Transforming Traditional Care to Palliative Care –

Repackaging Death as Life

Elizabeth D. Wickham, PhDExecutive Director, LifeTree

Chicago, ILNovember 9th, AD 2013

Dr. Diane Meyer on Palliative Care• "It's not fair to expect the US government to be

able to change the US's addiction to fee-for-service overnight. Those of us in medicine know you don't take an addict cold turkey ...; you have to taper, or the patient will die... It has to be a gradual process of change. And that gradual process is what's built

Source: Diane Meier presentation, “Palliative Care: A Cure for Meaningless Suffering” at the Madison-Deane Initiative, March 28, 2011

http://www.cctv.org/node/104899

into the health reform bill. Very gradual increases in paying people for quality, helping people to get used to working under a fixed budget, which we used to call capitation, but now we call it accountable care organizations and patient-centered medical homes and bundling strategies.... Now, that was very effectively bashed both during and after health reform, as rationing and euthanasia... but the fact remains that unless we are able to think about both quality and costs, we will become a third world nation ourselves, just because of healthcare spending."

Leadership

© Ione Whitlock

Form 990 – Partnership for Caring

Participants at Soros Meeting, 11/1995AARP Andrus Foundation: John Feather, Dir.American Suicide Foundation: Herbert Hendin, Ex. Dir.Colorado Collective for Medical Decisions, Inc.: Donald Murphy, Pres.Columbia Foundation: Susan Clark, Ex. Dir.Commonwealth Fund: Karen Davis, Pres.Council on Foundations: Mary Ann Zehr Greenwall Foundation: William Stubing, Pres. Mayday Fund and Kornfeld Foundation: Fenella Rouse, Ex. Dir.Milbank Memorial Fund: Christine Cassel, chair of the Department of Geriatrics and Adult Development at Mt. Sinai Medical School Nathan Cummings Foundation: Charles Halpern, Pres; Andrea Kydd, Dir., health program New York Community Trust: Len McNally, Sr. Prog. Off.Non-Profit Management Associates, Inc.: Thomas Bryant, Chrm. Open Society Institute: Aryeh Neier, Pres.; Liz Lorant, Dir., Medical and Health Programs in Eastern Europe Project on Death in America: Kathleen Foley, Dir., and chief of pain service at Memorial Sloan- Kettering Cancer Center Susan Block, board member, Dir. of the Faculty Scholars Program, and professor, Harvard Medical School and Harvard Community Health Plan Joanne Lynn, board member, and Dir., Center to Improve Care of the Dying, The George Washington University Patricia Prem, board member, and social worker David Rothman, board member, and Dir., Center for the Study of Society and Medicine at Columbia University’s College of Physicians and Surgeons Robert Wood Johnson Foundation: Lewis Sandy, VP; Rosemary Gibson, program officer; Paul Tarini, communications officer Rockefeller Family Office: Charles Terry, Dir. of philanthropy United Hospital Fund: David Gould,VP for program Wallace Alexander Gerbode Foundation: Thomas Layton, Ex. Dir.

Source: http://web.archive.org/web/20070210230310/http://www2.soros.org/death/news1.htm

Participants at the first Last Acts Conference, 3/1996

Laury L. AdsitMadalon Amenta

Paul Armstrong (F)Lynn Beauregard

Lois BergeisenLinda Blank

Susan BlockDiane Blum

Carmella BocchinoAnne BolingLynn Brallier

Thomas E. BryantRoger J. Bulger

Michael BurchPhyllis Byard

Daniel Callahan (S)Lisa CarlsonEllie Carper

Mike ChristensonMyra Christopher

Elizabeth Clark (F)Chris Cody

Ruth C. CohenRubin Copperman

Mary Ellen CourtrightJohn B. Crosby

Neal E. CutlerThomas Delbanco (S)

