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.
These questions would not be that hard to answer. Most of NIH's $27 billion annual budget supports complex research teams, giant database projects and elegant, randomized controlled trials. The fairly straightforward surveys, care-delivery demonstrations and medication trials required to advance the understanding of end-of-life issues would show quite a return on an investment of even a very small percentage of that budget.
Yet somehow the funding doesn't happen. A 2003 report from the Institute of Medicine recalled a federal survey, begun in the 1960s, that for nearly 30 years described how Americans die. Researchers asked randomly selected family members basic questions about what the deceased had been doing in the year before death, what they thought about the health care the patients had received, and what costs had not been covered by insurance or government support. The panel sharply noted that the survey was last done in 1993. This wasn't an active decision; the project was simply put off, delayed, never reauthorized.
Soon, we won't even know in a timely fashion exactly how many Americans have died and of what causes: Because of funding cutbacks, our national mortality records are falling behind at the rate of a couple of months a year.
Several large philanthropic organizations, including the Robert Wood Johnson Foundation and the Soros Foundation, responded to a 1997 Institute of Medicine report by providing money to launch research concerning several aspects of dying and death. But once those initial investments were used up, no major funding agency, public or private, picked up the slack.
Some important attempts are being made. In the last session of Congress, two Minnesota representatives — Democrat James Oberstar and Republican Jim Ramstad — sponsored a bill that called on an array of federal agencies to support research, demonstrations and data collection about end-of-life issues, and they aim to reintroduce it in this session. The veterans health care system has begun to prioritize good care at the end of life and has expanded its services and research. The NIH itself has a small group of program staff working to promote end-of-life research.
But much more needs to be done, and quickly, before the famously large baby boom generation begins to get old and sick together. The Centers for Disease Control and Prevention could monitor the trends in comfort and suffering. The Labor Department could start to pay attention to family caregivers and health aides as a specific labor force and assess its size, working conditions, benefits and retirement income. Biomedical researchers could focus more attention upon the prevention and alleviation of pain, nausea and pressure ulcers.
The case of Terri Schiavo is not unique — just an extreme example of a common situation. America's massive health care establishment needs to make it a priority to get the facts so that more of us can count on living as meaningfully and comfortably as possible — to the end of our days.
June Lunney is the associate dean for research at the West Virginia University School of Nursing and lead author of “Describing Death in America” (National Academy Press). Joanne Lynn is a geriatrician and researcher for RAND Corp. and author of “Sick to Death and Not Going to Take It Anymore! Reforming Health Care for the Last Years of Life” (University of California Press).
This commentary originally appeared in Washington Post on March 27, 2005. Commentary gives RAND researchers a platform to convey insights based on their professional expertise and often on their peer-reviewed research and analysis.