When all's futile

On April 21, a British judge rejected the pleas of Darren and Debbie Wyatt who had fought to keep their 18-month-old daughter Charlotte alive. Doctors say Charlotte, born three months premature, is brain-damaged, in continual pain, and likely terminal. Her parents say she can see and hear to a limited extent, and sometimes smiles. While London High Court Justice Mark Hedley agreed that the baby responds to loud noises and tracks the movement of a colorful toy, he upheld an order that would allow doctors to let Charlotte die if she stops breathing.

"I am quite clear that it would not be in Charlotte's best interests to die in the course of futile aggressive treatment," Justice Hedley said.

Welcome to the world of "medical futility," a term that is part real-world health care, part bioethical babble, and wholly at the root of some of the most controversial medical cases making headlines today.

Terri Schiavo's death trained public attention on "end-of-life" issues, particularly the importance of making one's wishes known concerning life support, nutrition, and lifesaving by "heroic means." In the 2005 legislative session alone, at least 11 states-Alabama, Florida, Hawaii, Kentucky, Nevada, South Dakota, New Jersey, Wyoming, Missouri, New York, and Vermont-have considered bills that sharply restrict the withdrawal of nutrition from the disabled, or retool laws concerning living wills and surrogate health-care decision-makers.

Brightening legal lines around such issues may be Mrs. Schiavo's legacy, one perhaps more bitter than sweet. But another issue-who decides whether patients like her, those unable to speak for themselves, live or die-is growing less clear. Increasingly, some medical experts point out, clinicians rather than families or surrogates are deciding patients would be better off dead.

The pendulum of medical ethics is "now swinging toward a willingness to consider certain lives not worthy to be lived," said Gene Rudd, associate executive director of the Christian Medical Association.

Beginning last March, Donna Jandras, of Bethlehem, Penn., wrangled for 10 weeks with doctors at Lehigh Valley Hospital to do everything possible to keep alive her mother Loretta, 92, after a heart attack. But, backed by the institution's ethics committee, Lehigh's medical staff declined and placed a Do Not Resuscitate (DNR) order on Loretta's chart. Mrs. Jandras fought to have it removed. In the end, Mrs. Jandras had her mother transferred to another facility, where she died the next day.

In April 2005, the family of Spiro Nikolouzos, 68, succeeded in having him transferred back to a nursing home after a Houston hospital first removed his feeding tube, then threatened to remove his ventilator on the grounds that his condition was hopeless.

The medical profession has long held that doctors are not obligated to offer or even discuss treatment they consider scientifically futile. Over the past 40 years, light-year leaps in health-care technology have enabled physicians to save thousands of patients who couldn't be saved before.

Sometimes, those patients are breathing, but not conscious. Or barely conscious and in scorching pain. Or, like Mrs. Schiavo, conscious but profoundly brain-damaged. In a subset of such cases, patients, their families, or surrogates demand treatment doctors sincerely believe will be "futile" at best, and at worst, will harm the patient further.

"There are going to be times when a doctor, even a doctor committed to life-honoring treatment, will be expected to do something that is totally unreasonable from a scientific perspective," said Dr. Rudd. "The health-care community has to have some latitude to exercise scientific judgment."

But now, new motivations-philosophical and economic-have entered the mix: Does keeping this patient alive jibe with medical "justice," a socialistic version of legitimate concerns over the allocation of health-care resources? Will the patient have a "quality of life" the doctor deems acceptable? And under one poisonous rubric, known as "personhood theory," is the patient any longer a person at all? Meanwhile, in the context of stratospheric medical costs, the pressure to discharge patients quickly and send out a bill can affect life-or-death decisions.

At least three states-California, Texas, and Virginia-have passed laws that allow physicians to withhold or deny treatment over the objections of patients' families and surrogates. A growing number of medical facilities have installed "palliative care" units staffed with doctors and nurses who comfort instead of treat. In 2002, the number of such units had climbed to 951, or nearly one in five facilities, over 580 in 2000, according to the American Hospital Association. In addition, patient-doctor conflicts are resolved increasingly by ethics committees, some of whom lean heavily on "quality of life" and personhood theory in rendering decisions.

Meanwhile, individual hospitals are instituting policies controlling futile-care and DNR decisions. At the Medical University of South Carolina (MUSC), for example, if two doctors agree that a patient should not be resuscitated, they may issue a DNR order regardless of whether the family or surrogate objects.

When hospitals institute such policies, no announcement is made, said Wesley J. Smith, an attorney with the International Task Force on Euthanasia and Assisted Suicide. "Indeed, the first time most learn of these matters is if they come up against a desire to terminate wanted life-sustaining treatment."

When disputes arise, they look something like this: A patient's family member wants doctors to render care that the doctors deem "futile" or "inappropriate." Medical staff, chaplains, social workers, and bioethicists will first try informally to resolve the problem. If neither side cedes ground, the matter will go before the hospital's bioethics committee. If the committee nixes the care the patient's family wants, the patient is left to die, unless the family fights for a transfer to another facility, or in court.

