The major, and in most communities, only source of palliative care for nursing home residents is hospice care, delivered under the Medicare Hospice Benefit. The benefit provides team-based, intensive palliative care for individuals who can procure a certification from two physicians saying the patient is likely to die within six months. The patient (more commonly, surrogate) must also sign a paper agreeing to give up access to regular Medicare coverage in return for access to hospice. Unfortunately, this sort of benefit does poorly in meeting the needs of many chronically ill individuals. While hospice fits well in the context of a disease such as cancer, which follows a predictable course of progressive decline, it fails in the face of many other illnesses, such as Alzheimer’s or progressive kidney disease, for which an accurate prognosis is impossible until the very last few days of a patient’s life. In fact, because they fall outside of the cancer model—for which death is reasonably predictable—many of these chronic, progressive conditions aren’t treated as life-threatening by the health care system—even though three out of four people over age 65 eventually will die from one or more of them.
In a 2004 study of long-term nursing-home care for people with advanced dementia, 71 percent of new residents died within six months of admission, but only two percent had been recognized as terminally ill at the time of their arrival. As a result, the nursing homes commonly deployed inappropriate and sometimes painful acute-care interventions—often with repeated hospitalization—such as tube feeding, laboratory tests, restraints, and intravenous therapies. Many patients suffered from side effects such as pressure ulcers, constipation, pain, or shortness of breath. A more recently published work, by Susan L. Mitchell and colleagues, confirms this high rate of “churn” among dying, demented nursing home residents, showing a 41 percent risk of hospitalization, emergency department visits, intravenous treatments, or tube feeding during the last three months of life.
The need for some form of palliative care in nursing homes is clear. Susan Miller and her colleagues, in their impressive series of studies on the hospice approach to treating patients with advanced illness in the nursing home, have demonstrated that this kind of care increases the likelihood that a patient will reach the end of life in his or her home (which is the nursing home) rather than an acute-care hospital. Hospice also increases the likelihood that a resident will appropriately receive opioid analgesics for pain or shortness of breath in their final weeks.
Analogous to last week’s New England Journal of Medicine study (discussed here) of simultaneous palliative care from point of diagnosis in advanced lung cancer, there are also data that suggest a survival advantage among certain groups of hospice beneficiaries. A study by Steve Connor and colleagues found that some hospice patients actually live longer than comparable patients who don’t get hospice care, with the largest survival advantage (nearly 100 days) accruing to chronic heart failure (CHF) patients. The study did not distinguish the beneficiaries’ living setting (home versus nursing home), but since the prevalence of CHF rises exponentially with increasing age, these findings raise the possibility of a survival benefit from hospice among the elderly with a prevalent chronic disease.
So hospice is a place to start, but unfortunately, there are very few studies on the impact of non-hospice or hospice palliative care in non-cancer populations, specifically among the elderly with multiple conditions and functional decline. A systematic review of intervention studies of non-hospice palliative care for advanced dementia found only two methodologically acceptable studies. One was a randomized trial of palliative care consultation for advanced dementia after hospital admission. It showed a higher likelihood of having a palliative care plan in place upon hospital discharge but otherwise found no differences in length of stay, painful hospital procedures, tube feeding, or mortality in the palliative care intervention group. A non-randomized comparison study in a Veterans Administration nursing home found higher mortality but better comfort level and a higher likelihood of avoiding acute care hospitalization in the palliative care group.
Perhaps there is reason to hope for change. Early this month, the U.S. Senate’s Labor-HHS Appropriations Committee called for a trans-Institute NIH strategy for increasing funding for palliative care research across disease types and patient populations.
Palliative Care—The Committee strongly urges the NIH to develop a trans-Institute strategy for increasing funded research in palliative care for persons living with chronic and advanced illness. Research is needed on: treatment of pain and common non-pain symptoms across all chronic disease categories, which should include cancer, heart, renal and liver failure, lung disease, Alzheimer’s disease and related dementias; methods to improve communication about goals of care and treatment options between providers, patients, and caregivers; care models that maximize the likelihood that treatment delivered is consistent with patient wishes; and care models that improve coordination, transitions, caregiver support, and strengthen the likelihood of remaining at home.
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Geriatricians and health professionals working with older adults should convey their concern about the need for a strong NIH commitment to palliative care research for Americans living with the chronic diseases of old age. Write to NIH Director Dr. Francis Collins at firstname.lastname@example.org.