University Reporter: January, 1999
End of Life Care Research Sheds Light on Issues of Dying
Because of advances in technology and improved techniques of diagnosis, more and more of us will know that we're going to die before we do - - and we can anticipate more decision-making at the end of life rather than less, says Brian Clarridge, senior research fellow of the Center for Survey Research (CSR), who has investigated four studies on end of life issues since 1994.
Several issues - - including the role of managed care, the legal and ethical issues around euthanasia and physician assisted suicide*, and how doctors manage transitions to palliative care for patients who are terminally ill are factors in how we die. In addition, says Clarridge, philosophical questions, such as "What is a good death, and how is that achieved?" are also critical to explore.
In one study of terminal care Clarridge conducted with Jack Fowler Ph.D. and Ezekiel Emanuel, M.D., Ph.D., questions such as what characterizes a good or bad death, what obstacles prevent a good death, and what factors make the process go well, were asked of 80 participants in 10 focus groups. Four overlapping "domains" - - psychological, physical, social and spiritual - - in which certain needs must be met in order to have a good death, were identified. "The domains embrace the issues confronting people before they die, and finding ways to address those issues," says Clarridge. Terminally ill persons, caregivers, significant others, well elders, pastoral caregivers, and health care professionals participated.
A different study sponsored by the American Cancer Society, "Assessing Attitudes of Patients, Physicians, and the Public Towards Euthanasia," consisted of interviews with 700 cancer patients, physicians, and members of the public. Participants responded to vignettes describing end of life scenarios, focusing mainly on physician-assisted suicide and patient-requested euthanasia. Among the findings: two thirds of cancer patients and the public found euthanasia and physician assisted suicide to be acceptable if the patient experiences unremitting pain, while in no vignette presented, did more than half the physicians find it to be acceptable. Patients with depression, rather than pain, were more likely to discuss ending their lives. Physicians were asked if they had helped any patients end their lives - - the first U.S. data on the frequency with which physicians actively help their patients die - - resulting in the finding that one in seven had done so.
A study sponsored by the American Society of Clinical Oncology looked at how member physicians work with patients who have six months or less to live. A fourth study followed 300 terminal cancer patients, interviewing them on issues such as plans for care at the end of life, the care they receive, and the degree to which their wishes have been communicated.
After four years of work on the topic, Clarridge says that end of life issues continue to hold great research promise. "With appropriate attention, I believe we can have fewer horror stories about a bad end compounded by bad care management. There is hope of making societal changes. It's a topic with a lot of work going on, and it will continue because there is a real need to explore it, especially in health care management."
Clarridge and Fowler, also a senior research fellow at CSR, collaborated with researchers from the Dana Farber Cancer Institute, Brown University, and the Picker Institute of Boston on these studies.
*Physician-assisted suicide is defined as a patient's choice of suicide, for which a physician may provide instructions or pharmacological means to end the patient's life. Euthanasia is the active delivery, upon the patient's request, of medication or other means to end life.