Transformational Palliative Care: Matching What We Do To Our Patient’s Needs Diane E. Meier, MD Department of Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai Director, Center to Advance Palliative Care diane.meier@mssm.edu www.capc.org www.getpalliativecare.org 1

No Disclosures

Objectives The case for palliative medicine What works to improve quality and reduce costs for vulnerable populations? Limitations of our taxonomy and professional tribalism How to face outwards towards needs of: Our patients, their families Policy makers, payers, health system leadership

Concentration of Spending Distribution of Total Medicare Beneficiaries and Spending, 2011 Average per capita Medicare spending (FFS only): $8,554 Average per capita Medicare spending among top 10% (FFS only): $48,220 Total Number of FFS Beneficiaries: 37.5 million Total Medicare Spending: $417 billion NOTE: FFS is fee-for-service. Includes noninstitutionalized and institutionalized Medicare fee-for-service beneficiaries, excluding Medicare managed care enrollees. SOURCE: Kaiser Family Foundation analysis of the CMS Medicare Current Beneficiary Survey Cost & Use file, 2011. 4

Because of the Concentration of Risk and Spending, Palliative Care Principles and Practices are Central to Improving Quality and Reducing Cost

Mr.B An 88 year old man with mild dementia admitted via the ED for management of back pain due to spinal stenosis and arthritis. Pain is 8/10 on admission, for which he is taking 5 gm of acetaminophen/day. Admitted 3 times in 2 months for pain (2x), weight loss+falls, and altered mental status due to constipation. His family (83 year old wife) is overwhelmed.

Mr. B: Mr. B: “Don’t take me to the hospital! Please!” Mrs. B: “He hates being in the hospital, but what could I do? The pain was terrible and I couldn’t reach the doctor. I couldn’t even move him myself, so I called the ambulance. It was the only thing I could do.” Modified from and with thanks to Dave Casarett

Functional Limitation Dementia Frailty Serious illness(es) Concentration of Risk Functional Limitation Dementia Frailty Serious illness(es)

Most of Costliest 5% have Functional Limitations http://www.cahpf.org/docuserfiles/georgetown_trnsfrming_care.pdf

The Modern Death Ritual: The Emergency Department Half of older Americans visited ED in last month of life and 75% did so in their last 6 months of life. Smith AK et al. Health Affairs 2012;31:1277-85.

Dementia Drives Utilization Prospective Cohort of community dwelling older adults Callahan et al. JAGS 2012;60:813-20. Dementia No Dementia Medicare SNF use 44.7% 11.4% Medicaid NH use 21% 1.4% Hospital use 76.2% 51.2% Home health use 55.7% 27.3% Transitions 11.2 3.8

Dementia and Total Spend 2010: $215 billion/yr By comparison: heart disease $102 billion; cancer $77 billion 2040 estimates> $375 billion/yr Hurd MD et al. NEJM 2013;368:1326-34.

In case you are not already worried… The Future of Dementia Hospitalizations and Long Term Services+Supports 10 fold growth in dementia related hospitalizations projected between 2000 and 2050 to >7 million. Zilberberg and Tija. Arch Int Med 2011;171:1850. 3 fold increase in need for formal LTSS between now and 2050, from 9 to 27 million. Lynn and Satyarthi. Arch Int Med 2011;171:1852.

Why? Low Ratio of Social to Health Service Expenditures in U.S. for Organization for Economic Co-operation and Development (OECD) countries, 2005. Ratio of social to health service expenditures for Organization for Economic Co-operation and Development (OECD) countries, 2005. The ratio is calculated by dividing total expenditures on social services by total expenditures on health services. *The ratio for Portugal is from 2004, owing to missing data for 2005. Source: OECD Health Data 2009 (accessed June 2009); OECD Social Expenditure Dataset (accessed December 2009); authors' calculations. Bradley E H et al. BMJ Qual Saf 2011;20:826-831 Copyright © BMJ Publishing Group Ltd and the Health Foundation. All rights reserved.

Surprise! Home and Community Based Services are High Value Improves quality: Staying home is concordant with people’s goals. Reduces spending: Based on 25 State reports, costs of Home and Community Based LTC Services less than 1/3rd the cost of Nursing Home care.

This Requires Expertise Highest risk, highest cost population are those with functional limitation, frailty, cognitive impairment +/- serious illness(es) What are our roles in improving care of this population?

