe that physicians are not only permitted to discontinue futile care but should be encouraged to omit futile therapies. They go further and suggest that physicians should be required to decline the use of futile interventions because they feed inflated ideas about what medicine can accomplish.
The authors thoughtfully explore some of the legal issues surrounding futile care and discuss the various myths held by physicians, lawyers, patients, and the public. First and foremost, they point out that "no physician has ever suffered a civil judgment or criminal conviction for deliberately allowing or even causing a patient to die."
An important court decision, Barber vs. Los Angeles County Superior Court, ruled that withholding and withdrawing futile treatments are regarded in the law as equivalent acts. Tube and intravenous feeding and hydration are legally regarded as treatment and can be stopped under appropriate circumstances.
These general concepts have been endorsed by the AMA, the American Nurses Association, and the American Academy of Neurology, as well as the ethics committee of the Society of Critical Care Medicine. But physicians still seem insecure because the courts at many levels have been inconsistent in their interpretation of the laws.
Although thousands of decisions by physicians, patients, and their families about futile care are made every day, only a few find their way into the courts and the public media. While the court decisions sometimes serve to clarify the law, they rarely result in satisfactory benefit for the patient involved.
The authors use the book to call upon physicians, health care professionals, and society to address the issue of medical futility. They argue for more evidence-based practice and more outcomes research to assess the utility of commonly used medical interventions such as CPR and assisted ventilation. They quote a Journal of the American Medical Association study that looked at CPR in 117 hospitalized patients with metastatic cancer and found that none of them survived to leave the hospital. The book urges more of such work to provide physicians with data to bolster their decisions about the utility of interventional therapies in specific settings.
Schneiderman and Jecker return, in their summing-up chapter, to the physician's role in defining futile care, urging that the focus be on the entire patient, not some organ or physiologic function or laboratory value. They stress that a particular treatment may be futile, but care is never futile, nor is the patient ever futile.
Abandoning futile treatment enables the physician to focus on comfort, emotional support for the patient and family, and support for a death with dignity.
While many physicians might wish that these issues were better defined by law or by specific written guidelines, the authors resist that idea. They believe that these decisions are so unique and patient-specific that they are better addressed individually. They point to a New Jersey court decision that concluded: "Courts are not the proper place to resolve the agonizing personal problems which underline these cases. Our legal system cannot replace the more intimate struggle that must be borne by the patient, those caring for the patient, and those who care about the patient."
Wrong Medicine speaks to a diverse audience but there is much in the book of direct relevance to oncology. The broad definition of futile medicine would seem to apply to much of what we do every day, because ultimately it is very likely to fail. The crucial distinction is that our patients often enjoy sequential segments of active and meaningful life during their periods of remission.
Seen from that perspective, I suspect that Schneiderman and Jecker would concur that this does not fit their expansive definition of futile care. However, the continued use of treatments far beyond their likelihood of meaningful patient benefit certainly does qualify as futile.
JOHNS HOPKINS UNIVERSITY PRESS, 2ND EDITION, 2011, 248 PAGES, ISBN: 080189851X
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