PIONEERING CHANGE An Illustrative Guide to Changing the Culture of Care in Nursing Homes with examples from the PEAK Initiative prepared by Lyn Norris-Baker, Ph.D. Gayle Doll, M.A. Linda Gray, M. S. Joan Kahl, L.A.C.H.A. with contributions by Migette Kaup, M. Arch. and other members of PEAK-ED: The PEAK Education Initiative published by Galichia Center on Aging, Kansas State University Kansas Department on Aging PEAK-ED web site: http://www.ksu.edu/peak FROM THE SECRETARY ON AGING At the Kansas Department on Aging we created the PEAK (Promoting Excellent Alternatives in Kansas) Nursing Homes program to encourage continued change and to recognize the many ways in which Kansas nursing homes are changing the ways they provide care to our seniors. Viewing care delivery through the eyes of the residents who receive it allows providers to think differently about how we provide long-term residential care, and to create new approaches. The diversity of Kansas and our many nursing homes means there are a wide variety of different strategies possible. The goal of every change, however, is always to improve the quality of the lives of the people who live and work in our nursing homes. I thank the following who are helping to promote PEAK: Kansas State University, state agencies/offices, nursing homes, their associations, consumer associations, award sponsors, the media, elected state and local officials, and the residents of the many homes visited. This booklet is designed in part to be an inspiration for nursing home personnel whether they are already making changes or considering the possibilities. We encourage you to take advantage of these resources. Sincerely, Pamela Johnson-Betts Secretary on Aging Copyright (c) 2003 Kansas State University and its licensors. All rights reserved. Notice of nondiscrimination Kansas State University is committed to nondiscrimination on the basis of race, sex, national origin, disability, religion, age, sexual orientation, or other nonmerit reasons, in admissions, educational programs or activities, and employment (including employment of disabled veterans and veterans of theVietnam era), as required by applicable laws and regulations. Responsibility for coordination of compliance efforts and receipt of inquiries, including those concerning Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act, has been delegated to Clyde Howard, Director of Affirmative Action, Kansas State University, 214 Anderson Hall, Manhattan, KS 66506-0124, 785-532-6220. THE GALICHIA CENTER ON AGING, KANSAS STATE UNIVERSITY Through teaching, research, outreach, and service, the Galichia Center on Aging at Kansas State University strives to provide a focus on aging issues that orients the talents of the faculty and resources of the University towards identifying and addressing the challenges and opportunities of an aging society. The Center coordinates and develops educational and training programs in aging, conducts gerontological research, and engages in outreach activities to serve older Kansans and those who provide services to them. The Galichia Center on Aging has the responsibility for working with the long-term care profession, advocates, and state government to develop the educational resources for long-term care organizations as part of the Promoting Excellent Alternatives in Kansas (PEAK) initiative. ACKNOWLEDGMENTS This booklet was supported by the Kansas Department on Aging (KDOA) and the Kansas Department of Social and Rehabilitation Services through a Title XIX contract and through matching funds provided through Kansas State University. Additional matching funds were provided through the Kansas Association of Homes and Services for the Aging, the Kansas Health Care Association, and the personal time volunteered by the following long-term care professionals: Steve Shields, Linda Bump, Monte Coffman, Jim Klausman, Carla Lehman, Sharon McCabe, Dana Rice, Evelyn Walters, and Rodney Whittington, Jr. This booklet is one step of the educational component of the PEAK initiative. This overview of new approaches to care in Kansas owes much to the work of many professionals in the fields of aging and long-term care. Over the next year, additional educational resources focusing in depth on specific topics will become available through PEAK-ED. The examples cited in the booklet reflect site visits to organizations who participated in KDOA's PEAK recognition program in 2002, and we know that these organizations, as well as many others in Kansas, have continued to implement changes since our site visits were completed. The authors wish to express their appreciation to all who made this project possible. In particular, the authors wish to thank the many individuals who contributed detailed information about their programs, organizations, and new initiatives, and welcomed the project staff for site visits. These individuals and their organizations are identified in the 'Contact Information for Organizations Cited' section at the end of the booklet. The authors also are deeply grateful to the many individuals who contributed to and reviewed the content of this booklet and other aspects of the educational initiative and the organizations they represent. The names of these advisory group members and faculty consultants are listed on the following page. In addition, the authors express their thanks to Pamela Evans and Emi Kiyota of the Galichia Center on Aging, who provided administrative and technical support for the project, and to Franklin Baker for volunteering his editorial skills. Kansas State University Project Staff Lyn Norris-Baker, Ph.D. Principal Investigator Gayle Doll, M.A. Project Coordinator Linda Gray, M.S. Research Associate Joan Kahl, L.A.C.H.A. Extension Assistant Pam Evans Administrative Officer Emi Kiyota, M. Arch. Web Master Faculty Consultants Sally Bailey, M.F.A., M.S.W. Speech Communications, Theater, & Dance Paul Estabrooks, Ph.D. Kinesiology & Office of Community Health Mary Higgins, Ph.D., RD, LD, CDE. Human Nutrition & Nutrition Specialist, K-State Research and Extension Migette Kaup, M. Arch. Apparel, Textiles, & Interior Design Valentina Remig, Ph.D., RD, FADA. Human Nutrition Rick J. Scheidt, Ph.D. School of Family Studies & Human Services Susanne Siepl-Coates, M. Arch. Architecture Candice Shoemaker, Ph.D. Horticulture, Forestry, & Recreation Resources PEAK Educational Development Advisory Committee Deanne Bacco Kansas Advocates for Better Care Linda Bump Meadowlark Hills Retirement Community Manhattan Monte Coffman Windsor Place, Coffeyville Phyllis Kelly Kansas Adult Care Executives Jim Klausman Midwest Health Services, Topeka Carla Lehman The Cedars, McPherson Patricia Maben Kansas Dept. of Health & Environment Sharon McCabe Kansas Masonic Home, Wichita Linda Mowbray Kansas Health Care Association Robert Rhodd Regional Office of the State Long-Term Care Ombudsman Dana Rice Minneapolis Good Samaritan Center Loretta Seidl Kansas Association of Homes & Services for the Aging Steve Shields Meadowlark Hills Retirement Community Manhattan Evelyn Walters Cornerstone Village, Pittsburg Rodney Whittington, Jr. Wheatridge Park Care Center, Liberal KDOA Representatives Elaine Schwartz Dave Halferty Bill McDaniel Patsy Samson TABLE OF CONTENTS 'Here Be Dragons' 6 What is 'Culture Change'? 