Editor’s note: The following post, on palliative care in the long term setting, is authored by Mary Ersek and David Stevenson (photos and linked bios above) and by Justine Sefcik, MS, RN, a fourth year doctoral student at the University of Pennsylvania School of Nursing, a 2012-2014 National Hartford Centers of Gerontological Nursing Excellence Patricia G. Archbold Scholar, and a previous Jonas Hartford Scholar. The post is the first in a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series will feature essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value.
As we begin the series, we offer the following short introduction from Diane Meier and Amy Kelley: “Because of its focus on quality of care, the Affordable Care Act is poised to expand access to palliative care services for the sickest, most vulnerable, and therefore most costly, 5 percent of patients, who drive about 50 percent of all healthcare spending. Palliative care is specialized medical care for people with serious illnesses that focuses on providing relief from symptoms, pain, and stress, whatever the diagnosis or stage of illness. Patients (and family caregivers) receiving palliative care experience improved quality of life, better symptom management, lower rates of depression and anxiety, and improved survival. Because patient and family needs are met, crises are prevented, thereby directly reducing need for emergency department and hospital use and their associated costs.”
Around a quarter of older Americans die in nursing homes each year, including nearly 70 percent of individuals with advanced dementia. For these individuals, the delivery of coordinated, person-centered services at the end of life is a central component in the array of supportive and therapeutic services they receive. Although growing numbers of nursing home residents are accessing Medicare’s hospice benefit before death, substantial barriers continue to impede the meaningful integration of palliative and hospice care into the long-term services and supports that most nursing home residents receive. These barriers range from the orientation of nursing homes — and the regulatory standards that govern them — toward rehabilitative care, to the fragmented approach of Medicare and Medicaid in financing acute, post-acute, palliative, and supportive services.
The challenge of improving end-of-life care in nursing homes is broad, and no single policy reform or intervention alone will be sufficient. Nonetheless, there are several mechanisms by which policymakers and practitioners could improve end-of-life care in nursing homes. Importantly, these mechanisms align broadly with the guiding principles for long-term services and supports (LTSS) outlined by the US Commission on Long-Term Care in their final report to Congress. Specifically, the Commission concluded that there is an urgent need to enhance the quality of LTSS and improve the coordination among the providers that deliver these services. While emphasizing the need to finance and deliver services in a fiscally sustainable way, the Commission called for improving “the integration of LTSS with health care services in a person- and family-centered approach.”
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