Most American adults take certain basic freedoms for granted—they can choose when to take a bath, what to eat for dinner, and whether to stay up late to finish a good book. But in many nursing homes, residents are deprived of the right to make such decisions for themselves.
Over the last decade, long-term care researchers and providers have been working to change the "culture" of nursing homes from hospital-like institutions with rigid routines to homes that accommodate residents' preferences and interests as well as their physical needs. It's a difficult balancing act: facilities must acknowledge residents' medical frailty and dependency—and provide the highest standard of care for all—while preserving their independence and enabling them to age the way they have lived.
"Because nursing homes are places to live, in addition to clinical settings, quality of life is salient," says Rosalie Kane, Ph.D., a professor of health policy and management at the University of Minnesota. "Health care needs might be met at the expense of drastically changing someone's daily life and routines for the worse. The challenge is to pay attention to quality of life as an outcome in itself, and see how health care may be related to quality of life."
History of Reform
Today, frail elders can choose from a range of long-term care services, from minimal assistance in the community to round-the-clock, comprehensive care. Nursing homes remain an important target for quality improvement, with more than 1.5 million residents in 15,000 facilities nationwide.
In 1987, Congress tightened nursing home regulations in response to evidence of substandard care, neglect, and abuse. According to a 2001 report from the Institute of Medicine, the quality of care in nursing homes has improved since then, particularly in areas targeted by the regulations such as the inappropriate use of physical restraints. The proportion of nursing homes cited for serious deficiencies by state inspectors declined from 29 percent during 1999–2000 to 15 percent during 2003–2005. Yet pressure ulcers, pain, malnutrition, and other serious problems persist in many facilities.
Notably, the federal legislation also established statutory rights for nursing home residents, including the right to privacy, dignity, and self-determination.
Facilities certified by Medicare or Medicaid—which include the majority of nursing homes—are required to perform a comprehensive assessment of every individual, using an instrument known as the Minimum Data Set (MDS), upon admission and periodically thereafter. Quality indicators derived from MDS data are posted on the Nursing Home Compare Web site.
But the MDS does not provide information about residents' quality of life. Under a grant from the Centers for Medicare and Medicaid Services (CMS), University of Minnesota's Kane developed and tested a quality-of-life measurement tool among nearly 2,000 nursing home residents in five states. Quality of life has been shown to be related to factors such as residents' health, social network, and disposition, and Kane's research found that it is also related to the policies and environments of nursing homes, and thus can be measured and improved.
Although residents are the best source of information about their experiences, surveying them can be challenging, given that many suffer from dementia. However, research led by Gwen Uman, R.N., Ph.D., a partner at the research and consulting firm Vital Research, proved that even residents who are cognitively impaired can be reliable reporters if questions are carefully designed and delivered.
Ohio was the first state to survey both nursing home residents and family members about their satisfaction with their environment and care; the first family survey was fielded in 2001 and the first resident survey was fielded in 2002. Farida Ejaz, Ph.D., a senior research scientist at the Benjamin Rose Institute in Cleveland, and Jane Karnes Straker, Ph.D., a senior researcher at Miami University, integrated 40,000 survey responses with other sources of information on nursing home quality in Ohio to draw connections between particular nursing home practices and resident and family satisfaction.
"We found some interesting trends," says Ejaz. "For example, higher spending on fringe benefits for direct care staff was linked with higher resident satisfaction. Perhaps better benefits make staff happier, which in turn could affect residents' satisfaction. Spending more on temporary workers—a fairly common practice—was linked with lower resident satisfaction; this could indicate that temporary staff don't have enough time to get to know residents."
It's clear that staff and resident experiences are an important aspect of nursing home quality. Ultimately, however, the research revealed that nursing home quality is multifaceted; facilities that perform well on one type of care may lag behind in other areas.
"We wanted to come up with the best nursing homes in Ohio, but there was a great deal of variation on different indicators," says Straker. "There are places to go if I want to learn about resident-centeredness, or clinical outcomes, but it's hard to find models of best practices across the board."
Efforts to change the culture of nursing homes began with the resident-centered approaches developed by trailblazers such as the Eden Alternative, an early advocate for transforming nursing homes, and the Pioneer Network, an organization that provides information and resources on resident-centered care. Their innovative concepts are now being put into practice by the nonprofit collaborative Wellspring Innovative Solutions for Integrated Health Care, the Green House Project (see Case Study), and the Meadowlark Hills retirement community in Manhattan, Kan., as well as homes in the for-profit Golden Gate National Senior Care group. While these facilities use varying strategies to achieve change, they work toward several common goals that include:
- enabling residents to direct their care and activities;
- creating living environments that are more like homes than institutions;
- fostering close relationships between residents, family members, staff, and communities;
- empowering staff to respond to residents' needs and desires;
- promoting collaborative decision making; and
- practicing continuous quality improvement.
In 2005, CMS made quality improvement organizations (QIOs) responsible for providing technical assistance to nursing homes to help them improve their performance and for promoting resident-centered care—giving a boost to culture change efforts across the country. Facilities working with QIOs set clinical goals, perform staff and resident surveys, and track rates of turnover among certified nursing assistants. Yet, many say that greater support is required to take nursing home performance to the next level.
"We have a lot of homes in the early stages, but we don't have enough that have made transformational change—not only putting up pretty wallpaper, but really changing systems, restoring control to residents and staff," says Rose Marie Fagan, executive director of the Pioneer Network. "Homes don't have enough time, money, or capacity. I'd love to see CMS set up an exemplar nursing home in every state. Give them the resources they need, but let them start with their own culture and try to go through a rigorous process of change."
Efforts to change the culture of nursing homes will only succeed if supported by financial and regulatory systems. Currently, nursing home payments don't take into account efforts to enhance residents' quality of life—and instead may actually increase as residents become more debilitated. Ohio's Medicaid program is taking a modest step toward performance-based pay. Beginning this year, a small percentage of nursing home reimbursement will be tied to nine quality measures, including reports of resident and family satisfaction.
Nursing homes must comply with both state and federal regulations. But David Gifford, M.D., M.P.H., director of Rhode Island's Department of Health, says these regulations should not stand in the way of nursing home reforms. If regulations are carefully applied and interpreted, he argues, they can actually promote resident-centered care.
"It's not about changing the regulations, it's making sure they are appropriately interpreted," Gifford explains. "There's a federal regulation that requires people to be offered food every 14 hours. That often gets misinterpreted as meaning people have to have a meal every 14 hours." Surveyors could help to avoid such confusion by changing the way they ask questions, Gifford says. "For example, if surveyors ask: 'When do you administer medications?,' the question implies there should be a set time to do so. If surveyors instead asked, 'What is your procedure for administering medications?,' nursing homes might be encouraged to find solutions that work best for their residents."
Perhaps the greatest push for reform will come from consumers themselves, particularly the baby boomers who will retire in great numbers in the coming decades. The aging of the U.S. population will make long-term care an issue of personal interest to more and more Americans. In a market where elders have choices for long-term care, resident-centered care could become an important selling point for nursing homes.
"Someday we're going to look back at today's nursing homes, the way we now look at chemical and physical restraints, and be amazed," says Fagan. "Nursing homes as we know them are not working. If they can't change, they're not going to be here."