8 Models of Care 12 Objectives of Change 15 Potential Benefits 16 Impacts on Resident Well-being 16 Impacts on Staff Retention 17 Return Locus of Control to Residents 18 Assist Residents in Determining Their Own Daily Schedules 20 Restore Choices About Eating 22 Provide Options for Keeping Clean 26 Support Continence for as Long as Possible 27 Promote All Remaining Capacities for Self-Care and Mobility 28 Promote Quality End-of-Life Care 30 Enhance Front Line Staff's Capacity to be Responsive 32 Provide Consistent Staffing 34 Develop Self-Managed Work Teams 36 Eliminate Middle Layers of Management 40 Implement Cross Training for Staff 42 Involve Nursing Assistants in Care Planning 44 Enable Nursing Assistants to Handle Scheduling 45 Modify Hiring and Retention Practices 46 Develop Pro-Active Relationships with Surveyors 48 Establishing a Home 50 Promote a Sense of Community 52 Include Family Members in Decision-Making 54 Re-Design Institutional Structures 56 Create a Holistic Environment 64 Enhance Community Involvement 68 Strengthen Formalized Volunteer Programs 70 Provide Intergenerational Programs 72 Provide Opportunities to Participate in Community Activities 74 'Taking on the Dragons' 76 Leading the Charge 76 Don't Make Regulations into Dragons 78 Know When You've Been Successful 80 Where to Start 82 Contact Information for Organizations Cited 84 Resources 87 References 99 KDOA Recognition Program 106 Here Be Dragons.... Long ago, in the days before the 'earth-is-round' discovery was made, map makers would pencil into the margins of their maps, in the areas that were yet to be discovered, 'Here be Dragons.' Common belief was that when ships reached the edges of the known world, they dropped into the abyss and were devoured. Imagine the courage of the explorer who challenged that risk. The nursing home profession is challenged by history to face uncertainty and accept the risk of trying new things, especially when those new things involve creating a better world for the people who live and work in this environment. Currently there exists a movement to change traditional, institutionally-conceived models of care to models that are directed by the needs for autonomy and choice for residents and staff. This same movement supports environmental changes that help residents make a new home while continuing to provide the necessary high quality clinical care. These changes are intended to improve the quality of care and the quality of life. In an effort to disseminate information about changes in the nursing home profession (frequently called 'culture change') the Kansas Department on Aging has created an education and recognition initiative called Promoting Excellent Alternatives in Kansas (PEAK) Nursing Homes. Through a Title XIX (Medicaid) contract with the Kansas Department of Social and Rehabilitation Services, this project supports Kansas nursing homes in implementing progressive, innovative models of care. KDOA believes that promoting change to new models of care will make a significant difference in the quality of care and the quality of life for those living and working in long-term care environments. A Good Way To Begin At Minneapolis Good Samaritan Center, the journey began by challenging staff to think of what they would want if they were the ones having to move into a nursing home. It started with a small group of department heads (or team leaders as they are called at M.G.S.C.) brainstorming and dreaming of a better place. Then at all-staff meetings we proceeded with the same kind of ideas. We gave staff members magazines and large poster boards and asked them to create their "ideal nursing home" on the poster by using words or pictures. Then, we started talking about how we could make these dreams a reality and started planning the steps that we needed to take. This generated excitement and encouraged staff members to be a part of this process and share their ideas. Dana Rice, Administrator Minneapolis Good Samaritan Center The Galichia Center on Aging at Kansas State University is developing diverse educational resources for nursing homes to use in this process. They will include a discussion of the philosophy and values of changing the culture of care as well as provide different strategies and exemplars for accomplishing such changes. The booklet you hold in your hands is the initial product. With the booklet you can learn basic information about culture change, the national movement and ways that Kansas nursing homes have adopted some of the objectives of culture change. We hope you find the book a useful resource. What is 'Culture Change'? Culture can be described as simply as 'the way we do things' or as completely as "a multi-level phenomenon that represents the shared symbolically constructed assumptions, values and artifacts of a particular organizational context" (Mohan, 1993, p.17). No matter how it is described it is all inclusive and is not easily changed. Change, however, is the goal for many nursing home advocates. Their vision is of a culture change from a traditional, institutional nursing home model, characterized as a system that is unintentionally designed to foster dependence by keeping residents 'well cared for, safe, and powerless' (Boyd 1994, p. 34) to a 'regenerative' model. The term regenerative was coined because it suggested that people in nursing homes could still grow and develop. The regenerative model is sometimes called 'resident-centered' because it increases the resident's autonomy and sense of control (Lustbader, 2000). Currently, there are a number of different types of evolving models, with a variety of terms used to define them. See 'Models of Care' on page 11 of this booklet for a brief description of some of them. The traditional nursing home model developed from a series of legislative changes that were intended to improve the quality of care for older adults. At the time the Social Security Act was enacted in the 1930's, legislators determined that payments would not go to pay for public housing, a decision that virtually eliminated poor houses. In the 1960's, Medicaid and Medicare created new relationships between hospitals and nursing homes. Prior to this time, many people with chronic illnesses stayed in hospitals indefinitely. Since this was no longer permitted, nursing homes adopted a hospital model to manage these residents' chronic conditions. The clinical standards that were developed then remain essential because the majority