[Paleopsych] WP: Why We Know Painfully Little About Dying

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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
    our days.

    Authors' e-mails:

    [3]jlunney at hsc.wvu.edu[4]jlynn 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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