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

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.
                                                                                                                                                                                 

 

SAVE THE DATE! TWO PRESENTATIONS on MARCH 4th! OPEN TO THE PUBLIC

March 4, 2013

3:00-5:00 p.m.

NIH Campus, Natcher Building 45, Room D

HOSTS: NIH EOL PC SIG - NIH Bioethics Interest Group - NIH Clinical Center Department of Bioethics Event

Speaker:

Dr. Mildred Z. Solomon

President and CEO of The Hastings Center

Clinical Professor of Medical Ethics and Anaesthesia Harvard Medical School, Director of HMS Fellowship in Medical Ethics, Department of Global Health and Social Medicine, Harvard Medical School

and

Improving Care Near the End of Life: What Good Can 'Ethics' Do?

Speaker:

Nancy Berlinger, PhD, MDIV

Deputy Director and Research Scholar, The Hastings Center

Director, Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life

About the Presentations:

Dr.  Solomon's  talk will cover the evolution of ethical and legal consensus around important topics in care near the end of life, with attention to role of evidence in informing consensus, and with attention to emerging questions and debates.  Key topics may include the rights of patients and surrogates and the development of processes such as advance care planning; the determination of death; access to pain and symptom management for adults and children; decisions about specific life-sustaining treatments; and the design and improvement of safe and effective care systems.

Dr. Berlinger will discuss the practical role of ethics in shaping good care through professional practice and through organizational supports ranging from education to policy development to systemic improvement efforts. It will describe how ethics guidance draws on evidence, and highlight some of the ethical challenges confronting professionals and institutions involved in the care of persons near the end of life.

About the Speakers:

Dr. Mildred Z. Solomon is president and CEO of The Hastings Center, a world renowned bioethics research and policy institute, which examines ethical questions in health, health care, the life sciences and the environment.  She is also Clinical Professor of Medical Ethics and Anaesthesia at Harvard Medical School where she directs the HMS Fellowship in Medical Ethics within the Department of Global Health and Social Medicine.  Through this program, she has mentored 100 fellows who now play leadership roles in bioethics in the Harvard-affiliated teaching hospitals and numerous other health systems in the United States, Europe, Israel and Australia.  Before assuming the leadership of The Hastings Center, Dr. Solomon was Senior Director for Implementation Science at the Association of American Medical Colleges, where she worked with the AAMC’s Chief Science Officer to encourage the uptake of evidence-based practices by building implementation science and comparative effectiveness research capacities within the nation’s medical schools and teaching hospitals. Dr. Solomon's own scholarship and policy work has focused primarily on adult and pediatric palliative care and on organ transplantation.  She cofounded Decisions Near the End of Life, the nation’s first professional education program on ethical issues in end-of-life care, which was ultimately adopted by more than 230 hospitals and adapted in Germany and Switzerland. She also founded The Initiative for Pediatric Palliative Care which researched barriers to family-centered care of gravely ill children and resulted in an award-winning curriculum and leadership development for over 2,000 pediatric care providers.From 2006 – 2010, Dr. Solomon was a member of the U.S. Secretary of Health and Human Services Advisory Committee on Organ Transplantation and in 2009, a member of a National Research Council committee of the National Academies of Science, which developed strategies to promote safety and security in chemical laboratories in the developing world. She has advised numerous federal agencies and foundations, including the Health Services Research Administration, the Environmental Protection Agency, the Robert Wood Johnson Foundation, the Open Society Institute and the U.S. Holocaust Memorial Museum. Dr. Solomon earned her doctorate in educational research methods and adult learning at Harvard University and her B.A. from Smith College.

Nancy Berlinger, PhD, MDiv, is a Research Scholar at The Hastings Center.  She directed the project that produced the revised and expanded second edition of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life (Oxford University Press, 2013).  She is also the author of After Harm: Medical Error and the Ethics of Forgiveness (Johns Hopkins University Press, 2005).  She teaches ethics in master’s and doctoral programs at the Yale University School of Nursing, serves on the bioethics committee at Montefiore Medical Center, Bronx, New York, and is involved in clinician education in the New York area, nationally, and internationally. Her research interests also include ethical issues in cancer as a chronic illness, access to health care for undocumented immigrants, and the integration of care near the end of life into systemic efforts to improve health care.

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Our October event was a great success! Please follow left side link to Lecture Archives to access the email link to request a copy of the presentation (508 compliant)!

The Journal, Nursing Outlook, has recently published a Special Issue on Breakout Sessions from the 2011 Summit on the Science of Compassion: Future Directions in End-of-Life and Palliative Care.  Please check the Nursing Outlook Website to view many of these papers!

Berman Shows How to Bridge Gap to Patient-Centered Care

If you didn't have a chance to attend, the full lecture is available through video archives at: http://videocast.nih.gov/summary.asp?Live=11519

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The June 22 issue of the NIH Record featured Dr. Teno's NIA host of the NIH EOL PC SIG June lecture. You can access it online or on this link:

 Late-life Care of Frail Elderly Is Often Capricious, Teno Says

End-of-life care can be miserable when decisions on feeding tubes are ill-considered.

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PAST LECTURES (PLEASE CHECK LECTURE ARCHIVES TAB FOR ANY POSTS OF LECTURE MATERIAL)

January 17, 2013, 3:30-5:00 p.m. NIH Clinical Center/CRC
HOST: NIH Clinical Center Pain and Palliative Care Program
TOPIC: Advance Care Planning in Adolescents: Bridging Clinical Practice with Psychosocial Research
Speaker: Lori Wiener, PhD Director, Psychosocial Support and Research Program Staff Scientist, Pediatric Oncology Branch Center for Cancer Research, National Cancer Institute

October 15, 2012, 3:30-5:00 p.m., NIH Clinical Center
SPEAKER: Sheeba R. Nadarajah, PhD (c), RN. Pre-doctoral Fellow, Pain and Palliative Care Services, Clinical Center, NIH

May 17th, 2012, 3:30-5:00 p.m.
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.

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.

The July 22,2011 issue of the NIH Record featured Dr. Prigerson's NIH EOL PC SIG June lecture. You can access it online: Study Finds End of Life Can Be Peaceful, Less Expensive 
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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.