of nursing home residents have multiple, complex medical conditions. No one advocating change for nursing homes suggests discarding high clinical standards. Rather, the goal is to recognize that in addition to clinical care, residents benefit from changes in social, psychological and physical environments reflecting the fact that this setting is now their home. Some of the areas re-examined to create a resident-centered model include staffing issues, the physical environment, and relationships within the residential community as well as resident direction and control. The terminology 'culture change' came out of the corporate literature of several decades ago. It was meant to acknowledge fundamental changes that were made within an organization to improve efficiency and production. For the nursing home profession, it is sometimes difficult to think about making fundamental changes when a regulatory environment requires much attention, when census is full, when the reputation of the facility is good, and when satisfaction surveys report favorable results. However, recent trends are challenging nursing homes to provide living environments that are less institutional. Frail older adults are remaining in their own homes longer, and the rapid growth of assisted living settings demonstrates the high value placed on minimizing restrictions in one's living environment. Baby Boomers, who typically are involved in choosing long-term care settings for their parents, have been described as "well-informed, well-educated, well-traveled, widely accustomed to creature comforts and instant gratification, and historically outspoken (and that they will expect) superlative quality of life for as long as possible" (Maher, 1997, p. 88). We see it in subtle differences in the dining experience as some facilities adopt buffet dining or five-meal plans, in outdoor spaces that have been enhanced to provide sensory stimulation for residents, and in adopting pets in the home. There is, however, a sense that many of these changes are piecemeal efforts and are not occurring fast enough for future markets. More comprehensive change, such as rethinking the facility's philosophy, restructuring the organizational hierarchy, and remodeling to create less institutional environments may be necessary. Remember... When embarking on change, the reason for change, the philosophy, must be the root. One young administrator helped her staff to begin the journey with a simple exercise: "What would you have to have to want to live here in the nursing home?" she asked. She forced staff members to think personally and to step out of roles that over the years had de-sensitized them to the desires of the residents rather than just their needs. For changes to succeed, this process needs to be repeated many times. Mary's Day Mary Smith lives in Jones House with fifteen other frail elders and staff who consistently work there. Because the same staff work with them every day, daily personal rituals and pleasures are more understood and the residents get up in the morning according to their wishes. Mary likes to awaken with the sun, slowly, first with a cup of coffee and piece of toast and the national news headlines. Susie, Amber and Brian, care assistants who work in Jones House, know Mary's wishes, and those of her friends, and they are careful to maintain the quiet in the house for others who prefer to awaken later. Breakfast for Mary and Sally is usually cereal and fruit, but Sam likes to choose at the moment, based on the weather and the plans for the day. His choice might be biscuits and gravy, or perhaps waffles. If the fragrance is enticing, Mary and Sally may join him, for 'just a bite.' Mary, Sally, and their care assistant Brian firm up the plans for the day. Throughout the day, Amber will help Mary take the right medications at the right time and place. First thing in the morning, Brian and Mary will tackle her daily exercises to keep up her strength. Some days they decide to defer the exercises until after lunch instead; they won't be forgotten, though, because 'just like at home,' people know what they need to do to support each other through the demands of the day. Mary wants to complete her therapy and exercises in the morning, so that she can spend the afternoon getting ready for her granddaughter's visit. As part of the discussion, Mary mentions that she would like to try bathing in the new spa tub, rather than her usual shower. Brian shares this idea with his fellow aides Amber and Susie. Together with Mary, they plan an approach that works for all, but is centered in Mary's choices. Asking, "what does Mary want, how did she do it at home, how can we do it here?" leads to an understanding of the risks and benefits of Mary's decision. After lunch, Mary rests for a while, and then is ready for Brian to help her make her favorite recipe for beef stew to share with her granddaughter who is coming for supper. Earlier, Amber helped her find the family photo album with pictures of her own grandmother, who had been the origin of the recipe. Mary spends the remainder of her afternoon reminiscing as she looks through the album and enjoying the smell of the beef in a nursing home that is using a newer model of carestew in the slow cooker. The only interruption is a quick visit from Sam's daughter, who has come by to take him out for a drive. Knowing that her little granddaughter would need to leave early because it was a school night, Mary makes plans with her friend Sally to watch the rerun of "All in the Family" at 9:00 PM. It will have been a good day. What would you have to have to want to live in a nursing home? What would your day be like? Models of Care New models of care challenge the habitual 'cognitive constructs' that have shaped thinking about aging (Eaton, 2000). These new paradigms of care challenge the notions of dependence by residents in long-term care settings. This new approach to care does not have a single exemplar multiple examples exist, each distinct but sharing a rejection of the dominant cultural assumptions about aging. Some of these new models are described briefly below. To read more about any of them, check the Resources and References sections of this booklet. The Eden Alternative Designed to overcome the 'three plagues' of nursing home residents: loneliness, helplessness, and boredom, the Eden Alternative is intended to create a 'holistic environment.' Typical elements include animals, plants and children but organizational changes are incorporated as well. Bill Thomas, the creator of this model, believes that people need to give care as well as receive it to feel valuable. Eden currently is the only model that provides certification and training. Person-Centered Care Residents are treated with unconditional positive regard and non-judgmental respect and are considered the best judges of whether or not their