Physicians no more empowered now to declare futility than 15 years ago
Futile does not necessarily mean final
An elderly female patient with advanced con-gestive heart failure (CHF) and end-stage liver disease is in your medical intensive care unit (ICU). She required resuscitation by both the prehospital ambulance staff who brought her to the hospital and by the critical care team there.
The patient’s medical condition is irreversible, and she has slipped into a coma. However, the patient’s family has refused to consider foregoing resuscitation efforts in the event that she goes into cardiac arrest. The team of physicians treating the patient believes resuscitation efforts and advanced life support are not appropriate at this point and want to provide only palliative care.
How would your ethics committee handle this dispute? Do you side with the patient’s family as the final decision makers in the absence of the patient’s ability to communicate? Do you listen to the expert opinions of the doctors treating the patient about the inappropriateness of treatment at this stage of a patient’s illness? Who has the final say?
Despite a heated debate during the late 1980s and early 1990s over the concept of medical futility — allowing a physician to declare a treatment futile and withhold or withdraw treatment over the objections of the patient or next of kin — physicians are "no more empowered to declare a treatment futile unilaterally than they were 15 years ago," argued a recent editorial in the New England Journal of Medicine (NEJM).1
Although that would seem to indicate that patient autonomy should ethically have the last word, the authors argued that this is a direct result of the medical community’s failure to establish a standard of "futility" that society would accept.
Many medical ethicists and clinicians still argue in favor of a concept of physician autonomy as well — there should be limits to a physician’s obligation to provide care that he or she believes to be of no benefit. After all, isn’t compelling a physician to perform or continue treatment that contradicts his or her clinical judgment a violation of that person’s ethics?
Advances in medical technology make it possible to prolong life in even the most critical circumstances, but the system of financing health care services constricts the health system, and these debates are continuing to take on urgency, the authors state. How will the medical community effectively marshal scarce resources to benefit society as a whole, while protecting individual rights?
Futility’ movement not futile
Steven Miles, MD, a professor of medicine at the Center for Bioethics at the University of Minnesota in St. Paul, and a staff physician at St. Paul-Ramsey Medical Center, disputes the contention that the futility debate has ended with little practical conclusions.
"The debate about nonvalidated therapies has, if anything, become more intense," he states. "A good example would be the debate about the use of bone marrow transplants for patients with advanced breast cancer. As the data have come in — that it doesn’t offer those patients anything over conventional chemotherapy — the patients’ claim on that therapy has become weaker."
Brain death is increasingly becoming the standard form of determining death, despite maintenance of a patient’s vital signs, he adds. "We have seen some examples of families insisting on prolonged life support for people with brain injury in whom survival did not occur, but, by and large, this standard has become accepted."
Miles also points to limits placed on provision of extracorporeal membrane oxygenation to patients who suffer lung failure after bone marrow transplants, and to the refusal by many institutions to use ventricular assist devices or cardiac pumps in patients with advanced CHF who are not transplant candidates, as examples where limits are being drawn.
The more complex questions — when and if to withdraw treatment from patients in vegetative states who require advanced life support — is still a difficult issue, and will remain so, he acknowledges. "But, I think the debate [over futility] is far from being over, and has become increasingly sophisticated and has ramifications all the way through medicine."
Communities develop regional policies
Indeed, entire communities, not just individual hospitals, are developing policies about when it is appropriate to restrict certain medical treatments regardless of a patient’s wishes or that of a patient’s family. Two examples are the Houston Citywide Policy on Medical Futility2 and the Guidelines for the Use of Intensive Care in Denver (GUIDe).3 Both policies outline processes for resolving disputes over treatment decisions.
The Denver GUIDe, a collaborative effort by several Denver-area hospitals and other health institutions, is developing guidelines for the use of futile or inappropriate intensive care. Subcommittees in different medical specialties (adult intensive care, neonatal intensive care, and long-term care) present proposals at plenary sessions, says David Crippen, MD, a critical care specialist at St. Francis Medical Center in Pittsburgh. He is the sponsor of the Medical Futility homepage (see Source box, p. 100), a section of an international Web site dedicated to ethical issues in critical care.
Other subcommittees (public liaison and legal subcommittees) of the GUIDe initiate dialogue with the public. Feedback from the plenary sessions, the greater medical community, and the public lead to proposal revisions.
Examples of proposed guidelines include prohibiting patients in vegetative states from being transferred into the ICU, limiting ICU admissions for patients with end-stage dementia, and prohibiting the use of cardiopulmonary resuscitation in chronically ill patients who are near death.
Although no firm guidelines have been presented to participating hospitals, Crippen feels that this process offers the best chance for resolving conflicts over "futility."
