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Research Initiatives To Improve End-of-Life Care

by Ann R. Knebel, R.N., DNSc

Geriatric Times November/December 2002 Vol. III Issue 6

Many agencies within the U.S. Department of Health and Human Services (HHS) are interested in improving the care of people who have life-limiting conditions and who are approaching the end of life. Under the leadership of the National Institute of Nursing Research (NINR) at the National Institutes of Health (NIH), and in collaboration with other HHS agencies, several research initiatives have been sponsored. The HHS agencies involved in these activities are listed in the Table.

Since 1997, there has been an escalation in the number and breadth of end-of-life studies funded by the various HHS agencies. While earlier studies tended to focus on physical symptom management, especially pain, an expanding focus includes topics like communication, coping, and cultural and ethnic influences on end-of-life care. The report Approaching Death, published by the Institute of Medicine (IOM) in 1997, may be responsible, in part, for this growing emphasis. The IOM report included recommendations related to research, education of health care providers and community involvement.

The initiatives sponsored by the various HHS agencies are described in this article and are organized by these three categories.

Research

The IOM report made a strong recommendation that health care professionals must commit to improving care for dying patients, especially in symptom management. The Office of Alternative Medicine (now the National Center for Complementary and Alternative Medicine [NCCAM]), the National Institute of Allergy and Infectious Diseases (NIAID), the National Cancer Institute (NCI) and the National Institute of Dental and Craniofacial Research (NIDCR), along with the NINR, convened a workshop to review the state of science in symptom management -- especially the symptoms of pain, nausea, dyspnea, cognitive disturbances and cachexia. The workshop established the scope of research that needed to be completed and defined potential areas of inquiry within the larger field of end-of-life research. The workshop summary can be found at <www.nih.gov/ninr/wnew/symptoms_in_terminal_illness.html>.

A program announcement soliciting research applications on symptom management at end of life followed the workshop. While the major emphasis was physical symptoms, the announcement also included psychological symptoms such as depression and anxiety, as well as distress associated with the physical symptoms. In 1999, an effort led by the NINR expanded this original announcement to a specific request for applications for research on care at the end of life. Over 100 investigators submitted applications in response to this specific request, and 19 projects were funded.

The funded studies include a wide range of populations and modalities. For example, guided imagery and cognitive restructuring are being studied in patients with cancer pain; and acupuncture, massage therapy, vitamins, herbs and nutritional supplements are being studied in end-of-life patients with congestive heart failure and chronic obstructive pulmonary disorder. The use of life support technology in older individuals, especially mechanical ventilation, is being researched. Attention is being paid to the needs of caregivers as well. In one study, a computer intervention called Tele-Care is being investigated for its effect on depression, social support and personal growth of white and Hispanic caregivers. These exciting studies are starting to report their findings.

Another program announcement, Quality of Life for Individuals at the End of Life, was published in 2000. This was also the result of a strong collaboration across the NIH, with six cosponsoring institutes and centers. Applications are being submitted in response.

In 2001, NCCAM sponsored a request for applications on Complementary and Alternative Medicine at the End of Life for People with Cancer and/or HIV. As a result of this initiative, 12 new studies were funded. They include research into the treatment of depression with massage in end-of-life AIDS patients, meaning-centered psychotherapy in patients with advanced cancer, acupuncture to relieve symptom distress in patients with end-stage colorectal cancer, and mistletoe extract for supplemental care for patients with stage IV lung cancer.

To assure continued coordination of end-of-life research efforts across HHS, in the fall of 2000, the NINR organized and now leads the trans-HHS end-of-life research interest group. To promote communication across agencies and with the community at large, the group has recently launched a Web site <www.nih.gov/sigs/eol>.

Two workshops were convened by the NINR and its many partners in 2001 to discuss two populations who were noticeably absent in currently funded research: people dying of a genetic illness and older individuals who have no life-threatening illness per se, but are frail.

