1. National Palliative Care Research Center Retreat (NPCRC)
A collaborative meeting jointly sponsored by the NPCRC, the American Cancer Society, and the College of Palliative Care

2. Goals For Our Retreat
To provide an opportunity for interdisciplinary palliative care researchers to come together to network, learn from each other, discuss the science of palliative care, and develop new research ideas and collaborations.

3. Objectives Review our accomplishments in palliative care
Place our work in the national context
Understand why the NPCRC was formed and what it is about
Get a sense of who else is at this meeting
Preview the content of the next 2 1/2 days

4. Diagnosis Palliative Care Hospice
Our Vision of Palliative Care
LIKE ENSURE, WE HAVE AN OPPORTUNITY TO EXTEND THE ACCESS POINT PAST THE “SICK POINT”
Disease Modifying Therapy
Curative, or restorative intent
Life
Closure
Death &
Bereavement
Diagnosis Palliative Care Hospice
NHWG; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD

5. What is palliative care?

6. It’s not about death and dying...
Project on Death in America
Soros’s OSI initiative to fund palliative care initiatives
Promoting Excellence in End-of-Life Care
RWJ initiative to support research/education in palliative care
On our own terms: Moyers on Dying
8 hour PBS series
Last Acts
RWJF consumer advocacy organization
Approaching Death: Improving care at the end of life
Institute of Medicine report
Books:
“Handbook for Mortals”, “Dying Well”, “The Good Death”

7. …People have an abiding desire not to be dead
“I don’t want to achieve immortality through my work. I’d rather achieve it by not dying.” Woody Allen

8. Language matters: The wrong language can drive our audience away
If our goal is to provide a patient-centered approach to improving care of seriously ill…the major barrier we face is self-imposed.
Many people who need palliative care are not dying. Even among the subset that are, no-one wants to die, and very few are able to accept that they are dying until death is imminent.
Use of end of life, dying, and bereavement language renders our services immediately irrelevant to 95% of our audience.
If we want to reach the patients and families who need us we cannot force them to 1st agree that they are dying.
Solution- decouple palliative care from end of life care.

9. Definition of Palliative Care
Palliative care is an interdisciplinary specialty that aims to relieve suffering and improve quality of life for patients with advanced illness, and their families. It is provided simultaneously with all other appropriate medical treatment.

10. Putting palliative care in context
Where did we come from
Where are we now
Where are we going

11. Palliative care- Predisposing environmental factors
Aging population, chronic disease demographics
Payment system mismatch to need
Isolation of hospice from mainstream medicine
AIDS epidemic early 1980s
Quinlan, Cruzan, and later, Schiavo
We have a quality problem: Kevorkian 1990; SUPPORT 1995; Oregon 1997.
Moyers On Our Own Terms, popular media
Private sector investment: RWJF, PDIA >$250 million
Baby boomers with authority/leadership positions in healthcare
Baby boomers with aging parents
Healthcare cost emergency …

12. The State of the Field Hospital palliative care programs: 1,240
ABHPM certified MDs: 2,100
HPNA certified nurses: 15,133
Medicare certified hospices: 4,160
Hospice patients/year: 1.2 million
% of total U.S. deaths: 30%

13. Growth of Hospital Palliative Care Programs 2000-2005
Morrison et al, J Palliat Med 2005

14. Growth in Palliative Care
30% of all U.S. hospitals report a PC program
70% U.S. hospitals with >250 beds report a Palliative Care program
~ 100% penetration in VA hospitals
Lowest growth rate and prevalence of PC is in southern states and in for-profit hospital systems
Factors significantly associated with PC include size (+), teaching hospital (+), hospice affiliation (+), location, and for-profit status (-).
Morrison et al, J Palliat Med 2005

