Slide1:
Palliative Care Comes of Age
Diane E. Meier, MD
Director,
Center to Advance Palliative Care
Orlando, Florida
June 21, 2007
Objectives: Objectives Understand what CAPC is about
Get a sense of who else is at this meeting
Preview the content of the next 2 days
Agree on the definition of palliative care
Place your work in national context
Center to Advance Palliative Care: Center to Advance Palliative Care Vision: All patients with advanced illness and their families will have access to quality palliative care throughout the disease course and across care settings.
Mission: To increase the availability of quality palliative care services in hospitals and other health care settings for people with advanced illness.
Goals:
Bottom up strategy- Help professionals in hospitals to establish and sustain quality palliative care programs.
Top down strategy- Support policy, accreditation, payment, research and educational change necessary to embed and formalize palliative care in the nation’s healthcare system.
Slide4: Formalizing Activities:
Create supportive environment via media, accreditation, policy, payors, research, education Core Activities:
Increase # and quality of hospital palliative care programs via technical assistance
CAPC Products: CAPC Products National seminars for core operational competencies: beginners and advanced (new!)
Palliative Care Leadership Centers: Mentored team training
www.capc.org
www.getpalliativecare.org
The Guide
Audioconferences
Publications
Distance learning (new!)
PRINT PRODUCTS: A Guide to Building A Hospital-Based Palliative Care Program 2,500 sold/distributed this year: PRINT PRODUCTS: A Guide to Building A Hospital-Based Palliative Care Program 2,500 sold/distributed this year Business Plans
Financial Analysis
Assessment Tools
Handling Referrals
Staffing Issues
Clinician Billing
Marketing
Protocols
New Print Products 2007: New Print Products 2007 Top Ten Essential Tools
Successful Hospice-Hospital Partnerships
Rural Palliative Care Critical Access
NQF Crosswalk
Technical Assistance: Internet: Technical Assistance: Internet
www.capc.org
www.getpalliativecare.org
Web Content: Web Content Downloadable power point
Financial spread sheets to make the case and track outcomes
Sample brochures and marketing materials
Standardized clinical and data entry tools
Policies and procedures
Recommended quality and utilization measures
Audience-specific message strategy
Clearinghouse for training and educational resources
Slide13: Technical Assistance National Seminars: Training for New Program Development CAPC Seminar, San Diego, 10/03, 10/05 CAPC Seminar, New York, 10/04, 4/01 Fairview CAPC Seminar, Miami, 3/05 CAPC Seminar, Minneapolis, 5/04 13 CAPC Seminars on Building Hospital-Based Palliative Care Programs Total seminar attendees = 3,014 Total # institutions served = 2,110
CAPC Seminar, Oakland, 7/01 CAPC Seminar, Philadelphia, 3/03 CAPC Seminar, Seattle, 6/02 CAPC Seminar, New Orleans, 10/02 CAPC Seminar, Chicago, 10/01, 10/06 CAPC Seminar, Washington, DC, 12/00 CAPC Seminar, San Francisco, 11/07
Slide14: Technical Assistance Palliative Care Leadership Centers On-site Team Training Fairview Medical College of Wisconsin Massey Cancer Center Hospice of the Bluegrass University of California, San Francisco Mt Carmel Fairview Health Services Total since 2004: 591 institutions, 3120 individuals
Investment in a new generation of leaders
Next up: Products to Improve Access and Quality: Next up: Products to Improve Access and Quality Distance-learning: webinars, on-line courses, threaded discussions and list serves- creation of virtual learning communities
Building a web database for reporting and benchmarking for quality improvement and standardization
PCLC II
Who is here and why?: Who is here and why? 250 attendees
% nurses
% doctors
% administrators
Stage of program
CAPC Faculty and staff
PCLC Faculty
What will the next 2 days hold?: What will the next 2 days hold?
Slide18: Tackling the challenges of growth and sustainability Strategic planning
Business case for multi-year sustainability
Team dynamics
Burnout
Leadership development
Running family meetings
Hospice-hospital partnerships
Nursing home models
“Lab time” and “Office Hours”
Philanthropy
Foundations
Getting referrals
Planning for growth
Staffing ratios
Networking, community building
Consultation etiquette 202
Coding and billing
Measuring success
What is palliative care?: What is palliative care?
