The future of hospice and palliative care

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 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 Support NCI NIAID AHRQ Department of Veterans Affairs Paul Beeson Physician Scholars Award American Cancer Society Hartford Foundation Commonwealth Fund Greenwall Foundation

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 resources for caregiving support.

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» An ideal solution» Poorly designed» Not the (only) answer Building a better system of home-based palliative care The future of palliative care

Challenges of chronic, serious illness For patients/families Discoordinated care Lack of psychosocial support Leverage Inadequate attention to goals/preferences Poor symptom management 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? I The rob banks truth: because Why did that s I rob where banks? the Because money I is. enjoyed it. -Attributed -Willie to Sutton 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)» Pediatrics (Sartain, Archives Dis Childhood, 2002)

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» Hospice?» Palliative home care?

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)» Bereavement follow up and counseling for >1 year

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: 1.0%

but is hospice the best solution?

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 10% in last 24 hours

Hospice: Designed to be unusable Hospice eligibility:» Must have a 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 judgment of the patient s oncologist)

Sample interview question If these two home care service plans were exactly the same in every other way, which would you prefer? Nurse or Home health aide Respite care Chaplain 1 2 3 4 5 6 7 8 9 Strongly Somewhat Indifferent Somewhat Strongly Prefer Left Prefer Left Prefer Right Prefer Right Please click the number that best describes how you feel

Services Visiting nurse Chaplain Counselor Respite care Meal delivery Peer support group Care of family member (child/parent) Home health aide/voucher Telephone case management

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 of Clinical Oncology. 2009. 27(6): 953-9.

(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

Receives a comprehensive inpatient palliative care assessment JR: Ideal palliative care 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 indicated disease-modifying treatment

One step in designing ideal palliative home care: Comprehensive Longitudinal Advanced Illness Management (CLAIM)

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 Case management Improved quality, Decreased utilization Symptom 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 RN

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)*:» Home care: 12.4%» Palliative care: 6.3% *Adjusted for: Age, gender, living situation, cognitive impairment, pain, dyspnea, ADLs, overall heatlh, rating of risk of rehospitalization, DNR

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» Costs

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?

The future of palliative care

The future of palliative care Home-based Population-centered Increasingly integrated with inpatient and outpatient care Quality-driven Funded by costavoidance/gain-sharing

Present and future The future is here now. It s just not very evenly distributed. -William Gibson