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Monday, February 23, 2009

The Terrible Choice

JCO has a provocatively titled research paper (see blog post title) comparing patients' need for hospice services with their willingness to sign-on to hospice care. It's related to this paper I blogged on earlier (scroll down to #4; both are written by the same group and appear to be based on the same data set).

The study involves interviews with 300 patients (mean age 58 years; 27% African American) with advanced cancer, all receiving some sort of anti-cancer treatment, and all of whom had to have a 'likely less than 6 months' prognosis (if they didn't receive any further cancer-focused life-prolonging treatments): ie these were patients who were potentially hospice-eligible. No patients were receiving home services at the time. They were asked, among other things, to rank the importance of/their perceived need for certain core hospice services (nurse visits, chaplain, home health aide, counselor, respite care - these were not labeled as hospice services) as well as asked about treatment preferences.

One key point - when they looked at who were the people who reported the most perceived need for hospice services, they looked at who were eligible for hospice care based on treatment preferences. They defined these patients (again, all of whom had less than 6 month prognoses without further treatment) as those who said they would NOT want any anti-cancer treatment even if it meant that it would guarantee them an 'almost 100%' chance of surviving 6 months. Ie - those who would reject all life-prolonging treatment and are therefore eligible for hospice care based on goals (as well as prognosis based on the study's inclusion criteria). Notably, 13% of these patients (all of whom were receiving anti-cancer treatments) said they would not want any treatments even if it meant a guaranteed 6 month survival. This suggests that these 13% were receiving treatments they didn't actually want, thought they were receiving curative treatments, didn't understand the research questions, or some combination thereof. (I'll also add that they asked patients if they'd want anti-cancer treatments even if it wouldn't change the fact that they'd have an 'almost 0%' chance of 6 month survival - I'm curious as to whether anyone said yes to that. Ok well I know people said yes to that question, but I'm curious as to whether enough of them said yes to warrant an analysis of who these patients were and how they did).

Anyway, they found 1) perceived need for hospice services had no relation to eligibility for hospice, as defined above, 2) the group who ended up dying during 6 months of follow up (15%) actually did report increased need for hospice services, 3) African Americans, patients with poorer social support, and patients with worse psychological symptoms all reported increased need for hospice services, and - likely related to #2 and #3 - 4) patients with activities of daily living dependencies reported increased need for hospice servies (as did their family members).

In short: hospice eligibility and perceived need for hospice services don't seem to line up very well, and instead being sicker and more debilitated with less social support identifies patients who want hospice services (if not hospice care itself). Part of the authors' discussion of this centers around questions of justice related to the Medicare hospice benefit: patients are excluded from hospice services not due to a lack of need for them but due to ineligibilty due to treatment goals/preferences. Thus, the 'terrible choice' of the title. Need, they argue, should be the criteria for benefits, especially since there is no Medicare-defined equivalent treatment 'package' alternative for patients ineligible due to goals.

Fair enough, but compare this to the previous publication from this study that I linked to above, in which it turns out this same set of patients actually ranked, overall, the hospice-type services as pretty low, as compared to non-hospice services like dependent care support, help with transportation, and family care-type programs (financial support for family members to care for them)! Given that, I'm not so sure that the Medicare-defined hospice benefit is the problem per se (it has problems to be sure, but I don't think it needs to meet all the supportive care needs of all patients even with short prognoses), but that there is not any coherent, national 'package' or program of care and assistance to patients with advanced illnesses who are not yet in the final stages of life (the homebound, weeks to few months stages). And given that in the US the simple act of a Presidental candidate mentioning that it might not be the worse thing in the world to tax the rich a little more in order to help the poor was a media event involving a mad screaming chorus of Socialist! I have a hard time imagining unfortunately that we are about to embrace such 'welfare state' programs like family members getting financial support to care for a loved one at home....

ResearchBlogging.orgD. J. Casarett, J. M. Fishman, H. L. Lu, P. J. O'Dwyer, F. K. Barg, M. D. Naylor, D. A. Asch (2009). The Terrible Choice: Re-Evaluating Hospice Eligibility Criteria for Cancer Journal of Clinical Oncology, 27 (6), 953-959 DOI: 10.1200/JCO.2008.17.8079

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