needs are being met. Lee Fabiano (1999), a pioneer in person-centered care, believes that the resident and his/her family should be guaranteed: Consistency in caregivers' approach and expectations Continuity of past life patterns and preferences Respect for personal values and beliefs Involvement in decision-making Support in decreasing or eliminating those things that impede quality of life The market appears to be demanding change that is revolutionary in nature, while the nursing home profession has been experiencing evolutionary change. Regenerative Care This model views aging as another stage of life and respects individual needs. A regenerative nursing home allows residents more control over their lives and includes a management philosophy of: Continued personal growth Learning with aging Community focus Resident-Directed Care Providence Mount St. Vincent in Seattle decided to change their model of care in 1991 and titled it 'Resident-Directed Care' to capture the vision they had of a 'community directed by the residents.' Change included developing a neighborhood model and providing more choice and control for the residents. Middle levels of management were eliminated and aging in place was supported. Neighborhood Model Large communal living spaces are broken down to smaller units with eight to twenty residents and a consistently assigned staff. Typically, dining/living areas have been created in the units for a feeling closer to 'home.' These neighborhood units are responsible for most of their own decision-making. In Kansas, special care units have often been the first places to create 'neighborhoods,' and many of them provide good prototypes for this model. Some of these units include Newton Presbyterian Manor, Larksfield Place, The Cedars, and Wesley Towers. Wellspring Wellspring is a consortium of eleven facilities in Wisconsin. They united with a mission of providing great quality service. The group shares a geriatric nurse practitioner who leads a 'best practice' track which addresses clinical issues. Through the collaboration they have been able to develop a managed care approach in being able to quantify quality, utilize common programs and tools and to deliver uniform quality of care. Pioneer Network The Pioneer Network is an organization of culture change advocates that uses a common set of values and principles to support models where elders live in open, diverse, caring communities. They state on their website that in order to bring about culture change, there must be change in governmental policies and regulations, change in societal and individual attitudes about aging, and change in attitudes and behavior of those who provide care (Pioneer Network, 2003). OBJECTIVES Return the Locus of Control to Residents u Assist residents in determining their own daily schedules u Restore choices about eating u Provide options for keeping clean u Support continence for as long as possible u Promote all remaining capacities for self-care and mobility v Promote quality end-of-life care Enhance Front Line Staff's Capacity to be Responsive u Commit to consistent staffing u Develop self-managed work teams u Eliminate middle layers of management u Implement cross training for all staff levels u Involve nursing assistants in care planning and care conferences u Enable nursing assistants to set their own schedules v Modify recruitment and hiring procedures u Develop pro-active relationships with surveyors Establish a Home u Promote a sense of community u Include family members in decision making u Re-design institutional structures u Create a holistic environment u Include family members in decision making Enhance Community Involvement v Strengthen formalized volunteer programs v Provide intergenerational programs v Provide opportunities for residents to participate in community activities u Adapted from original Pioneer Network objectives v Additional objectives Organizations that are considering or are in the process of change will want to first determine the current identity of their organization and the one they wish to become. Then they should examine these objectives as potential elements of the culture they want to achieve. Photo by Gayle Doll Objectives of Change For the purpose of this booklet we have elected to adapt the objectives of the Pioneer Network as our guide with modifications and additions of our own, based on a review of research. Objectives are grouped into four general categories, although most objectives relate to other categories as well. u Returning the locus of control to residents u Enhancing front line staff's capacity to be responsive u Establishing a home u Enhancing community involvement Please keep in mind that these objectives often are identified with more than one model of change (Pioneer Values, Eden Alternative, Wellspring, etc.). Adopting them without comprehensive philosophical change is unlikely to create an innovative model of care. Potential benefits While culture change outcomes research is still very limited, available information is promising. Impacts on Resident Well-Being The Institute for Quality Improvement in Long Term Health Care, Southwest Texas State University, San Marcos, Texas (Ransom, 2000) reported the results of a two-year longitudinal study in six Texas nursing homes replicating the Eden Alternative model. They cite: u 33% reduction in the use of anxiolytics and antidepressants administered as needed for anxiety and depression, u 60% reduction of in-house decubitus ulcers, u 25% decrease in the cumulative rate of bedfast residents, u 18% decrease in use of restraints, u 44% drop in staff absenteeism. Providence Mount St. Vincent in Seattle, Washington was one of the first to institute neighborhoods, areas in the home that service small groups of about fifteen residents with their own dining and living rooms and consistent staffing. Evaluation of their programs included the following results (Mount St. Vincent, Providence, 1994): u 11% reduction in routine anti-anxiety medications, u 87% reduction in anti-anxiety medications administered as needed (PRN), u 100% reduction in anti-psychotic medications, u 100% reduction in sedative hypnotics, u 73% reduction in incident reports, u 7% increase in self-medication, u 50% increase in resident activity levels, u More than 100% increase in social interactions. Impacts on Staff Retention The study of the 'revolutionary' and 'evolutionary' facilities (described in the box below) documented a slight reduction in turnover using either approach. The study of the Texas nursing homes reported a decrease in absenteeism. In our own informal observations during site visits to facilities in Kansas, we have been able to see substantial evidence that culture change, particularly in the areas of staff empowerment, can improve staff retention. The Cedars (McPherson), Lakeview Village (Lenexa), Meadowlark Hills (Manhattan), and Olathe Good Samaritan, among others, have seen staff retention improvements after they implemented work teams among staff working closely with residents. Other staff outcomes such as improved satisfaction have been observed. Revolution or Evolution? Dannefer (2001) reported outcomes from a study of two nursing homes engaged in the process of implementing new models of care. One of these homes could be considered as having made revolutionary change: the structural environment was changed radically and organizational and behavioral change occurred simultaneously. The other home described their change as evolutionary and 'a game of inches.' Some of the changes implemented in both homes included adding pets, changing morning routines and breakfast, and developing team skills. Outcomes for residents included modest reductions in falls and fractures as well as respiratory infections. This was seen as significant because skeptics of non-traditional models have predicted that the greater resident freedoms and increased activity would increase the risk of injury. Outcomes also included increases in activity and decreases in disengaged behavior. In the facility with 'revolutionary' changes, staff outcomes included a shift in value priorities toward a more 'resident-centered' belief system, greater stress and greater engagement and commitment. There were no changes in the staff at the 'evolutionary' change facility. Return Locus of Control to Residents A Cat's Meow Ralph was perceived as a problem resident until the cat came to live at his nursing home. Before his home adopted the Eden Alternative and started looking for ways to make Ralph's life more interesting and fulfilling, he was known to be cruel to roommates and other residents in the home. Now that Ralph has total responsibility for the cat's care, staff report that he is much easier to get along with. In addition to his pet chores, Ralph now researches and posts the daily weather report. "Accomplishing a shift back to ordinary self-determination is easiest when staff decision making is placed as close to the resident as possible." Spontaneity and flexibility become a part of the environment for both residents and their caregivers. (Lustbader, 2001, p. 187) Ellen Langer and Judith Rodin (1976), two psychologists, once did a study in which they delivered plants to all of the residents in a nursing home. The new plant owners who were told to make all the decisions for the care of those plants were more likely to be alive and aging more successfully a year and a half later than were their counterparts, whose plants were looked after by the staff. The lesson: let residents make decisions whenever possible. Much has been written about autonomy in long-term care. Kane et al (1997) interviewed 135 residents and 134 nursing assistants and found that both populations attached great importance to choice and control over bedtime, rising time, food, roommates, care routines, use of money, use of the telephone, trips out of the nursing home and initiating contact with the physician. Neither group was satisfied with the choice and control residents had at the time. While creating a resident-centered culture is Learn More... "When we are careful and successful we help each person find the balance in their lives. A balance that reflects what people want, the resources available to them, and any issue of health or safety. Not surprisingly one of the lessons that we are learning is that we need to help staff find the same balance in the support they provide." (Smull, 1996, p. 4) You may wish to learn more about resident choice by reading some of Michael Smull's 'essential lifestyle planning,' a person-centered model of care planning. You can find some of his references in the resource section of the booklet. difficult because it is perceived to be less efficient, it has been known to produce measurable positive outcomes. In a 2001 study of 16 nursing homes, Svarstad, Mount, and Bigelow (2001) found that those facilities with resident-centered cultures showed a 50% reduction in antipsychotic drug use in a five year period following the passage of OBRA (Omnibus Budget Reconciliation Act, also known as the Nursing Home Reform Act of 1987, which contained Federal regulations addressing Medicare and Medicaid reforms). Traditional nursing homes in the same study showed only a 26% reduction over the same period. Restoring control to residents involves all aspects of their lives. The objectives discussed in this section include: assisting residents in determining their daily schedules, restoring choices about eating, providing options for keeping clean, supporting continence for as long as possible, promoting all remaining capacities for self-care and mobility, and promoting quality end-of-life care. Assist Residents in Determining Their Own Daily Schedules "In nursing homes and residential care settings for frail elderly people, it is feasible for care providers to control processes (e.g., restrict what the resident eats, dispense all medications, maintain a sterile environment by restricting items brought in), but this probably infringes inappropriately on the client's autonomy. At issue is whether a residential long-term-care setting should be regarded as a total therapeutic environment, like a hospital, or considered more analogous to home care: that is, the resident lives in the setting and receives care there, but retains autonomous control over a wide range of activities that may have some bearing on his or her health." (Kane, 1995, p. 73) In an early study with nursing home residents, Schulz (1976) found that predictable and controllable events had a powerful positive impact upon residents' well-being. The residents that were allowed to control the time and duration of college student visits demonstrated higher levels of activity, satisfaction, and health than those residents who were visited randomly. Of course, making choices about daily schedules is enhanced when there are more options to choose from. Larksfield Place (Wichita) has adopted an unconventional staffing pattern, hiring eight full-time activity staff persons, more than five times over that required. This has allowed them to reduce certified nursing staff because residents have more to do and require less attention for personal demands. "Nursing assistants must be fully empowered to work out each resident's preferred daily routine and to respond to their spontaneous wishes... Those who exhibit special sensitivity to residents' needs must be appreciated and supported, rather than penalized by a task-oriented system that puts institutional schedules before individual's needs." (Lustbader, 2001, p.188, citing Williams, 1990, 1998) Remember...One of the greatest challenges is to offer intellectually stimulating activities for a group of older adults who retain their cognitive capacities while