15. Media Highlights This Year
Print:
USA Today “Palliative workers team up to ease the pain” 04/26/07
The New York Times “New options (and risks) in home care for the elderly” 03/01/07
The Chicago Tribune “Where to go when pain won’t quit” 02/18/07
The New York Times “A chance to pick hospice, and then still hope to live” 02/10/07
Los Angeles Times “Life on her terms: Like Art Buchwald…” 02/05/07
Newsweek “Fixing America’s Hospitals” 10/09/06
Total Print Highlights Reach: >14,569,278

16. “No institution is doing everything right
“No institution is doing everything right. But we found 10 that are using innovation, hard work and imagination to improve care, reduce errors and save money.
Determined people are transforming the way U.S. hospitals care for the most seriously ill patients. The engine of change is palliative medicine.
‘The field is growing because it pays attention to the details,’ says Dr. Philip Santa-Emma … ‘It acknowledges that even if we can’t fix the disease, we can still take wonderful care of patients and their families’.”
Newsweek Fixing America’s Hospital Crisis
October 9, 2006

17. Education: New Initiatives
Year-Long Mentoring and CPC Scholars Program: College of Palliative Care
Chair: Jean Kutner, MD MSPH
Council: Diane Meier, Mercedes Bern-Klug, Susan Block, Betty Ferrell, Betty Kramer, Susan LeGrand, Deborah Sherman, James Tulsky; Ex-officio –Judy Lentz, J. Cameron Muir, Steve Smith, Porter Storey
Undergraduate medical education: RWJ
PI: David Weissman MD (+Quill, Block)
Competitive RFA for 6 medical schools to integrate undergraduate medical education into clinical palliative care services

18. Education: New Initiatives
Clinical Scholars Program: AAHPM
Physician mid-career training program
8 centers of excellence selected to provide hours of clinical training
followed by a year-long mentoring program
Capital Hospice, Hospice of the Bluegrass, Medical College of Wisconsin, Midwest Palliative & Hospice Care Center, San Diego Hospice & Palliative Care, Stanford University/VA Palo Alto Hospice and HPC Program, University of Alabama at Birmingham/VA Medical Center Palliative Care Program, University of Pittsburgh Institute to Enhance Palliative Care
Level II (Advanced) Seminars for Growth and Sustainability for Palliative Care Programs: CAPC
Seminar series focused on assisting established PC programs

19. Quality Guidelines: The United Front
National Consensus Project on Quality Palliative Care: Essential Elements and Best Practices
Established consensus guidelines for palliative care clinical programs with NHPCO, HPNA, AAHPM, CAPC, 2004
(Chairs: Betty Ferrell and Diane Meier)
Dissemination phase 2004-present
Funding: RWJ and AVD Foundations

20. Quality Guidelines: The National Quality Forum
A National Framework and Preferred Practices for Quality Palliative and Hospice Care
Based on NCP & a new advisory panel
Framework released February 2007.
38 Preferred Practices within 8 Domains

21. National Quality Forum Impact of Preferred Practices
NQF links best practices in healthcare to reimbursement
NQF imprimatur very important to Medpac and policy/payers
Provides clear guidelines (a “Framework”) on what a program should look like
Implications for palliative care competencies and program development, certification, accreditation
BUT: No performance our outcome measures because of the lack of an evidence base

22. Coming soon… Joint Commission Palliative Care Certification
Similar to programs for diabetes and stroke care
Approved by the JC Board in November 2006
Certificate Program start 2008
Hospital leadership message –palliative care contributes to reputation for national excellence.
Operationalizes NQF Framework
Voluntary – not (yet) an accreditation requirement
Implications:
The Joint Commission says that this is important: Incentive for hospitals to start programs

23. Growth of Palliative Care
Dramatic increase in clinical programs
Growth and maturation of professional membership organizations
Sub-specialty status for physicians
Major quality and policy initiatives

24. But… Lack of a solid evidence base to guide clinical care
Pain, symptoms, bereavement
Lack of health services research to guide delivery of care
Hospitals, Hospice, Ambulatory Care
Cancer, COPD, CHF, AD
Lack of basic science research that will lead to new treatment modalities
Symptoms, Resilience, Prolonged Grief Disorder

