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
Our Vision of Palliative Care
Disease Modifying Therapy
Curative, or restorative intent
Diagnosis
Palliative Care
Life
Closure
Hospice
Death &
Bereavement
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 carePredisposing 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 2000Private 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%
1300
Growth of Hospital
Palliative Care Programs
2000-2005
1200
1100
1000
900
800
700
600
500
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 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
2. 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
Education: New
Initiatives
3.
Clinical Scholars Program: AAHPM
Physician mid-career training program
8 centers of excellence selected to provide 40-120 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
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.org
http://216.122.138.39/publications/reports/palliative.asp
38 Preferred Practices within 8 Domains
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
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)
400
350
300
250
200
150
100
50
0
Total
PC
Non-PC
Journals Journals
No
Funding
Gelfman LP, Morrison RS. J Palliat Med, In press
Palliative Care
Publications: 2007
NIH Funding for
Palliative Care (20012005)
• 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 (20012005)
• 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
www.npcrc.org
Thank you!
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