Steven DevlinVirginia Dize

Richard DoerflingerG. Kevin Donovan

National Academy of Elder Law AttorneysHospice Nurses AssociationTimins and AssociatesAlliance for Aging ResearchAssociation of American Medical CollegesAmerican Board of Internal MedicineHarvard Medical School & Project on Death in AmericaCancer Care, Inc.AAHP/AMCRACenter to Improve Care of the DyingConsciousness Connections FoundationHospice Foundation of AmericaAssociation of Academic Health CentersThe American LegionFuneral and Memorial Societies of AmericaThe Hastings CenterFuneral and Memorial Societies of AmericaCenter to Improve Care of the DyingAllina FoundationMidwest Bioethics CenterNational Coalition for Cancer SurvivorshipNational Hospice OrganizationNational Association of Professional Geriatric Care ManagersRetired physicianFHP FoundationAmerican Medical AssociationBoettner Center of Financial GerontologyBeth Israel Hospital/Picker InstituteBoettner Center of Financial GerontologyNational Association of State Units on AgingNational Conference of Catholic BishopsOklahoma Bioethics Center/American Academy of Pediatrics

Catherine EhlenMichelle Grant Ervin (F)

John FeatherBetty R. Ferrell

Marilyn FieldLinda Fink

John C. FletcherKathleen Foley (S, F)

Robert B. FriedlandArnold Golodetz

David A. GouldJoan Greco

Beatrice GreenbaumCharles Halpern

Bernice Catherine HarperJoan K. Harrold (F)

Amy HarwellHannah L. Hedrick

Penelope A. HommelThomas Hoyer

John W. HoytJohn Iglehart

Bruce JenningsKay E. Jewell

Sandra H. JohnsonDiane Jones

Stanley B. JonesAnnette Kane

Suzanne J. KiefferAaron J. Kissel

William Knaus (S)Barbara Koenig (F)

American Association of Health PlansHoward University HospitalAARP Andrus FoundationOncological Nursing Society/City of Hope Med CenterInstitute of MedicineNational Consumers LeagueCenter for Biomedical Ethics, UVa School of MedicineMemorial Sloan-Kettering Cancer Center/PDIANational Academy on AgingAmerican Health Decisions/Vermont Ethics NetworkUnited Hospital FundFred Friendly SeminarsNew York Citizens Committee-Health Care DecisionsNathan Cummings FoundationNational Hospice OrganizationCenter to Improve Care of the DyingJoshua’s TentAmerican Medical AssociationThe Center for Social GerontologyHealth Care Financing AdministrationSociety of Critical Care MedicineHealth AffairsThe Hastings CenterHealth Care Financing AdministrationCenter for Health Law Studies SLUHospice Association of AmericaHealth Insurance Reform ProjectNational Council of Catholic WomenHospice Association of AmericaAlzheimer’s AssociationUniversity of Virginia School of MedicineStanford Center for Biomedical Ethics

Cont’d LA Participants, 3/1996Austin KutscherAndrea V. Kydd

Elaine LockeKaren Lomax

Jonathan Lord (S)James Lubitz

Joanne Lynn (S)John J. Mahoney

Richard MandelbaumDaCosta R. Mason

Karen R. MatherleeStephen McConnell

Catherine McDermottAlixe McNeillGalen Miller

Alicia MitchellChristine I. Mitchell

Kathi MooneyAnna Moretti

Rebecca MorganPat Murphy

Naomi NaiermanJanet Neigh

William NelsonHerbert Nickens

Laurence O’Connell (S)Mary O’Malley

Kevin O’RourkeMark D. Olshan

Karen Orloff KaplanHenry Pacheco (F)

Esther Pank

Foundation of ThanatologyNathan Cummings FoundationAmerican College of Obstetricians & GynecologistsNational Center for Clinical Ethics, Dept. of VAAmerican Hospital AssociationHealth Care Financing AdministrationCenter to Improve Care of the DyingNational Hospice OrganizationAmerican Association of Retired PersonsAmerican Association of Retired PersonsNational Health Policy ForumAlzheimer’s AssociationGrantmakers in HealthNational Council on the AgingNational Hospice OrganizationAmerican Hospital AssociationThe Children’s Hospital, BostonOncology Nursing SocietyChoice in DyingNational Academy of Elder Law AttorneysNewark Beth Israel Medical CenterAmerican Hospice FoundationNational Association for Home CareDepartment of Veterans AffairsAssociation of American Medical CollegesPark Ridge Center for the Study of Health, Faith & EthicsThe PrudentialCenter for Health Care Ethics, St. Louis UniversityB’nai B’rithChoice In DyingCenter for Health Promotion, National Council of La RazaOlder Women’s League

