Culture plays big role in palliative medicine
Medicine knows too little about the process of dying. This was among the conclusions reached by a National Institutes of Health (NIH) consensus panel on end-of-life care convened in December 2004.
"Events surrounding end of life are poorly understood, leaving many Americans to struggle through this life event," the panel of experts on death and palliative care wrote in a preliminary report.1 "Ambiguity surrounding the definition of end of life hinders the development of science, delivery of care, and communications between patients and providers," the panel noted.
For medicine to better address death, the culture at large needs to "embrace death," says Barbara Koenig, RN, PhD, senior research scholar and executive director of the Center for Biomedical Ethics at Stanford University in Palo Alto, CA.
Understanding when end of life occurs
The NIH consensus panel wrote that medicine and researchers should abandon some long-held ideas about the end of life — including the notion that there is a clearly defined end to life. "There are individuals for whom identification of end of life is relatively clear; however, data support that this is relatively uncommon," the consensus panel wrote.
And although our culture demands that a time of death be noted officially, NIH experts are of the opinion that data demonstrate "it is not possible to accurately predict an individual’s time of death."
Koenig says our ways of looking at death — the most absolute medical condition that all humans share — makes little sense when compared to how we view other medical care. "For most people, death is a complex thing, and they have a hard time embracing their death," she says. "You have to embrace the idea of your death. It’s a counterintuitive thing, but it affects all of us."
Although death is inevitable, Koenig says, many aspects of dying are left to choice, rather than to good palliative or end-of-life care. "For example, if you fall down in the street with a heart attack, the system takes over," she explains. "You don’t have to invent the idea of an ambulance to come take you to the hospital. We have a set of shared assumptions on how to take care of that. But there is no comparable default system in place for the huge problem of end-of-life care. We need a system where the defaults are to provide good palliative or end-of-life care."
The NIH panel report states that cultural issues and consistent delivery of care to all populations should be major topics addressed in upcoming research.
Koenig says her own studies of end-of-life and palliative care in ethnically diverse communities led her to conclude that while care is doled out inequitably in some cases, minority populations often act as harbingers of problems that will affect the entire population. "When we look at diverse communities, we could see the failure of these things, such as advance directives, first in these communities," she notes. "But then as I worked more with it, it became apparent that, while you could see some of the tension in those communities earlier, the problem was actually with the system of bioethics innovations that we’ve developed," Koenig explains. "They are problems for the entire population, but they just show up in these smaller populations sooner."
Calls for more research funding
At the conclusion of its meeting, the NIH consensus panel called for increased funding from public and private sectors for research into end-of-life and palliative care. "All people will die," the authors of the NIH report wrote. "Most deaths are not sudden. Most persons will experience death also as caregivers or family."
And while there is a growing body of research, the NIH acknowledged, more is needed in the areas of cultural and ethnic attitudes toward the end of life, death in children, protracted end of life in cases of organ failure and cancer, and patient, caregiver, and health care system influences on end-of-life care.
Koenig says she sees an unhealthy discrepancy between funding for diseases and funding for the outcome that everyone reaches eventually. "There’s 100% mortality for all of the diseases that NIH combats, and each of those diseases has large budgets, but none of the agencies have devoted much time, attention, and resources to the fact that a lot of people die in these conditions," she explains.
Koenig points out that while NIH does not conduct research directly, it does have the responsibility of setting research agendas, and she welcomes the attention to the end of life. "We need to start with our culture of biomedicine that leads us to ignore the reality of death," she says. "Denying the reality of death is not a natural feature; it’s a cultural feature."
Reference
1. National Institutes of Health. "State of the Science Conference Statement — Improving End-of-Life Care." Dec. 6-8, 2004. Web: www.consensus.nih.gov.
Medicine knows too little about the process of dying. This was among the conclusions reached by a National Institutes of Health consensus panel on end-of-life care convened in December 2004.
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content