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When all's futile

Medicine | Utilitarian medical ethics, high costs, and bio-babble all drive controversial health-care decisions in the post-Schiavo era

Issue: "An evolving debate," May 21, 2005

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.

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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.

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