Under stress of illness and hospitalization, patients and family caregivers are not well-positioned to make informed decisions about post-acute care (including nursing homes).
NEW YORK, NEW YORK November 15, 2018—As hospital stays shorten, continued care following hospitalization is now a common part of recovery for many patients who undergo major surgery or experience serious illness. Each year, approximately one in five hospital patients in the United States, including some 300,000 New Yorkers, require such care—in rehabilitation centers, in nursing homes, at home, or in their communities. Yet too often, patients and their families do not have the critical information and support they need to carefully assess their options and make the best possible decisions.
United Hospital Fund (UHF) conducted a year-long inquiry, supported by the New York State Health Foundation (NYSHealth), to better understand why hospital discharge planning can fall short despite well-intentioned efforts by hospital staff, and today released the first in a series of reports based on that work. The report, Difficult Decisions About Post-Acute Care and Why They Matter, spotlights the many factors that can hinder informed decision-making and limit care choices.
The stakes are high—patients who receive care from lower-quality providers have higher rates of complications and worse outcomes. But patients and family caregivers may not be aware that quality of care varies, and they must choose a provider when they are stressed and under pressure. While most patients and families ask their care team for help with decision-making, many discharge planners will not offer direct advice because of concerns about complying with federal regulations that limit hospitals from recommending specific providers.
Information on post-acute care that is available online also has many limitations. It can be hard to gather and interpret, much of it is too technical, and there are gaps and barriers for those with limited English proficiency, literacy, numeracy or research skills. Mistrust of information on the Internet is an issue as well.
“There’s simply too much at stake to leave sick patients and their families on their own to research and evaluate post-acute care options,” said Lynn Rogut, director of quality measurement and care transformation at UHF and co-author of the report. “They need assistance from health care professionals to identify the best possible choices.”
Today’s report is the first in a four-part series on the Difficult Decisions project, which combined inputs from patients and their families, health care providers, researchers, policymakers, and other stakeholders with UHF’s own research to identify promising approaches for supporting decision-making at discharge. Forthcoming reports will focus on the experiences of patients and family caregivers and the perspectives of health care providers; they will also identify strategies and policy levers that could help make a difference.
“Arranging for post-acute care can be among the hardest decisions patients and their families have to make, especially when emotions are running high and they’ve been under the stress of dealing with an illness,” said David Sandman, Ph.D., President and CEO of NYSHealth. “Although there are resources available, many families are unaware of their options. These are tangible solutions to help patients and their families make the best care choices for themselves.”
“Our goal with these reports is to bring attention to this significant issue, which affects the health and well-being of many vulnerable New Yorkers,” said UHF president Anthony Shih, MD, MPH. “But, as with all our projects, the larger aim is continuous improvement of our health care system overall.”
The report can be downloaded from UHF’s website here.
About United Hospital Fund Foundation
United Hospital Foundation works to build a more effective health care system for every New Yorker. An independent, nonprofit organization, we analyze public policy to inform decision-makers, find common ground among diverse stakeholders, and develop and support innovative programs that improve the quality, accessibility, affordability, and experience of patient care. For more on our initiatives and programs, please visit our website at www.uhfnyc.org and follow us on Twitter.