Quality of Life in Long-Term Care Settings: A Look at Some Trends in Humanizing Nursing Homes
Vol. 2, No. 4, Fall 1997
Lucille B. Bearon, Ph.D.
About ten years ago, I was given the opportunity to edit a special issue of the Journal of Applied Gerontology on a topic of my choice. Because I had already written about quality of life issues among older people (George & Bearon, 1980) and was at the time serving on my county's nursing home advisory committee, I decided to explore quality of life in institutional long-term care settings (Bearon, 1986). In my editorial, I reflected on the previous ten years of research on quality of life in long-term care and observed that many papers revolved around the concepts of adaptation, adjustment, life satisfaction, morale, or social integration, with emphasis on making the best of a bad situation. I asked "What would make a "life worth living?" and "What is quality of life for frail elders living in the margin of life, physically, mentally or socially impaired, facing protracted dependency with sharply reduced odds of returning to life as it once was?"
In the decade since, the discussion of quality of life in institutional long-term care settings has expanded significantly and has been accompanied by numerous innovations in the delivery of care to improve resident or patient outcomes. These changes have come, in part, because of changes in regulatory processes, managerial emphasis on continuous quality improvement, market demands for more services, and increased advocacy for long-term care residents. This more positive, activist vision has included: the reduction or elimination of physical and chemical restraints; professionally developed therapeutic activities using music, art, pets, plants and intergenerational exchanges; architectural and design modifications to enhance safety and autonomy for persons with dementia; a new emphasis on rehabilitation and discharge; as well as expanded options in assisted living for less impaired people. Interpersonal interventions have focused on reducing learned helplessness and restoring the sense of control. Political agendas have focused on increasing empowerment among residents, and advocacy for better conditions by family members and community groups.
An Emerging Trend: The Eden Alternative
One trend that is catching considerable attention in North Carolina and elsewhere is an approach which re-fashions traditional facilities into lush natural habitats filled to overflowing with plants, animals, and people of all ages in a warm, bustling, home-like environment. The approach, labelled the "Eden Alternative" (as in Garden of Eden) was started by geriatrician Dr. William Thomas in a nursing home in upstate New York in 1991 and is carefully described in his 1997 book (coincidentally) entitled "A Life Worth Living." This approach rests on his philosophy that the focus of long-term care should be on "care" rather than on the notions of "treatment" or "therapy" inherent in traditional nursing homes built on a medical model. Thomas further critiques the idea that the major problems of nursing home residents are disease, disability, and decline; he believes the major problems are loneliness, helplessness and boredom, which cause a decay in residents' spirit. Thomas developed the Eden Alternative from his clinical experience as a medical director in a nursing home, his observation of the results of introducing changes in that home, and his own ethical framework and broad thinking about social responsibility, ecology, and anthropology. He also noted the many gerontological studies which have shown that nursing home residents desire autonomy and control over the everyday matters in their lives and thrive when given even small challenges, such as making food choices and tending a plant (Kane et al., 1997).
Thomas' "Edenized" home for 80 residents contains over 100 birds, four dogs, two cats, rabbits, a flock of laying hens, hundreds of indoor plants, and gardens of flowers and vegetables. Some Edenized facilities have on-site child care, after-school care, or summer day camps which allow for a high degree of involvement of preschool, elementary and secondary school students, and large pools of community volunteers. Residents are encouraged to take a primary role in caring for the plants and animals and interacting with people of all ages and, according to Thomas, grow more vital from the variety of daily experiences, the companionship, and a sense that they are caring for others. Edenized facilities attempt to reduce bureaucracy, artificial physical barriers and unnecessary routines to enable the primary work of spontaneous caring to take center stage.
Some observers point out that the Eden approach is simply an extension of the major humanizing changes already taking place in the long-term care industry. Others say this approach marks a refreshing and dramatic change from business as usual. Perhaps some of the perception of the uniqueness and visibility of this approach is due to Thomas' zealous promotion of these ideas and conscious adoption of methods frequently used to promote commercial products, political goals or religious ideas. Indeed, Thomas explains that he is actively trying to gain supporters for a social movement to revolutionize long-term care and states in a flyer that "the Eden Alternative is starting to blow the doors off nursing homes all across the nation." His methods include the selling of buttons, T-shirts and canvas totes which describe the wearer as a "Friend of the Eden Alternative," as well as a book, two descriptive videos and an audiocassette. He also offers organizational membership with a newsletter, multiple format training workshops and retreats, consultations, certification as a "Certified Eden Associate," and "Eden Alternative Coalitions" of professionals and advocates to spread the ideas and practices to all people with interests in long-term care. His non-profit organization has been effective in winning "converts" in the mainstream of the field of long-term care (Andrzejewski, 1997) and in fostering solidarity and a sense of mission among supporters. One newspaper reported that there are now over 100 Edenized establishments nationally, including three in North Carolina* (Senior Citizens Voice, 1996-97). A recent conference focusing on the Eden Alternative was organized by the North Carolina Eden Alternative Coalition and was hosted in Raleigh by the Division of Facility Services of the North Carolina Department of Human Resources. This division administers the program of licensure and certification of nursing and rest homes. The conference was attended by over 450 people, most of whom were employed in long-term care facilities.