Daniel PerryLinda Peterson

Susan M. PetteyAnne PritchettSusan Prokop

Rosemary QuigleyThomas Reardon (S)

Don ReynoldsFenella Rouse

Cindy Hylton RushtonCharles R. Sabatino

Colleen ScanlonCharles ScottAndrew Smith

Lois SnyderMildred Solomon (F)

Deborah SoloveBarbara Spring

John StanleyEllen Stovall

Gerald O. StrauchMary S. Strong

William C. StubingJoan Teno

H. James ToweyAnn Morgan Vickery

Bruce Vladeck (S)Sandra M. Walter

Tracey M. Walton, Jr.Anne Werner

Anne WilkinsonC. Roy Woodruff

Edmund H. Worthy

Alliance for Aging ResearchAmerican Hospital AssociationAmerican Medical Directors AssociationAmerican Medical Women’s AssociationAmerican Society of Internal MedicineAmerican Medical AssociationAmerican Medical AssociationMidwest Bioethics CenterEmily Davie & Joseph S. Kornfeld Foundation/Mayday FundThe Johns Hopkins UniversityABA Commission on Legal Problems of the ElderlyCenter for Ethics & Human Rights, American Nurses Assoc.Population Communications InternationalAmerican Association of Retired PersonsAmerican College of PhysiciansEducation Development Center, Inc.Colorado Collective for Medical DecisionsMissoula Demonstration ProjectLawrence University Program in Biomedical EthicsNational Coalition for Cancer SurvivorshipAmerican College of SurgeonsAmerican Health DecisionsThe Greenwall FoundationCenter to Improve Care of the DyingConsultant to Governor Lawton ChilesNational Hospice OrganizationHealth Care Financing AdministrationBusiness & Professional Women/USANational Medical AssociationUnited Seniors Health CooperativeCenter to Improve Care of the DyingAmerican Association of Pastoral CounselorsUnited Seniors Health Cooperative

Source: http://web.archive.org/web/20030716044919/http://www.lastacts.org/la_ala/la_abt_conf-d.htm

Engine of Change: Palliative Medicine

Source: http://www.authorstream.com/Presentation/Maitane-23406-orlando-opening-Objectives-Center-Advance-Palliative-Care-CAPC-Products-PRINT-Guide-Building-Hospital-as-Entertainment-ppt-powerpoint/

Traditional and Current Views of Palliative Care

Source: Journal of the Royal Society of Medicine, September 2001

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1282181/

Old Model vs. Expanded Model of End of Life Care

Source: Transforming Death in America: A State of the Nation Report, Prepared for Last Acts by Metzger and Kaplan, June 2001, Figure 1, p. 7

http://web.archive.org/web/20030817094653/http://lastacts.org/files/publications/stateofthenation.pdf

Timeline of Palliative Care to Maturity• 2001, National Consensus Project for Quality Palliative Care (NCP) begins to develop

guidelines for palliative care with five major palliative care organizations (AAHPM, CAPC, HPNA, LAP, NHPCO).

• 2004, National Consensus Project for Quality Palliative Care (NCP) issues guidelines.

• 2006, American Board of Medical Specialties (ABMS) approves the creation of hospice and palliative medicine as an OFFICIAL medical subspecialty.

• 2007, building on the National Consensus Project guidelines, the National Quality Forum establishes its National Framework and Preferred Practices for Palliative and Hospice Care

• 2008, first hospice and palliative medicine board-certifying examination is offered. Program requirements for fellowship training in hospice and palliative medicine are approved.

