When Health Care Ignores Your Goals
It can hurt if the care isn't based on what matters to you
Five days after a surgery and being mostly bed-bound, my 83-year-old mom was discharged from the hospital and looked forward to one thing in particular. She hadn’t been able to bathe since she left home. “A shower will feel so good,” she said as we walked to the car.
But a short time later when my mom checked in at the physical rehab facility she had chosen and we asked about a chance for her to clean up, the nurse said: “We give showers on this unit on Tuesday mornings and Friday afternoons.” It was Wednesday.
My mom shrugged off her disappointment. It was just a shower, right? But it was also the first sign we had of something more significant.
The care she would get at this place would help her regain her strength, mobility and balance, just as intended. At the same time, it would undermine another goal that was just as important to her: being treated as someone who could function on her own.
The Missing Element: 'Person-Centered Care'
Nobody asked my mom what mattered to her as a patient, not at the hospital and not at the transitional care unit of the nursing home where she spent a week getting physical therapy. That’s not unusual. Not asking is still the norm.
They would have asked, though, if they had been using an approach to care that was defined by the American Geriatrics Society (AGS) last year. In “person-centered care,” providers find out what’s important to the individual and base their care plans on that. Here’s how the AGS described it:
“'Person-centered care' means that individuals’ values and preferences are elicited and, once expressed, guide all aspects of their health care, supporting their realistic health and life goals. Person-centered care is achieved through a dynamic relationship among individuals, others who are important to them [such as family], and all relevant providers. This collaboration informs decision making to the extent that the individual desires.”
(Full disclosure: The SCAN Foundation, which funded the research on person-centered care done by the AGS and the University of Southern California’s Keck School of Medicine, also provides grant funding to Next Avenue.)
The idea of person-centered care isn’t entirely new, says Dr. Laura Mosqueda, a geriatrician who chairs the Department of Family Medicine at the Keck School and worked on the AGS definition. Under various names, elements of this kind of care have been around for decades. But it was important to consolidate those elements and agree on a single definition, says Mosqueda, a 2015 Next Avenue Influencer in Aging. Otherwise, a phrase like “person-centered care” is at risk of losing its meaning.
“Anyone can say that they’re doing it if we don’t know what ‘it’ is,” Mosqueda says.
More Than Marketing Speak
Google results bear out what Mosqueda says. A search for “person-centered care” or similar terms — “patient-centered care” and “patient-focused care” — brings up meanings that are more about marketing than anything else.
Some long-term care facilities point to amenities like in-house coffee shops or movie theaters as evidence of their person-centered approach. Others describe it as care delivered with an extra degree of warmth or a policy of really getting to know their residents. Still others claim the term to describe a homelike environment with freedom of choice about things like when, and what, to eat.
While amenities, warmth and choice are good things, they represent a “service-industry” perspective aimed at satisfying groups of customers, and that’s not what person-centered care is about, says Alexis Coulourides Kogan, a postdoctoral researcher at the Keck School of Medicine who also served on the AGS panel that defined person-centered care.
The word “person” is really the key, Kogan says. It puts emphasis on the uniqueness of the individual. It puts that person on equal footing with the people who are care providers. And for older people, the word does something more, she adds. It acknowledges that much of their care happens not when they are “patients,” but at home.
“The amount of time they’re spending within the four walls of a medical setting is maybe 10 percent, and then 90 percent of the care or services are delivered at home,” Kogan says.
Please See Me, Not Tasks and Protocols
My mom could have received physical therapy at home after her surgery. But she chose the transitional unit at the nursing home instead because the therapy there would be more intensive and she wanted to bounce back as quickly as possible. She went there with some trepidation, however.
She wanted to be seen for who she is, a fully independent and capable person. But she worried that because of her age — and now her disheveled and weakened state after surgery — the staff might assume she was frail or confused. Maybe they would question whether she could function well on her own at home. She knew from experience that health care providers sometimes see not her but their own idea of what an 83-year-old is.
When my mom had the chance, I heard her chatting with the nurses, doctors, social workers and physical therapists passing in and out of her room and sending them cues about who she is and what she can do. She mentioned that she still drives, keeps up her own house and gardens, traveled to Iceland last fall and soaked in the Blue Lagoon and made dinner for our big family group when hosting us this past Christmas Eve.
The staff were all caring and capable. And they delivered the regimen of care dictated by medical evidence and best practices and organizational policy. But they did not provide person-centered care that recognized how much she valued being active and independent.
The hospital had deemed my mom capable of going home, where she would be walking on her own. But when she checked in at the nursing home, the staff wheeled to her room in a wheelchair. When it was time to go to dinner that first night, the wheelchair appeared again to take her to the dining room — part of our fall prevention protocol, the nurse said.
My mom, a retired nurse, recognized what she was seeing in the standardized treatment she got that week, and she recalled a piece of jargon from her own working years. “There’s a term for this,” she said. What was it? “Task-oriented care.”
How Things Could Have Been Better
How might her experience have been different if the care were person-centered instead of task- or protocol-centered?
For someone who wanted to quickly regain strength and physical ability, there might have been more opportunity and encouragement to be physically active.
Short nature walks? Tai chi? Surprisingly, the activities calendar for this physical-therapy-oriented unit of the nursing home featured only sedentary activities: bingo, concerts, manicures. Other than that, there was a television in each room and a communal jigsaw puzzle to work on.
For someone who prized getting back to the small pleasures and normalcy of her independent life, there might have been more freedom to do so. A chance to eat with family? There were signs prohibiting it in the dining room, due to lack of space. Showering when you feel like it? The residents’ own bathrooms didn’t have tubs or showers. The shower room down the hall was, as we learned, available only at designated times and with the accompaniment of staff.
My mom had chosen to rehab at a nursing home that is nicer than many. It has high ratings from Medicare and a good reputation in the community. The campus looks like an Ivy League college perched on a river bluff.
But as we drove away on the day she was discharged, she declared herself sorry to have gone there. The many small signals that maybe she shouldn’t or couldn’t do things, the chipping away at her sense of her independent self, had been hard.
“They almost make you feel anxious about doing things,” she said. She got the physical therapy she wanted, but it had come at a price.