"What this effort does is change the definition of futility from an inability to maintain vital signs, and it now talks about futility in terms of multiple organ system failure of a prolonged nature," he says. "It proposes that people who have terminal organ system failure are not candidates for critical life support."
The key to this effort is that it is a community-driven policy and not an individual policy developed by a particular institution. "I think it has to be a community standard," he says. "The community should get together and define what futile means."
Unlike Miles, Crippen expresses little optimism about the medical community’s progress in developing objective standards of futility.
In his experience, most hospital ethics committees delegate the decision-making authority to the patient’s family with little or no debate.
"The ethics committee here has been very clear on that. If the patient’s family disagrees, you do what the family wants," he says. Crippen attributes this attitude to a fear of bad publicity and possible lawsuits over a decision to withhold or withdraw care, rather than an ethical preference for patient autonomy.
"If it comes down to a fight with families overmaintaining patients who cannot possibly improve on life support systems, then you are not going to find many people who are going to buck the system," he says.
Should it be the patient’s choice?
Relying on the concept of patient autonomy as the sole basis for decisions about continuing to offer critical care or medical treatments that offer little or no benefit is really a pretense, says Miles.
"We have never in the United States accepted an unlimited right to demand therapy," he notes. "To suggest that patient autonomy rules in a nation where you have 45 million people uninsured is an upper middle-class claim. You can’t walk into an emergency room and say, I have chronic diabetes and I demand to have insulin therapy.’ The claim would not be honored, and no one contends that the care must be provided."
Miles recently saw a patient who was suffering from both cancer and CHF. "She told me, Well, look, Doc, I am sharing my blood-thinner with my husband; I can’t afford both cancer chemotherapy and my congestive heart failure pill.’ The health insurance wouldn’t pay for them. So, she says to me, Is it less painful for me to die of heart failure or cancer?’ To claim that autonomy pertains to her choice is ridiculous. When people talk about autonomy in this sense, what they are talking about is the right to purchase any service."
Patients’ choices often are restricted in other instances that aren’t considered up for debate, say both Miles and Crippen. Surgeons, for example, may refuse to perform an operation on someone they deem to be a poor surgical candidate — one with a high-risk of a poor outcome.
Ethics committees must begin to face the factors that place limits on patient’s care, and develop policies that ensure that medical decisions are made ethically, says Miles. He argues that the debate over futility is not really limited to issues of lifesaving critical treatments or withdrawal of life support.
"You have to have a policy with regard to disputes over a patient’s request for therapies, where the therapy is not validated, or where it does not appear to be beneficial," he says. "What about noncovered services for insured patients? There are clearly beneficial therapies that will improve a person’s quality of life, but they are not futility issues. On one extreme, you have beneficial therapy that is noncovered, and, on the other, you have a therapy where the benefit is disputed. I think facilities should have ways of forthrightly handling these questions."
Providers resort to hiding options
Too frequently, providers may resort to hiding options from patients, both when they are options the patient may not be able to afford or when the option is one that is not seen as beneficial or appropriate by the provider, he says.
"At a minimum, there should be full disclosure that the decision [to withhold or withdraw a service] is being made, rather than it being done covertly," he notes. "Second, I think you should inform the patient if there are providers who disagree and are offering the service. And, the facility must offer a way to manage the patient while he or she explores the option of obtaining the therapy if available. Abandonment by itself is not an option. Those, I think, are the minimum criteria."
When physicians recognize that certain medical treatments or continuing treatment will have no benefit to the patient, they should initiate a discussion with the patient and/or family about the true situation and help them make the final decision, advise the authors of the NEJM editorial.
"The judgment that further treatment would be futile is not a conclusion — a signal that care should cease," they wrote. "Instead, it should initiate the difficult task of discussing the situation with the patient. Talking to patients and their families should remain the focus of our efforts."
Sources
• Stephen Miles, University of Minnesota Medical School, 410 Church St. S.E., Minneapolis, MN 55455.
• David Crippen, 1200 Centre Ave., Pittsburgh, PA 15219. Telephone: (412) 562-3292.
• Medical Futility homepage: http://ccm-l.med.edu/ futility1/.
References
1. Helft P, Siegler M, Lantos J. The rise and fall of the futility movement. N Engl J Med 2000; 343:293-296.
2. Halevy A, Brody B. A multi-institution collaborative policy on medical futility. JAMA 1996; 276:571-574.
3. Murphy D, Barbour E. GUIDe (Guidelines for the Use of Intensive Care in Denver): A community effort to define futile and inappropriate care. New Horiz 1994; 2:326-331.
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