• For only four years, 2008-12, no palliative care fellowship is required to become board certified

• Starting in 2013, ONLY fellowship trained palliative professionals are allowed to sit for the certification exam. No more being grandfathered in without official fellowship training!

• 2013, the Clinical Practice Guidelines for Quality Palliative Care were revised into a 3rd Edition.

Source: "The Development, Status, and Future of Palliative Care" by Diane Meier (Chapter 1), Palliative Care: Transforming the Care of Serious Illness, March 2010 at http://www.rwjf.org/content/dam/web-assets/2010/03/the-development--status--and-future-of-palliative-care

Value Equation

V = Q / C

NQF Defines Quality HealthcareQuality healthcare meets six goals:• Patient-centered (based on the patient’s wishes and

goals)• Beneficial (likely to help the patient)• Safe (not likely to harm the patient)• Timely (delivered when it is appropriate, not too early

and not too late)• Equitable (available and applied to all who could benefit)• Efficient (not wasteful of health resources and patient’s

time and effort)

Source: “The Development, Status, and Future of Palliative Care,” by Diane Meier (Ch. 1, p. 55), Palliative Care: Transforming the Care of Serious Illness, March 2010, http://www.rwjf.org/content/dam/web-assets/2010/03/the-development--status--and-future-of-palliative-care. From National Quality Forum, http://www.qualityforum.org

8 Categories of Health

1. Healthy2. Maternal and Infant3. Acutely ill but mostly curable4. Chronic condition, normal function5. Stable but significant disability6. Short period of decline near death7. Organ system failure8. Long dwindling course (frailty, dementia)

Source: Lynn, et al., http://belburyreview.com/wp/using-health-records-to-segment-society

CAPC Triggers for Palliative Care

Presence of a Serious, Chronic Illness (Clinicians)• Declining ability to complete activities of daily living• Weight loss• Multiple hospitalizations• Difficult to control physical or emotional symptoms related to serious

medical illness• Patient, family or physician uncertainty regarding prognosis• Patient, family or physician uncertainty regarding goals of care• Patient or family requests for futile care• DNR order conflicts• Use of tube feeding or TPN in cognitively impaired or seriously ill patients• Limited social support and a serious illness (e.g., homeless, chronic mental

illness)• Patient, family or physician request for information regarding hospice

appropriateness• Patient or family psychological or spiritual distress

Source: http://www.getpalliativecare.org/resources/clinicians/

Community-State

Partnerships

Alabamians for Better Care at Life's End

University of Alabama at Birmingham (Birmingham, AL)

California Coalition for Compassionate Care

California Health Foundation and Trust (Sacramento, CA)

Connecticut Coalition to Improve End-of-Life Care—Better Endings

Sage Services of Connecticut (New Haven, CT)

District of Columbia Partnership to Improve End-of-Life Care

DCHA Program Services Company (Washington, D.C.)

Florida Partnership for End-of-Life Care

Florida Hospices and Palliative Care (Tallahassee, FL)

Kokua Mau Project

State of Hawaii (Honolulu, HI)

Iowa Partnership for Quality Care in Dying with Dignity

University of Iowa (Iowa City, IA)

Kansas LIFE Project: Living Initiatives for End-of-Life Care

Life Project Foundation (Wichita, KS)

Journey's End: A KY Partnership for Quality End-of-Life Care:

Kentucky Hospital Research and Education Foundation (Louisville, KY)

Maine Consortium for Palliative Care and Hospice

Maine Hospice Council (Manchester, ME)

Michigan Partnership for the Advancement of End-of-Life Care

Michigan Hospice Organization (Lansing, MI)

Minnesota Partnership to Improve End-of-Life Care

Metropolitan Area Agency on Aging (St. Paul, MN)

Nevada Center for Ethics and Health Policy

University of Nevada (Reno, NV)

New Hampshire Partnership for End-of-Life Care

Foundation for Healthy Communities (Concord, NH)

Establishment of a Statewide Program to Improve End-of-Life Care

New Jersey Health Decisions (Verona, NJ)