NHWG; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD: Death &
Bereavement Disease Modifying Therapy
Curative, or restorative intent Life
Closure Diagnosis Palliative Care Hospice
A New Vision of Palliative Care NHWG; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD
Why is non hospice palliative care necessary?: Why is non hospice palliative care necessary? I don’t want to achieve immortality through my work. I’d rather achieve it by not dying. Woody Allen
Watch our language- it drives our audience away: Watch our language- it drives 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.
Solution- decouple palliative care from end of life care- call it non hospice palliative care.
Language matters: Language matters Communicate who we are and what we do to patients, families, and colleagues using language that focuses on the needs of the audience as they perceive them- for patients+families: relief, practical help. For referring docs: time and assistance. For hospitals: quality and efficiency.
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.
Use the language of the National Consensus Project for Quality Palliative Care, National Quality Forum, and CAPC.
Definitions: Definitions CAPC: 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.
NCP: The goal of palliative care is to prevent and relieve suffering and support the best possible quality of life for patients of all ages and their families. Palliative care is a both a philosophy of care and an organized program for delivering care to persons of all ages with life threatening conditions. This care focuses on enhancing quality of life for patient and family, optimizing function, helping with decision-making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life prolonging care or as the main focus of care.
National Quality Forum: Palliative care refers to patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.
Putting palliative care in context: Putting palliative care in context
Where did we come from
Where are we now
Where are we going
Palliative care- Predisposing environmental factors: 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
…
Where are we now? CAPC Goals and Outcomes: Where are we now? CAPC Goals and Outcomes Goal: To increase the number and quality of palliative care programs in the U.S.
Outcomes: 96% increase in number of programs from 668 to 1240 between 2000 and 2005 based on AHA annual survey
Why Focus on Hospitals?: Why Focus on Hospitals?
“Because that’s where the money is…”
…Willie Sutton on why he robbed banks
U.S. Hospital Based Palliative Care Programs: AHA Survey 2001: U.S. Hospital Based Palliative Care Programs: AHA Survey 2001
U.S. Hospital Based Palliative Care Programs in 2005 (AHA Survey 2007): U.S. Hospital Based Palliative Care Programs in 2005 (AHA Survey 2007)
# Hospital Palliative Care Programs 2000-2005 AHA Survey 2007: # Hospital Palliative Care Programs 2000-2005 AHA Survey 2007
Growth in Palliative Care: 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 (-).
The present: The present 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%
Building connections with national organizations and leaders, promoting broad media exposure…: Building connections with national organizations and leaders, promoting broad media exposure… The Media – Newsweek, LA Times, NY Times, Buchwald, USA Today…
Physician and nursing certification
Education: new initiatives
National Consensus Project for Quality Palliative Care: 2004
National Quality Forum Framework for Hospice and Palliative Care: 2007
JCAHO Palliative Care Certificate Program
Performance measures
Research: NIH, NPCRC, ACS
Media Highlights this year: 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
Slide37: “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/
Physician Certification: Palliative Medicine is an Official Medical Subspecialty ! : Physician Certification: Palliative Medicine is an Official Medical Subspecialty ! ABMS and ACGME approval in 2006
In 2008 ABIM will administer new Board exam
Grandfathering period 2008-2012
- no fellowship required during this time
Fellowship trained candidates only after 2013
Physician Certification: Implications: Physician Certification: Implications Impact on number of board-certified MDs
Impact on practice patterns
GME training cap: Potential loss of fellowship slots – Medicare cap waiver unlikely
Palliative care clinicians: Take the exam as soon as it is offered.
Explanatory 1-pager available on CAPC website.
Education: 2 New Initiatives: Education: 2 New Initiatives 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
Mid-career MD education: AAHPM
PI: AAHPM
Physician mid-career certificate training program, recruiting training centers now
3. Other educational initiatives: www.capc.org/palliative-care-professional-development/Training/ www.aahpm.org, www.hpna.org, www.eperc.mcw.edu, www.growthhouse.org, www.nhpco.org
Quality Guidelines: The United Front: Quality Guidelines: The United Front National Consensus Project on Quality Palliative Care: Essential Elements and Best Practices
Chair, Betty Ferrell PhD Established consensus guidelines for palliative care clinical programs with NHPCO, HPNA, AAHPM, CAPC, 2004
www.nationalconsensusproject.org
Dissemination phase 2004-present
Funding: RWJ and AVD Foundations
Quality Guidelines and Best Practices: The National Quality Forum : Quality Guidelines and Best Practices: The National Quality Forum A National Framework and Preferred Practices for Quality Palliative and Hospice Care
Based on NCP- 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: National Quality Forum Examples of Best Practices
Preferred Practice 2: Provide access to palliative and hospice care that is responsive to the patient and family 24 hours a day, 7 days a week.
