It's a scene both hopeless and homey: On a sunny fall afternoon, as the world rushes past on Redwood Road, a dozen old people doze under handmade afghans in the living room of Hazen Care Center. Behind these doors, lives are clearly winding down side by side, each in a comfy recliner.
Romaine Tuft inherited Hazen from her parents, who opened it in 1962, so long ago that an aunt who helped run it back then is now a resident. In this old-fashioned setting, with its cheery little dining room filled with Tuft's Betty Boop collection, old people get back rubs at night and hugs all day.
Tuft is proud of Hazen, but she knows what people think of nursing homes. "At its best, it's a negative industry," she says frankly. "It's about something we don't want to see."
The aversion is so strong that many of the nursing home administrators and employees the Deseret News interviewed unapologetically said that they hope never to end up in one. Reportedly half of residents never receive a visitor from "outside." Some have no one nearby to visit, but the excuse is often that the situation and the place sometimes just the idea of the place is depressing. So family and friends stay away.
Part of the industry's image problem harks back to recollections of nursing homes from a generation ago, a full-sensory assault that included the stench of urine-soaked cloth diapers and the sight of old people belted into their wheelchairs.
If you haven't updated your image of nursing homes for 25 years, you won't know about the gardens, the warm decor and the cats wandering leisurely among the residents' legs all elements you may see in modern Utah nursing homes. You won't know about the effective pain management and the updated ventilation systems and moisture-repellent fabrics (only one nursing home the Deseret News visited smelled bad), or the fact that restraints and side rails are no longer used.
That's not to say that Utah's nursing homes are a destination of choice. Or the best the industry offers. Some have embraced change, some haven't. And the changes themselves are often superficial.Even today you can see a small woman dressed in pink sweatpants, wheeling herself down a linoleum hallway at 6:30 on a spring morning. A nursing assistant has awakened and dressed her, then handed her a cookie. Now she aimlessly wheels down the hall, the cookie between her legs. Later she will sit at a table in the dining room for over an hour, quietly staring at the table, waiting for the staff to bring everyone else in so breakfast can be served.
The buzzword is "culture change," and it is supposed to embrace the reshaping of an industry people love to hate. But the real thing is hard to achieve, says Rosalie Kane, a professor at the University of Minnesota whose research centers on long-term care. Adding a buffet or access to a cold snack "are good things that came with the culture change movement, but they're not culture change."
The National Citizens' Coalition for Nursing Home Reform calls culture change an overhaul of nursing homes to create a humane environment supporting "life, dignity, rights and freedom." As Beth Baker writes in her 2008 book "Old Age in a New Age," culture-change leaders "are tearing up everything the floor plans, the flow charts, the schedules, the lousy menus, the attitudes, the rules and starting from scratch."
For real culture change, Kane points to the Greenhouse in Tupelo, Miss., built on the notion that no more than 10 residents should live together. Personal care aides and certified nursing assistants are elevated to a position of greater trust and responsibility. Everyone else, including nurses, is clinical support, which initially ruffled a lot of feathers. In a Greenhouse, everyone has a private room and bathroom.
Utah nursing homes are working on it. At Salt Lake City's Hillside Rehabilitation Center, plans call for "neighborhoods" that each have a kitchenette and a small living room. They've already extended breakfast hours, added short-order cooking so residents can choose what they eat, and they let residents raid the fridge.
Some nursing homes are asking staff to help make things better. At Arlington Hills Care and Rehabilitation Center, a staffer can spend up to $100 on a resident to meet a specific need. In their Angels Program, each department has five rooms whose residents are the "parents." Explains community liaison Jim Tracy, "They watch for the kinds of things where, if this were my mom and dad, what would I notice that's not right."
One of the challenges of culture change, says Deb Burcombe of the Utah HealthCare Association, is that Utah's oversight system is not built to accept change it's geared to documenting "deficiencies." When Gary Kelso, president and board chairman of Mission Health Services, which owns several Utah nursing homes including Hillside, started making changes in his facilities even the simple notion of letting residents sleep in and come to the dining room later in the morning "he got a little push back from the state inspectors at first," she says. The good things his company was attempting didn't always match state regulations. "He was willing to fight for it" and six months later was able to report that the use of antidepressants among the residents dropped 35 percent.
Sometimes the push-back is internal. Salt Lake architect John Pace helped design a remodel of a Utah nursing home but says some of the staff fought the changes doing away with nurses stations, for example "tooth and nail."
Even if you can get past attitudes, existing architecture can sometimes prevent change. Many of Utah's nursing homes are old and cannot change their footprint, so they're limited in what they can do. And those that do remodel are subject to a state law that says you'll lose your Medicaid certification if you increase your number of beds. That's a deal breaker, because Medicaid pays for the vast majority of nursing home care.
With those limitations, creating a new Continuing Care Retirement Community in Utah is unlikely, at least for now. CCRCs elsewhere are campuses where seniors can move from independent living to assisted to a nursing home, while maintaining the feel of familiar surroundings.At a time when residents are more frail and nursing homes are trying to look less like hospitals, some Utah administrators feel stymied. "How do we do more in the way of health care and make it look less like health care?" Christus St. Joseph Villa's Galen Ewer wonders.
