I have a new paper with Duke and NIH colleagues out today (early online) in the Journal of Clinical Oncology (update full pdf:JCO-2014-Taylor) that demonstrates gaps between the stated preferences of Medicare beneficiaries with cancer and their caregivers about what Medicare should cover, and what the benefit package actually covers. The gaps we highlight show beneficiaries and caregivers allocating finite resources toward now-uncovered benefits that broadly speaking are designed to maximize quality of life:
- unrestricted cash (some level chosen by 46%)
- home based long term care (52% choose a level far beyond what home health would cover)
- concurrent palliative care (45% chose a level beyond the current hospice benefit; such care without having to unelect curative treatments)
The numbers highlighted in yellow (from Table 3 in the paper) correspond to the text just above, and show the distribution of subjects choosing benefits not now covered by Medicare at the initial assessment in the study (subjects did multiple assessments; their selection of non covered benefits was relatively stable before and after facilitated discussions).
The kicker is that these choices were observed under the imposition of a serious resource constraint. We asked subjects, what benefits are most important to you if you couldn’t have everything? The exercise was based on actuarial estimates, so respondents choosing now-uncovered benefits were allocating resources away from expensive, curative treatments, and toward less expensive care that is focused on quality of life (including unrestricted cash that could be spent for anything). They were not just adding new benefits on top of everything else; instead they were engaging in difficult tradeoffs. Around 1 in 5 respondents picked some level of each of these 3 uncovered benefits, and allocated around 30% of their total resources toward this care that is broadly focused on improving quality of life. In exploratory analyses, the only significant predictor of choosing all three of the highlighted, non covered benefits, after controlling for other factors was African American race (around twice as likely as whites to pick all 3).
There are several limitations to this work, most notably that these were theoretical choices being expressed that did not influence actual health care coverage. However, the point of the research is to point out the gaps between what is covered by Medicare, and the preferences of some Medicare beneficiaries with cancer and caregivers (people for whom the issues underlying the discussion are not theoretical).
What might these findings this mean? First, our results suggest a possible benefit structure in Medicare in which beneficiaries could be granted flexibility in how they will receive their entitlement; our study poses the choice in cost neutral terms to Medicare. Second, our study was designed to detect Black/White differences in end of life preferences, and we did so, but we consider these findings exploratory, and they are being more fully investigated via qualitative methods. Third, patients and caregivers were able to make choices, tradeoffs and to discuss difficult topics in a reasoned fashion during this study (more background on the study).
The most difficult aspect of determining what this study means and determining how it could be used for policy making is trying to imagine how our society could have a similarly reasoned dialogue around what types of services should be covered by Medicare for persons with cancer who are near the end of life, and whether we would grant patients discretion in how they consume their benefit entitlement. Patients and family members appear to be ready for this discussion and hard decisions. I am not so sure about the rest of us.
update: fixed a few typos and revised for clarity
*Donald H. Taylor, Jr., Marion Danis, S. Yousuf Zafar, Lynn J. Howie, Gregory P. Samsa, Steven P. Wolf, Amy P. Abernethy. There is a Mismatch Between the Medicare Benefit Package and the Preferences of Patients with Cancer and Their Caregivers. Journal of Clinical Oncology 2014; Published early online ahead of print on August 25, 2014 http://jco.ascopubs.org/content/early/2014/08/25/JCO.2013.54.2605.full.pdf+html