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Some Seniors Just Want To Be Left Alone, Which Can Lead To Problems

The 84-year-old man who had suffered a mini-stroke was insistent as he spoke to a social worker about being discharged from the hospital: He didnt want anyone coming into his home, and he didnt 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 for follow-up care in place.

When his daughter, Lisa Winstel, found out what had happened she was furious. Shed spent a lot of time trying to convince her father that a few weeks of help at home was a good idea. And shed asked the social worker to be in touch if there were any problems.

Similar scenarios occur surprisingly often: As many as 28 percent of patients offered home health care when theyre being discharged from a hospital mostly older adults say no to those services, according to a new report.

Understanding why this happens and what can be done about it is important part of getting smarter about getting older.

Refusing home health care after a hospitalization puts patients at risk of a difficult, incomplete or slower-than-anticipated 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 Funds Families and Health Care Project, a sponsor of the new report.

Under Medicare, home health care services are available to older adults who are homebound and need intermittent skilled care from a nurse, a physical therapist or a speech therapist, among other medical providers.

Typically, these services last four to six weeks after a hospitalization, with a nurse visiting several times a week. Some patients receive them for much longer.

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 Winstels father made. He thought he was being offered an aide who would come to his apartment every day for several hours. I dont want a babysitter, he complained to Winstel, chief operating officer of the Caregiver Action Network.

Like many other seniors, this older man was proud of living on his own and didnt 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 Dr. 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 dont want strangers invading their privacy. They think theyve 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 doesnt want someone to see. Or the patients cognition is compromised and he doesnt understand his needs or limitations. Or cost is a concern.

Robert Rosati, vice president of research and quality at Visiting Nurse Association Health Group, New Jerseys largest private home health care provider, said about 6 percent of seniors whove agreed to receive home health care from his organization after a hospitalization end up refusing services.

Often, a breakdown in communication is responsible. Patients havent been told, in clear and concrete terms, which services would be provided, by whom, for how long, how much it would cost and what the expected benefit would be. So, they dont understand what theyre getting into, prompting 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 theyre all in order. Shell assess if you need physical therapy to help you regain your strength. And shell teach you and family members how to care for you once home care is over.

A lot of resistance arises from pride, said Bowles, 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 also be helpful. In my experience, if a doctor says Id like a nurse to come see you and check that youre feeling better, people are fairly responsive, Kernisan said.

Instead of arguing with an older adult who says I dont want any assistance, try to follow up by asking Tell me more. What are you concerned about? Kernisan suggested. People really want to feel listened to and validated, not lectured to.

This isnt to suggest that persuading an older adult to accept unwanted help is easy. Its not.

Last year, Winstels 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 couldnt get up from the floor. Winstel said shed call 911. No, I dont 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 fathers back. He lives alone. He cant reach back there. He wasnt 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 hes 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.

KHNs coverage related to aging improving care of older adults is supported by The John A. Hartford Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

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