The people who live in nursing homes are nearly all more ill and frail than in the past. Gerontologists call it "acuity creep."
People survive illnesses that used to kill them, but many of them are left with chronic conditions that require nursing home care. Meanwhile, many of the less ill people who used to make up the bulk of nursing home residents have moved into assisted living facilities. (ALFs, in industry lingo).
They're a step between independence and nursing home care, with someone on staff to help with "activities of daily living," like dressing and managing medication. They tend to be cheaper than nursing homes, although there's a wide range, and high-end ALFs may cost more than somewhat modest nursing homes. But nursing home care is often paid for by government through Medicaid. ALFs are mostly private pay.
Mary Jane Lyons is growing old in an ALF, in a small but bright room where the portrait her mother-in-law painted years ago hangs on the wall, and she can sleep in the bed she brought with her. She has friends a few doors away down a well-lit hall, but she can also choose to shut her door and be alone. And she can come and go as she pleases, something she could not do in a nursing home.
ALFs were unusual 15 years ago but now outnumber nursing homes in Utah 159 to 110. There are 4,000 licensed ALF beds, about half of them in centers with 20 beds or less, especially in rural Utah.
Shop for an ALF in Utah and you'll find entire worlds separating the plush, trendy Sunrise Assisted Living in Holladay with its bistro, and play areas where residents with Alzheimer's can try on bridal wear and J & E in West Jordan, which houses just three residents. ALFs are a logical place for Alzheimer's residents in the early and mid-stages of the disease, when they tend to be physically fit.
ALFs are almost exclusively available to people who can afford it (in Utah they range from about $1,000 to $4,000 a month) or have long-term care insurance that covers it. The exception is a Medicaid program called New Choices, which allows Medicaid-eligible old people to transfer to assisted living after a 90-day qualifying stay in a nursing home.
ALFs are seeing acuity creep, too. Says Sunrise of Holladay administrator George Wright, "Six years ago you wouldn't see a lot of wheelchairs and walkers. Now you do."
Nursing homes complain that some of the people in assisted living are too sick to be there; the ALFs disagree, and it's a debate without resolution. "I don't know anyone nationally who has grappled with it and in Utah we certainly haven't," says Utah Commission on Aging director Maureen Henry.
Acuity creep means ALFs are now home to some of the problems once seen only in nursing homes, including medication errors and people unattended too long, charges Peter Hebertson, outreach director for Salt Lake County Aging Services. Some of the more notorious cases of 2007 exploitation, accidental death, medication mistakes happened in ALFs, he says.
Last year, a woman wandered out of an ALF in the middle of the night and froze to death. She met the requirements for an ALF she could clearly ambulate enough to get out in case of a fire but, argues Hebertson, she didn't have adequate supervision to meet her needs.
Hebertson will never forget an old woman who had been flourishing in assisted living: As she became sicker, he recommended that a nursing home could better manage her care but after the move she apparently got worse care, developed bed sores, deteriorated, and died. "What were you thinking?" the family asked Hebertson. Since then, every time he sees someone who seems too sick or weak to be in assisted living but is loved and well cared for, he wrestles with what to do.
"We have these ethical decisions all day long," he says.
Most people who live in ALFs die before the issue comes up. If they're terminal, they can go on hospice and stay in assisted living until they die, or if they become too sick or immobile they might be given a month to see if health improves. If they don't get better they might be asked to move to a nursing home. If they run out of money, the exit generally isn't negotiable: Residents typically must find a new place to live.
Alec Stephenson, former administrator at Wasatch Valley, says most people in nursing homes should have been admitted a year or two sooner. People wait, he says, because of guilt, lack of education and "masking" by the old people themselves. His own mom lived with him for a decade, putting the Windex in the fridge and leaving the stove on, so he understands denial.People are reluctant to leave assisted living, and ALFs may be reluctant to let them go. "But there are many cases," says Tracy Freeman, acting director of the bureau that licenses facilities, "where people do better when they get to a nursing home."
The trick is to make sure that nursing homes and assisted living facilities are not only safe but appealing to truly bring about "culture change," to recognize that we are deeply affected by the rooms where we spend our final years.
Old eyes have trouble seeing, so the designers of the ALFs run by the Sunrise franchise make sure that the bathroom walls are painted a contrasting color to the toilet, and the dishes aren't the same color as the tablecloths.
Good nursing home design, says Salt Lake architect Pace, includes lots of natural light, which elevates moods and helps stabilize circadian rhythms and therefore improves sleep patterns of the elderly. Good nursing home design, says Pace, who is president of SAGE (the national Society for the Advancement of Gerontological Environments), includes privacy as well as homey gathering spaces, and a connection to the natural world outside.It's so easy, in a nursing home, to lose that connection to the world, to lose track of yourself. Culture change at its best, the experts agree, is about honoring and maintaining who you are.