To ease end of life, embrace death
NIH recommends new attitude toward death
The National Institutes of Health (NIH) consensus panel on end-of-life care convened in December 2004, and among the conclusions reached by the panel of experts on death and palliative care is that medicine knows too little about the process of dying.1
"Events surrounding end of life are poorly understood, leaving many Americans to struggle through this life event," the consensus panel wrote in its preliminary report. "Ambiguity surrounding the definition of end of life hinders the development of science, delivery of care, and communications between patients and providers."
Barbara Koenig, RN, PhD, senior research scholar and executive director of the Center for Biomedical Ethics at Stanford University in Palo Alto, CA, has written and researched extensively on end-of-life issues, and says, for medicine to better address death, culture at large needs to "embrace death."
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 in the street with a heart attack, the system takes over. You don’t have to invent the idea of an ambulance to come take you to the hospital," she explains. "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 undertakings 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 in some cases care is doled out inequitably, in many cases, the minority populations merely reflect problems sooner that actually 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 said. "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.
"They are problems for the entire population, but they just show up in these smaller populations sooner."
The NIH consensus panel, at the conclusion of its meeting, called for increased funding from the 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 acknowledges, 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.
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 says while NIH does not conduct research directly, it does have the responsibility of setting research agendas, and she welcomes the attention to end of life.
"We need to start with what the culture of biomedicine is that leads us to ignore the reality of death," she suggests. "Denying the reality of death is not a natural feature — it’s a cultural feature."
1. National Institutes of Health. State of the Science Conference Statement — Improving End of Life Care. Dec. 6-8, 2004. Available on-line at www.consensus.nih.gov.
- Barbara Koenig, RN, PhD, Senior Research Scholar, Executive Director, Center for Biomedical Ethics at Stanford University, Palo Alto, CA. E-mail: firstname.lastname@example.org.