Receiving care shouldn’t come at the cost of an individual’s dignity, sense of self, or autonomy—especially when the care setting is the person’s home, as in long-term care. That’s why nursing home residents, families, and others have for decades advocated for person-centered care.
Person-centered care is being “responsive to individuals and their goals, values, and preferences,” according to the U.S. Centers for Medicare and Medicaid Services (CMS). It requires “a system that supports good provider-patient communication and empowers individuals receiving care and providers to make effective care plans together.”
In nursing homes, person-centered care is widely seen as key to quality of care and quality of life. Federal and state regulations require nursing homes to ask residents about their preferences, so that care can be aligned with residents’ needs and wishes.
Yet, even with this information and good intentions, nursing homes often struggle to provide person-centered care.
“Studies demonstrate that not only person-centered care but also honoring preferences are far from realized,” says Laura Block, BS, BSN, RN, a doctoral student at the University of Wisconsin–Madison School of Nursing whose research focuses on long-term care and cognitive aging. “There’s concerning evidence that person-centered care as currently delivered does not consistently improve a range of resident outcomes.”
For older people to realize the benefits of person-centered care, nursing homes need to understand how their policies and practices could facilitate what CMS calls “good provider-patient communication,” as well as the collaborative development of “effective care plans.”
Some of the nursing home policies and practices that support person-centered care are well understood. These include sufficient staffing for the number of residents and staff schedules that consistently pair residents with the same caregivers. But researchers working to improve care delivery have overlooked key voices, argues Block.
“The missing piece in the literature so far is resident perspectives,” she says. “We don’t know how residents themselves are contributing to an approach centered on understanding and meeting their preferences. Very few studies have examined this.”
“Resident voices should be involved in the problem solving,” says Block. “Resident perspectives could inform interventions to better support person-centered care or to explain why we’re not seeing expected improvements from person-centered care.”
As part of a larger study with Tonya Roberts, PhD, RN, FGSA, UW–Madison School of Nursing Associate Professor and Co-Director of the Center for Aging Research and Education, Block analyzed interviews with eleven nursing home residents. The strategies residents described using to express or meet their preferences fall into three broad categories: advocating, collaborating, and observing.
Advocating includes more active strategies, such as repeating or intensifying requests, bringing concerns to resident councils, and creating opportunities to meet preferences. For example, one resident worked with dietary staff to add menu options that several residents preferred.
Collaborating includes cooperative approaches, such as working with staff on the timing of cares and asking family to bring preferred food or supplies. Collaborating can involve elements of compromise. One resident explained, “I am scheduled for Thursday evening and also on Sunday evening. I get two baths a week. … If there is something scheduled in the evenings then I will make a request … to shower in the afternoon. So I can attend the event in the evening.”
Observing includes more passive strategies, like being flexible, not reacting when preferences aren’t met, and allowing staff to set schedules. When asked about not being able to choose the type of bath they received, one resident jokingly replied, “You get wet either one you choose.”
Individuals tend to pursue either more active or more passive strategies, choosing their approach based on the specific situation and its importance to them. When using collaborating or observing strategies, residents often reframe how they think about the situation, recognizing staff schedules and busyness.
“Many residents are acutely aware of what is going on in the environment,” says Block. “They will use compromising or collaborating strategies in acknowledging that staff are very busy. … Several participants described deep care and gratitude for staff and want to make accommodations.”
How nursing home residents are asked about their preferences doesn’t reflect this complexity, notes Block.
“Nursing home assessments focus on the type of preferences, but they don’t account for this dynamic prioritization or factors that might be influencing how preferences are expressed,” she says. “For example, one resident felt that his haircut and his pain management were non-negotiables. Our current preference assessments won’t help us know that.”
Redesigning nursing home assessments with residents’ input could identify each person’s non-negotiables, as well as situations where residents might prefer to collaborate or compromise. This could help busy staff focus on what matters most to residents, hopefully making care more person-centered, improving outcomes, and strengthening communities.
–Diane Farsetta