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Treating the “Invisible Homebound”: Setting Standards for Health Care Provided at Home

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A conversation with researchers Bruce Leff and Christine Ritchie

Some 4 million Americans have chronic illness and functional limitations that render them effectively unable to leave their homes—even to visit the doctor. Bruce Leff and Christine Ritchie, coauthors of a recent Health Affairs study (Jan. 2015) supported by The Commonwealth Fund, spoke with us about the challenges faced by the “invisible homebound” and the work their research team is doing to help ensure the quality of home-based health services.*

How do the homebound currently get medical care?

They access much of their care through emergency services, cycling in and out of the hospital and skilled nursing facilities. With the combination of multiple chronic conditions and fragmented care, homebound adults are among the costliest patients in the U.S. health care system. We estimate that some 4 million people would benefit from home-based primary and palliative care services, and there is no doubt that this population will grow as the general population ages.

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So how does home-based care work?

Medicare spends $18 billion on skilled home health services, which include nursing and various therapies provided by licensed agencies on an episodic basis for patients recuperating from surgery or a recent hospitalization. This is very different than physicians providing regular and ongoing primary and palliative care to vulnerable, homebound adults. The larger home-based care practices use a team approach involving some combination of doctors, nurse practitioners, nurses, social workers, and therapists. We think over time most practices will evolve to become team-based to meet the multiple needs of functionally limited patients.

In your article, you note that despite a 150 percent increase in home-based medical visits between 2006 and 2013, home-based medical practices “operate in a quality desert.” Can you explain?

Existing quality measures don’t take into account the frailty or multiple chronic conditions that affect this population. Many standards of care were developed based on studies of people with only one condition—only diabetes, say. Our patients, who have a mortality rate of 20 percent to 30 percent, are never included in these studies, and the standards are often not applicable to them.

Practitioners who provide primary or palliative care at home face a complicated balancing act. Their focus may not be to cure patients, but to improve or maintain their quality of life without doing harm. As health systems begin moving reimbursement toward paying for quality, providers are really desperate for a well-informed standard of care for homebound patients and the ability to benchmark what they do against others.

You established a network of exemplary home-based medical practices, professional societies, and patient advocacy groups to help develop a quality framework for home-based primary and palliative care. How did you go about that?

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We started by having conversations with as many stakeholders as possible—doctors, patients, families, caregivers, professional societies, consumer and advocacy groups, and service providers. We asked them: “What constitutes quality care when someone has multiple illnesses and functional limitations or is at the end of life?” We learned that disease-specific quality indicators are not as important as making sure we are aligning the care we provide with patient and family preferences. That means measuring how well we manage and coordinate care, how effectively we reduce distress and control family burnout. It means making sure we know if patients want to be hospitalized or want certain treatments and that advanced directives are being met. We’ve come up with 20 quality measures, and several of our network practices are now testing for feasibility and validity.

What comes next?

The next step is to create a national registry where home-based practices can enter standardized quality data collected at the point of care. Then we’d like to integrate our quality framework into standard measures for home-based medical care that can be used by the Centers for Medicare and Medicaid Services and by professional societies and organizations. We also think it’s important to develop a certification process for practices. Recognizing practices that meet quality standards will also be helpful for payers, since reimbursement is increasingly being tied to quality of care. This also will be helpful to patients and their caregivers seeking high-quality care.

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