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Palliative Care 2020: Matching Care to Patient and

Family NeedsFamily Needs

Diane E. Meier, MDDi tDirector

Center to Advance Palliative Care

diane.meier@mssm.eduwww.capc.org

www.getpalliativecare.org@dianeemeier

Disclosures

• I have no disclosures to report.

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Objectives

1. How is palliative care important to f h l bl ?improving care of the most vulnerable? 

2. How do we change the delivery system to improve access to quality palliative care for all persons with serious illness and their families?and their families?

Concentration of SpendingDistribution of Total Medicare Beneficiaries and Spending, 2011

37% Average per capita

63%

90%

Medicare spending (FFS only): $8,554

Average per capita Medicare spending

among top 10% (FFS only): $48,220

10%

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.

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Because of the concentration of risk (and spending)of risk (and spending), palliative care principles and practices are central to improving quality. Improved p g q y pquality reduces 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 arthritisto spinal stenosis and arthritis.

• Pain is 8/10 on admission, for which he is taking a lot of acetaminophen.

• Admitted 4 times in 6 months for pain (2x), weight loss+falls, and altered mental status dueand altered mental status due to constipation.

• His family (83 year old wife) is overwhelmed.

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Mr. B:• Mr. B: “I told the Dr. that I never

wanted to go back to the hospital again. It’s torture—you have no control and can’t do anything for y gyourself. And you get weaker and sicker. Every time I’m in the hospital it feels like I’ll never get out.”

• Mrs. B: “He hates being in the hospital, but what could I do? The p ,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

Concentration of Risk

• Functional Limitation• Functional Limitation

• Dementia

• Frailty

S i ill ( )• Serious illness(es)

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Most of Costliest 5% have Functional Limitations

http://www.cahpf.org/docuserfiles/georgetown_trnsfrming_care.pdf

The Modern Death Ritual: The ED and the ICU

• Half of older Americans visited ED in last month of life and 75% did so inlast month of life and 75% did so in their last 6 months of life.

• 90% of ED visits in those >65 due to symptom distress.

• 50% increase in ICU admissions from50% increase in ICU admissions from ED in people >85 years.

Smith AK et al. Health Affairs 2012;31:1277-85.

Pines JM et al. JAGS 2013;61:12-17.

Mullins et al. Acad Emerg Med 2013;20:479-86.

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Dementia DrivesUtilization

Prospective

Cohort of Dementia No Dementia

community dwelling older adults

Callahan et al JAGS 2012;60:813-

Medicare SNF use 44.7% 11.4%

Medicaid NH use 21% 1.4%

Hospital use 76.2% 51.2%Callahan et al. JAGS 2012;60:813-20.

Home health use 55.7% 27.3%

Transitions 11.2 3.8

Dementia and Total Spend

• 2010: $215 billion/yr2010: $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.

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In case you are not already worried…The Future of Dementia Hospitalizations

and Long Term Services+Supports

10 fold growth in dementia related10 fold growth in dementia related hospitalizations projected between 2000 and 2050 to >7 million.

Zilberberg and Tija. Arch Int Med 2011;171:1850.

3 f ld i i d f f l LTSS3 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.

•Highest risk, highest cost population: functional limitation

The 5%

population: functional limitation, frailty, cognitive impairment +/-serious illness(es)

•What are the roles of primary care teams in improving care of this population?

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What is Palliative Care?• Specialized or generalist medical care for people with

serious illness and their families

Focused on improving quality of life as defined by• 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 i ill d id d t th ith ti da 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

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“Don’t ask what’s the matter with me. Ask what matters to me.”

Palliative Care Teams Address 3 Domains

1. Physical, emotional, and spiritual distress

2. Patient‐family‐professional communication about achievable goals for care and the decision‐making that follows

3. Coordinated, communicated, continuity3. Coordinated, communicated, continuity of care and support for social and practical needs of both patients and families across settings 

Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing 

Palliative Care Language Endorsed by the Public

patients with relief from the symptoms, pain, and stress of a serious illness ‐ whatever the diagnosis. 

The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a , , ppatient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

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Palliative Care Models Improve Value (Quality/Cost)

Quality improves Costs reducedQuality improves– Symptoms

– Quality of life

– Length of life

– Family satisfaction

– Family bereavement

Costs reduced– Hospital costs

decrease

– Need for hospital, ICU, ED decreased

– 30 day readmissions

outcomes

– MD satisfaction

– Care matched to patient centered goals

decreased

– Hospitality mortality decreased

The Future of Palliative Care

• Not enough to have access to palliative care in hospitalsp p

• Most illness occurs at home and in communities

• Home palliative care needed without regard to prognosis or goals of careregard to prognosis or goals of care

• Goal = insure access to palliative care across all settings and stages of illness

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Access to Palliative Care Across the Continuum: The Future

Hospital

Consult ServiceConsult Service

Inpatient Unit

Outpatient Specialty Clinics

NH Services

Provider Home Visits

Clinics

Cancer Center

Outpatient PCP

Clinics

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Palliative Care Improves Quality in Office Setting

Randomized trial simultaneous standard cancer care with palliative care co‐management from diagnosis versus control group receiving standard cancer care only:group receiving standard cancer care only:

– Improved quality of life– Reduced major depression– Reduced ‘aggressiveness’ (less chemo < 14d before death, more likely to get hospice, less likely to be hospitalized in last month)to be hospitalized in last month)

– Improved survival (11.6 mos. vs 8.9 mos., p<0.02)

Temel et al. Early palliative care for patients with non-small-cell lung cancer NEJM2010;363:733-42.

