February 6, 2001

Skipper Chong Warson

re most terminally ill patients hopeless, or are they determined to hang on to every last moment they have? These are questions most people don't want to have answer for themselves until the time comes. Scientists interested in end-of-life issues, however, have been studying these questions to improve palliative care for all.

The most recent study on death and dying in the terminally ill indicates that people's reaction to impending death varies widely, and that care for the dying should take into account patients' changing moods and needs. And while these results may be unremarkable for their common-sense determinations, this study was the first to quantitatively map a shifting impulse in dying patients: the will to live. Results were published in the British medical journal the Lancet late last year, and the findings may serve to improve the health care industry's response to terminally ill patients.

Researchers tested 168 patients at the Riverview Palliative Care Center, in Winnipeg, Canada, on a wide scale of emotional and physical responses to their end-of-life situation. Harvey Chochinov, M.D., Ph.D., professor of psychiatry and family medicine at the University of Manitoba's Division of Palliative Care, led the study. Using a modified version of the Edmonton Symptom Assessment Scale -- which is commonly used to measure palliative care patient responses -- Dr. Chochnov's team measured pain, anxiety, breathlessness, nausea, depression, and well-being, and added a visual analog for the somewhat nebulous question of patients' "will to live." For three years in the late 1990s, dying patients were screened for an average of 27 days using these measures.

"... by the end of life, over half our patients still had a strong will to live -- even 24 hours before death. It's a very powerful urge that speaks to the resilience of the human spirit."

Dr. Chochinov declares that the study showed that "by the end of life, over half our patients still had a strong will to live -- even 24 hours before death. It's a very powerful urge that speaks to the resilience of the human spirit."

Even when death approaches, Dr. Chochinov explains, the will to live seems to fluctuate. Among the newer hospice patients in the study, anxiety -- possibly caused by the transition from home the hospice center -- accounted for most declines in patients' will to live, reports Dr. Chochinov. Throughout the second week of hospice care, anxiety often shifts to depression, which diminishes a patient's will to live.

Depending on the cause of the terminal illness, emotional issues segue into physical distress -- possibly reflecting medicine's current limitations in pain control and/or psychological care. "Pain can be controlled over 90 percent of the time in a palliative care facility, but some other symptoms are harder to treat," comments Dr. Chochinov.

Other survey findings match

Dr. Chochinov is not the only doctor researching ill patients' feelings about dying. At the Memorial Sloan-Kettering Cancer Center, in New York City, patients are surveyed about what they would want if facing a terminal illness: physician-assisted suicide? pain relievers?

"Many palliative care patients at Sloan-Kettering say they would not want to go on with their lives if they were paralyzed. We've found, however, that if it happens, they usually discover their legs are not so important -- their brain still works," comments Kathleen Foley, M.D., attending neurologist at Sloan-Kettering. "That shift in response shows they can tolerate something they said they never could and that they now see being alive as more important than the ability to walk."

Dr. Chochinov's findings at the Winnipeg Riverview Palliative Care Center underscore that change in patients' attitudes, no matter the stage of illness. "The fact is that we don't really know what people will choose until they are there," explains Dr. Foley, a director of the nonprofit group Project on Death in America, which supported Dr. Chochinov's study. "One patient said to me, 'I've never died before. I don't know what it will be like,' " says Foley. "As their illness progresses, we've found that they adapt."

Dr. Foley feels the Winnipeg study results can be easily applied at hospitals that care for terminally ill or seriously ill patients. "We can all pay increased attention to patients' psychological distress, knowing the sense of hopelessness is unpredictable and changes with the symptoms."

Acceptance in the face of compassion

Dr. Chochinov sees many potential benefits from his research. Health care providers, he hopes, will realize that the will to live in dying can be tracked and understood, and that it fluctuates in response to stresses. "In medicine, outcome measures are important. One thing that might help advance end-of-life care is to track what we're doing and see what does or doesn't work. For instance, are social and psychological interventions available to terminal patients? Are we providing the best quality of care at the time of death? If we're more sensitive to their physical and psychological needs, we can intervene more appropriately. By understanding fluctuations in will to live, we can begin to develop quality-of-life interventions to improve patients' final days."

Can a study like his inform social policy makers, particularly when it comes to euthanasia and other controversies facing dying patients and their families? "Our data show that the will to live may undergo a great deal of fluctuation. Any consideration of policy regarding hastened death needs to take into account that will to live is a highly variable construct," warns Dr. Chochinov.

Dr. Foley believes the health care industry should take a cue from the results of Dr. Chochinov's study. "Sick patients with enormous needs benefit from and require family support, home care, and good symptom control. The health care system has to provide these things," she stresses. "This study begins to break down the barriers to understanding these issues. We hope that by opening up and talking about them, we'll provide better care and treatment."

Related link:

• Rx.magazine feature story: Why is Hospice Hidden?

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