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Improving end-of-life care begins with honoring patient preferences

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Scott T. Shreve
Scott T. Shreve

When it comes to dying in the United States, the interests and inclinations of payers and providers often outweigh the needs of patients, especially when it comes to end-of-life care. Take hospice care for seniors. If Medicare beneficiaries choose hospice care, they lose Medicare coverage for disease modifying interventions, nursing home and hospital care. This isn't much of a choice for patients and certainly doesn't account for their preferences. 

At the same time, physicians often substitute more familiar options, like surgery, regardless of patient goals or in lieu of a full range of alternatives (e.g. palliative care). In order to improve end-of-life care, health care systems and providers must first align the care they deliver to their patients' values, goals and preferences.

The fragmentation of American healthcare makes system-wide improvement of end-of-life care challenging (at best), but it can be done. Findings in a recent issue of Health Affairs show that the U.S. Department of Veterans Affairs' system-wide efforts to improve end-of-life care, premised on honoring veterans' preferences, resulted in large increases in hospice use.

In order to make end-of-life care easier for patients, the VA implemented the Comprehensive End-of-Life Care initiative in 2009, which improved the quality of veterans' end-of-life care by increasing VA Medical Center inpatient hospice units, palliative care staff and training, quality monitoring and community outreach. This investment enabled veterans to choose the services that best aligned with their preferences and needs. It also allowed veterans to choose hospice care while continuing to receive active disease treatment, so for many veterans it wasn't an either/or choice like it is for so many others.  

Most patients want to spend their final days — whether they be counted in months, weeks or days—in familiar places with loved ones doing as many of the things they enjoy as they can. While hospitalizations and aggressive disease treatment are common in serious illness, hospice and palliative care specialists support patients through the entire trajectory of disease to include educating and empowering patients about the benefits and burdens of various interventions. Unsurprisingly, patients and their families perceive the resulting care as higher quality because it aligns with their needs and goals. Every VA Medical Center has palliative care programs, but only two-thirds of private sector hospitals have them.

Evaluation of the VA's CELC initiative found that increased access to palliative care resources resulted in increased hospice use by veterans that surpassed increases for similar Medicare beneficiaries not enrolled in VA healthcare. Not only was there increased hospice access, but numerous related studies have shown improvements in the quality of patient care following the VA's CELC initiative.

While the VA's efforts as a one-payer medical system are not easily replicated, all health care systems and providers need to find ways to align an ever increasing array of treatments and services with patient and family preferences, with the likely outcome of less costly and burdensome care for patients.

Scott T. Shreve is national director of hospice and palliative care at the Lebanon VAMC, in Pennsylvania.

Susan C. Miller is professor of health services, policy, and practice at the Center for Gerontology and Health Care Research, Brown University School of Public Health, in Rhode Island.

 

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