The future of hospice and palliative care

David Casarett MD MA Director, Hospice and Palliative Care University of Pennsylvania Health System

Associate Professor of Medicine

University of Pennsylvania Perelman School of Medicine

Collaborators

Support

 Jennifer Kapo MD

 Joan Harrold MD

 Amy Corcoran MD

 Mary Naylor RN PhD

 Thomas Ten Have PhD

 Knashawn Morales ScD

 Karen Hirschman PhD

 Jessica Fishman PhD

 Sharon Xie PhD

 Joan Teno MD MS

 David Asch MD MBA

 Jason Karlawish MD  Neville Strumpf RN PhD  NCI  NIAID  AHRQ  Department of Veterans Affairs

 Paul Beeson Physician Scholars Award

 American Cancer Society

 Hartford Foundation

 Commonwealth Fund

JR:

• A 54 year old man admitted to the hospital via the ED for

management of pain due to metastatic colon cancer.

• He has severe pain (8/10) on

admission, for which he is taking OTC acetaminophen.

• Has been admitted 4 times in 6 months for pain (2x),

nausea/volume depletion, and altered metal status.

• His wife is overwhelmed with caregiving and is particularly interested in learning about

JR:

• JR: “I told Dr. [XX] 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.”

• JR’s wife: “He hates being in the hospital more than anything else in this world, but what could I do?

His pain was terrible and I couldn’t reach his oncologist. I couldn’t

even move him myself, so I called the ambulance. It was the only thing I could do.”

The future of hospice and palliative

care in chronic, serious illness



The challenges to health systems of

chronically ill patients like JR



A need for home-based palliative care



Hospice care is

» Poorly designed

» Not the (only) answer



Building a better system of home-based

palliative care

Challenges of chronic, serious illness

For health systems?

 High-cost care

 Frequent

(re)hospitalizations

 Dissatisfaction with care (HCAHPS scores)

 Financial

penalties/adverse effect on public reporting

Where do we start?

The truth:

“Why did I rob

banks? Because I enjoyed it.”

-Willie Sutton “I rob banks

because that’s where the money is.”

-Attributed to Willie Sutton by reporter Mitch Ohnstad

Where is the money?

Hospital

patients

Home

patients

Our patients want to be at home



End-of-life care (Teno, JAMA 2004)



Hospital at home programs:

» HF (Tibaldi, Archives Intern Med 2009)

» Older adults (Leff, Annals Intern Med 2005)

» COPD (Ram, BMJ 2004)

The challenge of staying at home:

30-day readmissions

30-day readmissions



Important for public

reporting



Driving reimbursement



But are 30-day

readmissions really a

measure of hospital

quality?

30-day readmissions



Measure of:

» (Hospital discharge planning)

» Adherence » Outpatient follow-up » Socioeconomic factors » Access » Care coordination » Home care

Palliative home care and 30-day

readmissions



If 30-day readmissions are really an

outpatient quality measure, is there a role for

Can hospice solve 30-day

readmissions?

 Hospice: Comprehensive care for patients with a prognosis of 6 months or less who are willing to accept a plan of comfort care.

 Interdisciplinary team (Physician, nurse, social worker, chaplain, volunteer)

 Hospice services

» Care provided in home, acute care, long term care

» Medications related to hospice diagnosis

» Respite care (5 consecutive days)

» Home health aide services (2 hours/day)

Hospice: An effective approach to

palliative home care…

 Moderate-quality (mostly case-control) showing:

» Improved pain management

» More appropriate pain medication use

» Improved pain assessment

» Reduced costs

» Higher satisfaction

(Sources: Miller 2002; Teno 2004; Taylor 2009, Miller 2003; Casarett 2005)

…and effective in reducing 30-day

readmissions…



2 years’ data from the University of

Pennsylvania Health System



838 hospice vs. 28,093 home care patients



Propensity score matched (9 variables,

including DNR status, diagnosis and

presence of pain)



Adjusted rates of 30-day readmissions

(p<0.001)

» Home care: 12.4%

Hospice is (at best) a partial way to

reduce 30-day readmissions



Hospice isn’t used often

enough--approximately 1/3 of adult deaths referred to

hospice



Hospice is used too late

• Median length of stay: 3 weeks

• One third in last week

Hospice: Designed to be unusable



Hospice eligibility:

prognosis of 6 months or less

» Must accept a plan of comfort care

Hospice eligibility criteria restrict

access…but do they identify patients

with the greatest needs?

Do hospice eligibility criteria identify

cancer patients with the greatest

needs?

