National Palliative Care Research Center Retreat NPCRC

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. NHWG; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD LIKE ENSURE, WE HAVE AN OPPORTUNITY TO EXTEND THE ACCESS POINT PAST THE �SICK POINT�LIKE ENSURE, WE HAVE AN OPPORTUNITY TO EXTEND THE ACCESS POINT PAST THE �SICK POINT�

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

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 2000- 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

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 (-).

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. 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/

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 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: 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) www.nationalconsensusproject.org 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. www.qualityforum.org http://216.122.138.39/publications/reports/palliative.asp 38 Preferred Practices within 8 Domains

21. 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

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 2003-2005 To examine NIH funding of palliative care research from 2001-2005

28. 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.

29. Palliative Medicine Research Publications & Funding (2003-2005)

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.

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.

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 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 2006-2007 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

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