A commentator recently described the US as a “nation of patients.” Almost half of all adults in this country have at least one chronic illness and about 24 percent have multiple conditions, according to the Centers for Disease Control and Prevention. Many will require long-term care and assistance with activities of daily living, such as eating, dressing, and bathing.
Increasingly, health care is being provided within the home, either by caregivers or by patients themselves. While no one would claim that we’ve conquered the patient safety problem in hospitals, many now recognize that in order to advance safe health care we need to consider how care is delivered across the continuum — and that includes at home.
In 2016, with a grant from the Gordon and Betty Moore Foundation, the National Patient Safety Foundation (which has since merged with IHI) partnered with Westat, an independent research organization, to assess safety in home care. We learned a lot in the first phase of this project, the findings of which we recently published in Patient Safety in the Home: Assessment of Issues, Challenges, and Opportunities.
A Multidimensional Problem
Ask anyone if they want to be in a hospital and the answer is most likely “no.” Many hospitalized patients yearn for home and the comfort of their own beds. But home care can be complex: a mix of paid and unpaid caregivers, varying community supports, home health care professionals, equipment and technology challenges, and mostly inadequate funding.
The Patient Safety in the Home research team focused on four dimensions that profoundly affect patient care in the home setting:
- Physical — This includes attributes of the home, including the layout, clutter, and unsanitary conditions. This dimension influences processes of care, such as medication administration, fall prevention, and infection control.
- Emotional — These issues develop in response to the psychological impact of receiving and providing care and affect patients and caregivers alike, as both can suffer psychologically as a result of needing or providing care.
- Social — This includes the patient’s family or other support networks that may or may not be available in the community.
- Functional — This pertains to how health conditions impact a patient’s activities of daily living, including what they need to do to participate in their care.
The Enormous Role of Family and Friends
One of the most notable findings of this work is the burden that home care places on caregivers — usually relatives. Research suggests that nearly 80 percent of patients receiving care in the home rely on unpaid help from relatives or friends. The caregivers interviewed for this project spoke about the lack of preparation to take on such a challenging role. Caregivers manage medications, specialized medical equipment, and wound care with no formal training, resulting in many reporting high levels of stress and fear related to making a medical error.
Family caregivers also often end up being responsible for care coordination. A nurse, an occupational therapist, and a support worker may come into the home, but they may not necessarily speak with or leave notes for each other. The only people seeing the big picture may be the patient and caregiver. Although they experience health care from a different angle, it’s time to recognize patients and their caregivers as integral members of the health care team.
The financial toll of providing care at home also rests largely on family and unpaid caregivers. Research shows that the out-of-pocket burden on patients and their families is enormous, and the availability of federal funding is limited and variable. Medicare is limited to certain levels of care, and the Centers for Medicare and Medicaid Services is recommending cuts in reimbursement, a trend that began in 2014. One consequence of this has been a reduction in the number of home health care agencies nationwide.
IHI’s Triple Aim — enhancing the experience of care, improving the health of populations, and reducing costs — has helped to influence value-based care models, which reward providers for quality over quantity of care. We are beginning to see some innovative programs of this kind focused on home care, such as the Independence at Home Demonstration Project and the Home Health Value-Based Purchasing program being piloted in nine states.
Much more work needs to be done to enable caregivers to safely care for patients at home. We must get a better understanding of the challenges of home care. Building on what we’ve learned so far, our goal during Phase II of this work (currently underway) is to convene experts to identify strategies and innovative approaches to improve safety in this setting.
Tejal K. Gandhi, MD, MPH, CPPS, is IHI’s Chief Clinical and Safety Officer.
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