Background

Two years ago, in 1998, the Winter edition of this newsletter was, in large part, given over to the discussion of what we frequently call “every-day ethics” in nursing homes, a.k.a. autonomy. In my contribution to that issue, I examined some of the successes and failures of the Nursing Home Reform Act of the Omnibus Budget Reconciliation Act (OBRA) of 1987 as it pertained to quality of life for nursing home residents. In it I gently challenged nursing home administrators to do better: at building staffs who value autonomy ( their own and residents’), at overcoming regulatory barriers to autonomy by challenging and changing the systems, and at pursuing environmental changes by promoting architecture for autonomy with places for privacy, intimacy, personal belongings, and choices.

Two years later I’m not only delighted, but I’m actually excited to have the opportunity to update our readers on some of the innovative approaches that some nursing home administrators are taking to improve the quality of life and work in nursing homes. Whenever we talk about the quality of life of nursing home residents we are speaking about mitigating the dynamics of institutionalization, promoting changes in the ordinary and daily facts of nursing home life: disrespect and loss of control, and conversely, of promoting autonomy.

The Pioneers

The Pioneer Network (formerly known as The Nursing Home Pioneers) is made up of people who have a new vision of long term care and how elders should be treated. Promoting the need for culture change in nursing homes is central to what they do. With respect as the core value of this culture change they demonstrate it by beginning decision making with the resident rather than for the resident, by putting persons ahead of tasks (efficiency and economy), and by acting on the belief that as staff are treated, so will they treat residents.

This culture change initiative was begun by a group of providers of nursing home care who had learned through experience that the traditional medical-authoritarian model is traumatic, not only to residents, but also to staff. In order to change their homes, these providers accept risk-taking as a normal part of life; they attempt to promote creativity in residents, families and staff; they build on the strengths of each of these constituencies, promoting individual growth and development. Last, the Pioneers shape the nursing home environment – physical, organizational, and psychosocial – to embody that value they hold most dear: respect.

“Resident Directed Care” is the name given to this particular approach, although there are other approaches among the Pioneer Network Members, such as The Eden Alternative, one of the better known efforts. “ Resident Directed Care is care directed by the resident who chooses the daily routines and services he or she wishes to receive. Staff places supreme value on listening and knowing residents’ backgrounds and personal preferences, while educating residents about concerns related to their well-being” (Providence Mount Saint Vincent, Seattle Washington) . Respecting and valuing individual differences, encouraging autonomy and independence, honoring the dignity of each person, encouraging and supporting choices, advocating on public policy issues: these are the actions that flow from the Resident Directed Care philosophy.

I attended the first national gathering of the Pioneers more than a year ago, and felt a little out of place there. The atmosphere was charged with a counter-cultural energy that was more than a little frightening for those of us who live by the “rules and regulations,” so to speak. Overall they were a well-grounded value driven group, sharing many of he same characteristics of others who have rejected the prevailing culture. They energized me with their refreshing perspective on nursing homes and their residents, as I have tried to do at the homes where I work.

Their efforts and mine are met with the usual questions and challenges and confrontations: What about the Department of Health? The Feds? What about residents who lack the ability to make choices or to say how they want to spend their days? The first two questions are easier to answer. If State and Federal codes are not followed, there will be problems. Some Pioneers have experienced this already. Environmental changes that support privacy, comfort, and that are less medical in construct are subject to scrutiny. Care plans that allow for risk taking are another area for concern. Overall the greatest impact that the Pioneers will have in this respect, I believe, will be their collective efforts to show the positive outcomes they are able to achieve to those who have he power to effect regulatory change. In fact, there are already indications of the Federal surveyors noting the culture change model in their revised approach to nursing home activities programs. A choice of activities for residents to attend is no longer the preferred standard. Instead, the provision of activities of the resident’s choosing is the guiding advice. Hooray!

Autonomy or Respect? The question of how this model cares for residents who can not choose or cannot exercise their autonomy is a more challenging one, and one that may require a new look at which principal should hold pride of place in nursing home ethics: autonomy or respect. While they resemble one another, autonomy and respect differ in some important ways. Rather than focusing on the person’s ability to make choices, respect focuses on treating every person as worthy of respect because they are endowed with the ability to be self-determined. From this perspective, the presence of that endowment, rather than the exercise of it, is worthy of respect. Persons who cannot exercise autonomy certainly deserve the same respect as those who can. Respect for persons and their innate autonomy whether or not they can exercise that autonomy, seems more applicable to the majority of residents in nursing homes.

The Pioneers are making strides in their individual homes, with their residents. They appear to have grasped the real intent of the Nursing Home Reform Act, and by going outside the envelope, they have been able to implement its most challenging and pressing demands for improving quality of life of residents in nursing homes. I think this is one of the most exciting developments to come along in long term care, and hope it continues to blossom in the fresh air of the new millennium. The worst thing that could happen is for the regulators to codify its principles before it is fully developed as a counter-cultural movement to reform nursing homes – from within.

Some Suggested Resources

Pioneer Network: www.Pioneernetwork.net

This site has excellent information about culture change, a speakers’ bureau, chat room, and more. Mission, vision, and values are presented, along with other information.

Eden Alternative: www.edenalt.com

This is one of the culture change models, with a particular focus on introducing antidotes to loneliness, helplessness, and boredom by creating a more natural habitat replete with pets, plants and children, but much more.

Posted on 12/22/00.

Culture Change in Long-Term Care was published in the Dec.- Jan. 00-01 edition of the Ethics Network News and is posted on-line at: https://www.angelfire.com/on/NYCLTCethicsnetwork/dec_jan00-01culture.html

Next Article

Previous Article

Winter edition of the Ethics Network News

Ethics Network News Home Page

NYCLTCEN Home Page