The impact of this movement on practices of care and resident outcomes is yet to be determined. Observational reports by Thomas and his associates have been promising. According to Nursing Homes magazine (Bruck, 1997), in the Chase Memorial Nursing Home where Thomas piloted the program, "the mortality rate is down by more than 15%, medication use has declined significantly, nurse aide turnover dropped by 26% and residents' loneliness, helplessness and boredom have yielded to companionship, self-sufficiency and (many will tell you) a sense of joy." A longitudinal study of Edenization in three New York nursing homes described in an unpublished report (Riesenberg, 1996) found little impact in terms of resident life satisfaction and satisfaction with Eden, but showed some improvement in residents' level of functioning, and no negative consequences in terms of infection rates, falls or severity of falls.
It is important to note that I have been unable to find any peer-reviewed scientific articles to date, so the strengths and limitations of the Eden Alternative approach are still debatable. Many questions remain about the feasibility of this approach and need further study. For example, there are public health issues surrounding the introduction of animals and plants into a health care environment. How is it possible to ensure health and human safety with the introduction of so many sources of bacteria, allergens, and physical hazards? Also, there is the matter of resident, family and staff preferences. What about the residents, family, and staff who prefer a more settled, peaceful setting or who fear animals or dislike plants? What about staff members who disagree with parts of the stated philosophy or new practices or who do not accept a redefinition of their professional responsibilities? It is necessary to move beyond anecdotal reports and case studies to systematic evaluations before results can be stated conclusively.
Other Trends and Predictions
An review of four issues of the Journal of Long-Term Care Administration from winter 1996 through winter 1997 and a search of Medline for the past two years show no mention of the Eden Alternative. There were, however, many articles describing interventions designed to humanize nursing homes including increased staff training, attention to spiritual and religious needs of residents, visits from museum staff to enhance art appreciation, and other interventions which acknowledge the broad array of higher-order needs and interests of older adults in a holistic approach to care. Issues of patient autonomy are now frequently framed in terms of "resident-centered care," a situation in which older people are being given (back) responsibility for many of the decisions that affect their daily lives. Another trend that parallels the Eden approach is decentralization of care into separate self-contained, more home-like units, sometimes referred to as "households" (Ott, 1996) or "neighborhoods" (Bond et al, 1996). Both of these approaches explicitly emphasize resident participation in decision making, staff-resident cooperation, and staff teamwork in enhancing community life and resident well-being.
Additional changes in nursing home care are being prompted by changes in health care financing and the changing demographics and preferences of consumers in the marketplace. One nursing home analyst predicts that homes will be increasingly likely to add subacute services which will attract younger and shorter-stay residents who will require vastly different programming (Hamel, 1996). Other analysts predict that the long-term care industry will have to make major changes when faced with Baby Boomer consumers and residents (Riter, 1996). The Boomers have proven to be assertive as consumers of ambulatory care and acute care services and may well be activist residents in group residential care. One could imagine they would demand increased democratization and fewer distinctions between the caregivers and the care receivers. Time will tell.
*The three Eden facilities in North Carolina are the Asbury Care Center in Charlotte, Britthaven of the Outer Banks in Nags Head and Weslean Arms in High Point. Return to text.
References and Resources
Andrzejewski, N. (1997). Untitled presentation at conference, "The Eden Alternative: It's Not Just Fur and Feathers," September 11-12, Raleigh, NC.
Bearon, L. (1986). Conceptualizing quality of life: Finding the common ground. Journal of Applied Gerontology. 7(3), 275-278.
Bond, G. E., Fiedler, F. E., Keeran, C. V., Ogden, R., & Richardson, M. (1996). The neighborhood concept as a model for long-term care. Journal of Long-Term Care Administration. 24(2), 27-32.
Bruck, L. (1977). Welcome to Eden. Nursing Homes. 46(1), 28-33.
"The Eden Alternative Arrives in North Carolina," Senior Citizens Voice, Winter 1996-97, p. 21.
George, L. K., & Bearon, L. B. (1980). Quality of life in older persons: Meaning and measurement. New York: Human Sciences Press.
Hamel, G. (1996). It's not just a nursing home anymore. Journal of Long-Term Care Administration. 24 (2), 39-41.
Kane, R. A., Caplan, A. L., Urv-Wong, E. K., Freeman, I. C., Aroskar. M., & Finch, M. (1997). Everyday matters in the lives of nursing home residents: Wish for and perception of choice and control. Journal of the American Geriatrics Society. 45, 1086-1093.
Ott, L. (1996). New design and management approach improves quality of life. Journal of Long- Term Care Administration. 24(1), 52-54.
Riesenberg, L. A. (1996). Eden Alternative Research Report. Unpublished paper.
Riter, R. N. (1996). The future of nursing homes: Facing the contradictions. Journal of Long- Term Care Administration. 24(3), 50-51.
Thomas, W. H. (1996). Life worth living: How someone you love can still enjoy life in a nursing home: The Eden alternative in action. Acton, MA: VanderWyk & Burnham.
Thomas, W. H. (1996). "The Eden Alternative: Building Human Habitats." Shelburne, NY: William H. Thomas.
Thomas, W. H. (1997). Teaching the Eden Alternative: Animals, plants, kids humanize nursing homes. Aging Today. Jan/Feb.
Lucille B. Bearon, Ph.D., Adult Development and Aging Specialist.