A recent report on the status of end-of-life care for cancer patients highlighted several recommendations for improving the status of research and for treating patients in the last months of life. Unfortunately, it also highlighted that the questions on end-of-life care are not new and that improvements in and acceptance of palliative medicine have been slow in coming.
The results of a 1995 study by the Robert Wood Johnson Foundation on end-of-life care forced the medical community to confront the fact that there is a crisis in end-of-life care in the United States. More than 50% of patients in the last days of life had pain, their decisions at the end of life were not known or followed by their doctors, and one-third to one-half of the family members who cared for these patients were bankrupted.
The recent report from the National Cancer Policy Board of the Institute of Medicine (see News, Aug. 1, p. 1128) acknowledged that practice guidelines for palliative and end-of-life care are still in the very early stages of development and that the public does not yet have access to much of this information. Now, researchers and clinicians who work in the field are examining what can be done to remedy the discrepancies between resources devoted to cancer prevention and treatment and resources devoted to end-of-life care.
"We have not given the same amount of attention to those 60% who will die of cancer," said Kathleen M. Foley, M.D., a neurologist at Memorial Sloan-Kettering Cancer Center, New York. "We need to begin the conversation, to address the barriers, and come to a consensus as to how to provide good care for patients throughout the continuum of their illness."
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Questioning Chemotherapy
One of the most controversial questions focuses on the use of chemotherapy in the last stages of cancer treatment. Used in the last stages of treatment, chemotherapy may give oncologists the sense that they are "actively fighting" a devastating disease, and it may give patients and their families hope for a cure. But chemotherapy may not always be the most preferable choice.
"In many cases it has been easier to give the patient chemotherapy than talk about end-of-life issues," Foley said. "Its not anyones faultit is the way our culture isbut treating cancer is about caring for the patient, not just treating for a cure."
Ezekiel J. Emanuel, M.D., Ph.D., chief of the Department of Clinical Bioethics at the National Institutes of Health, recently looked at the amount of chemotherapy given to patients in their last months of life. "We need to have some focus on why we are using chemotherapy at the end of life," he said. "Is it appropriate?"
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Matching Medicare records with 1996 Massachusetts death certificates, Emanuel and his colleagues identified 7,919 Medicare fee-for-service patients whose deaths were attributed to cancer. They found that 41% of the patients had received chemotherapy in the last year of life; 26% had chemotherapy in the last 3 months; and 14% in their last month of life. Younger patients in the group (aged 6574 years) were more likely to have received chemotherapy than older ones (aged 7584 years). Patients who received chemotherapy had higher medical costs in the last year of life than those who did not: $38,308 vs. $27,567.
Some experts cite a lack of solid treatment guidelines for end-of-life care as a reason for the high discord, but Emanuel acknowledged that "We have some good guidelines now, especially in pain management, but for the overall scheme, we are still behind the eight ball."
Hospice Care
In fact, other solutions, notably hospice care, may be far more helpful. "Hospice is an underutilized Medicare benefit, and most cancer patients who get it come into the system very late, after they have exhausted chemotherapy treatments," said John W. Finn, M.D., president of the 1,600-member American Academy of Hospice and Palliative Medicine and vice president of medical affairs for Hospice of Michigan.
He noted that oncologists often do refer patients to hospice, but families do not always follow their recommendations. Family members are often the ones making decisions about hospice care, while at the same time juggling emotional issues and economic ones. Many patients and their families see entry into hospice as giving upabandoning the fight.
"Financially, most health insurance plans have hospice benefits, but they are capped, so many families dont want a sick member to get into hospice too soon and exhaust them," Finn said. "This is especially true with younger patients who do not have Medicare benefits."
Emanuels study suggested that patients who spend more time undergoing last-ditch chemotherapy treatments are spending less time in hospice care, where they may be able to have a better quality of life in their last days through symptom management. The researchers noted that 33% of the patients studied received hospice care in the last months of life, and 16% received both chemotherapy and hospice care. Patients who received chemotherapy in the last 3 to 6 months of life entered hospice 12 days later than patients who did not have chemotherapy in the last year of life. The average length of stay in hospice was 30 days.
"Basically, we are selling a product that the public doesnt want," Finn said. He noted that according to an often-quoted Gallup poll, 88% of Americans said they would prefer to receive care and die at home if they had less than 6 months to live. However, there is a big disparity between the wish and the reality. At present, 61% of all Americans die in hospitals, 17% die in nursing homes or hospice, and 22% die at home, many with some sort of hospice care, Finn said.
Education
Foley said she believes that the current knowledge of pain management has taken palliative care to new levels. "Palliative care is high-tech and aggressive care, but the public needs to be made aware of it," she said.
She pointed to expanding awareness in medical education: There are now 19 palliative care fellowship programs in the United States at major cancer centers with more in the works, and educational programs for nurses and physicians in end-of life care have been developed. Education for Physicians on End-of-Life Care (EPEC) is a new program developed by the American Medical Association with the support of the Robert Wood Johnson Foundation to raise physician consciousness of these issues.
Still, the IOM report noted that such programs are "small and funded largely by private grant-making organizations, with little contribution by the federal government." (Several of the boards recommendations included improving educational efforts for both patients and physicians.)
The basic building block for change is the dialogue that takes place between doctor and patient. Newer treatments enable physicians to keep their cancer patients alive longer, and most oncologists get to know their patients and their family members and caregivers well over the course of cancer treatment.
"In my practice, end-of-life issues are brought up in a series of conversations over a period of time, and I initiate them while the patient is still receiving treatment," notes Debra Schrag, M.D., clinical oncologist at Memorial Sloan-Kettering Cancer Center. "Its a sunny day right now. What are we going to do on a cloudy one?"
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