Patients Kept Alive Despite Their Wishes, Study Finds : Health: A follow-up effort tried to avert the problem with the intervention of nurses. That experiment failed.
Although no one looks forward to spending the end of life in pain, hooked to a medical machine or tended by a doctor largely ignorant of one’s wishes, that was the fate of about half the seriously ill patients in the largest study ever conducted of how hospitalized Americans die.
The 10-year study of 9,105 patients in five hospitals nationwide, including UCLA Medical Center, found that a surprising number of people were subjected to aggressive medical treatments they didn’t want, dehumanizing them precisely when their humanity was most precarious.
In addition to documenting the vast extent of “prolonged dying,” as the researchers call it, the study also tried--and failed--to avert the problem by having trained nurses repeatedly interview thousands of patients and relay their wishes to doctors.
Based on the findings, the researchers suggest that hundreds of thousands of Americans annually are held captive by a sort of malignant medical imperative, in which doctors insist on wielding lifesaving tools that often are worse than futile. “The system doesn’t know how or when to stop,” said one of the study’s coordinators, Dr. William Knaus, a critical-care physician at George Washington University Medical School.
“It really shows that we’re too focused on intensive care, when what many of these patients needed was intensive caring ,” said Dr. Neil Wenger, a UCLA physician involved in the study, which appears in today’s Journal of the American Medical Assn.
Among the humane and dignified alternatives to high-tech medical heroism, researchers and patient advocates say, are at-home nursing care with therapy directed at pain relief and comfort rather than prolonging life unrealistically.
The first part of the study began in 1989 and involved 4,300 people hospitalized with grave diseases such as advanced colon cancer, cirrhosis and congestive heart failure. The researchers spoke with patients when possible, analyzed their medical records and interviewed family members and physicians.
Overall, half of the patients who died ended up in what the researchers called an “undesirable state”: stranded in an intensive care unit, attached to a ventilator or lapsed in a coma. In addition, family members reported that 50% of the patients spent most of their last few days in pain.
The basic shortcoming, researchers say, was that patients didn’t forcefully express their end-of-life medical choices--such as whether to be kept breathing via machine--and doctors failed to ask. Of the patients who said they didn’t want to be resuscitated, only 47% had a doctor who was aware of that preference.
“A prolonged mechanical death isn’t the failure of the machines,” Wenger said. “It’s the failure of the health care system.”
In the second part of the study, begun in 1992, the researchers tried to overcome the failure to communicate that they believed was the root problem. Among other measures, nurses assigned to 2,652 hospitalized patients conducted as many as six interviews, Knaus said, to help patients understand and express treatment options, which were passed along to doctors.
Despite high hopes that this would stop runaway medical therapy, those patients who died were no less likely to do so in an undesirable state than a comparable group of patients who were not seen by nurse go-betweens. Knaus said he was “shocked” and “depressed” by that failure. “Here we were trying to do just the right thing and it didn’t work,” he said.
One possible reason for the study’s failure, said Dr. Bernard Lo, a UC San Francisco medical ethics specialist, is that doctors are notoriously reluctant to take orders or advice from nurses. In an editorial in the AMA journal, Lo suggests that the key to satisfying patients’ wishes is getting them and their doctors to talk directly with one another, not through a nurse liaison.
Knaus predicted that health care consumers will have to take the initiative to improve the care of terminal patients, much as women revolutionized childbirth years ago by demanding that it be less high-tech and more personal.
Also, he said, correcting the problem will have to involve insurance companies, which are reluctant to pay for low-tech and relatively comfortable services such as nursing care in the home. “Right now, the financial incentives in health care are for intensive hospital care,” he said.
While the study, known by the acronym SUPPORT, is unusually grim, saying that the results “cast a pall” over attempts to improve “a troubling situation,” patient advocates caution against defeatism.
Anna Morretti, staff attorney for New York-based Choice in Dying, said numerous people have taken steps--such as filling out advance medical directives and discussing alternatives with doctors ahead of time--to ensure a “peaceful, dignified death not attached to a machine and in the company of loved ones.”
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Advice on End of Life Choices
To try to avoid spending one’s last days in pain, isolated in an intensive care unit or attached to a medical machine, patient advocates recommend filling out a living will or durable power of attorney.
But they emphasize that one’s treatment preferences should also be discussed with family members and physicians ahead of time.
Here, organizations that offer guidance on end of life choices.
* Choice in Dying Inc. New York City: 800-989-WILL
* California Health Decisions. 505 S. Main St., Suite 400, Orange, Calif., 92668-4585. $5.39 for a durable power of attorney kit.
* Legal Counsel for the Elderly. American Assn. of Retired Persons. P.O. Box 96474. Washington, D.C. 90090-6474. $5 for a guidebook on advance medical directives.