Carolinas Center for Hospice and End of Life Care

Carolinas Center for Hospice and End-of-life Care (Cary, NC)

Matters of Life and Death Project

North Dakota Medical Research Foundation (Bismarck, ND)

Oklahoma Alliance for Better Care of the Dying

Oklahoma Association for Healthcare Ethics, Inc. (OKC, OK)

Improving Quality of Care for Our Most Vulnerable Population

Brown University (Providence, RI)

Partnership to Improve End-of-Life Care in Utah

HealthInsight (Salt Lake City, UT)

West Virginia Initiative to Improve End-of-Life Care

West Virginia University Foundation (Morgantown, WV)

Project closed early:

Health Research (Albany, NY)

Planning grants only:

Indiana University (Bloomington, IN)

University of Texas Medical Branch at Galveston (Galveston, TX)

• AARP• Aetna• Alliance for Home Health Quality and Innovation• Allina Health• Alzheimer’s Association• Amedisys• America’s Health Insurance Plans (AHIP)• American Academy of Hospice and Palliative Medicine (AAHPM)• American Academy of Nursing (AAN)• American Association of Colleges of Osteopathic Medicine (AACOM)• American Association of Colleges of Nursing (AACN)• American Association of Colleges of Pharmacy• American Association of Critical Care Nurses• American Cancer Society• American Cancer Society Cancer Action Network• American Diabetes Association• American Dental Education Association• American Geriatrics Society• American Heart Association• American Hospital Assocation • American Society of Clinical Oncology (ASCO)• The Arc of the United States• Ascension Health• Association of American Medical Colleges (AAMC)• Aurora Health Care• Baylor Health Care System• Belvedere Health Services• Brown University• C-Change• California State University Institute for Palliative Care at Cal State San Marcos• CancerCare• Capital Caring• Care Continuum Alliance• Care Support of America• CareFirst BlueCross BlueShield• Caregiver Action Network• Caring Foundations• Center for Corporate Innovation• Center for Practical Bioethics• CIGNA• Consumer Coalition for Quality Health Care• DocuBank• Duke Institute on Care at the End of Life• Engage With Grace/Eliza Corporation• Foundation for End of Life Care• Geisinger Health System• George Washington Institute for Spirituality and Health• The Goodyear Tire and Rubber Company• Gundersen Health System• The Hastings Center• Healthcare Leadership Council• Healthwise

• The Holding Group• Honoring Choices Massachusetts• Honoring Choices Minnesota• Honoring Choices Wisconsin• Hospice Foundation of America• Hospice and Palliative Nurses Association (HPNA)• Humana• Institute of Medicine (IOM)• Intermed• Jewish Healthcare Foundation• Kaiser Permanente• Kansas City Hospice and Palliative Care• Kendal Corporation• LeadingAge• Long-Term Quality Alliance• Mintz Levin Center for Health Law & Policy• MyDirectives• National Academy of Elder Law Attorneys (NAELA)• National Alliance for Hispanic Health• National Business Group on Health• National Center for Medical-Legal Partnership• National Coalition on Health Care• National Council on Aging• National Healthcare Decisions Day Initiative• National Hospice and Palliative Care Organization (NHPCO)• National Hospice Work Group• National Partnership for Women & Families• National Retail Federation• Partners HealthCare System• Pfizer• Positive Medicine• Premier Healthcare Alliance• Progressive National Baptist Convention• RAND Health• ReACT• The Rest of Your Life (RoYL) Planning• Roundtable on Critical Care Policy• The SCAN Foundation• Social Work Hospice and Palliative Care Network• Sterling Health IT Consulting• Sutter Care at Home/Sutter Health• UCLA Healthcare Ethics Center• UnitedHealth• University of Nebraska Medical Center, College of Nursing• University of Pennsylvania School of Nursing• University of Utah• Univita Health• US Department of Veterans Affairs• Vanguard Health Systems• Visiting Nurse Associations of America• Visiting Nurse Service Of New York • WellPoint

C-TACMembers

Is this in your church bulletin?!?