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 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 for follow-up care in place.

When his daughter, Lisa Winstel, found out what had happened she was furious. She'd spent a lot of time trying to convince her father that a few weeks of help at home was a good idea. And she'd 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're 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.

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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 Fund's 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 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.

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 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 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.

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Robert Rosati, vice president of research and quality at Visiting Nurse Association Health Group, New Jersey's largest private home health care provider, said about 6 percent of seniors who've 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't 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't understand what they're 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 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, 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 'I'd like a nurse to come see you and check that you're feeling better,' people are fairly responsive," Kernisan said.

Instead of arguing with an older adult who says "I don't 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 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'd 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.​


http://www.kaiserhealthnews.orgThis article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Comments

  1. Helen Valenzuela Helen Valenzuela United States says:

    My parents were the same way.  My step-dad had great insurance from both the federal government and the military that would cover home health and other services 100%.  But, since they were hoarders, they didn't want anyone in the house.  Even if it meant that the house would be clean so they wouldn't get sick and having someone cook for them so they wouldn't have to risk going out to eat 30 miles into town.  Just stupid foolishness.

  2. Kody Bailey Kody Bailey United States says:

    Many Seniors might be concerned that the care is very expensive.I had a pic line and was totally surprised that the weekly nurses visit was covered by Medicare without any out of pocket cost.

  3. Susie Rock Susie Rock United States says:

    After having severe pneumonia they recommended home health care  so I agreed to it.  I have always liked staying up late and sleeping in as well.  Hospitals are notorious for not letting patients get sleep because they have to do their jobs on a schedule.  I found that in the hospital there was a 4 hour period between 10 p.m. and 2 a.m. and that was it!  So the first thing I want when I get home is to get some sleep.  But the day after my phone rang at 8 a.m. from home health wanting to schedule a visit.  I asked them to call me later numerous times but every time I would get a different person and communication between workers was not very good.  This continued on for about 3 weeks and never got any better so I told them to go away and leave me alone.  I didn't especially mind the visits and the physical therapy guy was nice but he wasn't a help really.  It seems these services are great for people who are more feeble than me and I will consider them in the future but right now I just want to sleep.

  4. Bob Greene Bob Greene United States says:

    Boy, do I understand.  If the health care people were really helpful it might be worth being dependent on their schedule, but they spent all the time on their computers and talking to each other and wasted my time.  It would have been better to just be allowed to rest up and gain my strength back on my own.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News-Medical.Net.
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