Study surveyed nurses to obtain data
A study published in The New England Journal of Medicine suggests that patients who refuse food or fluids hasten their own demise. The article, titled "Nurses’ Experiences with Hospice Patients Who Refuse Food and Fluids to Hasten Death," provoked a strong response from the hospice community, which feared that hospices would be seen as helping patients commit suicide. The study, which appears in the NEJM’s July 24 issue, received significant media attention.
The National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA, issued the following comment to its members so they could respond to local media:
"It is important to recognize that a very small percentage of hospice patients have reportedly made this choice to forgo food and fluid to hasten death. The media may be focused on somewhat sensational headlines about hospice patients hastening their own death, but this is an inaccurate representation of the research done in this study.
"During the time period covered in the questionnaire, between 40,000 and 48,000 individuals with life-limiting illness died with hospice care in Oregon. The report that appeared in NEJM identified 102 persons who elected voluntary refusal of food and fluid within the four-year period examined in the study. Additionally, 55 patients who elected assisted suicide were identified.
"Ann Jackson, executive director of the Oregon Hospice Association and a researcher on the project, points out that the data does not pretend to accurately determine the occurrence of either assisted suicide or voluntary refusal of food and fluid. The study was developed to examine differences among patients in Oregon who elected PAS (patient-assisted suicide) and VRFF (voluntarily refuse food and fluids). It is important to put this study into the proper context."
In his interview with HealthDay, a web-based news source, Stephen Connor, NHPCO vice president of research, development and finance, was quoted as saying, "This is really very rare. I’ve been in the field 25 years, and I only can remember one case in the hospice programs that I’ve worked with."
William Lamers, MD, medical consultant to Hospice Foundation of America, estimated in remarks made to the Associated Press that he had treated only 50 such patients in over 30 years of hospice practice.
"A core value of the hospice philosophy of care centers on honoring the needs and wishes of patients living with life-limiting illness and their families," the NHPCO said. "NHPCO supports a patient’s right to choose hospice and palliative care and a patient’s right to refuse unwanted medical intervention, including the provision of artificially supplied hydration and nutrition.
"For 30 years, hospice has been providing quality end-of-life care to Americans coping with life-limiting illness. Hospice providers work with the patient and family to explore the range of concerns and fears they may have and to develop a unique care plan that addresses these concerns and honors the specific choices and wishes of the patient. Through education and support, hospices strive to serve the patient and family in a compassionate manner reflecting high-quality medical care.
"NHPCO has already heard from a provider member who received a call from the wife of one of their hospice patients who is in the process of actively dying. She read the AP story [about the NEJM study] in her local newspaper and was concerned that the situation applied to her husband. The hospice was able to explain that this was not the case with her husband, that his illness was following a natural course and he was receiving complete care in honor with his wishes and that he was free of pain."
The study’s researchers surveyed hospice nurses in Oregon regarding patients who made the choice to stop eating and drinking in order to hasten death. In 2001, questionnaires were mailed to nurses employed by all 50 Medicare-certified home hospice programs in the state, as well as two hospices in neighboring states that provide services for patients in Oregon. A total of 429 nurses received the questionnaire. Seventy-two percent of the nurses surveyed responded; among those nurses, 33% (102 respondents) reported that in the previous four years they had cared for a patient who elected to forgo food and fluids with the intention of hastening death.
Nurses reported that these patients "chose to stop eating and drinking because they were ready to die, saw continued existence as pointless, and considered their quality of life poor." Survey results indicate that 85% of these patients died within 15 days after stopping food and fluids. The quality of death among these patients, as rated by the responding nurses, was eight on a scale of zero (a very bad death) to nine (a very good death.)
The study said 31% of the patients in the reported cases were in their 80s or older. The most common diagnosis was cancer, which was found in 61% of the cases identified. Cardiopulmonary disease accounted for 16%, neurological disease accounted for 23%, 7% were coded as "other," and 1% reported missing data.
The study was designed to compare the data regarding these hospice patients with hospice patients who hastened death by means of legalized physician-assisted suicide during the same period. The conclusion of this study states: "On the basis of reports by nurses, patients in hospice care who voluntarily choose to refuse food and fluids are elderly, no longer find meaning in living, and usually die a good’ death within two weeks after stopping food and fluids."