Mr. Smith noted, the majority of physicians "are overwhelmingly dedicated to the well-being and proper care of their patients." But, he said, that doesn't mean to blindly trust, as Kay McClanahan found out.

In April 2004, Bill McClanahan, 74, a retired federal intelligence officer, took his wife out to dinner then suffered a cardiac arrest. Medics were able to revive him. But Mrs. McClanahan now charges that doctors at MUSC immediately diagnosed Mr. McClanahan as a vegetable, then consistently ignored signs of improvement, withheld treatment (even for pneumonia), and urged her to let him die.

One doctor, Mrs. McClanahan said, told her she felt "an ethical duty" not to treat Mr. McClanahan because he would experience an "impaired quality of life." The same doctor, Mrs. McClanahan says, put a DNR order on her husband's chart against her wishes. When she objected, she says the attending physician told her about MUSC's two-doctor override policy.

"Bill was looking at me, smiling at me, coming back to me, yet somebody else had decided he would be better off dead. They told me that," Mrs. McClanahan said. "It was amazing how determined they were not to be proven wrong."

Mrs. McClanahan said she felt powerless against the array of MUSC doctors, legal personnel, and ethics committee members who, she said, agreed Mr. McClanahan should be allowed to die.

MUSC Medical Director John Heffner told WORLD that according to South Carolina law, when a patient is incapacitated, the hierarchy of authority for medical decision-making begins with the spouse. He also said he did "not have knowledge of those conversations" that led to the DNR order for Mr. McClanahan.

Asked whether it was true that his staff had encouraged Mrs. McClanahan to let her husband die, Dr. Heffner said, "I don't have firsthand knowledge of that. I'm sure a lot of caring comments were made and taken out of context."

Mrs. McClanahan said Dr. Heffner "answers questions like a politician." Last month, a Tennessee internist accepted care of her husband at a hospital where, Mrs. McClanahan reports, doctors and nurses are rendering compassionate care.

The definition of "caring" is at the root of the futile-care controversy. A growing number of physicians and medical ethicists opine that it is more compassionate to live and let die than to let live. It is in part the concept of medical futility, or "futile care," that drives this.

Prior to the 1950s, doctors-carrying admittedly fewer cures in their bags-exercised total control. Regarded by many as small-G gods in white coats, they generally ordered or denied treatment they deemed fit, and patients had little voice in the matter. But in the 1960s and '70s, the concept of "patient autonomy" emerged, and a series of court cases-Roe v. Wade among them-established the general principle that Americans have a right to control what is done to their bodies. That sent the ethical pendulum hurtling toward an untenable ethic of absolute patient autonomy.

About 15 years ago, doctors and ethicists began debating the concept of medical futility, partly as a way to reclaim some authority. But the concept proved an unwieldy beast as ideas on what, exactly, constituted "futile" were as varied as the details in each patient's case file. Attempts to neatly package any set of guiding principles or protocols proved-well, futile. In 1994 the American Medical Association issued an opinion that "denial of treatment should be justified by . . . openly stated ethical principles and acceptable standards of care . . . not on the concept of 'futility,' which cannot be meaningfully defined." Acceptable standards, the AMA stated, included resource allocation and quality of life.

Today, medical literature treats futile-care theory as unworkable in practice. But the theory lives on in disguise as the literature remains rife with discussions of medical "justice" (which used to mean nondiscrimination on the basis of race or ability to pay, but now means giving preferential care to those more likely to recover), "quality of life," and "personhood."

In a 2003 study published in the Journal of Paediatrics and Child Health, David Isaacs of the Children's Hospital of Westmead in Australia concluded that "a person-centred approach [to brain death] can identify some humans, such as those in a persistent vegetative state, whose continued existence has lost value and whose lives we are not obliged to sustain."

A 2003 study by Swiss doctors found an unacceptable "cost per survivor" among intensive-care patients with hospital stays of longer than seven days. "Resource use per patient surviving the ICU was approximately 10-fold higher in patients with [a] long-term stay. . . . Further, quality of life has also to be taken into account. . . . To justify resource use for those with an extremely long stay, more needs to be known about the outcome of these individuals."

A 2005 study published in Ethics in Cardiopulmonary Medicine argues that it is not always necessary to allow a mentally competent but sedated terminal patient to participate in end-of-life decision-making. It is not always compassionate, argues author Mark R. Tonelli, to wake them up only to tell them they are dying.

When pernicious material in "the literature" reaches critical mass, the effect can be disastrous, said Christian Medical Association's Dr. Rudd, as has happened with "scientific" discussions of homosexuality, pedophilia, and assisted suicide, issues European researchers systematically destigmatized before sending them West.

American medicine now teeters on the edge of a dangerous utilitarian ethic: "Medicine has moved away from a covenant relationship to more of a contractual relationship that hinges on issues of economics and burdens on the health-care system," Dr. Rudd said. "Any life-honoring value system we still have might succumb to economic pressure. We have to shore up the value system now so that won't happen."