Preferred Practice 5: Hospice care and specialized palliative care professionals should be appropriately trained, credentialed, and/or certified in their area of expertise.
Preferred Practice 12: Measure and document pain, dyspnea, constipation, and other symptoms using standardized scales.
Preferred Practice 22: Specialized palliative and hospice care teams should include spiritual care professionals appropriately trained and certified in palliative care.
Preferred Practice 35: Make advance directives and surrogacy designations available across care settings, while protecting patient privacy…by Internet-based registries or electronic personal health records.
National Quality Forum Impact of Preferred Practices: 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
No performance measures
Implications for palliative care competencies and program development, certification, accreditation
Coming soon… JCAHO Palliative Care Certification : Coming soon… JCAHO Palliative Care Certification Similar to programs for diabetes and stroke care
Approved by JCAHO 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:
Internal marketing – JCAHO says this is important: Start or strengthen your program! Prepare to get your certificate!
Research: Research Why it matters
Examples of high impact research
NIH and palliative care
National Palliative Care Research Center www.npcrc.org
Why does research matter?: Why does research matter? Provides critical evidence base to guide quality clinical care for patients and families--- examples to follow
Without research, there will be no palliative care training within the nation’s leading medical schools.
Power and position within medical schools is based upon research funding and productivity
A Few Examples of Research that Matters: A Few Examples of Research that Matters
Communicating with families: Azoulay et al, Schneiderman et al, Campbell et al, Lilly et al, Lautrette et al.
Costs: Smith et al, Penrod et al, Back et al, Morrison et al.
Growth and impact of palliative care: Jordhoy et al, Higginson et al, Morrison et al.
Communication Improves Utilization and Other Important ICU Outcomes: Communication Improves Utilization and Other Important ICU Outcomes Lilly et al. An intensive communication intervention for the critically ill. Am J Med 2002; 165:438-42.
Campbell et al. Impact of a proactive approach to improve end-of-life care in a medical ICU. Chest 2003;123:266-71.
Schneiderman et al. Effect of ethics consultations on nonbeneficial life-sustaining treatments in the ICU setting. JAMA 2003; 290:1166-1172.
Printed Informational Materials Improve Patient/Family-Focused Outcomes: Two RCTs: Printed Informational Materials Improve Patient/Family-Focused Outcomes: Two RCTs Lautrette et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 2007; 356:469-478.
Azoulay et al. Impact of a family information leaflet on effectiveness of information provided to family members of ICU patients. Am Rev Resp Crit Care Med 2002; 165:438-42.
Cost Outcomes: Cost Outcomes Back AL et al.Impact of palliative care case management on resource use by patients dying of cancer at a Veterans Affairs medical center.J Palliat Med. 2005 Feb;8(1):26-35.
Penrod JD et al.Cost and utilization outcomes of patients receiving hospital-based palliative care consultation. J Palliat Med. 2006 Aug;9(4):855-60.
Smith TJ. A high-volume specialist palliative care unit and team may reduce in-hospital end-of-life care costs. J Palliat Med. 2003 Oct;6(5):699-705.
Morrison et al. Impact of hospital palliative care consultation teams on costs: An eight hospital study. J Amer Geriatr Soc April 2007 abstract.
Slide53: March 10, 2004
Cost and ICU Outcomes Associated with Hospital Palliative Care Consultation 8-hospital study (adjusted results) Morrison et al JAGS supplement April 2007 n>25,000 subjects: Cost and ICU Outcomes Associated with Hospital Palliative Care Consultation 8-hospital study (adjusted results) Morrison et al JAGS supplement April 2007 n>25,000 subjects
8 Hospital Study: Costs/day for patients who died with palliative care vs. matched usual care patients: 8 Hospital Study: Costs/day for patients who died with palliative care vs. matched usual care patients
Growth and Impact of Palliative Care: Growth and Impact of Palliative Care Jordhoy et al. Quality of life in palliative cancer care: results from a cluster randomized trial J Clin Oncol. 2001 Sep 15;19(18):3884-94.