Palliative care in addition to usual oncology care allowed lung cancer patients to live almost 3 moslonger than those who got usual oncology care. Temel J, et al. NEJM 2010

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Palliative Care at Home for the Chronically Ill

Improves Quality, Markedly Reduces CostRCT of Service Use Among Heart Failure, Chronic Obstructive Pulmonary Disease, or Cancer Patients While Enrolled in a Home

Palliative Care Intervention or Receiving Usual Home Care, 1999–2000

13.211.1

9.4

35.0

20

30

40

Usual Medicare home care Palliative care intervention

2.3

9.4

4.65.3

0.92.4

0.90

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Home healthvisits

Physicianoffice visits

ER visits Hospital days SNF days

KP Study Brumley, R.D. et al. JAGS 2007

Palliative Care in the Nursing Home• Retrospective case control study comparing care

processes in 125 end stage dementia patients receiving palliative care consultations (2007-2009) to 125 historical controls (2006) receiving usual carehistorical controls (2006) receiving usual care

• Single facility (Hebrew Rehabilitation) in Boston• Data source: MDS• Primary outcome: a composite outcome based on

utilization patterns, depression, and pain and other clinical Indicators, and change on this composite score (and the individual outcomes) over a 1-year period.

• Results: Residents receiving palliative care• Results: Residents receiving palliative care consultation had fewer ED visits (p<.001) and less depression (P=.03). Change in the composite score indicated a significant difference over time between the 2 groups (p = .013).

Comart J et al. The Gerontologist 2012; dec 7. doi:10.1093/geront/gns154

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RCT of Nurse-Led Telephonic Palliative Care Intervention

• N= 322 advanced cancer patients in rural NH+VT

• Improved quality of life and less depression (p=0.02)

• Trend towards reduced symptom intensity (p=0.06)

• No difference in utilization, (but v. low in both groups)

• Median survival: intervention group 14 months, control group 8.5 months, p = 0.14

Bakitas M et al. JAMA 2009;302(7):741-9

US Oncology: Pathways Include Palliative Care

Clinical pathways specify:• Number of regimens

Exact drugs to use• Exact drugs to use • Goals of care discussion early

– The Checklist Approach.– Advance medical directives and health

agent appointment “up front” as standard of care.

– Use of homecare and hospice as standard of care.

(In contrast, NCCN pathways allow 16 individual drugs in multiple combinations. No mention of non-chemo care until the end.)

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U S Oncology pathways preserve survival, reduce cost by 35% in lung cancer.

New guidelines have AMDsDPMA, hospice visit

Less chemo

More hospiceLonger LOS

For NSCLC, equal results, less toxicity, less cost.Chemo beyond 3rd line off pathway.Neubauer M, et al. J Oncol Pract. 2010 Jan;6(1):12-8.

U S Oncology pathways preserve survival, reduce cost by 34% in metastatic colon cancer.

Table 1: Impact of pathways in colon cancer

Overallsurvival

Chemo Cost ($)

TotalCostsurvival

(mos)Cost ($) Cost

($)

Pathway 26.9 22,564 103,379-34%

Non-path a

20.1 60,787 156,020

Hoverman R, et al. Am J Manag Care. 2011 May;17 Suppl 5 Developing:SP45-52.

pathway

P value 0.03 <0.001 <0.001

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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.”

Consequences of Late Referral to Palliative Care

Serious Adverse Outcomes for Bereaved Caregivers:Caregivers:

Compared to care at home with hospice, 

• Care in ICU associated with 5X family risk of Post Traumatic Stress Disorder; and 

• Care in hospital associated with 8.8X family i k f l d i f di drisk of prolonged grief disorder

Wright A et al. Place of death: Correlation with quality of life of patients with cancer and predictors of bereaved caregivers mental health. JCO 2010; Sept 13 epub ahead of print

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Effect of Palliative Care on Hospital Costs

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How Palliative Care Reduces Cost

• Improved resource use

• Reduced bottlenecks in high cost units

• Improved throughput and consistency

The Conceptual Model: 

Dedicated medical team = 

Focus + Time =Focus + Time = 

Decision Making / Clarity / Follow through

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Key Characteristics of Effective Models 1: Targeting

SR

ES

OU

RC

ES

Demand Management DM/CM CCM-palliative care

NEEDS

Jones et al. JAGS 2004;52

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

Ask yourself:

• Does this patient have an advanced long term condition

Targeting on the Front Lines

• 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 more personal caremonths, live in a NH or AL, or need more personal care at home?

