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What If Residents Decided How Their Nursing Home Would Run?

Person-centered care is transforming life in care facilities

Part of the Transforming Life as We Age Special Report

When asked how she feels about living at St. Camillus Health Center in Whitinsville, Mass., her home for 15 years, Alice Hallinan doesn’t hesitate. “I love it very much,” the 96-year-old says. “My daughter wants me to move closer to her, but no way I would leave.”

Perhaps more surprising than Hallinan’s love for life in a nursing home is the reason why: “The freedom!” she says. “The meals are great, and if you don’t like them, you can get whatever you want. You can go to bed whenever you want, you can get up whenever you want, you can dress how you want. It’s everything the way you want.”

What Is Person-Centered Care?

St. Camillus prides itself in delivering person-centered care considered the gold standard by medical and aging professionals.

“Person-centeredness is a step in the direction of a larger organizational culture change,” says Ruta Kadonoff, director of the Pioneer Network, which has been pushing for transformation of the institutional culture of nursing homes since 1997. (I have made such efforts one topic of my 20 years of study on aging, and focused on it in my book, Old Age in a New Age — The Promise of Transformative Nursing Homes.)

“Rather than designing what we do around what works for the institution and the staff, we look at what works for the person — individualizing, responding to each person’s needs,” she notes. The goal, Kadonoff says, is for the resident to be “the locus of control.”

In the old way, all residents would be rousted at the same time, then wait for breakfast to be served on a tray. By then, the food was often cold or not what they wanted.

As part of a broad national effort to advance this goal, a panel convened by the American Geriatrics Society, with support from The SCAN Foundation, recently published a statement defining person-centered care — which it said is especially important for older adults with chronic conditions or functional limitations.

Such care is guided by the individuals’ values and preferences, the statement said, and supports residents’ health and life goals. This is achieved through collaborative relationships.

Passion, Purpose

For Hallinan, this translates into having a meaningful life. She enjoys delivering the morning prayer over the intercom, operating a little thrift shop to raise money for resident activities and, best of all, continuing her lifelong passion for cooking.

With a full kitchen in the activity room and with staff making sure the ingredients are available, Hallinan cooks her favorite chicken, spinach and rice, soup and even baklava. “Sometimes I make cheese bread for all the workers, which they keep bugging me for,” she says.

On a recent day, Hallinan, who uses a wheelchair, went shopping at WalMart with three residents and accompanying staff. “It was a lot of fun,” she says. “Then we had lunch at Subway.”

Early Pushback

St. Camillus was not always so person-centered. A decade ago, Administrator Bill Graves and Director of Nursing Sandy Godfrey received a quality improvement grant, funded by the Centers for Medicare and Medicaid Services (CMS).

With guidance from culture change experts and exchanges with other grantees, they began to take steps to create more person-centered care.

The first thing Graves and Godfrey wanted was to have consistent assignments, so staffers would work with the same residents each day.

“We had a lot of pushback from staff,” Godfrey recalls. “They were under the impression you don’t want to get too close to people, the old-school way of thinking, which now sounds so foreign to us.”

Listening to the Rank-and-File

So Graves and Godfrey worked to educate and get buy-in from the staff on the importance of strong relationships and of resident choice. They encouraged input from front-line caregivers — and acted on their suggestions.

For example, a certified nursing assistant (CNA) objected to the undignified way that death was handled. The deceased resident would be wrapped in a plastic sheet with a nametag on the toe and jaw tied shut, and the funeral home would spirit the body out the back door.

Now, family and staff gather in the dying person’s room. The body is covered with a special quilt, embroidered with the names of residents who have died. The staff and family then accompany the body out the front door. Each year, families are invited back for a special dinner to celebrate their loved one’s life.

“There’s a lot of stories like that that we could tell,” says Graves. Eventually, he says, the staff agreed that consistent assignments would allow them do a better job of person-centered care. They also came to like the idea of resident choice — but it took some convincing.

A Convert

“I was one of the biggest opponents,” says CNA Maureen Mahoney, a 19-year veteran of St. Camillus. “I said there’s no way this is going to work.”

In the old way, all residents would be rousted at the same time, then wait for breakfast to be served on a tray. By that time, the food was often cold or not what they wanted.

“Now we go in and gently awaken them and ask them what they’d like to do,” says Mahoney. “Some want to sit and have coffee in their bathrobes, some want to be washed and dressed. Before, it was a mad rush to get the day started.”

Now, Mahoney says, she loves “giving the residents the control back, to live life the way they want to. It’s still their home and they need to have their choices and their wants met, because it’s important for them as a person, it validates them as humans.”

Working with the same residents each day allows her to give better care, she says. “You can anticipate their needs or wants,” says Mahoney. Problems such as incontinence, skin breakdown or dementia-related agitation can better be prevented.

Obstacles to Widespread Adoption

Although a significant number of nursing homes are moving toward person-centered care, the traditional, institutional mindset still holds sway. A 2013 survey of nursing homes on their culture change practices (including resident-centered care, a homey environment and staff empowerment) found that just 13 percent “had completely changed the way the [nursing home] cared for residents,” while many others had made steps toward such change.

Graves says dozens of nursing homes have toured St. Camillus to learn from its example. Most assume such personalized care will cost more or be prohibited by regulations. Neither assumption is true.

“What we say to them is everything that we’ve done did not cost us more money,” says Graves. “Overall, it’s a cost savings because you’re doing things right for people the first time, so you don’t have to go back and do it over again.” Research has shown the similar homes have less food waste and lower staff turnover and absenteeism, among other savings.

Regulations also are not a barrier, says Graves, and he urges nursing homes to proactively talk about person-centered measures with state inspectors.

For nurses, “giving up control” and allowing CNAs more input into decision-making is difficult, says Godfrey, but fundamental to meaningful change — as is committed leadership from the top.

Change Easier on a Smaller Scale

Another obstacle: the corporatization of nursing homes. “We’re fortunate in that we’re a stand-alone facility, and decisions that we make, we can make them daily,” says Godfrey. “We don’t have to go to a corporate headquarters.”

Kadonoff agrees. “The greater the distance between the ultimate decision makers and the person living or working at the home, the harder it is to be individualized and person-centered,” she says.

“The people sitting in a corporate office somewhere that may be calling the shots about budgets and key policies and procedures may not really have as good an understanding how they play out on a human and day-to-day scale,” notes Kadonoff. Seventy percent of nursing homes are operated by for-profit companies, and the majority own multiple facilities.

Driving Change

The Pioneer Network and other like-minded organizations (Eden Alternative, Action Pact, Paraprofessional Healthcare Institute) have developed webinars, trainings and consulting services to nudge nursing homes.

Another untapped driver of change is consumer demand, says Kadonoff.

“Most people have a really negative perception of nursing homes, and they tolerate more than they should, honestly,” she says. “One thing that will potentially drive change is for consumers to know what they should expect and then talk with providers.”

How does a consumer know if a nursing home delivers person-centered care? The Pioneer Network has developed key questions to ask.

Kadonoff says it’s important to look beyond the furnishings. “Never be blinded by the chandelier,” she says. She recalls visiting a modest nursing home with mismatched furniture. “But people were connecting, hugging, laughing,” she says. “You could just tell people were happy and were cared for in a loving way.”

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