25. Without Research… Specialty without solid clinical foundation
High on the arrogance/ignorance axis
Specialty without an academic platform
Academic Departments do not exist without research
No “R” dollars, No teaching platform
Specialty without credibility/power at NIH, IOM, AAMC

26. Status of Palliative Care Research

27. Palliative Medicine Research Funding
Aims:
To identify sources of funding for palliative care research published from
To examine NIH funding of palliative care research from
Gelfman LP, Morrison RS. J Palliat Med, In press

28. Palliative Medicine Research Funding: Methods
Investigator Identification
Reviewed all research articles published from in palliative care (PC), major general medicine journals, and relevant subspecialty journals and abstracted names of first and last author
Abstracted names of editorial board members of PC journals
Searched Pub-Med ( ) using key words and MESH terms “palliative Care”, “end-of-life care”, “hospice” and “end-of-life” and abstracted the first and last authors’ names from identified articles
Collected names of all PDIA Faculty Scholars.
All abstracted names submitted to NIH who cross-matched names against funded grant proposals.
Other funding sources determined by abstracting funding information from all articles identified in search and searching relevant VA, foundation, and industry websites.
Gelfman LP, Morrison RS. J Palliat Med, In press

29. Palliative Medicine Research Publications & Funding (2003-2005)
Gelfman LP, Morrison RS. J Palliat Med, In press

30. Palliative Care Publications: 2007

31. NIH Funding for Palliative Care (2001-2005)
109 of the 2,212 names submitted were identified as PIs on 418 awards
NIH Award Types:
69 (17%) grants were career development awards
44 to junior investigators
17 to mid-career/senior investigators
8 to investigators whose status couldn’t be determined
275 (66%) were research awards (80% R01s, 20% R21/R03s)
49 (12%) were education awards
25 (5%) represented other funding mechanisms.
Gelfman LP, Morrison RS. J Palliat Med, In press

32. NIH Funding for Palliative Care (2001-2005)
Funding by NIH Institutes:
189 (45%) were funded by NCI (0.4% of all NCI grants)
94 (22%) by NINR (3% of all NINR grants)
74 (18%) by NIA (0.5% of all NIA grants)
21 (5%) by NIMH (0.1% of all NIMH grants)
40 (10%) were funded by 8 other Institutes/Centers.
Gelfman LP, Morrison RS. J Palliat Med, In press

33. Palliative Care Research
Well documented need for increased palliative care evidence base and palliative care research
Reports from IOM (4), AAHPM research task force, NIH State of the Science Conference (2)
Barriers:
Lack of research funding
Federal budget cuts combined with withdrawal of major foundation support for palliative care have resulted in a withdrawal rather than an increase in support for palliative care research.
Lack of Investigators (junior, mid-career, senior)
Lack of Mentors

34. National Palliative Care Research Center (www.npcrc.org)
Center developed in response to the:
Shortage of palliative care funding structures;
Shortage of palliative care investigators;
Need for a national organizational home for palliative care research.
Primary mission is to improve quality of care for patients with serious illness and the needs of their caregivers by promoting palliative care research and translating research results into clinical practice.

35. Funders Emily Davie and Joseph S. Kornfeld Foundation
The Brookdale Foundation
The Olive Branch Foundation

36. NPCRC Areas of Focus
Exploring the relationship of pain and other distressing symptoms on quality and quantity of life, independence, function, and disability and developing interventions directed at their treatment in patients with advanced and chronic illnesses of all types;
Studying methods of improving communication between adults living with serious illness with their families and their health care providers;
Evaluating models and systems of care for patients living with advanced illness and their families under the current reimbursement structure.

