I have a new paper with Duke and NIH colleagues out this week (early online) in the Journal of Clinical Oncology (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.
cross posted at freeforall
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*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, 2014Â http://jco.ascopubs.org/content/early/2014/08/25/JCO.2013.54.2605.full.pdf+html
"Flexibility in how they will receive their entitlement": the inclusion of money instead of care is thought-provoking as a psychological experiment, but is it really a policy option? A right to care is just that, not a right to a fungible "entitlement". The point of socialised health care is precisely to remove this basic need as far as possible from the capitalist hedonic calculus of tradeoffs, which presume good health for their fairness and rationality. The core tradeoffs, in how much many society is prepared to put into the core guarantees, are made collectively.
The tradeoff between cancer treatment and quality-of-life services is only made acute by a peculiar feature of current treatments, viz. their exorbitant cost and low effectiveness. They are expensive because they are ineffective: prolonged, and liable to be replaced soon by something slightly less ineffective. Real cures are cheap (Lewis Thomas). We are slowly getting there.
But a right to care has never meant a right to any and all care. Some treatments are covered, some aren't (Anecdata: my uncle, who missed the then NHS age cutoff for aggressive cancer treatment). So although you'd probably have to figure out a bunch of weasel-wording about "ancillary expenses" the basic idea of a petty cash fund as part of medical treatment — and the non-coverage of other, more medicalized expenses, doesn't seem entirely implausible.
Also, this extends well past cancer — it's just that end-of-life is more obviously predictable in oncology. And in general, patients long have been more willing than the rest of us to discuss the tradeoff between quality of life and length of life.
I see James' question as being more along the lines of "why does it make sense to give cash to cancer patients, rather than establish a minimum basic income?"
There's a peculiar (IMHO) lack of logic or fairness to giving cash to just cancer patients. Why do they get it and not stroke victims? Or AIDS sufferers? Or people with bad backs? And why medical bad luck rather than other forms of bad luck?
The other two options make more sense to me in that they are more about choosing "we feel this type of care is a better reward/cost tradeoff than this other type of care".