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Leaving Hospital, Older Patients Resist Home Help At Their Peril

A lonely 60 years old senior in is apartment

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 didn鈥檛 want anyone coming into his home, and he didn鈥檛 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. She鈥檇 spent a lot of time trying to convince her father that a few weeks of help at home was a good idea. And she鈥檇 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 they鈥檙e being discharged from a hospital 鈥 mostly older adults 鈥 say 鈥渘o鈥 to those services, according to a new .

Understanding why this happens and what can be done about it is important 鈥 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鈥 odds of being readmitted to the hospital within 30 or 60 days double, according to one .

Why, then, do seniors, resist getting this assistance?

鈥淭here are a lot of misperceptions about what home health care is,鈥 said Carol Levine, director of the United Hospital Fund鈥檚 Families and Health Care Project, a sponsor of the new report.

, 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 鈥渉ome care鈥 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鈥檚 father made. He thought he was being offered an aide who would come to his apartment every day for several hours. 鈥淚 don鈥檛 want a babysitter,鈥 he complained to Winstel, chief operating officer of the .

Like many other seniors, this older man was proud of living on his own and didn鈥檛 want to become dependent on anyone.

鈥淥lder adults are quite concerned about their independence, and they worry that this might be the first step in someone trying to take that away,鈥 said Dr. Leslie Kernisan, a San Francisco geriatrician and creator of the website .

Other reasons for refusals: Seniors see their homes as sanctums, and they don鈥檛 want strangers invading their privacy. They think they鈥檝e 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鈥檛 want someone to see. Or the patient鈥檚 cognition is compromised and he doesn鈥檛 understand his needs or limitations. Or cost is a concern.

Robert Rosati, vice president of research and quality at , New Jersey鈥檚 largest private home health care provider, said about 6 percent of seniors who鈥檝e agreed to receive home health care from his organization after a hospitalization end up refusing services.

Often, a breakdown in communication is responsible. Patients haven鈥檛 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 don鈥檛 understand what they鈥檙e getting into, prompting resistance, Rosati said.

Kathy Bowles, director of the at the Visiting Nurse Service of New York, suggests a plain-language, positive way to convey this information. For example: 鈥淎 nurse will check your medications and make sure they鈥檙e all in order. She鈥檒l assess if you need physical therapy to help you regain your strength. And she鈥檒l teach you and family members how to care for you once home care is over.鈥

鈥淎 lot of resistance arises from pride,鈥 said Bowles, also a professor of nursing excellence at the University of Pennsylvania. 鈥淭he conversation has to change from 鈥楲ook, we think you really need help,鈥 to 鈥榃e want to help you take care of yourself.鈥 鈥

Emphasizing that a physician has recommended home health care can also be helpful. 鈥淚n my experience, if a doctor says 鈥業鈥檇 like a nurse to come see you and check that you鈥檙e feeling better,鈥 people are fairly responsive,鈥 Kernisan said.

Instead of arguing with an older adult who says 鈥淚 don鈥檛 want any assistance,鈥 try to follow up by asking 鈥淭ell me more. What are you concerned about?鈥 Kernisan suggested. 鈥淧eople really want to feel listened to and validated, not lectured to.鈥

This isn鈥檛 to suggest that persuading an older adult to accept unwanted help is easy. It鈥檚 not.

Last year, Winstel鈥檚 father had a medical device implanted in his spine to relieve pain from spinal stenosis 鈥 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鈥檛 get up from the floor. Winstel said she鈥檇 call 911. 鈥淣o, I don鈥檛 want someone coming in and finding me like this,鈥 her father insisted. 鈥淵ou have to come.鈥

Later, at the hospital, doctors diagnosed an adverse reaction to medication and a surgical site infection on her father鈥檚 back. 鈥淗e lives alone. He can鈥檛 reach back there. He wasn鈥檛 caring for the wound properly,鈥 Winstel explained.

Extensive, heated conversations followed, during which her father insisted he was never going to change. 鈥淔or him, living independently carries risks, and he鈥檚 willing to accept those risks,鈥 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. 鈥淎s 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,鈥 Winstel said.

KHN鈥檚 coverage related to aging & improving care of older adults is supported by .

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