These are trying times for patients and families facing decisions about where to receive post-acute care (PAC)—yet another example of how deeply the COVID-19 pandemic has penetrated our lives. For those needing continued care following a hospitalization for major surgery or serious illness, and their families, decisions about PAC were already fraught before anyone had heard of a new coronavirus. Soon after long-awaited regulations by the Centers for Medicare & Medicaid Services (CMS) arrived on November 29, 2019 and February 21, 2020—which promised to improve the information and assistance that hospitals must provide to patients and families during discharge planning—COVID-19 hindered their implementation.
Before the pandemic hit, about one in four patients hospitalized in New York State continued their recovery from a serious illness or major surgery in a PAC setting (nursing homes, inpatient rehabilitation facilities, or long-term care hospitals) or at home with nursing and other services provided by a home health agency (HHA). Persistent quality problems within and across PAC settings and a slim evidence base on what care setting works best for which patients further complicate decisions about what type of care to choose and where to receive it. As a series of reports by UHF documented, hospitalized patients and families frequently reported being given limited information about PAC, directed to conduct their own research, and asked to choose a PAC provider quickly without the guidance they wanted from their care team about their options.
Then late last fall, progress appeared in the form of regulatory relief. CMS regulations introduced several major advances in support of patient and family decision-making, including:
- Requiring that the discharge planning process focus on patient and family goals of care and treatment preferences.
- Mandating that hospitals meaningfully involve patients and families or support persons in the discharge planning process.
- Expanding access to more complete information about available providers to help patients and families make informed decisions about their PAC options. Discharge planners are required to use and share relevant quality indicators to help patients and their families select PAC providers and encourage them to become actively involved in planning their transition.
- Clarifying that hospitals must inform Medicare beneficiaries or their representatives of their freedom to choose among participating providers and suppliers and, for those patients in managed care plans, identify whether providers are “in network”—when that information is available. Whenever possible, hospitals must respect patients’ goals of care, as well as treatment and other expressed preferences.
Unfortunately, these requirements were waived when CMS declared a national public health emergency in March 2020 and issued a host of temporary waivers aimed at increasing health care provider flexibility and expediting the safe discharge and movement of patients across settings. I’m not debating the need for waivers during a national emergency. Many were clearly beneficial for both patients and providers, including expanding payment for telehealth and telephone visits and services provided in alternative settings.
But other waivers, like those related to discharge planning, limit some patient rights and could result in less choice or greater uncertainty for patients and caregivers. For example, during the national health emergency, hospitals do not have to inform Medicare beneficiaries that they have a right to choose a PAC provider or to disclose the existence of a financial interest in a provider when making a referral. Nor do hospitals have to provide a full list of participating providers in the area where a patient lives or requests to go. Hospitals and HHAs also do not have to assist patients and families in selecting a PAC provider by sharing provider performance on quality metrics. These are all examples of how COVID-19 has disrupted positive change, if only temporarily. How long these disruptions will last is uncertain, but it is worth noting here that the national public health emergency has been extended through October.
In the scheme of things, the suspension of regulations that could better meet the discharge planning needs, and improve the experiences, of patients and families may seem relatively minor. The pandemic exacted a brutal toll on New York’s nursing homes, where one in four staff were infected and more than 6,300 residents died. Some proportion of those who lost their lives were short-stay patients receiving rehabilitation or other skilled nursing services. HHA professionals and workers were also at higher risk of infection given shortages of personal protective equipment, insufficient testing capacity, and other factors. And some patients and families refused home care services due to fear of COVID-19, which may lead to adverse outcomes such as rehospitalization and lower quality of life.
But actually, effective discharge planning is even more critical during a pandemic, when informed decision-making means that patients and families must engage in a calculation that weighs the benefits of each PAC option against the elevated risk of infection. Should New Yorkers go to a nursing home, where they can receive rehabilitation and other medical and nursing services by professionals and staff skilled at taking care and promoting the care of older, frailer patients, but where infection control is not foolproof? Or should patients return home after a hospitalization when this could mean relying more on family, friends, agencies, and community-based services; when availability may be constrained by COVID-19 outbreaks; and when allowing outsiders into one’s home could place an entire household at risk?
The case for informed decision-making about PAC is even more urgent now since the peril is far greater. Patients and families need more decision support, not less, to help them sort through the tradeoffs, make the best choice for their circumstances, get the care they need, and avoid low-quality care. Their recovery and well-being depend on it. Let’s hope CMS can recognize the gap in decision support created by the discharge planning waivers and lift the waivers sooner rather than later.
Lynn B. Rogut, MCRP, is United Hospital Fund’s Director of Quality and Team Lead for Quality and Efficiency at The Quality Institute.
United Hospital Fund has a long history of bringing together diverse perspectives to address critical challenges in health care in New York. In the current crisis, it’s more important than ever to hear from all parts of the health care system. Today’s commentary from UHF's Lynn Rogut looks at post-acute care in the COVID-19 era. – UHF President Tony Shih