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Family caregivers often find themselves unable to care for a patient after a hospital discharge, but health care providers are typically completely unaware of the problem.
"It may be because of the family caregiver’s job responsibilities or their own health, or any number of reasons. It’s better to know those barriers upfront," says Carol Levine, director of United Hospital Fund’s Families and Health Care Project in New York City.
A 2012 study found that more than one-third of caregivers wanted more training on wound care.1 "If wound care is part of the discharge plan, the last thing you want is a situation in which it’s done poorly, because that will end badly for everybody," says Levine.
Some preventable readmissions occur simply because family caregivers aren’t involved with care planning before the day of discharge, she says.
"A lot of times, there is a lot of disrespect, even if unintended, shown to patients or family caregivers, based on providers’ frustration," adds Levine. "The attitude is, This has got to get done and you’re the one who’s got to do it.’"
A new tool for hospitals, Understanding and Enhancing the Role of Family Caregivers in the Re-Engineered Discharge, prepared by United Hospital Fund in collaboration with Project RED at Boston University Medical Center,2 formalizes the role of family caregivers.
"Involving families before discharge supports patient- and family-centered care, which views the patient not as a collection of diseases or conditions but as a whole person," says Levine, one of the tool’s authors.
The tool structures the process of working with family caregivers into five steps: identifying the family caregiver, assessing the family caregiver’s needs, integrating the family caregiver’s needs into the after-hospital care plan, sharing family caregiver information with the next setting of care, and providing telephone reinforcement of the discharge plan.
"Many physicians and other health care providers have a rather negative attitude about families. They are worried they will be difficult to deal with or will somehow sabotage the care plan," says Levine. The tool stresses how important communication with the patient’s caregivers is to preventing a needless hospital readmission. "This makes it more likely that the care plan will be followed and the patient won’t come back to the ED. It also allows family caregivers the opportunity to explain what they can and can’t do," says Levine. "It’s not a consent process, but at least it gives them a voice."
Giving family caregivers an opportunity to participate in care planning is "a matter of justice," according to Levine. "If you are going to put a responsibility on somebody, you ought to let them have a say in whether they can do this or not," she says. "The health and well-being of the caregiver is certainly an ethical issue as well."
Bioethicists can help to identify systemic problems, such as systems not properly identifying the family caregiver. "They can be a very strong voice to make sure the patient’s and family’s views are heard," says Levine. "They can be the mediator between more clinically-oriented people and the patient and family."
Hospital-based discharge interventions that focus on traditional aspects of care may overlook social and functional gaps in post-discharge care at home for vulnerable older adults, according to a 2014 study.3
Researchers interviewed 24 vulnerable older adults in a patient-centered qualitative study, in which participants described their experiences of recovery at home and their needs for successful transition.
The study’s findings reinforced that many patients who access "safety-net" public hospitals have worse health and worse outcomes of hospitalization — including but not limited to readmission, says S. Ryan Greysen, MD, the study’s lead author and an assistant professor of medicine at University of California — San Francisco.
"They live in unhealthy areas with poor social support and inadequate resources to get well and stay well, or at least maintain a certain level of health, as opposed to continually worsening with their chronic conditions," says Greysen.
Bioethicists could advocate for more partnerships between hospitals and community-based programs, he suggests. "There is an ethical obligation to do a better job of guiding patients and families through the post-discharge period, as a matter of beneficence," says Greysen.