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SECTION: CAPITOL HILL HEARING TESTIMONY LENGTH: 1726 words Statement of Dr. Diana White Senior Research Associate, Institute on Aging Portland State University Committee on Senate Special Aging July 23, 2008 Good morning Senator Casey, Ranking Member Smith, and members of the Committee; I very much appreciate the opportunity to participate in this hearing on person-centered care. I have been participating in efforts to create more person-centered long-term care practices since 2001. For most of that time I worked for the Oregon Health & Science University’s Hartford Center of Geriatric Nursing Excellence and I am continuing that work at Portland State University. The Hartford Center partnered with the State’s Unit on Aging, Seniors & People with Disabilities, and 10 long- term care facilities (nursing homes, assisted living, residential care) to develop person-centered care practices. In 2003, the partnership expanded when Oregon received a Better Jobs Better Care Demonstration grant from the Robert Wood Johnson Foundation and Atlantic Philanthropies. Our partners included 8 provider organizations (nursing homes, home care, assisted living, residential care), the long-term care trade associations (Oregon Health Care Association, and the Oregon Alliance of Senior and Health Services), the Oregon State Board of Nursing, and many others. Through BJBC, we worked to improve living and working environments for direct care workers and residents through person- centered care practices. I was the local evaluator of that project. One of our first challenges was to clarify and define what we meant by “person-centered care.” We went through a rigorous and systematic process to create a definition and then a measurement tool we could use in our evaluation. As our own thinking and experience evolved, we began to use the term “person-directed” rather than “person-centered” because we wanted to emphasize that residents, even those with severe cognitive and physical impairments, need to be in charge of their care. Person-Directed Care is a way of thinking about care that honors and values the person receiving support. Well-being and quality of life are what the person receiving services says they are. Supporting people the way they want to be supported is more important than completing a list of care tasks. The elements comprising person- directed care are: –personhood, knowing the person, choice and autonomy, comfort, and relationships. Definitions of each of these elements are attached to this statement. I should note that developing consensus on the definition of person-centered and person- directed care is an ongoing process in the field. To implement these practices, organizational systems must be in place. For all staff, this means: –adequate education and training –ability to be an advocate for residents –ability to make decisions about care with residents –having the time to work with residents –teamwork –skilled supervisors –adequate staffing I would like to provide some examples from two nursing homes who participated in the BJBC project as well as the earlier project. At Mennonite Village, a nursing home in Albany, Oregon, residents go to a dining room of their choice at any time of day and order from a menu, which is different every day. If they don’t see something they like, they know they can request a sandwich or eggs, or some other favorite food. Certified Nursing Assistants, or CNAs, have food handler permits, so dining hours are extended to all hours of the day or night. If someone wants a hamburger at 1:00 AM, they can get it. Food waste has almost been eliminated, residents are no longer parked dozing in the hallways waiting for meals, the dining areas are quieter and more conducive to conversation, resident and family satisfaction with food has increased, and direct care staff point to this program with pride. At Rogue Valley Manor in Medford, Oregon, a nursing assistant meets with each new resident to learn how and when they like to get clean. If the person is used to showers at night, they continue to get showers at night. If they prefer a bath in the morning, they can get that, too. If bathing or showering is painful or frightening, a towel bath might be a comforting solution. The CNA also learns what kinds of soaps, shampoos, or lotions are preferred, whether hair should be washed during the bath or shower or at a different time. Sometimes a resident with dementia can’t describe preferences or routines. The CNAs get what information they can from the resident, they ask family members, they talk to each other, and, most importantly, they pay a lot of attention to the behaviors of the resident to figure out the rest. During this process, they also identify what kind of music or conversation would be pleasurable to the person to help put them at ease. The shower or bathing schedule is then built around resident preferences. Staff have the flexibility to “go with the flow” if a resident does not feel like following their routine on a particular day or requests a different routine. This person- directed bathing practice has resulted in reduced stress and increased pleasure for staff and residents. At both these and at many other facilities throughout Oregon, person-centered care practices