needing long-term care for their physical disabilities. Dwight Roth, professor of sociology and anthropology at Hesston College, organizes service learning projects for students at Schowalter Villa. In the spring of 2003, 52 students provided learning interactions and opportunities for residents. Another collaborative effort has been drama therapy classes offered by university students. Nursing homes may want to consider accessing local resources such as higher education institutions, local extension offices, youth groups and service clubs to provide a range of opportunities for residents. Learning circles have been implemented at Meadowlark Hills as a way to insure residents' involvement in their own care. In a learning circle, participants take turns one-by-one expressing their thoughts, preferences and opinions. After everyone has spoken the topic is opened for discussion. This is a time when residents typically plan small day to day activities, larger events and activities, and express other concerns and desires. According to Linda Bump, "Learning circles create an environment of contribution, learning and growth to all participants and are an important process in returning control of their lives to the residents." Restore Choices About Eating Allowing choices in what, when and how much to eat restores residents' desire to eat, wastes less food, and results in residents expressing more satisfaction with their lives as a whole. (Lustbader, 2001) A simple study by Altus (2000) in Kansas demonstrated that, when residents in a dementia care unit ate meals family style, passing platters of food and serving themselves, interpersonal interactions increased. Another dining study, of non-institutional dining-in, in which residents were served family style at small dining tables instead of from trays, was linked to increased social interaction and communication as well as improved eating behavior among residents (Gotestam and Melin, 1987). Leaders at Parsons Presbyterian Manor grew tired of the resident council meetings where the only topic on the agenda was food! In January of 2002 they decided to adopt a buffet dining policy. With an attitude of "don't wait until all your ducks are in a row," the team opened up dining to two hours at each meal time. Residents could choose between the regular entree and one alternate. Within months a third entree and vegetable were added. They report it was 'chaos' at first staff were resistant and scheduling was difficult. Dining rooms needed to be re-designed to accommodate the dining carts. At the end of a year, food costs are up just slightly but they are saving over $1,000 per month on supplements. Currently, no residents are on supplements for weight loss. Many sites are just beginning open dining/buffet dining programs, all with immediate and dramatic results. Lakeview Village started their open dining/buffet policy in October, 2002. When they reduced the number of seats in the dining room at the same time they went to a two hour open dining policy, residents lined up at the door, hoping to be one of the first to be seated, angry and upset when they missed the first seating. That issue is resolving itself as residents begin to realize that food served later in the lunch period is just as good as that served earlier. Weight loss dropped dramatically from the first month. Schowalter Villa found that residents enjoyed interacting so much more during meals with the buffet dining program that announcements were difficult to make. Rossville Valley Manor documented the following results based on their buffet dining. Weight gains are up 70%, supplements down by 75% and there has been a 60% reduction in plate waste. Brian Cole, dietary manager, reports that the changes required some equipment purchases but they did most of it for $2,000. Cole's restaurant experience led him to create a short-order breakfast menu that the residents have been enjoying. All facilities implementing new dining plans report only one concern weight gain! Larksfield Place has been using a four-meal dining plan for eleven years. A continental breakfast is served in the resident's room starting at 7:30. Residents don't have to be up and dressed until the largest meal of the day is served at 10:30. Dinner is served at 4:00 and a twilight meal at 7:30. They report that they tried five meals but that there was too much waste and residents complained about eating all the time. Lakeview Village Photo by Gayle Doll Another alternative form of dining is called 'Russian dining.' Residents are served at the table by wait staff using divided serving dishes. The dish may contain two entrees that the resident can see and smell and then choose from. Neighborhood models also provide unique dining experiences that are more homelike. Residents regain control over what and when they eat and concerns with weight loss and hydration are minimized. Typically part of the meal preparation occurs in the household, keeping the sounds and smells of dining as an integral part of life in the home. Some of the homes offering various approaches to dining within neighborhoods include Wesley Towers (Hutchinson), Liberal Good Samaritan, Minneapolis Good Samaritan, The Cedars and Meadowlark Hills. Meadowlark Hills Photo by Migette Kaup Splish, Splash, Do You REALLY Want A Bath? To prepare for planning a new facility, I was invited by the CEO to spend 24 hours in their skilled nursing home to witness for myself how the environment contributes to the challenges that residents and staff face in trying to make the place a "home" and not an institution. I was assigned a wheelchair and a bed and spent most of the day observing and interacting with residents and staff to talk with them about the environment. Since I was there to obtain a broader perspective, I thought it fitting to request a bath, given by one of the female bathing attendants, to complete the experience. The process started when Jamie came to my room and whisked me away in my wheelchair down the hall to the central bathing room. The room was rather large, with cold and shiny finishes, mundane and drab colors and sterile-looking fixtures. Toileting and showering occurred at the front, where soiled linen and trash also were collected in large bins. Behind the 'privacy' curtain stood a deep tub against the tiled wall. It resembled a horse trough with a chair from a dunk tank attached to its end. By the time I was undressed and wrapped in a postcard of a towel, Jamie had started to fill the tub with water and had the lift-chair in place for me to sit in. We decided that I wouldn't need to be 'strapped' in, but Jamie advised that on the way out of the water, it could be a bit slippery in the seat. As the chair lifted me up off the ground high enough to get my feet over the rim all I could think about was how vulnerable I was dangling in my birthday suit in mid-air. If anyone