How We Die May Be Behind Assisted Suicide Debate

Hundreds of thousands of Americans end their lives in sorry shape: stranded in a hospital ward, in pain, sustained by machines, or treated by doctors who zealously preserve life unaware of patients’ wishes to forgo invasive life-sustaining measures.

This new plague is known to researchers as “prolonged dying,” and many health experts believe that it is the larger problem behind today’s Supreme Court hearing on the constitutional right to have doctors help people kill themselves.

“One of the main reasons the public is so enamored of physician-assisted suicide is that the current medical system is failing to adequately care for people at the end of their lives,” said Dr. Nicholas Christakis, a physician and sociologist at the University of Chicago, who opposes the practice. “What we really should be doing is eradicating the suffering rather than eradicating the patient.”

Proponents of legalizing doctor-assisted suicide also invoke America’s often deplorable end-of-life care. The plaintiff in one of the two cases before the court, Dr. Timothy Quill of Rochester, N.Y., argues that doctors would be less likely to abandon dying patients to futile measures if physician-assisted suicide were a legitimate “healing” option.

“We’ve had a pretty narrow conceptualization of healing, that it has to do with curing or treating diseases,” he said. Responding to a patient’s request for help committing suicide, he added, is “much more of a person-centered approach in some sense.”

At issue in the Supreme Court hearing today are New York and Washington state laws prohibiting physician-assisted suicide. Federal appeals courts ruled last year that such laws were unconstitutional, violating either a person’s right to “liberty” or “equal protection,” because people have a recognized right to refuse medical treatment, which could kill them.

If the court upholds either right, it would strike down laws in California and other states against physician-assisted suicide.

No social issue other than abortion has sparked more interest or debate, with more than 60 organizations filing briefs to the court for or against legalizing the practice. Regardless of their stance on that issue, medical experts generally agree on one point: As stated by the patient advocacy group Choice in Dying, which takes a neutral stand, “painful life-sustaining treatments are vastly overused among dying patients.”

About 2.5 million Americans die each year, and more than 50% of those deaths occur in an acute care hospital, according to the National Center for Health Statistics. That fairly high level of “hospitalized death,” researchers say, suggests that too few terminally ill patients are taking advantage of hospice care, which provides comfort and pain relief as opposed to invasively prolonging life, said Dr. Joan Teno, a geriatrician at the George Washington University School of Medicine.

Onerous hospitalized deaths can be made less common, researchers say. In Oregon, voters narrowly passed a measure in 1994 legalizing physician-assisted suicide, which is blocked in state court. The resulting attention to death and dying has spurred improvements in end-of-life care, said Dr. Susan Tolle, an internal medicine specialist and ethicist at the Oregon Health Sciences University.

She said only 32% of deaths in 1995 occurred in an acute care hospital, down from 50% in 1980. At the same time, 31% of 1995 deaths occurred in nursing homes and 31% in the patients’ homes. “The medical profession in Oregon is paying more attention to respecting patients’ wishes,” she said.

As other researchers point out, the existence of new forums such as George Washington University’s Center to Improve Care of the Dying (started in 1996) and the Soros Foundation’s Project on Death in America (1994) mean that dying is no longer a shunned subject.

It may also be significant that Stanford political science professor Elisabeth Hansot’s anguished story about her mother’s final miserable days hooked to a ventilator appeared in the Annals of Internal Medicine, a mainstream journal more accustomed to heralding treatments than complaining about them.

Hansot’s mother, Georgia, was 87 when a stroke landed her in a Connecticut hospital, half-paralyzed and gasping for breath. Like many Americans, she had written a living will, spelling out her desire not to be subjected to life-sustaining measures if she had little chance of fully recovering. She gave the document to her primary doctor and lawyer and appointed her daughter as legal proxy in health care decisions.

But by the time the document surfaced, a ventilator was helping her breathe, and doctors were loath to detach it, lest her death then become their doing. When she tried to pull the tube out, nurses lashed her wrists to the bedrails.

It wasn’t until Georgia’s fifth day in the intensive care unit that her daughter found they could communicate by touch. Squeezing Elisabeth’s hand meant “yes.” With a nurse as a witness, Elisabeth twice asked Georgia if she was ready to die. And twice she squeezed with all her might.

Shortly after the ventilator was disconnected, Georgia died. Hansot estimates that her five days in intensive care cost at least $40,000.

To Hansot, the root of her mother’s problem was that the doctors saw themselves as having the last word. “I would like to see a shift from having physicians as decision-makers to having patients and families” control the situation, she said.

A journal editorial concurred. The story portrays “physicians who are so preoccupied with the preservation of life that they can no longer see the broader human context of their work.”

The largest study to address the human context of dying, known by the acronym SUPPORT, involves more than 10,000 seriously ill people at medical centers in five cities, including Los Angeles. A medical ethics journal recently said it “may be the most comprehensive, ethically significant--and puzzling--investigation of death in American hospitals to date.”

A chief finding was that about half of all patients spent the end of life in what the researchers termed “an undesirable state,” including a week or so in an intensive care unit; having a physician who was unaware of wishes not to be resuscitated; or being in serious, insufficiently treated pain.

“I believe the enthusiasm for physician-assisted suicide is driven, in part, by the fear that we will receive overly aggressive care at the end of life and that our suffering may be prolonged,” said Dr. William Knaus, an internal medicine specialist at the University of Virginia Medical School and a coordinator of SUPPORT.

SUPPORT uncovered further evidence that older patients’ wishes were often ignored. Physicians write more “do not resuscitate” orders for patients over 75 than for other patients, regardless of the patients’ stated preferences, the researchers found. That hints at a possible bias against the elderly that the researchers called “alarming.”

Many researchers believe there would be less interest in physician-assisted suicide if more terminally ill people took fuller advantage of hospice care. In a study Christakis conducted of more than 6,000 hospice patients followed for over two years, he found that most patients entered a hospice program too late in their illness, after being subjected to aggressive--and ultimately futile--treatments.

Although doctors say that such patients should consider enrolling in a hospice while they have at least three months remaining, the patients in his study enrolled a month before they died.

“I think we have a good system of hospice care,” Christakis said. “But in my opinion it’s underutilized.”