have not stopped with dining or bathing programs described here. Each led to new activities as staff and residents experienced successes and saw different areas that needed a person-centered approach. For example, with flexible dining and bathing schedules, at both of these facilities, residents get up and go to bed when they want, some residents go to breakfast in their pajamas if that was their routine in the past. Some facilities have started therapeutic gardening programs, and almost all are experimenting with ways to build team and leadership among direct care staff. Many facilities have experimented successfully with worker-directed care teams. These teams make their own assignments to residents, mentor new staff, and do their own scheduling. Building renovations are occurring, beginning with eliminating nursing stations to create living room areas. All of the organizations most engaged in these activities report more satisfied and vibrant elders, and more satisfied and empowered staff. We have learned that the ability of organizations to develop and sustain person-directed care practices is related to four areas: first, an organizational culture compatible with a personcentered care philosophy is necessary. We found that those who were most successful in making changes were open to doing things differently and considered this work to be core to their mission rather than a project to be completed. Second, top management must be engaged and committed, but able to delegate leadership to others. Support from corporate leaders is critical. Third, all staff must be a part of the change and committed to making things work. They must have a real voice and meet regularly to plan and evaluate their activities. Many organizations need help in learning how to lead effective meetings and hold one another accountable for following through on team decisions. Finally, successful organizations create person-directed care practices that make sense for their settings, the residents or clients receiving support, and for the staff who work there. As a result, details vary, but new practices are more likely to become integrated into operation of the organization. A DVD on transforming dining practices recently produced in Oregon provides an example. Four facilities radically changed dining practices, but all did it differently, including family style, buffet, and 2 different restaurant-style approaches. Although exciting and rewarding, the process of culture change is not easy, even when organizations are committed to making these changes. Long-term care has many challenges, most associated with limited resources of time, staff, and funding. We would like more investment in the organizations that are working toward person- directed care practice changes. An example is a partnership between Oregon’s Seniors & People with Disabilities and 12 nursing homes using civil penalties funds. We would like a formal certification program that recognizes those organizations that meet specific benchmarks reflecting person-directed care practices. The magnet program managed by the American Nurses Credentialing Center and North Carolina’s NOVA program provide models. The ability to implement and grow persondirected care practices depends on a strong and stable workforce. I echo the recommendations provided by Robyn Stone, John Rowe, and others to this committee last April on “Impending Shortages of Health Professionals.” Education of the workforce needs to emphasize persondirected care principles. The trade associations in Oregon prominently feature culture change at their annual conventions. The ECLEPs project educating nursing students, and Better Jobs Better Care and the Jobs to Careers initiatives for direct care workers are other examples as is development of universal workers that allows flexibility in staffing. Most regulations governing long-term care do not contradict person-directed care practices; however, review mechanisms are needed to assure that they support both safety and person-centered care practices. In all of these efforts, we need to continue to clarify what we mean by person-centered or person- directed care and continue to develop ways to define, measure, and sustain these practices. More research can inform us about best practices for implementing culture change activities and determine the extent to which they help the people they are meant to serve. We need to learn directly from residents how well these changes are meeting their own needs, values, and preferences, and the extent to which they feel honored, respected, and part of their communities. Person-directed care practices continue to evolve in Oregon. I will leave you with a Philosophy Statement that has been adopted by key stakeholders, including government and provider organizations, and information about several ongoing person- directed care initiatives. All involve statewide coalitions composed of multiple partners. Again, thank you for this opportunity to share our experiences and our hopes to transform long-term care. COMMITTEE: SENATE SPECIAL AGING TESTIMONY-BY: DR. DIANA WHITE, SENIOR RESEARCH ASSOCIATE AFFILIATION: PORTLAND STATE UNIVERSITY Copyright 2008 Congressional Quarterly, Inc. All Rights Reserved.

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Better Jobs Better Care, BJBC