May 17, 2017

Doctor: We're doing better at talking about death—but some patients are left out

Daily Briefing

    While the United States over the past decade has "made significant progress" in the availability of palliative care services, "not everyone has benefited from the palliative care movement: Large disparities remain by geography, race, and type of illness," Dhruv Khullar writes for New York Times' "The Upshot."

    Expanding the scope of end-of-life care

    Geographic, racial disparities

    For instance, Khullar, a resident at Massachusetts General Hospital and Harvard Medical School, cites research showing that 90 percent of "hospitals with more than 300 beds now have a palliative care program, but only 56 percent of smaller hospitals do." Moreover, patients who receive care at for-profit and public safety net hospitals, which traditionally serve uninsured patients, "are much less likely than those in nonprofit hospitals to have access to palliative care," Khullar writes.

    Further, according to Khullar, studies show that many of the palliative care programs in the country are underfunded and understaffed, and the availability of such services varies widely throughout the United States. Roughly 90 percent of hospitals in New England have palliative care access, he writes, while only about 40 percent of hospitals in the South have access to such programs. And according to the Center to Advance Palliative Care, almost all hospitals in Montana, New Hampshire, and Vermont have palliative care access, compared with just a third of hospitals in Alabama, Arkansas, and Mississippi.

    In addition to geographic disparities, Khullar cites a wide range of research showing that "well-documented health disparities for racial and ethnic minorities persist through death." For example, a 2013 study shows minority patients are more likely to be hospitalized, receive aggressive care in their last six months of life, and a 2008 study found that black patients are more likely to pass away while in the hospital—they are also less likely to have palliative care access or use hospice services, Khullar writes.

    Moreover, according to Khullar, research shows that family members of black patients who pass away are "generally less satisfied with the quality of care their loved ones receive, and report more concerns about end-of-life communication."

    Disparities by illness—and a possible way forward

    There are also disparities in palliative care based on type of disease, Khullar writes. He points out that "patients with end-stage renal disease, chronic obstructive pulmonary disease ..., or congestive heart failure are far less likely than patients with cancer or dementia—diseases we typically associate with the end of life—to receive palliative care consultations." And about one-third of patients with renal disease or cardiopulmonary failure end up dying in the ICU, he adds, compared with only 13 percent of cancer patients and nine percent of dementia patients.

    Some of this disparity is understandable from a doctor's perspective, Khullar writes. He explains that when he sees "patients with advanced C.O.P.D. or kidney failure requiring dialysis, I know they're sick. But I also know there's generally something I can do about it—for the moment."

    Particularly for patients with end-organ failure, it can be difficult to tell "exactly when we're approaching the end," Khullar continues, "which makes it hard to know when to involve palliative care or start discussions about hospice in earnest."

    That difficulty, in part, is "what's prompting a push to separate palliative care from end-of-life care," Khullar writes. He explains, "Many argue that palliative care, with its focus on symptom control and holistic well-being, should be considered at any stage of a serious illness—not just at the end. Its use should be driven by patient need, not disease prognosis." And that seems to align with "most people's wishes," he continues. "The vast majority of patients say they would want palliative care for themselves and their family members if understood as an 'extra layer of support' during serious illness," Khullar writes.

    While "talking about death will never be easy, ... it is increasingly necessary," he writes. Khullar explains that as medical technology advances, physicians will be able to do "more and more" for their patients—but "it's not always clear there's more we should do." He concludes, "Only through earlier, deeper conversations can we ensure that what we want is what we get. And only by acknowledging our gaps can we ensure everyone, everywhere gets it" (Khullar, "The Upshot," New York Times, 5/10).

    Expanding the scope of end-of-life care

    Research has demonstrated that hospice saves eMedicare between $2,300 and $10,800 per enrolled beneficiary compared to traditional care at the end of life. Moreover, patients and families participating in hospice report better medical and social outcomes, particularly for pain and symptom management.

    Read our white paper to understand the benefits of concurrent care, identify key considerations for developing concurrent care services, and learn about models that peer institutions have adopted.

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