Tomorrow’s resident care will take more than “quality of life” lip service

The largest movements usually start on a very small scale. A few people see a better way of doing something, or begin to question the basic assumptions we all take for granted. They begin to experiment, to try new approaches, and then take their message to others. A few more will hear the call, and join the movement, and it begins to gain momentum. Eventually, if it is successful, it will cause a sea-change in thinking, so that we now wonder how we ever accepted the old ways of thinking and doing. A classic example: restraint reduction (see “The Restraint Reduction Movement,” p.00).

It’s happening again—and there’s nothing we can do to stop it. It will radically affect how nursing homes, and to some extent assisted living facilities, operate. It goes by many names—resident centered care, culture change, Eden alternative, re-engineering (to borrow a business term), or resident-directed care. While each of these labels may have a slightly different definition (and these definitions may vary from person to person), the movement reflects a fundamentally different way of structuring care settings.

Traditionally, nursing homes have been organized around the efficient provision of physical care to frail and impaired individuals. In the future, the focus won’t be on the provision of care services (which is an “input” to the system), but on the quality of life of the residents (which is the ultimate “output” or outcome goal).

“Quality of life” is a thorny concept because it is so hard to define. But let’s assume for the moment that quality of life relates to choice and control, positive and meaningful interactions, and quality medical care. Regulations and the survey process have already started moving in this direction (for once leading the pack instead of being behind the curve), and so many facilities that receive good surveys think they are already doing this. In reality, however, they are barely scratching the surface. They are paying lip service to the concepts, changing their marketing language, describing former “units” now as “households” or “neighborhoods”, but without having made any structural or operational changes. Or they give the physical environment a face lift—putting an extra set of fire doors between hallways to create “households,” using updated colors and patterns, adding a few chintz throw pillows and carpeting—and assume this is sufficient guarantee of quality of life.

It isn’t.

What is? Different individuals might identify various goals, but the following list is generally accepted as being part of this movement:

1) Respecting the individualized needs and desires of each person (yes, even people with dementia!)

While residents have had individualized care plans for many years, systems of care are often set up to maximize efficiency, not to address the unique needs and desires of each resident. Take, for example, residents’ rising times and bathing schedules.

Traditionally, all meals in nursing homes have been offered at set times, and all residents have been expected to eat their meals at those times. Now, however, many facilities are beginning to recognize that they can allow residents more flexibility in when they wake up. If offered a late night snack, a continental breakfast for the early and late risers, and a hot meal at a specified time, residents can choose whether to get up for the hot meal, or sleep in and eat a Danish or cereal. Initially, staff were worried that this would mean extra work for them. In reality, staff at most facilities find it easier not to have to get everyone up for breakfast at a specified time.

In terms of bathing, in most facilities every resident is bathed/showered a set number of times per week (once or twice). If the resident is lucky, it is his/her preference that determines whether it is a bath or a shower, and possibly even determines what time the bath/shower is given. But how many facilities bother to ask the residents’ preference related to frequency of bathing or showering—and follow through with those preferences? I can hear staff saying: “But if you gave all residents complete choice, some would say they never want to have another bath or shower!” That may be true. You may need to set some limits, such as getting cleaned (notice I didn’t say have a bath or shower) at least once every other week. But by negotiating with the residents, showing you are trying to individualize the care to their needs, you are likely to find them responding positively and accepting when compromises are necessary.

Embedded in this goal is the concept that people, including frail and impaired residents of nursing homes, have the right to control decisions that are made about their lives. While this may seem self-evident, it is often glossed over and not respected in fundamental ways. The number of rules residents are expected to follow without being given much of a choice is substantial. Sometimes it will be difficult or costly to affect changes to give residents the level of autonomy they deserve. At other times, it might be less a matter of money than of working with staff to change the way they do things.

When all bedrooms are shared (I prefer not to use the term “semi-private,” as I find nothing even partially private about sharing a room with someone separated by only a piece of fabric), residents have little opportunity to control their space or ever have privacy. This is one reason why so many new construction projects have virtually all private rooms. It gives people the choice as to whether to be alone in their rooms or with others in the shared areas.

