Donald H. Taylor, Jr. Associate Professor of Public Policy Duke Sanford School of Public Policy Duke Cancer Care Research Program, Duke Medical Center Duke University

Team of Colleagues Funded by AHRQ 5R01 HS018360, “Hospice to palliative care: maximizing patient preference and cost savings” Duke Cancer Care Research Program Amy Abernethy, Co-PI Yousuf Zafar, Robin Fowler, Lori Hudson, Jordan Lodato, Krista Rowe, Kris Waldt NIH Department of Bioethics Marion Danis, Instrumental in developing CHAT approach along with colleagues at U Michigan Public Policy Paul Pooley

Purpose and Design To provide a rational, patient-defined, evidence-based recommendation to inform the redesign of Medicare for people with advanced cancer. Allows patients and caregivers to contribute to healthcare reform conversation Adapt Choosing Health Plans All Together (CHAT) participatory decision-making tool

Eligible Subjects Patients who are · Medicare beneficiaries age 65 and older · Diagnosed with cancer Family caregivers of any age 18 and older

Enrollment and Conduct of Study Patients and caregivers approached in Duke Medical Center Cancer clinics Enrollment Pts & caregivers complete CHAT together Those completing study receive $75 CHAT session facilitated by trained personnel

Patient Recruitment (7/10-9/9/10) 852 patients pre-screened as eligible 129 approached 48 declined 40 possible 7 yes, not scheduled, not consented 9 consented and scheduled (5 pts + 4 family) 25 completed study (12 pts + 13 family)

Enrollment Target Clinics: breast, prostate, thoracic, gyn-onc, GI, Hem Onc (starting 9/10/10) Goal: enroll N=600 (300 patients, 300 caregivers) 5 of 25 completed are African-American Potential recruitment expansion to inpatient units

Risk/Benefit Assessment The greatest participant risk is fatigue associated with the time required to complete the CHAT exercise process (~2.5 hours) Patients not likely to directly benefit

Development of CHAT tool CHAT approach used in numerous contexts in past work (Danis and others) Key tasks completed Identifying categories of care choices Providing an estimate of relative cost Developing participant materials incl CHAT tool Training CHAT leaders to facilitate Developing recruitment strategy/materials 4 Pilot tests

Cost Estimates Cost estimates from last 6 months of life Medicare cost from Cancer death cohorts (2008) Applied mean last 6 months of life Medicare spending as budget constraint (~$35,000) Developed estimates of mean cost if highest level of care chosen for all categories (~$66,000) Constraint: participants get 50 stickers; it would take 94 to get highest level in all categories

Participants Task …..The goal of this exercise today is to get your input into what types of services Medicare should cover. When you make your decisions, we ask that you take the perspective of a person with advanced cancer (or their family member). Advanced cancer is a cancer that is not generally considered to be curable and is expected to shorten a person’s life…….. Revisions in patient eligibility criteria Advanced Cancer >>>metastatic>>>all cancer Changes driven by recruitment realities

CHAT Discussion Format Pre-questionnaire Four rounds Individual Small group consensus (3-4 persons) Large group consensus (10-12 persons) Individual Post-questionnaire Key questions: Changes in preference due to discussion? Individual abide by group consensus?

Health Events Introduced After rounds 1 and 2 health events read Discussion of the event, ‘Are you happy with your choices?’ Facilitated discussion Observed preference changes in pilots

Other Medical Care Julio’s cancer was widespread when it was first diagnosed. His doctor told him there were not any curative treatments that would be successful. Over the past few months, his vision has become cloudy and he has trouble reading. The standard course of treatment is an ophthalmology visit and cataracts repair if needed. If Julio chose other medical care, his visits and operation would be covered; if he chose no coverage they would not be.

Cancer Care Alonzo has had three rounds of chemotherapy and radiotherapy. There is an additional generation of experimental medicines available but there is less than 5 % hope of a cure. If Alonzo chose the basic or intermediate levels of cancer care this next round of treatment is not covered; if he chose the high or advanced level the additional round is covered.

Vision # 2 Sophia’s doctor recommends new glasses to address her mild double vision. If Sophia chose dental/vision care then the frames and lenses are covered. If she chose no coverage this is not covered.

Big Picture Assess patient and caregiver preferences for Cancer Relevant to the expanding discussion of concurrent palliative care/potential modifications of the Medicare hospice benefit In later project years, we will use patient preferences to simulate changes in Medicare benefits and impact on cost