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July 2, 1998Nothing is more certain than death, but few things raise more questions than health care at the end of life. As medical advances expand treatment options, patients and clinicians increasingly disagree about whether those interventions are beneficial. To help them maneuver through ethical land mines, many hospitals are developing medical futility guidelines to help resolve disputes equitably. But critics argue that the policies are anything but fair.How far do patients’ rights extend? When should we let a patient die? These are the core questions that hospitals grapple with when they consider nonbeneficial treatment (a term many prefer to as futile treatment). Health professionals are sometimes “put into positions where ethically they feel that the prudence of carrying out specific courses of treatment is not humane or respectful of patients’ dignity,” said Ross Landess, MD, chief medical officer for Alexian Brothers Hospital in San Jose. The facility implemented its nonbeneficial treatment policy in February 1997. Landess believes the policy is often applied in principle in end-of-life care, but the hospital has not yet had to override a patient’s or family member’s desire for a particular intervention.changing timesThough no one knows how many hospitals have medical futility guidelines, the trend seems to have started around 1990, according to the Rev. John Paris, a professor of bioethics at Boston College. Until that time, the treatment model was fairly paternalistic. Physicians dictated treatment with little input from patients. Families sued to terminate medical care that physicians and hospitals wanted to impose against their wishes or those of the patient. Paris thinks patients right to terminate unwanted care was fairly well-established with the 1990 Supreme Court ruling in the case of Nancy Cruzan. The verdict gave her parents the right to disconnect the feeding tube sustaining their daughter, who had been in a persistent vegetative state for years. In 1991, the federal Patient Self-Determination Act was passed, which established advance directives. “Then suddenly, we find a new phenomenon: families demanding treatment and aggressive interventions that physicians believed were inappropriate,” Paris said.The timing parallels a shift from fee-for-service to managed care, said Wesley J. Smith, a consumer advocate, hospice volunteer, and lawyer for the International Anti-Euthanasia Task Force. “Back when the financial incentive was fee-for-service, the prevailing medical ethic was to do everything you can to keep people alive as long as you can,” said Smith, the author of Forced Exit: The Slippery Slope From Assisted Suicide to Legalized Murder (Random House Times Books, 1997).Managed care changed things, said Diane Coleman, JD, founder of Not Dead Yet, a national disability rights organization. “Every time health care is provided in a managed care environment, there is a decrease in the profit on the bottom line,” she said.Yet managed care itself is not the issue, according to Don Nielsen, MD, senior vice president for quality leadership at the American Hospital Association. “I think there have always been issues about death and dying and medical futility even before the issue of costs was raised,” he said.consumer mentalityPeople do not have the right to demand treatment that medical professionals deem inappropriate, Paris said, no matter what their financial situation. “It’s not like going into Kmart and buying whatever’s on the shelf whether you need it or not,” he said. Physicians should not be required to provide care that is beyond the scope of their skill or judgment. “I think it’s patient autonomy run amok,” Paris said.But why shouldn’t patient autonomy be equally valid whether a patient is refusing or requesting care? “When people want to choose to die, we respect autonomy,” Smith said. “When people want to fight to live, we don’t respect autonomy. That’s ludicrous.” Medical futility policies are an unwarranted return to the paternalistic system, Smith said. “It’s reintroducing the game of ‘Doctor Knows Best.’ “clinicians suffer tooPatients and families need to realize that providing inappropriate care affects health professionals as well, said Meg Campbell, MSN, RN, a nurse practitioner at the Detroit Receiving Hospital and an advisory board member of the American Nurses Association Center for Ethics and Human Rights. “It’s not humane or compassionate to provide painful procedures when there can’t be a benefit. It’s demoralizing for physicians and nurses,” she said.Campbell helped write her facility’s guidelines for nonbeneficial treatment. “The usefulness of the policy, in my opinion, is that it provides a process that the clinician might not have ordinarily thought about doing,” she said. Though the plan has been in place since 1995, Campbell estimates clinicians get to the point of deciding whether to override a patient’s or surrogate’s wishes only two or three times a year. “Most of the time, with effective communication and mediation skills, we’re able to resolve the difference of opinion,” she said.consent vs. coercionCommunication is the key to Alexian’s policy as well, according to Terril Lowe, RN, vice president for nursing services. Without a policy, “you have a much worse situation because you have families, physicians, and caregivers with no guidelines to even initiate conversations around,” she said.Some policies outline a process for dealing with disputes rather than actually defining futility. That’s the case at Hermann Hospital in Houston, which last year adapted the Houston City-Wide Guidelines on Medical Futility for its own use. Hermann hasn’t invoked its policy yet, but the staff came close once, said Ginny Gremillion, director of patient relations. “Fortunately, our physician was able to speak with the family involved in a way that they understood that the care was not ever possibly going to be beneficial to the patient,” she said. With the family’s consent, life support was removed and the patient died.Smith fears that patients and their families may approve the discontinuation of care (whether or not a policy is invoked) because they feel compelled to do so by hospital personnel, rather than because they truly agree with them. “I’ve talked with people who’ve gone through these processes,” he said. “It’s called pressuring the patient to do what the doctor wants.” The most vulnerable, he said, are the elderly and those with pre-existing disabilities.Gremillion is confident that Hermann’s policy has sufficient checks and balances. “We have no concerns that this would be applied indiscriminately,” she said. “By the time you invoke the futility policy, it’s no longer about an ethical dilemma. It’s not about resources, it’s not about finances—it’s about medical appropriateness or inappropriateness of continuing a certain track or certain treatment.”futility of what?Julie Grimstad, a former nurse and director of the Center for the Rights of the Terminally Ill in Hurst, Texas, is not as confident. “When they talk about futility, a lot of times the sense I get is they’re saying the life is futile, not the treatment,” she said. She thinks that medical futility polices are designed for one reason: cost containment.Ideally, issues of the appropriateness of care should be resolved without consideration of payment, according to Paris. “But if philosophically and rationally we don’t get to it [a decision], then economics will force us to it,” he said. “With an enormous range of technology that is very expensive and unlimited demand on the part of families, the costs exceed anyone’s capacity to pay it.”Gremillion insists that Hermann’s policy is not motivated by the bottom line. She said that, hypothetically, a procedure could be deemed futile even if an insurance company were willing to pay for it. “Money is not an issue. Something is not ethical or nonethical based on whether it can be paid for,” she said. “We wanted to make sure that these issues did not have to do with finances.”Critics like Smith still worry that, despite assurances to the contrary, futility policies are just the beginning of healthcare rationing to those deemed undesirable to society. “Futile care—giving antibiotics for viral infections—happens all the time,” he said, even though the practice likely contributes to proliferation of drug-resistant bacteria. “No one is up in arms about that kind of thing that happens on a routine basis, because the people who are being treated aren’t seen as futile.”Controversy is likely to surround medical futility policies for quite some time. El Camino Hospital in Mountain View is just beginning to develop its own policies. People spoke passionately both for and against such policies at the first public forum in May, according to Judy Gallagher, MS, RN, vice president for patient care services. She anticipates years of information gathering and revision before the hospital comes up with a final plan. But even then, she does not believe the debate will end. “I think there will always be differing opinions,” she said. “I think this issue will be wrestled with even after a policy and guidelines are established.” |
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