were to walk in, there was no place to turn, no corner to hide behind. And, if I had any anxiety of height or loss in my sense of balance, riding in this chair would certainly be enough to get me to swear off taking a bath ever again. "Many of my residents can't deal with the chair," Jamie noted. "Some of the residents with hip problems can't hold their legs up enough to get them over the rim of the tub, and some with even mild dementia can't handle the ride." Just as I started to relax in the warm, scented water, the door from the hallway opened without warning, and I heard someone come into the bathing room. Jamie quickly assured me that they wouldn't come behind the privacy curtain, but I felt anxious knowing that someone else was in the space. The next sound I heard was the lid to the soiled linen bin being opened and quickly shut, a sound that was soon followed by the stench of what was being contained by the lid. "Oh my, that's just terrible," I stated, as politely as I could manage. Jamie nodded. "I know, I'm sorry, but the soiled utility room isn't large enough to handle all of the bins, and we can't keep them in the hallway so they end up here." We finished up the bath in relatively quick order. There were schedules to be maintained, and I was actually quite ready to get out of that room. After the 'ride' back out of the tub, I started toweling dry. Moisture from the bath naturally surrounded me, and I wanted to go back to the less humid atmosphere of my room to finish toweling off before putting on my clothes. But I realized that to do so meant going out into the public hallway half clothed, so I opted to get dressed where I was, my clothes partially sticking to my arms and legs. Back in my room my mind reeled around the experience. It was the only time that I could remember feeling more anxious after than before a bath. The next morning as I was ending my stay, I stopped by the CEO's office to say goodbye. "By the way," I noted as I turned to leave, "one of the first things we're going to change in the new design are the bathing rooms." By Migette Kaup,M.Arch. Negative Reactions From: Unfamiliar or fearful equipment Cold tub rooms Design features impeding bathing Poor lighting Inadequate mats Inadequate handrails Distractions Noises from the equipment Running water Activities outside the bathroom (Day, Carreon, and Stump, 2000) Provide Options for Keeping Clean Imposed baths or sitting showers may feel like an assault to the resident. They should be allowed to make decisions about how they want to be kept clean. (Lustbader, 2001) While facilities seem to be moving toward allowing residents to make decisions about bathing times, the options for bathing are often limited to two: a sitting shower or a bath. "This thinking is very much a product of our own time and culture, and does not reflect the broad range of methods that people historically have used to keep clean" (Lustbader, 2001, p. 188). Some people may feel more comfortable with standing showers or sponge baths at the sink. Bathing can be a very stressful experience that may be alleviated, in part, by making environmental changes related to lighting, temperature, noise and equipment. Day, Carreon, and Stump (2000) found negative resident reactions from situations shown at left. Many homes are developing spa bathing experiences. Aberdeen Village (Olathe) found that staff appreciate the changes made in the bathrooms as much as the residents have. They are planning to introduce nature sounds during bathing, an innovation that was successful in decreasing agitation in 31 residents in five nursing homes (Whall et al, 1997). Another alternative is to use a towel bath method for bathing nursing home residents. The benefits of the method, developed by Joanne Rader (1995), are graphically demonstrated in the Pioneer Network/Centers for Medicare and Medicaid Services (CMS) video. (See Resources for how to obtain a copy). Communication about residents' wishes is essential between nursing staff and supervisors so that care staff are not mistakenly thought to be subverting standard policies and procedures. Other examples of cleanliness that were evident from site visits included the installation of wash basins near the dining room so residents could 'wash-up' before or after eating as seen at The Kansas Masonic Home (Wichita). Larksfield Place Photo by Linda Gray Support Continence For As Long As Possible Prompting for toileting may help residents achieve continence, reducing the incidence of skin breakdown and the use of urinary catheters. (Lustbader, 2001) Frequency of toilet use increased by over 800% when the curtains surrounding toilets (in lieu of doors) were left open, making toilets clearly visible for a group of residents with dementia (Namazi and Johnson, 1991). This is a finding that many architects, particularly those designing dementia care units, are taking to heart. At Larksfield Place in Wichita the new special care unit, 'Sunflower Lane,' is designed with recessed residents' doors. By doing so the bathroom area can be tucked into a corner of the room. When the door is open the bathroom facilities cannot be seen from the doorway but can be seen easily from the resident's bed. When the neighborhood model is implemented with consistent staffing resident needs can be more easily anticipated by taking advantage of the staff's knowledge of the residents' habits. The site visit to Wheatridge Park Care Center (Liberal) raised the question of whether the call system had been removed, because the facility was so quiet. Rodney Whittington, the administrator, said that he believes staff retention is the first step in making a program successful (their turnover rate is less than 30%). The staff now knows when each resident wants to be toileted so their needs can be anticipated and the call system is seldom used. Promote All Remaining Capacities For Self-Care And Mobility Allowing residents to dress themselves or walk to the dining room may take more time but reduces excess disability and allows the person to retain control over basic life. (Lustbader, 2001) Muscle atrophy can be reversed, demonstrating that loss of strength to the point of physical incapacity is not caused by simply growing older but by lack of use. In one study, nine nursing home residents were recruited to explore the benefits of a weight training program (Fiataronne, 1990). All nine were over ninety years of age. Following an eight week training session, leg strength had increased by an average of 173%. Most remarkable was that several residents were able to abandon ambulatory aids and some were able to get up in the night and go to the bathroom on their own. Doll (1995) demonstrated that these strength improvements positively affected the functional abilities of older adults essential to remaining independent. Additional benefits were seen in psychological factors as