 2 studies of patients with cancer:

» Cross-sectional (300 patients, 174 family members) » Longitudinal (128 patients)

 Setting:

» 6 oncology clinics within the University of Pennsylvania Cancer Network

 Eligibility:

» Patients who would have a prognosis of 6 months or less if they discontinued disease-modifying treatment (in the

Sample interview question

Nurse

Respite care

Home health

aide

Chaplain

Strongly Somewhat Indifferent Somewhat Strongly Prefer Left Prefer Left Prefer Right Prefer Right

Please click the number that best describes how you feel If these two home care service plans were exactly the same in

Services



Visiting nurse



Chaplain



Counselor



Respite care



Meal delivery



Peer support group



Care of family member (child/parent)



Home health aide/voucher

Do hospice eligibility criteria identify

patients with the greatest needs?



Yes (and no)



Significantly higher needs for all services

among patients in the last 6 months of life

But: Patients who are willing to forgo

aggressive life-sustaining treatment don’t

have greater needs for services

Casarett D, Fishman J, O’Dwyer PJ, Barg FK, Naylor M, Asch DA. How should we design supportive cancer care? Journal of Clinical Oncology. 2008. 26 (8): 1296-1301.

Casarett D, Fishman JM, Lu HL, O’Dwyer PJ, Barg FK, Naylor MD, Asch DA. The terrible choice: re-evaluating hospice eligibility criteria for cancer. Journal

(Hospice access is unfair)

 African American patients were less likely to have hospice-appropriate preferences (adjusted

proportions: 7% vs. 17%; p=0.015).*

 African American patients had greater perceived needs for services (adjusted means: 23.4 vs. 18.1) (p=0.013).*

 Non-eligible African American patients had greater perceived needs than eligible white patients did (p=0.034).*

*Adjusted for age, education, ECOG score, GDI score, and FACT-G. Fishman J, O'Dwyer P, Lu H, Henderson H, Asch D, Casarett D: Race, treatment

preferences, and hospice enrollment: Eligibility criteria may exclude patients with the greatest needs for care. Cancer. 2009. 115(3): 689-697.

JR: Could hospice have helped?

• A 54 year old man with pain due to metastatic colon cancer.

• Severe pain

• Need for care management

• Wife/caregiver is overwhelmed

• But:

• Uncertain prognosis

• Wants to continue receiving treatment for cancer (chemotherapy,

erythropoetin, transfusions)

• Significant needs, but hospice isn’t appropriate

JR: Ideal palliative care

• Receives a comprehensive inpatient palliative care

assessment

• Has a gapless handoff to

outpatient care (clinic/home care)

• Receives:

• Comprehensive 24/7 case management

• Visiting nursing care

• Social work support

• Offers of spiritual/emotional support

• Home health aide assistance

• Continues to receive medically

One step in designing ideal palliative

home care:

Comprehensive Longitudinal

Advanced Illness Management

CLAIM conceptual model: JR



Advance care planning

» Had clear but unrecognized preferences to avoid hospitalization. (>10% of patients; Casarett, JCO 2010; Casarett, JAGS 2009, Lynn JAGS 1997)



Case management

» JR’s wife couldn’t reach his oncologist; called 911



Symptom control

» Admitted to the hospital for pain that could have been managed at home

CLAIM conceptual

model

Advance care planning

Symptom management Case management

Designing ideal palliative home care:

Use the tools you have

Comprehensive Longitudinal

Advanced Illness Management

(CLAIM)



Based on the tool we have: the Medicare

skilled home care benefit



Existing revenue stream and scalable

(Commonly available nationwide):

» >13,000,000 patients/year

» >17,000 home care agencies



A few modifications: evidence-based design

based on consumer input

CLAIM Services



Visiting nurse plus:

» Nurse case management

» 24-hour triage

» Emergency scripts

» Medication management

» Chaplain

» Social worker

» Home health aide

» Consulting physician oversight

CLAIM

services

Preliminary evidence: Impact on

acute care utilization



2 years’ UPHS home care and palliative care

patients (n=27,429)



30-day readmissions (p<0.001)*:

» Palliative care: 6.3%

*Adjusted for: Age, gender, living situation, cognitive impairment, pain, dyspnea, ADLs, overall heatlh, rating of risk of

CMMI grant



3-year, $4.3 million grant to test the CLAIM

intervention



CLAIM vs. home care



Outcomes:

» Quality of care (e.g. pain management)

» Acute care utilization

JR



Discharged to palliative

home care



Next 4 months: Multiple clinic

visits, no hospitalizations



Use of home infusion 2x for

hypovolemia



Transition to hospice; on

hospice for 6 weeks; died at

home

The future of palliative care



Home-based



Population-centered



Increasingly integrated with

inpatient and outpatient

care



Quality-driven



Funded by

Present and future



“The future is here

now. It’s just not very

evenly distributed.”

-William Gibson