35742Article: Why We Know Painfully Little About Dying
- Apr 1, 2005Why We Know Painfully Little About Dying
By June Lunney and Joanne Lynn
Sunday, March 27, 2005; Page B04
Those of us who specialize in advanced illness and the end of life have been fielding reporters' calls nonstop for the past couple of weeks. Everyone wants to know: How many people like Terri Schiavo lack living wills? How many might die every year from having treatment or nutrition withheld? How many families have been torn apart by the complex decisions that must be made when a loved one is dying? Again and again, the answer is sad but simple: We don't know. In fact, no one knows. Even in an era when life-extending treatment makes quality of life an ever more crucial issue, no one has invested much in this kind of research.
So we pose a different question: How can it be that there is so little research on dying and the time just before death? Surely self-interest alone would motivate us, since everyone dies. And before our own fatal illnesses, most of us go through the painful problems of life's end along with family members or friends. Yet what we find, when we seek the guidance of reliable information, is that it's not there.
Just a few months ago, the National Institutes of Health, led by the National Institute of Nursing Research, held a conference in Bethesda to review the state of the science, with an eye toward giving more useful information to dying patients, their families and their health care providers. The result was mostly a numbing review of missing data. An independent panel at the conference concluded that there is a vast deficit of knowledge about end-of-life symptoms, caregiver burdens and what services should be available.
This nation boasts the most sophisticated biomedical research enterprise in the world. For understandable reasons, research in the United States has tended to focus on preventing and curing disease -- but eventually, everyone faces some condition that cannot be prevented or cured. The NIH is the most influential engine behind America's research; and as it happens, NIH comes up this year for congressional reauthorization. This is a good time for politicians and policymakers to ensure that end-of-life issues are more prominent on the research agenda.
The gaps in what we know are awesome. We don't have adequate studies on how to deliver effective pain relief to cancer patients or to relieve the struggle to breathe that accompanies some of the most terrible deaths. No data show how many family caregivers face bankruptcy or emotional crisis, or what kind of improvements would most effectively support them. As we have told reporters over and over again, we cannot even pretend to guess how many Americans are alive only by virtue of a feeding tube or a mechanical respirator.
Full Text at Washington Post
Robert Karl Stonjek