NIH has funded many medical advances that help people live longer
lives. But as the life expectancy of people with chronic and complex
health conditions goes up, maintaining their quality of life becomes
more difficult. A 1997 report from the Institute of Medicine, Approaching
Death: Improving Care at the End of Life, found widespread
dissatisfaction with end-of-life care and many gaps in scientific
knowledge about the topic.
A conference on improving care was held at the end of 2004 to
evaluate the field and help determine future directions for research.
A special supplement of the Journal of Palliative Medicine now
documents the event.
The conference, sponsored primarily by NINR and NIH's Office of
Medical Applications of Research, brought together almost 1,000
health care practitioners from around the world, including nurses,
physicians, social workers and others who work with dying people.
After hearing from many experts, a panel found that many aspects
of end-of-life care are poorly understood, leaving many American
families to struggle through this life event.
The research is, in many ways, still in its infancy. To begin
with, there's ambiguity about the term "end-of-life," which is
usually defined by the regulatory environment rather than scientific
data. Terms such as "palliative care," "end-of-life care" and "hospice
care" are used interchangeably. Clear definitions of these terms
could improve the delivery of care since good, consistent communication
among patients, families and providers is crucial to high-quality
end-of-life care. In addition, valid measurements of concepts such
as quality of life would lay a better foundation for research.
Our understanding of what processes and interventions can improve
outcomes is poor. Current end-of-life care includes some untested
interventions that need to be validated. Beyond the field of pain
management, the panel found, the quality of evidence on symptom
management is limited. Race, ethnicity, culture, gender, age and
disease states have some impact on the end-of-life experience.
How these factors affect outcomes isn't well understood.
Many "system factors" are poorly understood as well. End-of-life
care is often fragmented among providers and settings, leading
to a lack of continuity in care. The panel cited the regulatory
environment as a common barrier preventing people from getting
the full range of interventions they need at the close of their
End-of-life care can be an uncomfortable topic, but more research
can improve all our experiences at this difficult juncture. NINR
is the lead institute at NIH for such research; its portfolio in
pain and other symptom management, care of the chronically and
critically ill, family involvement in decision-making for incapacitated
patients and family caregiving has provided a knowledge base to
Future research priorities will be to develop biomarkers and other
objective measures of impending death, to include end-of-life research
in existing clinical trial networks, to recruit minority populations
into research and to improve the use of technology in providing
care. This research should lead to improvements in pain and other
symptom management for the dying, better planning and decision-making
in care and treatment and insights into how best to communicate
with and involve family and friends.
The journal supplement, co-sponsored by NINR and NCI, is available
free online at www.liebertpub.com/jpm.