Higginson IJ et al. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage. 2002 Feb;23(2):96-106.
Morrison RS et al. The growth of palliative care programs in United States hospitals. J Palliat Med. 2005 Dec;8(6):1127-34.
NIH Funding: The Bad News: NIH Funding: The Bad News Gelfman and Morrison- in press JPM 2007
Review of 2003-05 research articles and funding sources
<0.5% of all NIH grants were devoted to palliative care topics
How do we influence this?
National Palliative Care Research Center: National Palliative Care Research Center Center developed in response to the:
Shortage of palliative care funding structures;
Shortage of palliative care investigators;
Need for an organizational home for palliative care research.
Primary goal 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.
National Palliative Care Research Center: National Palliative Care Research Center Director: Sean Morrison MD
Funding: Kornfeld, Brookdale, Olive Branch, Foundations
Pilot grants and career development awards for palliative care, first RFA released 2006, 1st round funding decisions May 2007.
Pilot data and career development support are prerequisite to successful competition for NIH funding
NPCRC+CAPC Research underway: NPCRC+CAPC Research underway Palliative Care State Report Cards
Jessica Dietrich, Lisa Morgan, and Sean Morrison
Objectives:
To develop individual state reports on the location and number of PC Programs
Methods:
AHA dataset supplemented by CAPC survey of all AHA hospitals
Publication of state results with accompanying media and public relations campaign.
Future NPCRC+CAPC Research: Future NPCRC+CAPC Research National Benchmarking Database
Jessica Dietrich, Lynn Spragens, Sean Morrison
To develop a national database of key structure and process measures in order to promote PC benchmarking
To understand the core structures and processes of PC programs
To allow individual hospitals to benchmark their programs against national averages and similar hospitals
College of Palliative Care at AAHPM www.aahpm.org: College of Palliative Care at AAHPM www.aahpm.org Funded by PDIA and AAHPM
Goal: support academic field
Director: Jean Kutner MD with support of a Council of RN SW MD leaders
Multidisciplinary (medicine, nursing, social work) program within AAHPM
Research retreat with NPCRC: September 2007
Short and long term mentoring programs to build a cadre of successful palliative care researchers
NHPCO www.nhpco.org: NHPCO www.nhpco.org Exponential growth in # new hospices, mostly for-profit
Launching national quality and benchmarking initiative on-line for member hospices
Planning to establish a “big tent” holding company for NHO, FAHSSA, Caring Connections, National Hospice Foundation, and possibly a new National Palliative Care Organization by 2008.
Major development and advocacy thrust
How we are viewed by the outside world… Citizens Health Care Working Group Mandated by Congress, appointed by Comptroller General of the U.S.: How we are viewed by the outside world… Citizens Health Care Working Group Mandated by Congress, appointed by Comptroller General of the U.S. After 6 hearings, 50 community meetings in 30 states and DC, review of all major public opinion polls 2002-06, 10,000 responses to web polls, review of 5,000 individual commentaries, concludes:
“A picture has been sketched for us of a health care system that is unintelligible to most people. They see a rigid system with a set of ingrained operating procedures that long ago became disconnected from the mission of providing people with humane, respectful and technically excellent health care.”
June 1, 2006, page 1 www.citizenshealthcare.gov
And the solution… Recommendation 6 (out of 6):: And the solution… Recommendation 6 (out of 6): “Fundamentally restructure the way that palliative care, hospice care and other services are financed and provided so that people living with advanced conditions have increased access to these services in the environment they choose.”
The purpose of this meeting, redux: The purpose of this meeting, redux All patients should have access to quality palliative care
How? By assuring that you survive and thrive
What will that take?
Creating a professional community
Supporting ourselves: Prevent and address burn out
Leadership development
Speeding up the training pipeline
Technical assistance
Demonstrate quality
Demonstrate efficiency
Supportive policy and regulation
Slide67: www.capc.org
Thank you!
Comments Questions Discussion: Comments Questions Discussion