Executive Summary
NINR is pleased to publish an executive summary of "The Science of Compassion: Future Directions in End-of-Life and Palliative Care" summit event.
Click here to read or download the executive summary (PDF, 600 KB).
The National Institute of Nursing Research (NINR), together with partners from across NIH Institutes, Centers and Offices, convened the three-day national Summit on “The Science of Compassion: Future Directions in End-of-Life and Palliative Care" on August 10-12, 2011.
The Summit examined the state of research and clinical practice in end-of-life and palliative care (EOL PC) and, with almost 1,000 registrants, provided an opportunity for scientists, health care professionals, and public advocates to come together to catalyze and shape the future research agenda for this critical scientific area.
The Summit served as a significant milestone to not only reflect on past accomplishments, but to address the scientific contributions of one of the most important areas of health care in our Nation today.
Media Coverage
- Nursing Spectrum - "Signs of Hope"
- Hospitalist News - "Experts: Palliative Care Can Begin Before the End" (Note: requires external site login)
- Oncology Times - "NIH Summit: Palliative Care Becoming More Fully Integrated into Oncology"
- Catholic News Service - "Palliative care expert sees essential role for Catholic health care" (scroll down for story)
Congressional Quarterly also covered the Summit.
Videocast and Presentations
NINR greatly appreciates the outstanding contributions of those individuals who attended and participated in the Summit on August 10-12, 2011, and who made the event such a success.
To view videocasts of the Summit, please visit the links below. There are four videocast segments divided by day and/or session of the Summit.
Videocast Table of Contents:
Timecodes are provided below to fast-forward directly to the beginning of a particular speaker or session. You can also click on the session title underneath the viewing screen to skip to the session you wish to watch.
Commencement:
http://nih.granicus.com/MediaPlayer.php?view_id=7&clip_id=304
Opening Remarks from NINR Director Dr. Patricia Grady: 00:05:50
The Ethics of Science at the End-of-Life: A Town Hall Discussion: 00:21:23
Mistress of Ceremonies: Dr. Marie T. Hilliard
Moderator: Ms. Susan Dentzer
Panelists: Dr. Nancy Berlinger, Dr. Joseph J. Fins, Dr. Karla FC Holloway
Day 1:
http://nih.granicus.com/MediaPlayer.php?view_id=7&clip_id=306
Welcoming Remarks: 00:00:00
Opening Keynote by Dr. Ira Byock: 00:16:28
Plenary Session 1: Identifying Our Strengths: 01:20:15
Moderator/Discussant: Dr. Robert Krouse
Panelists: Dr. J. Randall Curtis, Dr. Pamela Hinds,
Dr. Christine Miaskowski, Dr. Jennifer Temel
Lunch Session: Parents and Clinicians as Partners in Research: 03:24:22
Speakers: Ms. Dianne Gray, Dr. Cynda Hylton Rushton
Plenary Session 2: Marshalling Our Resources: 04:27:08
Moderator/Discussant: Dr. Chris Feudtner
Panelists: Dr. Jeff Dusek, Dr. Susan Hickman,
Dr. Joan Teno, Dr. Jaime Von Roenn
Poster Session & Awards Ceremony:
http://nih.granicus.com/MediaPlayer.php?view_id=7&clip_id=309
Day 2:
http://nih.granicus.com/MediaPlayer.php?view_id=7&clip_id=310
Moderated Report Day 1 Break-Out Sessions: 00:00:00 - 02:25:24
Plenary Session 3: Mobilizing for the Future: 02:55:00
Moderator/Discussant: Dr. June Lunney
Panelists: Dr. Amy Abernethy, Dr. Marie Bakitas,
Dr. Jean Kutner, Dr. Richard Payne
Closing Keynote: Dr. J. Randall Curtis (introduced by Dr. Grady): 04:27:32
Closing Remarks by Dr. Grady: 05:00:19
Important Note: NIH Videocasts may require updating the Microsoft Silverlight or Windows Media Player software to view.
For full instructions and links to software downloads for using NIH online streaming media, please visit:
http://nih.granicus.com/ViewPublisher.php?view_id=19
Given that some presentations contained proprietary material, NINR will not be posting presentation slides, but video footage of most of the event will be provided.
Close-captioning for each video is available by clicking on the "CC" at the bottom left of the screen.
Event Photos
NINR director Dr. Patricia Grady (fourth from l) with panelists (from l) Dr. Joseph Fins, Dr. Nancy Berlinger, Dr. Karla Holloway, Susan Dentzer and Dr. Marie Hilliard
Opening keynote speaker for “The Science of Compassion,” Dr. Ira Byock
Parent advocate Dianne Gray talks about her experiences with clinicians in the death of her son from a rare neurologic disorder.
