[Paleopsych] WP: Why We Know Painfully Little About Dying
checker at panix.com
Thu Mar 31 21:02:53 UTC 2005
Why 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
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
jlunney at hsc.wvu.edujlynn at rand.org
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).
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