2) Honoring the life patterns and accomplishments of every person within the setting

This is some overlap between this goal and the previous one, particularly as it relates to the resident’s life pattern of activities. But it goes beyond following the established routines of each resident. Virtually everyone in a nursing home—staff as well as residents—has done things he or she is proud of. This might be work-related, or a volunteer activity, or family event, or crafts and hobbies. Singing in the church choir, running a scout troop, traveling to interesting places—all these are worthy of celebrating in one way or another. These talents and events can be the centerpiece of activities programs, featured in “resident of the month” profiles, written up in the facility newsletter, or highlighted in myriad other ways. The important point is to spend the time learning about what each person is proud of and finding ways to incorporate these into the life of the facility.

This philosophy should incorporate staff accomplishments as well. Beyond their working life in the facility, staff lead active lives that are full of interesting events and skills. Encouraging staff and residents to start a barber shop quartet or do joint activities with local school children opens the door for both groups to see the others as full and exciting individuals—not just “the resident” or just “the nurse.”

3) Supporting opportunities for continued growth

This new philosophy takes a life-long perspective of development, and does not assume that age and/or physical frailty means that an individual is no longer capable of or desires new learning. Whether it’s learning how to use a computer to send e-mail to family and grandchildren, or developing a new hobby, or reading, or listening to literature and poetry on tape, all these provide opportunities for individuals to continue to grow and develop. Obviously, these learning activities need to be tailored to the strengths and abilities of the residents. Although those with more significant dementia might have a harder time grasping some new skills, even people who are quite cognitively impaired can appreciate new opportunities when they are presented in ways that are non-threatening and non-performance driven.

There are many excellent examples of residents in mid-stage dementia participating in writing poetry or making seasonal books to celebrate the coming of spring, for example. Or, consider opportunities for joint collaboration on projects with local elementary school children.

4) Enabling continued productive contributions to their community

In addition to celebrating their past and sometimes current accomplishments, people of all ages often express a desire to contribute to their community in meaningful ways. Facilities that are committed to this principle find ways for each person to contribute. Some facilities have the more cognitively intact or mildly confused residents run programs and activities for the residents who are less cognitively intact. Others have found “chores” that residents like to do as activities, such as sweeping the floor after a meal or raking the leaves. A few facilities create opportunities for residents to talk about their past profession or other experiences, either to the rest of the residents or to outside groups.

Residents can serve as reading tutors, or call latchkey kids when they’re home alone, or even make and sell items (and either donate the proceeds to a charity to keep them). Many residents are capable of volunteering for non-profit organizations that need help in many ways. It just takes the willingness to look for the right opportunities and setting the stage to enable the residents to continue to contribute.

5) Encouraging meaningful connections with family and the community

A number of research projects have demonstrated the positive impact on residents of visits by family and friends, including increased smiling and alertness and decreased agitation.2-4 Yet helping families feel comfortable visiting, so they will visit longer and more often, is challenging. Facilities that recognize the value of meaningful connections find ways to support visits where the families do more than sit in the residents’ bedrooms.

Inviting families to a variety of joint activities with other residents and families; offering family members opportunities to run volunteer activities; and creating a variety of spaces in which to visit, where there are things to do, see, touch, smell, and watch, are but a few of the ideas that help support relationships.

Having residents start a pen-pal program with a school class can be the beginning of new friendships. If there are residents who can no longer write, see if others will serve as scribes and write for them.

6)Fostering fun

How many times have you walked through the halls of a nursing home and heard laughter?

Many readers will be familiar with the principles of the Eden Alternative, which is but one example of this new way of structuring nursing homes. One of the foundations of the Eden philosophy is that the spontaneity of pets and children enlivens and enriches a setting in a very natural, unprogrammed way. A number of studies have demonstrated the positive, measurable clinical health benefits of laughter, particularly for people with heart disease (e.g., see “Laughter” at www.WebMD for more information). Facilities that are restructuring their care settings sometimes incorporate “laugh-props” to give both residents and staff more occasions to laugh.

The suggestions above may seem Pollyannaish. I can hear staff saying: “Our residents are too far gone;” “We tried that before, and it didn’t work;” “The residents don’t want to do that;” “There isn’t enough time;” “There isn’t enough money;” or “I won’t get everything done that needs to be done.” These reflect the anxiety that change brings. The same things were said about restraint reduction programs—yet see how far we’ve come in that arena.

While the challenges of restructuring the entire care setting are much greater than tackling a single issue, there are also greater opportunities. There’s no one right way to go about this change process. You can start with a single care practice—for example, think about ways to restructure your bathing care practices. Determine, for each resident, how often getting clean is medically or socially necessary. This helps you set some parameters. Then go to each resident, or the family if appropriate, and ask about his or her preferences. Would the resident prefer a bath, a shower or a sponge/washcloth bath? What time and how often would he or she prefer it?

