Ten years have passed since the Nursing Home Reform Act of the Omnibus Reconciliation Act of 1987 was enacted. Its mandates responded to many of the findings of the Institute of Medicine Report of 1986, and those mandated have been incorporated in federal and state regulations governing Skilled Nursing Facilities (Nursing Homes) and the care they provide. Among the most significant of the changes found in the Act and the subsequently formulated regulations was a new emphasis on the quality of life of residents in Nursing Homes. Reduction in the use of physical and chemical restraints, the formation of Resident Councils and Family Councils, and surveys in which inspectors interviewed residents and based their findings on "outcomes" were a few of the methods by which quality of life were to be implemented and measured. But what is this elusive "quality of life?"

Arthur Caplan, co-editor of Everyday Ethics--Resolving Dilemmas in Nursing Home Life, states:

"It is in the small decisions about the content and order of one's daily life that, when added together, determine something of fundamental ethical importance, whether one is in a nursing home or some other setting--the quality of life. If those who live in nursing homes have relatively little control over the content of their own lives, then a critical element of the quality of life--autonomy--will be absent."

While a great deal of attention has been given to autonomy as it pertains to the rights of nursing home residents to make both medical treatment and end-of-life decisions, relatively little has been given to ensuring and enabling residents to make decisions in matters of "living" in the nursing home. These choices: when to bather, what to wear, whether or not to attend an activity, what time to get up, who to room with, what to eat and when, how to spend money, and may more everyday choices are the expression of individuality without which residents are left feeling that their control, their dignity, and their sense of self is lost.

The difficulty administration and staff experience in finding ways to enable residents to retain their choices is, unfortunately, inherent in what may be called the "identity crisis" of nursing homes. Expecting them to be residences for the elderly who need some or total care they are sometimes called Residential Health Care Facilities. The intent to be a home in the true sense, where the individual reigns is easily forgotten or set aside however, in the face of the multiple regulations by which nursing homes are governed. These regulations are heavily based on a medical model which emphasizes safety and health over choice and quality of life. Modeling nursing homes on hospitals, along with the increasing medical instability and physical frailty of residents currently coming to nursing homes, have contributed to this crisis of identity.

Adding to the difficulty of guaranteeing residents the ability to make the choices which will aid in retaining their individuality are the problems of dependency and competency. Physically dependent residents can only carry out their choices through other people, and these very necessary people often make the assumption of a dementia diagnosis if not incompetence if the resident's choices don't correspond to expectations, schedules or procedures of staff or the facility. Families are not immune to this, and consequently residents' choices are not carried out and beneficence or paternalism steps in to replace autonomy.

Efficiency is also an obstacle to resident autonomy, whether based on economy or policy. It is far more efficient to carry them out consistently, than to await a choice that might disrupt a schedule. Even in the best of circumstances and when administrators make efforts to enure meaningful autonomy, conflicts arise between and among residents, staff, and families. No one gets everything he or she wants and a good deal of negotiating may be necessary to resolve clashes.

Still, nursing homes must be operated in a way that not only respects the autonomy of their residents but also assiduously promotes it. It is not only a moral and ethical matter, but it is also becoming a matter of survival for nursing homes in the race of increased competition for referrals from MCOs which respond to client satisfaction to some degree. Additionally, the incredible growth of the Assisted Living industry is due in part to its ability to separate the residential from the medical, i.e., the hotel services are separate from the provision of medical and nursing care, creating a more home-like and less restrictive environment.

In Everyday Ethics--Resolving Dilemmas in Nursing Home Life, the authors purpose several possible avenues to finding solutions to the problems which have been identified. I highly recommend the book as required reading for those who have the responsibility of administering nursing homes. Additionally, Nursing Home Ethics Committees and staff would benefit by its contents. It would be impossible to do justice to the excellent, thoughtful, and sometimes provocative recommendations in this space but some suggestions will be helpful. Among these is building an effective care giving staff, particularly the Aides, who not only can be helped to recognize their own values and prejudices, but also may be taught to value the autonomy of residents and others. More than anyone else, it is the Certified Nurse's Aide who provides care, and fills the role of the person who can carry out the choices of residents. Understanding the importance of autonomy will help to overcome the tendency to give directions to residents rather than receive directions from them.

Overcoming federal policy and other regulatory barriers is an option that administrators, caregivers and families often believe is beyond their control yet consumers, providers and regulators working in cooperation can and should make meaningful change. The current efforts to reduce regulation in New York have produced few meaningful changes in how nursing homes operate. Much less do they provide for more opportunities for choice without placing staff and homes at risk. Likewise, updating the construction code for nursing homes will do little if anything to improve the chances of autonomy being actualized if attention is not given to providing space for privacy, intimacy, and personal belongings. Putting an end to the scarcity of resources such as single rooms and other personal spaces would be a giant step in the right direction.

While we have experienced some improvements in the ten years since OBRA, nursing homes have a long and difficult way to go to provide quality of life as measured by resident autonomy. Freedom from restraints is not its equivalent, nor is the success of quality improvement and customer service programs. Good outcomes on regulatory surveys, and technically advanced medical and nursing care, while good in themselves, are not predictors of quality of life. Radical change is still needed to guarantee residents of nursing homes choices in how they live. This radical change will either come from within the nursing home industry or it will be imposed, sooner or later, by outside forces as the aging population places increasing value on the individual's right to make both life and death choices.

References:

Caplan, A. L. (1990). The morality of the mundane: Ethical issues in the daily lives of nursing home residents. In R. A. Kane and A. L. Caplan (Eds.), Everyday ethics--Resolving dilemmas in nursing home life (pp. 37-50). New York, NY: Springer Publishing Company.

Institute of Medicine, Committee on Nursing Home Regulation (1986). Improving quality in nursing homes. Washington, DC: National Academy Press.

Ethics Network News, Winter 1998, Vol. 4, No. 1, pp. 6-8.

https://www.angelfire.com/on/NYCLTCethicsnetwork/pkrasn.html

Next article
Previous article
Winter '98 News Home Page
Newsletter Home Page
NYCLTCEN Home Page

Posted 7/14/99