The NIH End-of-Life and Palliative Care Special Interest Group (NIH EOL PC SIG)

illustration of patient in bed with doctor

The NIH EOL PC SIG provides a forum for interested researchers from the NIH Intramural and Extramural Research Programs as well as interdisciplinary scientists from the non-NIH community to discuss current trends and exchange information in end-of-life and palliative care (EOL PC) research, including research translation. The Interest Group serves as an important source for ideas and inter-institute discussions of ongoing activities in this area and provides a forum to foster career development, investigator training, and opportunities to collaborate in new initiatives. Membership is open to anyone with shared interests in EOL PC science including researchers across NIH ICs, academia,
fellows/trainees, clinicians, and interested professionals and
non-scientists.

The NIH EOL PC SIG meets four times a year on the third Thursday of the months of four times a year on the NIH Campus in the Natcher Building 45, Room J, from 3:30 p.m. to 5:00 p.m. Meetings include lectures from leading researchers in the field and group discussions of topical events or work-in-progress within the EOL PC scientific and research communities.

MARK YOUR CALENDARS AND SPREAD THE WORD!

SPECIAL MAY LECTURE! OUR FINAL EVENT BEFORE OUR SUMMER BREAK! MARK YOUR CALENDARS NOW! THIS EVENT IS OPEN TO THE PUBLIC.

May 17th, 2012, 3:30-5:00 p.m.
Natcher, Building 45 NIH Campus, Room E1/E2 (Please note room change)

SPEAKER: Dr. Joan Teno, Brown University

TOPIC: Use of Observational Data to Study Comparative Effectiveness of PEG Feeding Tube Insertion in Hospitalized Nursing Home Residents with Advanced Cognitive Impairment

Host: NIA's Division of Behavioral and Social Research

Dr. Teno's research focuses on measuring and evaluating interventions to improve the quality of medical care for seriously ill and dying patients. Both as a researcher and clinician, Dr. Teno has devoted her career to understanding how to measure and improve the quality of life for frail, older and dying persons. She has led a statewide effort to improve pain management in nursing homes, for which she has received an award from the American Cancer Society.

For more information see: http://biomed.brown.edu/facultydirectory/profile.php?id=1100925316

MANY THANKS TO NIH CC AND NIMH FOR THE RECENT LECTURE:
April 19, 2012 3:30-5:30 p.m. Natcher Building 45 NIH Campus, Room J
Caregiving Burden, Stress, and Health Effects Among Family Caregivers of Adult Cancer Patients SPEAKERS:Esther M. Sternberg, MD, NIMH and Margaret Bevans, MSN, PHD, AOCN, NIH Clinical Center

This lecture explored a recent rounds published in JAMA. 2012;307(4):398-403.
Excerpted Abstract:
Unlike professional caregivers such as physicians and nurses, informal caregivers,
typically family members or friends, provide care to individuals with a
variety of conditions including advanced age, dementia, and cancer. This experience
is commonly perceived as a chronic stressor, and caregivers often experience
negative psychological, behavioral, and physiological effects on their
daily lives and health. During am intense and unpredictable course, the caregiver’s burden
is complex and complicated by multiple competing priorities. Because caregivers
are often faced with multiple concurrent stressful events and extended,
unrelenting stress, they may experience negative health effects, mediated
in part by immune and autonomic dysregulation. Physicians and their
interdisciplinary teams are presented daily with individuals providing such care
and have opportunity to intervene. This report describes a case that exemplifies
caregiving burden and discusses the importance of identifying caregivers
at risk of negative health outcomes and intervening to attenuate the stress
associated with the caregiving experience.

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The July 22 issue of the NIH Record featured Dr. Prigerson's NIH EOL PC SIG June lecture. You can access it online.

Or click on the headline:

Study Finds End of Life Can Be Peaceful, Less Expensive

The NIH-funded Coping with Cancer Study offers insights on achieving a better death.

General NIH EOL PC SIG Information

To subscribe to our listserv, click here. For more information about this group, contact List Serve Moderator/SIG Membership Liaison: Dr. Jeri Miller at EOLPC_questions@mail.nih.gov or a representative of the NIH EOL PC SIG Organizing Committee:

Cheryl Arenella, NCI
Ann Berger, CRC
Andrea Harabin, NHLBI
Martha Lundberg, NHLBI
Jeri Miller, NINR
Lisbeth Nielsen, NIA
Ann O'Mara, NCI
Wendy Weber, NCCAM

Focus on Palliative Care Research

The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help patients live as actively as possible until death;
offers a support system to help the family cope during the patients illness and in their own bereavement;
uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
will enhance quality of life, and may also positively influence the course of illness;
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Focus on End-of-Life Research

The IOM (1997) emphasizes the importance of research focusing on processes, interventions, and outcomes in the prevention and relief of suffering for those with advanced, life-limiting illnesses. This includes research that strives to find new strategies to improve the quality of the end-of-life experience for individuals of all ages and across a wide-array of conditions and diseases (such as cancers, cardiovascular and pulmonary conditions, dementias, renal and kidney disease, HIV/AIDS, neurologic or chronic progressive conditions, etc.). With goals to increase the quality of care and support provided to dying individuals and their informal caregivers—from the early through the final stages of an illness, scientific interests in EOL focus on the basic elements of caring for those facing advanced, potentially fatal illnesses including: understanding the physical, psychosocial, cultural, and spiritual needs of patients and their caregivers; communicating needs; decision-making and advance care planning; development and use of new IT health technologies; addressing bioethical challenges; understanding grief, bereavement and emotional needs of patients and caregivers; pharmacologic and nonpharmacologic treatments-including complementary and alternative medicine; and issues surrounding health care systems and models of care delivery within diverse settings.