Palliative Care 2020:

Matching Care to Patient and

Family Needs

Diane E. Meier, MD

Director

Center to Advance Palliative Care

diane.meier@mssm.edu

www.capc.org

www.getpalliativecare.org

@dianeemeier

Disclosures

• I have no disclosures to report.

Objectives

1. How is palliative care important to 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?

Concentration of Spending Distribution of Total Medicare Beneficiaries and Spending, 2011

10%

63%

37%

90%

Total Number of FFS Beneficiaries: 37.5 million

Total Medicare Spending: $417 billion

Average per capita Medicare spending (FFS only): $8,554

Average per capita Medicare spending

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

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.

Because of the concentration

of risk (and spending),

palliative care principles and

practices are central to

improving quality. Improved

quality 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 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 due

to constipation.

• His family (83 year old wife) is

overwhelmed.

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

yourself. 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

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

• 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 ED and the ICU

• Half of older Americans visited ED in

last 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 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.

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.

•Highest risk, highest cost

population: functional limitation,

frailty, cognitive impairment +/-

serious illness(es)

•What are the roles of primary care

teams in improving care of this

population?

The 5%

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

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

“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, 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 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 patient'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.

Palliative Care Language

Endorsed by the Public

Palliative Care Models

Improve Value (Quality/Cost)

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

The Future of Palliative Care

• Not enough to have access to

palliative care in hospitals

• Most illness occurs at home and in

communities

• Home palliative care needed without

regard to prognosis or goals of care

• Goal = insure access to palliative care

across all settings and stages of illness

Access to Palliative Care Across

the Continuum: The Future

Hospital

Consult Service

Inpatient Unit

Outpatient Specialty Clinics

Cancer Center

Outpatient PCP

Clinics

NH Services

Provider Home Visits

21

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:

– 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)

– 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 mos

longer than those who got usual oncology care. Temel J, et al. NEJM 2010

Palliative Care at

Home for the Chronically Ill Improves Quality, Markedly Reduces Cost

RCT 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

2.3

9.4

4.6

35.0

5.3

0.92.4

0.9

0

10

20

30

40

Home health

visits

Physician

office visits

ER visits Hospital days SNF days

Usual Medicare home care Palliative care intervention

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 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 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

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

• 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.)

U S Oncology pathways preserve survival, reduce cost by

35% in lung cancer.

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.

Less chemo More hospice Longer LOS

New guidelines have AMDs

DPMA, hospice visit

U S Oncology pathways preserve survival, reduce cost

by 34% in metastatic colon cancer.

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

52.

Table 1: Impact of pathways in colon cancer

Overall

survival

(mos)

Chemo

Cost ($)

Total

Cost

($)

Pathway 26.9 22,564 103,379

-34%

Non-

pathway

20.1 60,787 156,020

P value 0.03 <0.001 <0.001

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:

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 risk 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

Effect of Palliative Care

on Hospital Costs

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 =

Decision Making / Clarity / Follow through

Key Characteristics of Effective

Models 1: Targeting

Demand Management DM/CM CCM-palliative care

RE

SO

UR

CE

S

NEEDS

Jones et al. JAGS 2004;52

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

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 care

at home?

• Does this patient have advanced cancer or heart, lung,

kidney, liver, or cognitive failure?

Targeting on the Front Lines

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 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 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

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? 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/ban

kruptcy

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

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 Services

less than 1/3rd the cost of Nursing

Home care.

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 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.

• This is our job.

Payers Are Already Bringing the

Care Home

Exemplar: BCBS MI and @HOMe

The “Missing Piece” Solution

Thank you Dottie Deremo!

51

Chronic Disease

Management

Hospice Care

2-20 yrs 12-18 mos

6 mos

Advanced Illness

Management

52

Improves Quality Outcomes

Supports Stressed Family Caregivers

Saves 30% Net Total Health Care Costs

for Tier 3 patients demonstrated by 3rd party independent

research

Partnership:

@HOMe: a wholly owned subsidiary of

Hospice of Michigan

Payer: BCBS Michigan

Providers: ACOs,Employers in SE Michigan

How? System Redesign

53

AIM Home Services

24/7/365

ER & Hospital Transition Coaches

Telesupport

24/7/365

Analytics

Predictive

Modeling

Outcomes

Analytics

Key Characteristic 4:

Pain and Symptoms –

• 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.

It’s Not Only Pain:

Symptom Burden of Community Dwelling

Older Adults with Serious Illness

0

10

20

30

40

50

60

70

80

90

100P

erc

en

t o

f p

ati

en

ts r

ep

ort

ing

sym

pto

m

Ltd A

ctiv

ity

Fatigue

Disco

mfo

rtSO

BPai

n

Lack

Wel

l Bei

ng

Appetite

Inso

mnia

Wea

knes

s

Dep

ress

ion

Anxi

ety

Walke L et al, JPSM, 2006

* * *

* *

* *

*75% or more reported symptom as

bothersome

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.

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 success 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

•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…

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 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