What is Palliative Care? Specialized medical care for people with serious illness and their families Focused on improving quality of life as defined by patients and families. Provided by an interdisciplinary team that works with patients, families, and other healthcare professionals to provide an added layer of support. Appropriate at any age, for any diagnosis, at any stage in a serious illness, and provided together with curative and life-prolonging treatments. Definition from public opinion survey conducted by ACS CAN and CAPC http://www.capc.org/tools-for-palliative-care-programs/marketing/public-opinion-research/2011-public-opinion-research-on-palliative-care.pdf

Conceptual Shift for Palliative Care: Both-And, not Either-Or Medicare Hospice Benefit Life Prolonging Care Dx Death Old Palliative Care Bereavement Hospice Care Life Prolonging Care New 18

Palliative Care Models Improve Value Quality improves Symptoms Quality of life Length of life Family satisfaction Family bereavement outcomes MD satisfaction Care matched to patient centered goals Costs reduced Hospital costs decrease Need for hospital, ICU, ED decreased 30 day readmissions decreased Hospitality mortality decreased Labs, imaging, pharmaceuticals reduced

Key Characteristics of Effective Models 1: Targeting RESOURCES Threshold Effect: Unless you make an order-of-magnitude shift in intensity of time spent with a CCM patient - you’ll have diminishing return. FHI has defined factors in getting over the threshold. Demand Management DM/CM CCM-palliative care NEEDS

Jones et al. JAGS 2004;52

Gómez-Batiste X, et al. BMJ Supportive & Palliative Care 2012;0:1–9 Gómez-Batiste X, et al. BMJ Supportive & Palliative Care 2012;0:1–9. doi:10.1136/bmjspcare-2012-000211

Targeting on the Front Lines Ask yourself: Does this patient have an advanced long term condition or a new dx of a serious illness or both? Would you be surprised if this patient died in the next 12 months? Does this patient have decreased function, progressive weight loss, >= 2 unplanned admissions in last 12 months, live in a NH or AL, or need help at home? Does this patient have advanced cancer or heart, lung, kidney, liver, or cognitive failure?

Key Characteristic 2: Goal Setting “Don’t ask what’s the matter with me; ask what matters to me!” Ask the person and family, “What is most important to you?” “Ultimately, good medicine is about doing right for the patient. For patients with multiple conditions, severe disability, or limited life expectancy, any accounting of how well we’re succeeding in providing care must above all consider patients’ preferred outcomes.” Reuben and Tinetti NEJM 2012;366:777-9.

Priorities for Care Survey of Senior Center and AL subjects, n=357, dementia excluded, no data on function Asked to rank order what’s most important: Overall, independence ranked highest (76% rank it most important) followed by pain and symptom relief, with staying alive last. Fried et al. Arch Int Med 2011;171:1854

Recent E-mail from a Geriatrician “I have a particular interest in goals of care and how best to convey this dialogue across the continuum. For the last 18 months I have spearheaded the Community Based Care Transitions Program in New Haven….Many of the readmissions are related to unaddressed palliative care needs (surprise surprise)…I’m interested in how we can develop policies to ensure providers are discussing goals of care and not just a menu of possible interventions.”

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Impact of Goal Setting through Advance Care Planning Prospective data on >3000 Medicare beneficiaries 1998-2007 (linked HRS, claims, and NDI) Advance directives associated with lower Medicare spending, lower hospital death rate, and higher hospice use in medium-high Medicare spending regions of the U.S. Nicholas et al. JAMA 2011;306:1447-53.

Key Characteristic 3: Can We Deliver on People’s Goals Key Characteristic 3: Can We Deliver on People’s Goals? Not When Families are Home Alone 40 billion hours unpaid care/yr by 42 million caregivers worth $450 billion/yr Providing “skilled” care Increased morbidity/mortality/bankruptcy aarp.org/ppi http://www.nextstepincare.org/

Optimistic Baby Boomers say “Get Ready, Kids!” 70% of those who have never received long term care believe they can rely solely on family in time of need as they age. The Scan Foundation/NORC/AP April 2013 To.pbs.org/15TQh2B http://www.apnorc.org/projects/Pages/long-term-care-perceptions-experiences-and-attitudes-among-americans-40-or-older.aspx

Families Need Help if We Are to Honor People’s Goals Mobilizing long term services and supports is key to helping people stay home and out of hospitals. Predictors of model success: 24/7 phone access; high-touch consistent and personalized care relationships; focus on social and behavioral health determinants; coordinated integration of social supports with medical services.

Payers Are Already Bringing the Care Home

www.theatlantic.com 02.25.13 MA Full Risk PMPM contract with HealthCare Partners/DaVita 15%+margin. >700K patients“Now instead of 30-40 patients/day, Dr. Dougher sees 6-8.”