37. NPCRC Activities Pilot/Exploratory Grants
Goal is to provide experienced investigators with pilot/exploratory data that will support larger NIH/VA/Foundation (e.g, ACS) funded research grant
Junior Investigator Career Development Awards
Goal is to provide 2 years of protected time for junior investigators in palliative care
Annual Research Retreat and Symposium

38. What will the next 2 1/2 days hold?

39. Who is in the room? NPCRC American Cancer Society
CDA grantees and their mentors
P/E grantees
Scientific Advisory Committee and Scientific Review Committee Members
American Cancer Society
Grantees
Program Directors
College of Palliative Care
Scholars
Council members
Funders and Supporters
18 RNs, 7 SW, 25 MD, 9 other (psychology, health services research, behavioural medicine), and 2 JDs
16 Junior investigators, 39 Experienced investigators

40. NPCRC Initiatives (2006-2007) First RFA 2006-2007 (6 awards in total)
Pilot exploratory projects
Investigators performing pilot/exploratory research studies that focus on improving care for seriously ill patients and their families.
Projects must test interventions, develop research methodologies, and explore novel areas of research that related to the Center's core mission
Projects require a clearly defined plan as to how the results will be used to develop larger, extramurally funded research projects.
Response:
Received 73 LOI, 54/62 eligible applications submitted for review
3 funded
Career Development Awards
Designed to provide junior faculty with 2 years of protected mentored research time to develop their academic careers
Received 28 LOI, 19/21 eligible applications submitted for review
3 awarded (2 NPCRC funded, 1 subsequently funded as a K23 award)

41. ACS Palliative Care Pilot Grant Initiative
$500K/year for 5 years to support pilot/exploratory projects in palliative care
First RFA
146 applications received
5 funded from the RFA
2 subsequently funded through local chapters
5 proposals jointly submitted to NPCRC

42. CPC Scholars Program
Provides funding for US-based physicians, nurses, and social workers to participate in this retreat
Intended for individuals who are or will soon be applying for a K award or other career development award.
Priority given to applicants who have a demonstrated commitment to an independent palliative care research career
College received 31 applications
12 Scholars funded to attend this retreat
2 MD, 5 RN, 5 SW

43. In Summary….
Pilot Exploratory Grants: 214 unique applicants, 10 awarded (5%)
Junior Faculty: 21 unique applicants, 3 awarded (14%)
ACS/NPCRC/CPC: 266 applicants, 25 awarded (9%)
NPCRC goal is to raise sufficient funds to double our grant offerings and to develop alternative funding sources through collaborations with other organizations like ACS

44. Our Schedule…

45. Tonight 5:30-6:30 pm: Wine and cheese reception
6:30 – 9:00 pm: Dinner with grantee poster presentations
ACS, NPCRC, CPC funded projects

46. Tuesday
9:00 – 10:30 am: A Program of Quality of Life and Palliative Care: Twenty Three Years of Failure, Error, Mishaps, and Disaster (Ferrell)
Presentation and discussion
10:45 am – 12:15 pm: Concurrent Research in Progress presentations (4 Groups)
12:30 – 2:00 pm: The Third Way: Working with foundations, organizations, and philanthropists (Elk, List, Meier)
Presentation, discussion, & lunch
2:00 – 6:00 pm: Networking/Free Time
6:00 – 7:30 pm: Dinner
8:00 – 9:30 pm: Concurrent Didactic Sessions (2 Groups)
Developing a Program of Research: Challenges, Problem Solving, and Solutions (Experienced investigators)
Introduction to the NIH Process and a Mock Study Section (Junior Investigators)

47. Wednesday 8:00 – 9:00 am: Breakfast
9:00 – 10:30 am: Concurrent Small Group Research Discussions (3 Groups)
Pain and symptom research
Communication research
Health services research
10:45 am – 12:15 pm: Concurrent Discipline Specific Small Group Discussions (Medicine, Nursing Social Work)
12:15 – 1:30 pm: “Where do people want to die?” (Addington-Hall)
Closing presentation and lunch

48.
Thank you!

49. Comments Questions Discussion