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Can Research Help?
Symposium Explores Dying on One's Own Terms

By Linda Cook

On the Front Page...

A well-attended symposium, "The End of Our Lives: Guiding the Research Agenda," was held recently on the NIH campus. Sponsored by the newly formed NIH End-of-Life Research Interest Group, the symposium addressed many of the complex issues involved in this area. For example, there are those who argue for a "good death" versus those who believe in aggressive life-prolonging measures. And there are those who advocate euthanasia and assisted suicide, stimulating a national debate on these controversial ways to end one's existence. Addressing these and other quandaries, symposium participants identified areas of research to improve the way people die in the United States.

Continued...

Clips of patients' and families' personal experiences of the end of life from the highly publicized PBS documentary On Our Own Terms: Moyers on Dying were used to illustrate points made by the speakers as they addressed the role of technology, the impact of palliative care, ethical issues, and ethnic and cultural considerations — areas ready for research.

In introducing the program, Dr. Patricia Grady, director of the National Institute of Nursing Research, which coordinates NIH's end of life research efforts, said that "although this is a relatively new area of inquiry, the number of institutes and centers already involved in end of life and palliative care research is evidence of the wide swath this research cuts in the biomedical and behavioral fields." She also commended the newly formed interest group, whose members include NINR, the National Institute on Aging, the National Center for Complementary and Alternative Medicine and the National Cancer Institute.

Dr. Thomas Smith, professor and chair of the division of hematology and oncology at the Medical College of Virginia campus of Virginia Commonwealth University, discussed the value and costs of technological interventions. He said that patients are more demanding and want every possible avenue to be taken. New technologies to extend life, however, have been estimated to increase costs by 27 percent. "But if care at the end of life is standardized in an institution, costs can be reduced by about 10-15 percent without sacrificing quality," he said. Smith predicted that cost pressures will get worse because of increased drug prices, while quality will continue to take a back seat unless action is taken. "Lots of research is needed, and fortunately, it's doable," he emphasized. "Our own research has shown that end of life care costs can be significantly reduced by coordination, standardization and use of expert caregivers."

Offering a definition of palliative care, Dr. Ann Berger, chief of the new pain and palliative care service at the Clinical Center, explained that "this type of care emphasizes active and compassionate therapies focused on physical, psychological, social and spiritual needs of the patient, family and caregiver." To be effective, a collaborative and interdisciplinary approach is essential. She quoted Dr. Joanne Lynn of Americans for Better Care of the Dying, saying, "It is really about living with a disease that is going to kill you — about good living on the way to death." In other words, palliative care should begin at the time of diagnosis and be used throughout the disease trajectory — not just at the end of life.

 

As a nurse, physician and breast cancer survivor, Berger has had considerable experience with advance directives, where patients indicate to relatives, caregivers and healthcare professionals how they wish to be treated during the final phase of life. She herself would not be without one. But she said things are different when one is truly dying than when one is well — when advance directives are typically written. Research is needed to help people make decisions in advance that will guide their care, yet be flexible enough to adjust to changing preferences.

Dr. Christine Grady, of the department of clinical bioethics at the Clinical Center, referred to an Institute of Medicine definition of a "good death" as one that is free from avoidable distress and suffering for patients, families and caregivers. A good death is also in general accord with their wishes and reasonably consistent with clinical, cultural and ethical standards. "We must find answers about how well we understand, predict and reduce suffering and prepare people for the end of their lives and for death," she said. "And we must know how well we follow patients' and families' wishes." Mentioning data from the Netherlands, Grady said that even though euthanasia and assisted suicide are accepted, only about 3 or 4 percent of people who die choose these methods. She also discussed findings from a study by the Clinical Center's Dr. Ezekiel Emanuel, chief of bioethics, which indicates that contrary to popular belief, pain is not the major motivating factor for assisted death. Rather, it is depression and worry about being a burden. "We need to know which people are at risk for such psychological distress and suffering," Grady said.

Regarding advance directives, Grady indicated that although four-fifths of Americans think they are a good idea, only one-fifth actually have them — and only half of those discuss the contents with their physicians. In addition, physicians do not always follow directives. Research on ways to improve the communication and decision-making process is clearly important.

Although ethnic and cultural differences exist at the end of life, according to Dr. Richard Payne, chief of the pain and palliative care service at Memorial Sloan Kettering Cancer Center, there are also similarities across populations. "Everybody wants the same thing when it comes to end-of-life care," he explained. "No one wants to die alone. They want to be free of physical symptoms to the extent possible. And they don't want to burden their family."

Payne described barriers to end-of-life care faced by African Americans. One barrier is suspicion, illustrated by an African-American pastor who said, "A generation ago my father could not set foot in this hospital. How am I to really believe this hospital has my best interests in mind now?" When the pastor asked how many other African-American physicians were at the hospital, Payne had to respond, "Very few."

In 1999, less than 10 percent of the 700,000 patients receiving hospice care in the U.S. were African American — this despite their higher death rates from cancer and AIDS, and their entering the healthcare system at a later stage of the disease. Medicare costs are higher than for whites — $32,000 per African-American patient compared with $25,000 per white patient. Perhaps this is because more African Americans die in the hospital. "If anything, African Americans should be over-represented in palliative care and end-of-life programs," Payne said.

He highlighted the need for research on basic epidemiological issues such as defining regional and national use of hospice and palliative care services in different minority groups, and in socioeconomic classes within these groups. More must be known about minority patients and health care providers' preferences at the end of life. Demonstration projects are needed on effective models of care. And understanding why African Americans' costs to the healthcare system are greater is another critical area of inquiry.

During the question and answer session, Payne raised the issue of natural death versus resuscitation. He pointed out, for example, that people need to better understand the positive and negative effects of feeding tubes and respirators. Berger stressed education and symptom management early on in an illness.

The audience and panel discussions ranged from respect for the dignity of patients; under-treatment of pain; problems with advance directives; the conduct and possible intrusion of research in end of life settings; and lack of knowledge about treatment of fatigue — to enrolling patients in hospice care, particularly those with heart failure; the difficulty of predicting the end of life; assisted suicide; alternative therapies, education of pastors and patient denial of the approach of the end of life. At the event's conclusion, it was obvious that end-of-life issues are numerous and complex. Research on many fronts, directed at people of all ages and ethnicities, is needed to improve the quality of life at life's end.


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