The 84-year-old man who had suffered a mini-stroke was insistent as he spoke with a social worker about being discharged from the hospital: He didn’t want anyone coming into his home, and he didn’t think he needed any help.
So the social worker canceled an order for home health-care services. And the patient went back to his apartment without plans in place for follow-up care.
When his daughter, Lisa Winstel, found out what had happened, she was furious. She had spent a lot of time trying to convince her father that a few weeks of help at home was a good idea. And she had asked the social worker to be in touch if there were any problems.
Similar scenarios occur surprisingly often: As many as 28 percent of hospital patients offered home health care when they’re being discharged — mostly older people — say “no” to those services, according to a new report.
Yet refusing home health care after a hospitalization can put patients at risk of a difficult, incomplete or prolonged recovery. Without these services, older adults’ odds of being readmitted to the hospital within 30 or 60 days double, according to one study.
Why, then, do seniors resist getting this assistance?
“There are a lot of misperceptions about what home health care is,” said Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, a sponsor of the new report.
Under Medicare, home health-care services are available to beneficiaries who are homebound and need intermittent skilled care from such medical providers as a nurse, a physical therapist or a speech therapist.
Typically, these services last four to six weeks, with a nurse visiting several times a week.
Many seniors and caregivers confuse home health care with “home care” delivered by aides who help people shower or get dressed or who cook, clean and serve as a companion. The two types of services are not the same: Home health care is delivered by medical professionals; home care is not. Nor is home care covered by Medicare, for the most part.
This was the mistake Winstel’s father made. He thought he was being offered an aide who would come to his apartment every day for several hours. “I don’t want a babysitter,” he complained to Winstel, chief operating officer of the Caregiver Action Network, a nonprofit based in Washington.
Like many other seniors, this older man was proud of living on his own and didn’t want to become dependent on anyone.
“Older adults are quite concerned about their independence, and they worry that this might be the first step in someone trying to take that away,” said Leslie Kernisan, a San Francisco geriatrician and creator of the website Better Health While Aging.
Other reasons for refusals: Seniors see their homes as sanctums, and they don’t want strangers invading their privacy. They think they’ve been getting along just fine and have unrealistic expectations of what recovering from a hospitalization will entail.
Or there are circumstances at home — perhaps hoarding, perhaps physical neglect — that an older adult doesn’t want someone to see. Or the patient’s cognition is compromised and he doesn’t understand his needs or limitations. Or cost is a concern.
Robert Rosati, vice president of research and quality at the Visiting Nurse Association Health Group, New Jersey’s largest private provider of home health care, said about 6 percent of seniors who initially agree to receive home health care from his organization after a hospitalization end up refusing services.
Often, a breakdown in communication is responsible. Patients haven’t been told, in clear and concrete terms, which services would be provided, by whom, for how long, at what cost and what the expected benefit would be. So they don’t understand what they’re getting into, which prompts resistance, Rosati said.
Kathy Bowles, director of the Center for Home Care Policy & Research at the Visiting Nurse Service of New York, suggests a plain-language, positive way to convey this information. For example: “A nurse will check your medications and make sure they’re all in order. She’ll assess if you need physical therapy to help you regain your strength. And she’ll teach you and family members how to care for you once home care is over.”
“A lot of resistance arises from pride,” said Bowles, who is also a professor of nursing excellence at the University of Pennsylvania. “The conversation has to change from ‘Look, we think you really need help’ to ‘We want to help you take care of yourself.’ ”
Emphasizing that a physician has recommended home health care can be helpful. “In my experience, if a doctor says, ‘I’d like a nurse to come see you and check that you’re feeling better,’ people are fairly responsive,” Kernisan said.
This isn’t to suggest that persuading an older adult to accept unwanted help is easy. It’s not.
Last year, Winstel’s father had a medical device implanted in his spine to relieve pain from spinal stenosis — an outpatient procedure. Once again, he declined postoperative help.
Two days later, Winstel got a phone call from her dad, who had collapsed and couldn’t get up from the floor. Winstel said she would call 911. “No, I don’t want someone coming in and finding me like this,” her father insisted. “You have to come.”
Later, at the hospital, doctors diagnosed an adverse reaction to medication and a surgical-site infection on her father’s back. “He lives alone. He can’t reach back there. He wasn’t caring for the wound properly,” Winstel explained.
Extensive, heated conversations followed, during which her father insisted he was never going to change. “For him, living independently carries risks, and he’s willing to accept those risks,” Winstel said.
She hopes the new report on seniors refusing home health care will jump-start a conversation about how to bring caregivers into the process and how recommendations should be conveyed.
“As the daughter of someone who has refused care, understanding that this is something lots of people go through makes me feel a little less crazy,” Winstel said.
This column is produced by Kaiser Health News, a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. KHN’s coverage related to aging and improving care of older adults is supported by the John A. Hartford Foundation.