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Open Access Research article

A decision exercise to engage cancer patients and families in Deliberation about Medicare Coverage for advanced Cancer Care

Marion Danis1, Amy P Abernethy3, S Yousuf Zafar3, Gregory P Samsa3, Steven P Wolf4, Lynn Howie4 and Donald H Taylor2*

Author Affiliations

1 Department of Bioethics, National Institutes of Health, Bethesda, Maryland, USA

2 Sanford School of Public Policy, Duke University, Box 90253, Durham, NC 27708, USA

3 Center for Learning Health Care, Duke Clinical Research Institute, Durham, USA

4 Department of Biostatisitcs and Bioinformatics, Duke University Medical Center, Durham, NC, USA

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BMC Health Services Research 2014, 14:315  doi:10.1186/1472-6963-14-315

Published: 19 July 2014

Abstract

Background

Concerns about unsustainable costs in the US Medicare program loom as the number of retirees increase and experiences serious and costly illnesses like cancer. Engagement of stakeholders, particularly cancer patients and their families, in prioritizing insured services offers a valuable strategy for informing Medicare coverage policy. We designed and evaluated a decision exercise that allowed cancer patients and family members to choose Medicare benefits for advanced cancer patients.

Methods

The decision tool, Choosing Health plans All Together (CHAT) was modified to select services for advanced cancer patients. Patients with a cancer history (N = 246) and their family members (N = 194) from North Carolina participated in 70 CHAT sessions. Variables including participants’ socio-demographic characteristics, health status, assessments of the exercise and results of group benefit selections were collected. Routine descriptive statistics summarized participant characteristics and Fisher’s exact test compared group differences. Qualitative analysis of group discussions were used to ascertain reasons for or against selecting benefits.

Results

Patients and family members (N = 440) participated in 70 CHAT exercises. Many groups opted for such services as palliative care, nursing facilities, and services not currently covered by the Medicare program. In choosing among four levels of cancer treatment coverage, no groups chose basic coverage, 27 groups (39%) selected intermediate coverage, 39 groups (56%) selected high coverage, and 4 groups (6%) chose the most comprehensive cancer coverage. Reasons for or against benefit selection included fairness, necessity, need for prioritizing, personal experience, attention to family needs, holistic health outlook, preference for comfort, freedom of choice, and beliefs about the proper role of government. Participants found the exercise very easy (59%) or fairly easy (39%) to understand and very informative (66%) or fairly informative (31%). The majority agreed that the CHAT exercise led to fair decisions about priorities for coverage by which they could abide.

Conclusions

It is possible to involve cancer patients and families in explicit discussions of their priorities for affordable advanced cancer care through the use of decision tools designed for this purpose. A key question is whether such a conversation is possible on a broader, national level.

Keywords:
Medicare; Hospice benefit; Health priorities; Insurance benefits; Public participation