well. All of the elders improved in self-efficacy, the belief in their ability to perform functional tasks. These improvements translated into feelings of well-being. Friendly Acres (Newton) has implemented a 'Freedom through Functionality' program which uses Nautilus equipment supplied through the Aegis Therapy Service. A number of residents have shown documented improvements in strength. The staff appreciates the program because strength improvement for residents translates to less assistance from staff. As a bonus, staff also use the equipment themselves and the physical benefits to them result in fewer staff injuries. Larksfield Place, a restraint free facility, reports that the residents living in their home are more mobile as they are involved in activities all day long, seven days a week. These activities include daily weight-bearing exercises, swimming and vita-band classes, as well as the use of exercise equipment, all directed by professionals. A 'Walk and Dine' program at Crestview Manor is just one component of a very strong restorative program. At the time of the site visit the facility had no bed bound residents and 90% of residents were walking at least a few steps to meals. Other outcomes reported from this program were residents who were highly motivated to be independent, more discharges to home, and higher social interactions. Among the ways to maintain personal independence is to continue with self-care behaviors and daily activities from the past. At the Liberal Good Samaritan Home laundry is now done within each neighborhood. Residents can do their own laundry if they choose. One of the benefits has been less lost laundry. Bells AREN'T Ringing! Surprised when asked if we had removed our call system because of the quiet, I realized visitors notice our successes more than we do. For us, response time to call lights is a major customer service and satisfaction issue. The importance is two-fold first, for the individual needing assistance and second, for all the others (residents, staff and visitors) listening to the noise. If you are fortunate enough to have a silent call system, you have won the noise half of the battle. Congratulations! However, we must all work to decrease the response time and thus keep our customers happy. It is unfortunate the amount of knowledge that goes wasted in most facilities. Information such as the resident who needs to use the restroom at 1:17 everyday, yet we force him to "pull the cord". Similar examples of this kind of knowledge are endless. Take advantage of what your staff knows! Rodney Whittington, Jr., Administrator Wheatridge Park Care Center Promote Quality of End of Life Care Based on 1997 figures, 27.6% of Kansans die in nursing homes (Brown University Center for Gerontology and Health Care Research, 2002) and yet death and dying are scarcely mentioned in nursing curricula. "To humanize care of the dying, increased efforts to create nursing home environments in which communication about death can occur are necessary. Nursing home residents need to be able to realize that there is nothing shameful in growing old or dying" (Munley, Powers, & Williamson, 1982, p.272). A number of researchers have identified differences in family and staff satisfaction between hospice care and nursing home care during end-of-life care. Satisfaction is higher with hospice because: u It provides a holistic humanizing model of caregiving. u It allows staff to perceive themselves as a community of caring persons dedicated to the goal of meeting physical, psychological, social and spiritual needs of dying patients and their families. u Supportive ties with the family extend through the period of bereavement. u It supports belief in the right of the individual patient to the prime decision making with respect to his or her care. u Hospice caregivers use a team approach which is characterized by role blurring and de-emphasis of hierarchy. u Open communication about death allows residents to accomplish final goals. While many nursing homes have Hospice coming into their facilities for end-of-life care, none that we know of are using the hospice principles to train staff. Nearly all of the residents who live within nursing homes will die either in the home or after being transferred to a hospital. "When death is feared and shunned, patients are deprived of compassionate interaction, and staff never have an opportunity to experience the rewards that shared intimacy at the time of death can confer on caregivers as well as patients. In some nursing homes, staff may get together informally to offer comfort, but structured mechanisms of support are generally absent." (Munley, et al, 1982, p. 271) While most nursing homes do not want to be known as the 'place to come to die' that is inevitably the case for most of the residents. It is unclear whether denying this fact has any positive outcomes. Lakeview Village has been actively addressing end-of-life care. Administration reports that this is much easier when there is a really good chaplain. At the time of admission, the chaplain visits the new resident and his/her family and completes a spiritual assessment. This form lists the resident's former church and pastor and seeks to find out how much the resident wants to be involved in on-site religious activities. A portion of the form is devoted to 'signs of spiritual issues' which include a list of nineteen characteristics such as fear, anger, guilt, bitterness, withdrawal and so forth. These characteristics can be ranked by degree. Potential strengths which are also ranked include: Bible, prayer, faith system, communion, and longevity/stability of faith system. Open-ended questions ask about beliefs about God, suffering, death and after death, interpretation of what is happening to him or her, role of his/her faith, and the resident's support system. A brochure has been produced entitled "Good Endings: Comfort Care at the End of Life." It describes services and resources offered for the family and resident. A bedside memorial has been printed on card stock and is a series of prayers and devotional readings. Good Samaritan Homes, such as those in Minneapolis, Liberal, and Olathe, have access to a bed-side memorial service for use with staff and family when a resident dies. The Evangelical Lutheran Society provides materials so that each home can develop a memorial service that meets its individual needs. The service is intended to honor the life of the resident and to help provide closure for family members who may be present, staff, and other residents. All who choose to be present gather around the bed of the resident. The service is written, so it is available for staff to use at all times. Typically, a passage from the Bible is read and a prayer is said in unison. This brief memorial provides an important opportunity for family, staff, and other residents to say goodbye.