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National Palliative Care Research Center Retreat (NPCRC)


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Title: National Palliative Care Research Center Retreat (NPCRC)

National Palliative Care Research Center Retreat
  • 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.

  • 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

NHWG Adapted from work of the Canadian
Palliative Care Association Frank Ferris, MD
Our Vision of Palliative Care
Disease Modifying Therapy Curative, or
restorative intent
Life Closure
Death Bereavement
Diagnosis Palliative Care Hospice
What is palliative care?
Its not about death and dying...
  • Project on Death in America
  • Soross OSI initiative to fund palliative care
  • 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
  • Institute of Medicine report
  • Books
  • Handbook for Mortals, Dying Well, The Good

People have an abiding desire not to be dead
I dont want to achieve immortality through my
work. Id 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 illthe
    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
  • 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 gt250
  • 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
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 gt250 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
  • 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 wont
    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 Americas Hospitals 10/09/06
  • Total Print Highlights Reach gt14,569,278

  • 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
  • The field is growing because it pays
    attention to the details, says Dr. Philip
    Santa-Emma It acknowledges that even if we
    cant fix the disease, we can still take
    wonderful care of patients and their families.
  • Newsweek Fixing Americas Hospital Crisis
  • October 9, 2006
  • http//

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

Education New Initiatives
  • 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
  • Level II (Advanced) Seminars for Growth and
    Sustainability for Palliative Care Programs
  • 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)
  • 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.
  • http//
  • 38 Preferred Practices within 8 Domains

National Quality Forum Impact of Preferred
  • NQF links best practices in healthcare to
  • NQF imprimatur very important to Medpac and
  • 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
  • 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
  • Operationalizes NQF Framework
  • Voluntary not (yet) an accreditation
  • 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
  • Sub-specialty status for physicians
  • Major quality and policy initiatives

  • Lack of a solid evidence base to guide clinical
  • 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
  • No R dollars, No teaching platform
  • Specialty without credibility/power at NIH, IOM,

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
  • Abstracted names of editorial board members of PC
  • 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
  • Collected names of all PDIA Faculty Scholars.
  • All abstracted names submitted to NIH who
    cross-matched names against funded grant
  • 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)
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 couldnt be
  • 275 (66) were research awards (80 R01s, 20
  • 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
  • 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

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,
  • Lack of Mentors

National Palliative Care Research Center
  • 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.

  • 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

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
  • 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?
  • 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
  • 16 Junior investigators, 39 Experienced

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
  • 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
  • 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
  • 530-630 pm Wine and cheese reception
  • 630 900 pm Dinner with grantee poster
  • ACS, NPCRC, CPC funded projects

  • 900 1030 am A Program of Quality of Life and
    Palliative Care Twenty Three Years of Failure,
    Error, Mishaps, and Disaster (Ferrell)
  • Presentation and discussion
  • 1045 am 1215 pm Concurrent Research in
    Progress presentations (4 Groups)
  • 1230 200 pm The Third Way Working with
    foundations, organizations, and philanthropists
    (Elk, List, Meier)
  • Presentation, discussion, lunch
  • 200 600 pm Networking/Free Time
  • 600 730 pm Dinner
  • 800 930 pm Concurrent Didactic Sessions (2
  • Developing a Program of Research Challenges,
    Problem Solving, and Solutions (Experienced
  • Introduction to the NIH Process and a Mock Study
    Section (Junior Investigators)

  • 800 900 am Breakfast
  • 900 1030 am Concurrent Small Group Research
    Discussions (3 Groups)
  • Pain and symptom research
  • Communication research
  • Health services research
  • 1045 am 1215 pm Concurrent Discipline
    Specific Small Group Discussions (Medicine,
    Nursing Social Work)
  • 1215 130 pm Where do people want to die?
  • Closing presentation and lunch

48 Thank you!
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