Medical futility debate has been largely “neglected”
More evidence-based information needed
The debate over medical futility has in large part been neglected, and should be expanded beyond “pull the plug” decisions to include doctors’ involvement in the details of end-of-life care, argues Lawrence J. Schneiderman, MD, founding co-chair of the University of California, San Diego Medical Center Ethics Committee. “Patients and families who demand that ‘everything be done’ may well be expressing a subtext: ‘Do not abandon me,’” says Schneiderman. “Physicians should see it as their obligation to pursue comfort care with the same skills and dedication as they applied to aggressive life-sustaining treatments. I cringe whenever I hear the phrase ‘futile care.’ A treatment may be futile. Care is never futile.”
Pursuing a clear-cut concept of medical futility will encourage a more aggressive search for evidence-based information from clinical trials that report not only on successful treatments but also treatments that are unsuccessful, says Schneiderman. “Both kinds of data are important to the practice of medicine. Both provide guidelines for physician choice,” he explains.
Empirical studies and consensus agreements form the basis for establishing standards of practice, and these should be declared openly as policies by medical centers and organizations of medicine for the information of the public and as guidelines to the courts, argues Schneiderman. Many patients and patients’ families have been forced to endure and pay for inhumane, unwanted care either because of an individual physician’s misguided notions of medical duty or because of hospital administrators’ fears of inflammatory media coverage, according to Schneiderman.
“As a consequence, many physicians practice defensive medicine, fearing that anything less than mindless continuation of aggressive treatments would make them legally vulnerable,” he says.
It is up to hospitals to establish policies that record their professional stand on medical futility and end-of-life care, says Schneiderman. “These policies should provide specific definitions and a well-described dispute resolution process that will bear scrutiny by outside, impartial observers,” he says. “Hospitals are likely to find the legal system willing to defer to well-defined and procedurally scrupulous processes for internal resolutions of futility disputes.”
Outdated approach
Despite evidence showing that some interventions done with the intent to prolong life may actually shorten life, and definitely impair the quality of life, medicine is still operating from the priority to keep patients alive as the primary goal, and considering quality of life second, says Nancy E. Havas, MD, FAAFP, associate professor at the Center for Bioethics and Medical Humanities at The Medical College of Wisconsin in Milwaukee.
“This was generally a good approach to care at a time when most people died of infections and curable problems,” she says. “But it is not necessarily a good approach when the major causes of death in the United States are chronic, progressive diseases that are ultimately fatal.” Most people with these diseases experience multiple hospitalizations for their illnesses, including recurrent infections, episodes of heart failure or respiratory illness, delirium, anemia, or kidney failure, notes Havas, and often have severe, critical illnesses that they recover from temporarily, but are recurrent in nature.
“After multiple hospitalizations, usually accompanying an overall decline in overall health and quality of life, it is hard to define the point at which medical treatment becomes ‘futile,’ as some people recover, even when we do not expect them to,” she says. “In most of these cases, the very aggressive [intensive care unit] level interventions people often are provided simply serve to prolong the dying process, rather than providing for additional living.”
If families are unable or unwilling to recognize a futile condition, the health care team might need to remove the burden of decision making from the family and take leadership in supporting the family while simultaneously defining clear limits to a plan for appropriate care options and interventions. “This is where we struggle as health care providers,” says Havas. “We are taught that paternalism is bad, and that patients and families should be the decision makers, but are never taught an alternative to this approach when people are unable or unwilling to engage in difficult decisions.”
Schneiderman says he defines medical futility as the unacceptable likelihood of achieving an effect that the patient has the capacity to appreciate as a benefit. “A patient is neither a collection of organs, nor merely an individual with desires. Rather, a patient is a person who seeks the healing powers of the physician,” he says. “The relationship between the two is central to the healing process and the goals of medicine.”
Medicine today has the capacity to achieve a multitude of effects — raising and lowering blood pressure, speeding, slowing, and even removing and replacing the heart, to name a few, says Schneiderman. “But none of these effects is a benefit unless the patient has at the very least the capacity to appreciate it,” he says.
Sources
- Nancy E. Havas, MD, FAAFP, Associate Professor, Department of Family and Community Medicine/Associate Professor, Institute for Heath and Society, Bioethics and Medical Humanities, Medical College of Wisconsin, Milwaukee. Phone: (414) 456-4318. E-mail: [email protected].
- Lawrence J. Schneiderman, MD, Founding Co-Chair, Ethics Committee, University of California, San Diego Medical Center. E-mail: [email protected].
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