• Does this patient have advanced cancer or heart, lung, kidney, liver, or cognitive failure?

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Key Characteristic 2: Goal Setting

• “Don’t ask what’s the matter with me; ask h t tt t !”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 MCC, 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.

Goals for Care

Survey of Senior Center and AL subjects, n=357, dementia excluded, no data on functiondementia excluded, no data on function

Asked to rank order what’s most important:

Overall, independence ranked highest (76% rank it most important) follo ed b pain and s mptom relieffollowed by pain and symptom relief, with staying alive last.

Fried et al. Arch Int Med 2011;171:1854

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Impact of Goal Setting through Advance Care Planning

• Prospective data on >3000 Medicare beneficiaries p1998-2007 (linked HRS, claims, and NDI)

• Advance directives associated with lower Medicare spending, lower hospital death rate, and higher hospice use in medium-highhospice use in medium high Medicare spending regions of the U.S.

Nicholas et al. JAMA 2011;306:1447-53.

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Key Characteristic 3: Can We Deliver on People’s Goals? Not When

Families are Home Alone

• 40 billion hours unpaid40 billion hours unpaid care/yr by 42 million caregivers worth $450 billion/yr

• Providing “skilled” care

• Increased morbidity/mortality/banmorbidity/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 say they can rely on family in time of need as they age, (compared to 55% of those who have received it).

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

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Why? Low Ratio of Social to Health Service Expenditures in U.S.

for Organization for Economic Co-operation and Development (OECD) countries, 2005.

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 ServicesCommunity Based LTC Services less than 1/3rd the cost of Nursing Home care.

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Families Need Help if We Are to Honor People’s Goals

• Mobilizing long term services and supports i k t h l i l t h d tis key to helping people stay home and out of hospitals.

• Predictors of success: 24/7 phone access; high-touch consistent and personalized care relationships; focus on social andcare relationships; focus on social and behavioral health determinants; coordinated integration of social supports with medical services.

• This is our job.

Payers Are Already Bringing the Care Home

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Exemplar: BCBS MI and @HOMe

The “Missing Piece” Solution

Thank you Dottie Deremo!

Chronic Disease Management

Hospice Care

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Management

2-20 yrs12-18 mos

6 mos

Advanced Illness Management

Partnership:

Improves Quality Outcomes Supports Stressed Family Caregivers

@HOMe: a wholly owned subsidiary of Hospice of Michigan Payer: BCBS MichiganProviders: ACOs,Employers in SE Michigan

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Supports Stressed Family Caregivers Saves 30% Net Total Health Care Costs

for Tier 3 patients demonstrated by 3rd party independent research

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How? System Redesign

Telesupport 24/7/365

Analytics

Predictive Modeling

Outcomes Analytics

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AIM Home Services

24/7/365

ER & Hospital Transition Coaches

Analytics

Key Characteristic 4: Pain and Symptoms –

• Pain of moderate or greater severity that is• 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.

• 90% ED visits >65 years are due to symptoms.

Smith AK et al. Ann Intern Med 2010;153:563-569.

Pines JM et al. JAGS 2013;61:12-17.

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It’s Not Only Pain: Symptom Burden of Community Dwelling

Older Adults with Serious Illness

90

100

*

*75% or more reported symptom as bothersome

20

30

40

50

60

70

80en

t of

pat

ient

s re

port

ing

sym

ptom

* **

**

* *

bothersome

0

10

20

Per

ce

Ltd

Activi

ty

Fatig

ue

Discom

fort

SOBPain

Lack

Wel

l Bein

g

Appetite

Inso

mnia

Wea

knes

s

Depre

ssio

n

Anxiet

y

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.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.

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Integrate Palliative Care into New Delivery and Payment Models

Adding palliative care targeted to the highest risk populations to the specifications for ACOs, bundles, PCMHs is key to their 

t i i lit dsuccess at improving quality and reducing cost.

Major Health Systems/ACOs Get It

Making multimillion dollar investments in palliative care integration across settings:

•Partners Health System/ Harvard Medical School•Partners Health System/ Harvard Medical School

•U. of Pittsburgh Health System

•Duke U. Health System

•North Shore‐LIJ Health System

•OSF Health System

•Iowa Health System

•Ohio Health System

•Sharp Health System

•Banner Health System…

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Transforming 21st Century Care of Serious Illness Gomez-Batiste et al.2012

Change from: Change to:

Terminal ……………………………………Advanced Chronic

Prognosis weeks month Prognosis months to yearsPrognosis 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 criterionPrognosis 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 isThe future is here now. It’s just not very evenly distributed.”

William Gibson

The Economist, 2003