Key Characteristic 4: Pain and Symptoms – Disabling pain and other symptoms reduce independence and quality of life. HRS- representative sample of 4703 community dwelling older adults 1994-2006 Pain of moderate or greater severity that is ”often troubling” is reported by 46% of older adults in their last 4 months of life and is worst among those with arthritis. Smith AK et al. Ann Intern Med 2010;153:563-569

Symptom Burden of Community Dwelling Older Adults with Serious Illness It’s Not Only Pain: Symptom Burden of Community Dwelling Older Adults with Serious Illness *75% or more reported symptom as bothersome * * * * * * * Walke L et al, JPSM, 2006

Key Characteristic 5: Dynamic Nature of Risk Early advance care planning + communication on what to expect + treatment options + access. As illness progresses, ability to titrate dose intensity of services. Morrison and Meier. N Engl J Med 2004;350(25):2582-90.

Taxonomies and Their Discontents Balkanized health system: Hospital, office, NH, AL, home, PACE, LTACH, hospice… Balkanized disciplines: IM, FM, geriatrics, palliative care, cardiology, oncology, nephrology, CCM, hospitalists, SNFists… Lots of evidence-based “best practices” based on small scale programs. Competitive, struggling, isolated, ineffective at meeting population needs.

We Are Confusing Our Audiences -Policy makers and payers and hospitals and health systems are asking: Who has the best impact on LOS? On 30 day readmissions? On hospital mortality? On HCAHPS? On total (payer) spend? For which patient population? In which settings? Does anyone pay for this? How can I believe your cost avoidance arguments? How do I choose? -Patients and families: HELP!!

What to Do? Implement, Scale Our challenge is broad implementation of what’s already been shown to work in small scale programs. Scaling and diffusion of innovation via technical assistance, training, and social marketing. Be at the table or be on the menu: Drive policy change

Clear, Simple Technical Assistance for What do systems, payers, colleagues and people and their families need? Clear, Simple Technical Assistance for System integration design Model(s) selection and matching to population needs Implementation, quality, and standardization Risk stratification and targeting Evaluation

Care Management www.med-ic.org ACE/HELP NICHE Palliative Care Move Inpatients Through the System Safely and Efficiently: ACE/HELP NICHE Palliative Care Keep some patients with acute illness out of the hospital: Hospital at Home Prevent Readmission: Care Transitions Programs Care Management Provide patient-centered, coordinated care: PCMH (GRACE, Guided Care), Medical house calls, ACOs www.med-ic.org

What do systems, payers, colleagues and people and their families need? 2. Workforce Training Not even close to enough clinicians with specialty training to meet the needs Therefore, our role is to: Train generalists and help communities to step up Provide subspecialty consultation for the most complex Improve evidence base through research

What do systems, payers, colleagues and people and their families need? 3. Public and constituency awareness through social marketing and PR: We need to create a positive public vision of the good to drive demand and access and to help leaders to know about, and then implement models.

Treating the person beyond the disease. Building an echo chamber across the nation

Transforming 21st Century Care of Serious Illness Gomez-Batiste et al Change from: Change to: Terminal ……………………………………Advanced Chronic Prognosis weeks-month…………………..Prognosis months to years Cancer ……………………………………..All chronic progressive diseases Disease……………………………………..Condition (frailty, fn’l dep, MCC) Mortality…………………………………….Prevalence Cure vs. Care………………………………Synchronous shared care Disease OR palliation……………………..Disease AND palliation Prognosis as criterion……………………..Need as criterion Reactive…………………………………….Screening, Preventive Specialist……………………………………Palliative/Geriatric Care Everywhere Institutional………………………………….Community No regional planning……………………….Public health approach Fragmented care……………………………Integrated care

(Present) and Future “The future is here now. It’s just not very evenly distributed.” William Gibson The Economist, 2003

Upcoming Audioconference Building the Future of Home-Based Palliative Care Thursday September 19, 2013 1:30 – 2:30 PM EST https://www.capc.org/products/audio-conferences/2013-09-19/ Learn from a CMS Innovation Grantee on integration of home palliative care within a Home Health Agency

Early bird rate until September 25. National Seminar Nov. 7- 9 in Dallas: Palliative Care Across the Continuum http://www.capc.org/capc-resources/capc-seminars/dallas-2013/seminar-overview Early bird rate until September 25. Highly interactive seminar presenting best practices from front-line innovators in care of the sickest and costliest 5% of patients.