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

illustration of patient in bed with doctorThe 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.
                                                                                                                                                                                   


Our NIH EOL PC SIG Lecture Series for 2013 has ended for the year.

 Check back for up-coming lectures for the 2013-2014 year!



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Our October  2013 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!


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The September issue of the NIH Record features a lecture by Amy Berman on "Cancer Care: The Patient's Role, Palliative Care, and Implications for Health Policy."  This was part of the Medicine: Mind the Gap series presented by the Office of Disease Prevention, the Office of Research on Women's Health and NCCAM.

 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 2012 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)

April 18, 2013, 3:30-5:00 p.m. NIH Natcher, Room J
TOPIC:
Integrating Palliative and Oncology Care in Patients with Advanced Cancer
SPEAKER: Dr. Jennifer Temel,
M.D., Ph.D., Clinical Director of Thoracic Oncology Massachusetts General Hospital
Associate Director of the Dana Farber/Partners Cancer Care Hematology/Oncology Fellowship

HOST: National Institute of Nursing Research

Description of Research Presentation:



M
arch 4, 2013, 3:00-5:00 p.m. NIH Natcher, Room  D                                                                                                                           

TOPICS: Improving Care Near the End of Life: What Good Can 'Ethics' Do? Ethics and Evidence: From Quinlan to the ACA
SPEAKERS: Dr. Mildred Z. Solomon, President and CEO, The Hastings Center, Dr. Nancy Berlinger, Research Scholar, The Hastings Center
HOST: NIH Bioethics Interest Group, NIH EOL PC SIG, NIH Clinical Center Department of Bioethics 
Description: Dr.  Solomon's  talk covered 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 included 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 discussed 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. She described 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.

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

HOST: NIH Clinical Center Pain and Palliative Care Program
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escription: The talk discussed the development of a pediatric planning document, challenges and barriers to introducing pACP, guiding families in the decision-making process and the development of a pediatric planning document.  Dr. Wiener reviewed the impact work with seriously ill adolescents and their families has on health care providers.

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
TOPIC: A Phenomenological Inquiry of Psycho-Socio-Spiritual Healing  in Cardiac Rehabilitation Patients
HOST: NIH CC Pain and Palliative Care Services
Description of Research Presentation:  An acute cardiac event poses a potentially life-threatening situation to those involved. Little is known about psych-socio-spiritual healing in cardiac patients after they experience an acute cardiac event. The purpose of this phenomenological study was to study the lived experience of psycho-socio-spiritual healing in cardiac rehabilitation patients with positive experience from the acute cardiac event. Participants described the entire experience as life-transforming. Experiencing an acute cardiac event was shocking. Participants were suddenly faced with their own mortality. When faced with this life and death situation participants chose life and changed their daily activities by reordering priorities and making necessary lifestyle changes. Barriers to healing included those that were self-inflicted, depression and anxiety, and lack of support. Healing was facilitated by self support, social support, mind-body interventions and cardiac rehabilitation.


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
Description: D
r. 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

TOPIC: 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

HOST: NIH Clincial Center Pall Care                                                                                                       
This lecture explored a recent rounds published in JAMA. 2012;307(4):398-403.
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 22,2011 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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General NIH EOL PC SIG Information

To subscribe to our listserv, click hereFor 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.


 
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