Thursday, October 2, 2008

Race and end-of-life care in JAGS

Two from JAGS on race and end-of-life care (see next post for the second)....

First is an attempt to understand why there are long-standing and persistent racial differences regarding advance care planning and hospice utilization in the US. The study involved older (over 65 years) primary care clinic patients from a single center who were asked a variety of questions about values regarding end of life care and beliefs/attitudes about advance directives and hospice care. ~200 subjects in all; unfortunately only a ~third of eligible subjects participated, making one wonder how much that skews the results.

Besides measuring advance directive completion, they measured (using a variety of scales) attitudes and beliefs about end of life care including about hospice care, treatment preferences at the end of life, spirituality, health care system mis/trust, and beliefs about advance care planning. Consistent with prior studies, African Americans were less likely than white Americans to have advance directives, more skeptical of hospice care, had somewhat more distrust towards the health care system, and were more likely to endorse life-prolonging therapies in the setting of a terminal illness. Controlling for all these findings, they more or less found that it was the aggregate of these cultural values/beliefs that predicted less advance care planning use and skepticism towards hospice and not race per se.

The flip side of that is that African American 'race' in this and prior studies is likely just a proxy for a set of beliefs and values which are more prominent in African Americans than white Americans (although individuals within each group share the full spectrum of those beliefs/values). All fine and good, but what is really interesting about this paper is that in the discussion section the authors deliberately try to move the discussion away from suggesting that it's a 'problem' (as in a health care system/racism/policy/etc. problem) that African Americans as a group use advance directives and hospice care less - that that's more the product of deep-seated cultural values - and that the challenge to the medical community as a whole is to find more culturally appropriate ways to deliver good end of life care to African Americans. A quote:

This work has implications for the development of culturally competent policies and programs that may improve end-of-life care. In this study, African Americans were less comfortable discussing death, more likely to want life-prolonging therapies, and more likely to agree that those who believe in God do not have to plan for end-of-life care; these factors partly explained the relationship between race and possession of an advance directive. Although interventions in church or community settings have increased dialogue about and comfort discussing end-of-life care, many of these programs have not increased the number of African Americans completing advance directives. This is not surprising, because they only partly address potential cultural barriers. Furthermore, given the lack of data supporting the effectiveness of advance directives in improving end-of-life care and the cultural beliefs identified in this study and others, emphasis on the process of advance care planning rather than the completion of documents seems more likely to result in the desired outcome—opportunities for those who want to do so to express their preferences for end-of-life care should they become incapacitated. For African Americans, in addition to community and church-based discussions, culturally sensitive advance care planning should consider the importance of family in decision-making and the value of informal ways of expressing preferences, including oral and written instructions or even deferral of decisions to family, and greater emphasis on understanding and respecting preferences for care, whatever they are and however they are expressed in the context of patients' values and goals.

ResearchBlogging.orgRebecca S. Allen, Jessica Y. Allen, Michelle M. Hilgeman, Jamie DeCoster (2008). End-of-Life Decision-Making, Decisional Conflict, and Enhanced Information: Race Effects Journal of the American Geriatrics Society, 56 (10), 1904-1909 DOI: 10.1111/j.1532-5415.2008.01929.x

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