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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
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.
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
Death &Bereavement
Disease Modifying TherapyCurative, or restorative intent
LifeClosure
Diagnosis Palliative Care Hospice
Our Vision of Palliative Care
NHWG; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD
What is palliative care?
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”
…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
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.
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.
Putting palliative care in context
• Where did we come from
• Where are we now
• Where are we going
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 2000-• Private sector investment: RWJF, PDIA >$250 million• Baby boomers with authority/leadership positions in healthcare• Baby boomers with aging parents• Healthcare cost emergency• …
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%
Growth of Hospital Palliative Care Programs 2000-2005
500
600
700
800
900
1000
1100
1200
1300
2000 2001 2002 2003 2004 2005
Morrison et al, J Palliat Med 2005
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
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
“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
http://www.msnbc.msn.com/id/15175919/site/newsweek/
Education: New Initiatives
1. Year-Long Mentoring and CPC Scholars Program: College of Palliative Care
Chair: Jean Kutner, MD MSPHCouncil: 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
2. Undergraduate medical education: RWJPI: David Weissman MD (+Quill, Block)Competitive RFA for 6 medical schools to integrate undergraduate
medical education into clinical palliative care services
Education: New Initiatives
3. Clinical Scholars Program: AAHPMPhysician mid-career training program8 centers of excellence selected to provide 40-120 hours of clinical trainingfollowed 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
4. Level II (Advanced) Seminars for Growth and Sustainability for Palliative Care Programs: CAPC
Seminar series focused on assisting established PC programs
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)• www.nationalconsensusproject.org• Dissemination phase 2004-present• Funding: RWJ and AVD Foundations
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.
www.qualityforum.orghttp://216.122.138.39/publications/reports/palliative.asp
38 Preferred Practices within 8 Domains
National Quality ForumImpact 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
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
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
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
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
Status of Palliative Care Research
Palliative Medicine Research Funding
• Aims:– To identify sources of funding for palliative
care research published from 2003-2005– To examine NIH funding of palliative care
research from 2001-2005
Gelfman LP, Morrison RS. J Palliat Med, In press
Palliative Medicine Research Funding: Methods
• Investigator Identification– Reviewed all research articles published from 2001-2005 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 (2001-2005) 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
Palliative Medicine Research Publications & Funding (2003-2005)
0
50
100
150
200
250
300
350
400
Total PC
J ournals
Non-PC
J ournals
No
Funding
Gelfman LP, Morrison RS. J Palliat Med, In press
Palliative Care Publications: 2007
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
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
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
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.
Funders
• Emily Davie and Joseph S. Kornfeld Foundation
• The Brookdale Foundation
• The Olive Branch Foundation
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.
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
What will the next 2 1/2 days hold?
Who is in the room?
• NPCRC– 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
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)
ACS Palliative Care Pilot Grant Initiative
• $500K/year for 5 years to support pilot/exploratory projects in palliative care
• First RFA 2006-2007– 146 applications received
• 5 funded from the RFA• 2 subsequently funded through local chapters
– 5 proposals jointly submitted to NPCRC
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
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
Our Schedule…
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
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)
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
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