To address the first group, a workshop titled End-of-Life Issues in Genetic Illnesses was held in September 2001. In collaboration with the Office of Rare Diseases and the National Human Genome Research Institute, the NINR brought together researchers, clinicians, patients and family members to discuss whether end-of-life issues are different in people with genetic illnesses and to encourage genetic and end-of-life researchers to work together in developing research studies. The proceedings of the meeting will be published in the journal Genetics in Medicine.

The second workshop, Integrative Workshop on End-of-Life Research: Focus on Older Populations, was held in October 2001 to define the current state of the science. The two-day meeting included 75 participants from a broad range of backgrounds. Papers were commissioned on four themes: the experience of dying/spirituality, organizations and settings where people die and transitions among them, methods and measurement in end-of-life research, and ethics in end-of-life research. The papers and proceedings will be published in a supplemental issue of The Gerontologist.

Specific to the oncology population, the NCI is responding to the recommendations from Improving Palliative Care for Cancer, a report by the Cancer Policy Board of the NCI. The overarching recommendations were:

Education

The 1997 IOM report also recommended that palliative care should become an area in which one can establish expertise. Training and education initiatives in end-of-life care are being established through collaboration from leaders of various groups.

For example, collaborating with the American Association of Colleges of Nursing, NINR worked with CenterNet, a provider of live, interactive and prerecorded programming, to produce a six-part continuing education video series targeted to nurses -- but relevant for all clinicians. This series brought together expert nursing educators and NINR-funded investigators to discuss how to apply evolving research findings on end-of-life care into practice.

To help train the next generation of nurses who will advance the science of end-of-life care, NINR funds training and career development awards. Specific information for nurses interested in applying for fellowships to support predoctoral education can be found at <http://grants1.nih.gov/grants/guide/pa-files/PAR-02-019.html> and for postdoctoral education at <http://grants1.nih.gov/grants/guide/pa-files/PA-00-104.html>. Nurses interested in applying for career development awards can find information at <http://grants1.nih.gov/grants/guide/pa-files/PA-00-019.html>. Professionals from other disciplines should check with other funding agencies to determine their interest in supporting training and career development opportunities.

Community Involvement

The 1997 IOM report stressed that public discussion is essential to understanding end-of-life issues. The NIH has been involved in community outreach activities as a means of informing future research directions. Two activities that NINR initiated espouse the principle that a sound philosophy of science requires public dialogue.

In March 2000, NINR spearheaded a coalition project that included the Agency for Healthcare Research and Quality, Americans for Better Care of the Dying, Hospice and Palliative Care of Metropolitan Washington, and a representative of the Canadian Hospice movement. The coalition used the occasion of the Kennedy Center production of the Pulitzer Prize-winning play W;t to invite health science researchers, health care providers and advocates to discuss end-of-life issues. The play depicts a woman's battles with cancer and with the researchers who were more absorbed in their work than in their patient. The cast joined leaders in health care and end-of-life research in a post-production panel discussion. This discussion focused on the need to improve care at the end of life and to overcome the delineation that modern medicine has created between "care" and "cure."

Another event that NINR spearheaded in conjunction with the trans-HHS end-of-life research interest group was a community forum held at NIH in November 2000, which was titled The End of Our Lives: Guiding the Research Agenda. The format for the forum was drawn from the Bill and Judith Moyers series On Our Own Terms: Moyers on Dying. Four speakers used clips from the Moyers series to highlight clinical, research and ethical issues related to palliative care as well as the use of technology and cultural differences in end-of-life care. Presentations were followed by a panel discussion with the audience. A summary of the conference proceedings is available at <www.nih.gov/ninr/news-info/eol_trans.pdf>.

Conclusion

Before 1997, end-of-life research received little attention. In the past five years there has been an explosion of initiatives to improve care at the end of life. As the science of end-of-life develops and currently funded studies are completed, it will be possible to further inform health care professionals and the public about best practices for preventing suffering and improving quality of life at the end of life. People with life-limiting conditions can benefit as the science develops and our understanding of the unique aspects of care at the end of life improves.

Dr. Knebel is a program director with the NINR and is responsible for developing the end-of-life science area.