Many Americans have stories to tell about failures in care when a family member became ill. Mine runs from 2005 through 2016, when I was a family caregiver for my mother, father, and aunt.

During the last few years of their lives, they were in and out of hospitals and received treatment after discharge in almost every possible setting — rehabilitation units, home health care, nursing homes, hospice, and more. Yet I can’t recall ever having a discussion with a hospital staff member about how to choose post-discharge care. Instead, I was often handed a list of facilities or agencies and, with little guidance about what to look for, was sent on a shopping expedition.

My experience is all too common. More than 20% of people who are hospitalized in the U.S. each year — well over 8 million people — require medical care after being discharged from the hospital. This is known as post-acute care. That number is sure to climb as the population ages, the burden of chronic illness rises, and hospitals come under increasing pressure to shorten stays and move patients to lower-intensity settings as ways to control costs.

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But patients and their families rarely have the expertise and support needed to navigate websites, identify higher-quality providers, assess their options, and make the best possible choice for post-acute care.

Current federal regulations restrict hospitals from recommending specific post-acute care providers as a way to avoid financial conflicts of interest. Those “anti-steering” rules make doctors, nurses, and other hospital staff members hesitant to give more than cursory advice about where patients should seek care, even though decisions about post-discharge care must often be made rapidly during what can be a stressful and vulnerable time.

Patients or their family members usually select post-acute care based on location or word-of-mouth recommendations rather than on quality of care. But there’s a lot on the line since the wrong choice can increase the risk of rehospitalization, emergency visits, decline in physical or mental function, or becoming a permanent resident of a nursing home.

We need a better way for patients and families to choose post-acute care.

Two opportunities could help bring some sorely needed clarity to this shopping quandary.

One is regulatory. Pending regulations proposed by the Centers for Medicare and Medicaid Services would require hospitals to share with patients and families quality information about rehabilitation centers and other post-acute care providers that is relevant to their treatment goals and preferences. CMS has until Nov. 3 to issue a final ruling. On behalf of the millions of Americans who could benefit from this advice, I urge CMS not to miss this deadline.

But a regulatory fix alone won’t be enough. To advance more informed decisions, hospitals should integrate shared decision-making into discharge planning, a process in which a designated staff member works with patients and families to identify the available post-acute care options and the benefits and risks of each. The goal should be to help patients and their families understand the various tradeoffs involved and make choices based on what matters most to them, not on what is most convenient. This would be an invaluable way to bridge communication and knowledge gaps about provider quality, especially for those who can’t access or aren’t comfortable with using the internet, or who have literacy, numeracy, or English proficiency challenges.

The notion that sick, frail, or elderly patients and their families can somehow figure out on their own the best choice for post-acute care must be discarded. It’s time to remove the shopping burden by tackling the legal and communication barriers that prevent people from getting the support they need to make the best possible decisions about ongoing care.

Lynn Rogut is the director of quality measurement and care transformation for United Hospital Fund’s Quality Institute and co-author of the organization’s Difficult Decisions About Post-Acute Care reports.

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  • As someone who has worked in post acute care settings for the past 30 years I agree there needs to be a better way for families to make informed decisions for their loved ones, but as long as there is the potential for financial loss to corporations with any changes made, the patient will always be the one that suffers no matter what regulations are passed. I am always seeing “knee jerk reaction” changes regarding patient’s care when there are dollars at stake. Take for instance the reimbursement from time based to outcome based. Now instead of a patient getting one on one therapy (which is usually unrealistic high minutes of therapy), we are having to treat patients concurrently or in groups. Nothing is ever truly about what’s best for the patient. It is only what’s best for the bottom line. Thank God there are at least companies like Navi health sending people into these places to monitor the patient’s progress and advocate for what they need. Go Navi health!

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