Involve the direct care staff in this process. Get their input early. They may be able to give more insight into the preferences of cognitively impaired individuals than anyone else.

Then look at your bathing room(s). What do they say to the residents about what this experience is going to be like? If these rooms feature cold, antiseptic white walls with institutional equipment visible, a positive experience is not in the offing. What occupies most of the field of vision of a person in the tub? It is the chrome control panel for the tub? Or is it some artwork, or a nicely decorated accessory shelf, with scented soaps and plush towels? What would make the room more attractive for you to take a bath in?

Which gets to the final point. Restructuring includes significant rethinking of staffing roles and relationships. Most facilities that embrace this concept are moving away from department-based staff to a team approach, where the direct care staff have a significantly more central role in directing that care. They are the ones who see and talk with the residents every day, and who are in the best position to know their preferences. Consistent assignments of staff are a first step in this new direction.

But it goes much deeper than that. Although it is an overused and under-defined term, “empowering” the nursing assistants to be major players on the care team is critical to the fundamental shift this movement is all about. This means that the supervisory nursing staff needs to learn to let go of some of its “control” over the setting. Staff education needs to be different as well: to focus on the psychological and emotional needs of residents, including their many strengths, not just their failings and weaknesses.

Regardless of whether you call it culture change, or restructuring, or re-engineering, or resident-directed care, or resident-centered care, this movement is all about changing the way nursing homes operate. We need to move out of the 1950’s hospital-based model, just as hospitals have reinvented themselves over the past decade. Focusing on the positive aspects of personhood and recognizing residual strengths and abilities to engage in meaningful relationships that have purpose; giving as well as receiving–these are the foundations of future nursing home care.
Are you prepared?

Margaret P. Calkins, PhD, is President of I.D.E.A.S. Inc, and Chair of the Board of the IDEAS Institute. Both organizations are dedicated to creating successful care settings for frail and impaired individuals. She can be reached at mcalkins@ideasinstitute.org or macalkins@ideasconsultinginc.com.

References
1. Johnson D. Restraint free care: A look back. Nursing Homes/Long-term Care Management 1995;44(9):26-30.
2. Hendy H. 1987. Effects of pet and/or people visits on nursing home residents. International Journal of Aging and Human Development 1987;25(4):279-291.
3. Martin-Cook K, Haynan L, Chafetz P, Weiner M. 2001. Impact of family visits on agitation in residents with dementia. American Journal of Alzheimer’s Disease and Other Dementias 2001;16(3):163-166
4. Noelker L, Poulshock S. 1984. Intimacy: Factors affecting its development among members of a home for the aged. International Journal of Aging and Human Development 1984;19:177-190.

The Restraint Reduction Movement
We used to think it was OK—even a sign of good care—to tie people to their wheelchairs. After all, if we let them walk they might elope and get lost, hurt or even die before we could find them. Or they might fall. And because they would try to get out of their chairs, we often put these chairs, with the brakes on, across from the nursing station so staff could easily monitor them. We kept the restraints on, long after these residents were no longer independently mobile—and after they had stopped trying to get out of their chairs. This practice was widespread throughout the industry and condoned by the regulators. Indeed, in 1989, restraint usage was the accepted practice for over 50% of all nursing home residents.

Eventually, a few nurses began to question this practice. Even more, they began to develop alternative ways of caring for individuals that gave them their freedom. It was not an easy road to travel. For every success there were “failures.” But, convinced of the legitimacy and value of what they were doing, they persevered. They documented their progress, spoke at conferences and wrote articles for both academic and trade journals. Soon, other nurses heard the message: “Let my people (the residents) go!”. And more facilities began to test the waters and revise care plans and practices for at least some of their residents. As the movement gained momentum, it caught the attention of regulators, and the shift was eventually codified in the nursing home reform act now called OBRA ’87.

A few facilities had to be dragged, kicking and screaming (metaphorically speaking), into this “new age” of thinking—and there are still some caregivers who feel restraints reflect good care practices. But most of us in the long-term care field now firmly believe in the underlying principles of this “new” approach that once seemed so radical.

This article appeared in the June 2002 issue of Nursing Homes/Long-Term Care Management magazine.