Photos by Michael Spencer, NIH Medical Arts
Summit Objectives
- Examine the current status of palliative care and end-of-life research, practice, and policy
- Propose strategies to overcome barriers and ensure scientific and methodologic rigor in our research
- Delineate new action items that galvanize progress in these vital areas of science
- Envision and map pathways to ensure a future rich with scientific endeavor and achievements
This Summit brought together scientists, researchers, palliative and end-of-life care health professionals, educators, policy analysts, members of professional organizations, and members of the public.
Confirmed Speakers
- Dr. Ira Byock
- Dr. Richard Payne
- Dr. Randy Curtis
- Dr. Amy Abernethy
- Dr. Joan Teno
- Dr. Marcia Grant
- Dr. Pamela Hinds
- Dr. Christine Miaskowski
- Dr. Jean Kutner
- Dr. Jennifer Temel
Town Hall Event
The Summit began Wednesday evening, August 10, 2011, in the Crystal Ballroom of the Hyatt Regency in Bethesda, Maryland from 7:00 p.m. – 9:00 p.m. with a special public event titled “The Ethics of Science at the End-of-Life: A Town Hall Discussion.”
With assistance from the NIH Clinical Center Department of Bioethics, this opening event brought together leading experts in science, medicine, and bioethics to converse with the public on critical, relevant issues faced in both research and in practice as we build the evidence-base for compassionate and dignified care for those at the end-of-life. We know that this Town Hall event provided a unique opportunity to engage the public, provide awareness and education, and draw attention to the important and timely ethical questions surrounding end-of-life research and practice.
Confirmed Town Hall Participants (Click here to read speaker bios):
- Ms. Susan Dentzer, Moderator
- Dr. Marie T. Hilliard, Mistress of Ceremonies
- Dr. Nancy Berlinger, Panelist
- Dr. Joseph J. Fins, Panelist
- Dr. Karla FC Holloway, Panelist
The Summit continued at the Hyatt Regency Bethesda on August 11 – 12, with a keynote presentation by Dr. Ira Byock, three plenary discussions, and break-out sessions. The event concluded with a presentation by Dr. J. Randall Curtis, who provided a review of the entire summit and described new scientific directions for the future.
Luncheon Event: "Parents & Clinicians as Partners in Research"
This special lunch hour presentation featured a dialogue between Dr. Cynda Hylton Rushton, an internationally recognized expert in ethics, end-of-life, and pediatric palliative care, and Dianne Gray, President and CEO of Hospice and Healthcare Communications, an award winning author, national speaker, and parent advocate of a son who died as result of a rare neurodegenerative disease (NBIA Disorder, Neurodegenerative Brain Iron Accumulation Disorders).
Together, these presenters conversed with the audience about the importance of inclusion of families whose children face life-threatening illnesses as active partners with researchers and how these partnerships can improve the design of research, educational initiatives, and quality and satisfaction of care.
Dianne Gray
Advocate/Speaker/Author/CEO
Cynda Hylton Rushton, PhD, RN, FAAN
Professor, Nursing and Pediatrics
Core Faculty, Berman Institute of Bioethics
Program Director, Harriet Lane Compassionate Care
To read the bios of the luncheon speakers, click here.
Evening Poster Reception
A juried poster session was held in conjunction with the Summit’s Evening Reception, which will feature desserts, coffee, and dialogue with top researchers in end-of-life and palliative care.
Research Mentor and Community Dyad Program
This innovative program paired researchers with members of the community including those individuals who have life-limiting illness or their caregivers. These dyads attended the Summit together and interacted with presenting researchers to learn firsthand about characteristics of good research and key issues in palliative care and end-of-life research.
Senior Mentor and Junior Researcher Dyad Program
Investigators meeting the criteria for NIH defined “junior” researcher status attended the Summit paired with a Senior Researcher Mentor. Junior and Senior Researcher pairs attended sessions together, and Junior Researchers received guidance regarding state-of-the-art and methodologically rigorous palliative care and end-of-life research.
Both dyad programs provided academic mentoring and opportunities for small group networking.
Location
For more information about the Summit location, including hotel reservations and directions, please click here: Hyatt Regency Bethesda.
This event was sponsored in part by the National Center for Complementary and Alternative Medicine, the National Institute on Aging, the National Institutes of Health (NIH) Clinical Center Department of Bioethics, the NIH Office of Rare Diseases Research, and the NIH Office of Research on Women's Health.
Portions of this event were made possible by the Foundation for the National Institutes of Health, with generous support by Pfizer.
