End-of-Life Issues
A disturbing-but extremely important-series of articles was just published in the November 15, 2000 issue of The Journal of the American Medical Association. It focused on care at the end of life.
According to a survey appearing in the issue, freedom from pain is the primary factor that people consider important at the end of life. A team of researchers led by Dr. Karen E. Steinhauser of the Veterans Affairs Medical Center and Duke University in Durham, North Carolina surveyed 1,462 seriously ill patients and found that pain management was their most important priority, followed by being at peace with God and being with loved ones.
Other areas that ranked high in importance included good patient-physician communication, being prepared for death, and achieving "closure." Items that were considered important by patients but less so by physicians included being mentally alert, not being a burden to others, and having time to plan funeral arrangements. Interestingly, the researchers also found that dying at home was not a priority.
"People don't fear death," said Steinhauser at a press conference announcing the survey findings. "They fear bad dying."
In a second article in that same Journal issue, Dr. Timothy Quill of the University of Rochester in New York reported that physicians are often reluctant to discuss important end-of-life care issues with patients. Such discussions need to take place early and often with seriously ill patients, Quill contends, yet physicians are often reluctant to bring up such issues. This leads to overly optimistic prognoses that do patients more harm than good, says Quill.
But while physicians generally agree that end-of-life discussions are frequently brought up too late, there is considerable uncertainty about exactly when they should bring up such topics with their patients. Furthermore, the use of medical teams-rather than individual physicians-often leads to "uninformed decision-making" about care options and a sense that "no one is in charge of the whole person."
In another article, Quill and colleagues participating in an End-of-Life Care Consensus Panel touched on issues and myths surrounding advance directives and other legal options that physicians should discuss with patients and their families. They highlight the common misconception that advance directives are valid only if written on an official form and used in the state in which they were drawn up. (Not necessarily true.)
Another pervasive myth, especially among patients, is that physicians must confer with hospital risk managers before making end-of-life decisions. While some hospital policies require this, no legal requirement exists. In fact, the authors argued, while the goal of risk managers is to minimize an institution's liability, this may run counter to the medical and ethical objectives of the individual patient.
Finally, an article by Dr. Ezekiel Emanuel of the National Institutes of Health's Warren G. Magnuson Clinical Care Center in Bethesda, Maryland, focused on the contentious issue of physician-assisted suicide or euthanasia.
Emanuel and colleagues first interviewed 988 terminally ill patients and 893 of their caregivers. Then, two- to six-months after the first interviews, they re-interviewed 650 patients who were still alive and 256 of their caregivers. At the time of the initial interview, 60.2 percent of the patients supported the concept of euthanasia, but only 10.6 percent said they had seriously considered it for themselves.
By the second round of interviews, half the patients who initially said they were considering ending their lives-36 people-had changed their minds. Conversely, 29 patients who had expressed no previous interest in euthanasia now considered it as an option.
Of the 256 patients who died before the second interview, one died from physician-assisted suicide, one unsuccessfully attempted suicide, and another asked to end his life but was refused by his doctor and family. All of these patients were over age 70 and all had cancer.
Emanuel called the percentage of patients who seriously considered euthanasia "extremely small." He said that those who seemed depressed were five times more likely to start consider this life-ending option. Also, patients who suffered from shortness of breath or had more caregiving needs were more open to the idea of physician-assisted suicide.
On the other hand, African-Americans, patients who described themselves as religious or Catholic, those over age 65, and those who said they felt appreciated seemed to show less interest in ending their lives, said Emanuel.
A recent article in the British medical journal The Lancet found that the "will to live" in elderly cancer patients with advanced disease can fluctuate widely over the course of a day, a week or a month. According to lead author Dr. Harvey Chochinov of the University of Manitoba in Winnipeg, Canada, the best predictors of "will to live" included pain, depression, anxiety, shortness of breath, and overall sense of well being.
When living with advanced disease, simple day-to-day activities once enjoyed can at times be more difficult, occasionally even overwhelming. There will be good days and bad, just as before. But life has changed; priorities have shifted.
And yet, the reality of advanced disease must always be balanced with the dizzying array of revolutionary treatment advances now emerging from clinical trials.
SOURCES:
Journal of the American Medical Association, November 15, 2000; 284:2476-2482
Journal of the American Medical Association, November 15, 2000; 284:2495-2507
Journal of the American Medical Association, November 15, 2000; 284:2460-2468
The Lancet, September 4, 1999; 354:816-819
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