End-of-life care should recognize differences in ethnicity, CEO says

LOS ANGELES — There are racial and ethnic differences in how people approach end-of-life decisions. And health-care providers need to recognize that one-size-fits-all programs and approaches don't work for everyone.

There are also differences based on race and ethnicity in the end-of-life experience itself.

A report on end-of-life issues in California, the most populous and diverse state in the nation, found disparities that are likely similar in other states, according to Kate O'Malley, a senior program officer for the California Healthcare Foundation. Many of the issues at the heart of end-of-life care are widespread nationally, including Medicare policy and palliative and acute-care practices.

The foundation, a nonpartisan philanthropy that studies chronic-care issues, released its latest report, this one focused on end-of-life care disparities, during the annual meeting of the Association of Healthcare Journalists held here Thursday and Friday.

It found that hospice enrollment rules, for instance, may not match what patients actually desire. Latino and African-American patients, for instance, often desire acute therapies they cannot get with hospice because Medicare won't cover them for hospice patients. And Medicare and most private insurance companies require a doctor's certification that a patient is expected to die within six months in order to access hospice, which then excludes services such as chemotherapy or dialysis.

It found a chasm between what people want and what actually happens in terms of where they die and how much treatment they desire. That gap is wider for ethnic and racial minorities.

In addition, pain is often undertreated among the elderly, the poor, and members of racial and ethnic minorities, it says.

Foundation CEO Mark Smith outlines part of the problem by telling a joke. In France, he says, death is "inevitable." In Canada, it's "approachable." In the United States, it's "optional."

The point is Americans approach an impending death as a problem to be rooted out. We're technologically advanced. And the financial incentives built into the system provide rewards for more care, even if it's very unlikely to make a difference. But it's also a system that forces a choice between palliative care, which is designed to enhance quality of life, and aggressive treatment-oriented care.

The two can and should co-exist, he told the medical reporters.

Smith said research showed that the cost of care is a top concern for Hispanics, Asians and Chinese-speaking Chinese, while pain and discomfort are top concerns for whites. African-Americans are concerned about finding care providers who respect their culture.

Pain control is a major end-of-life concern, and it's something that "hospice does quite well," according to Smith — much better than either hospitals or nursing homes, who "don't do particularly well."

It's also undertreated, "particularly among the elderly, the poor and the ethnically/racially diverse."

Smith advocates end-of-life planning that recognizes ethnic and racial cultural differences, such as changing practices to shift focus from advanced-care planning — the nuts and bolts of what you would want — to making sure you've designated a spokesperson who knows and honors your values. Minority communities might be more receptive to that and more likely to act.

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E-mail: lois@desnews.com