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The Why and How of Radical Change

May 1, 2004
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Focusing on the resident, not regulation, will lead to progress by Barbara Frank, MSW; Sarah Forbes-Thompson, RN, PHD; and Stephen Shields, BSW

The why and how of radical change

The challenge confronting today's LTC leaders It is 7:30 in the evening, and the nursing home quietly bustles with the routine of getting residents to bed. Leona, in room 227, is an 81-year-old woman on dialysis. Although she is generally wheelchair-bound, she has said to her social worker, "I'm not that sick. The only problem I have is with my bowels. When I have to go, I don't have much warning. I think that is why my daughter doesn't want to take me home."

She needs to go now, so she puts on her light. Steady beeping echoes along the hall. Eventually, a nursing aide appears, only to say, "Hold your horses, honey. I'll be back in just a minute." The aide turns off the call light and hustles on her way.

Time passes. Leona becomes more fearful. She hates this part. If only she could get up and get to the bathroom. At last, she begins to shout, "Help! Help me!" The nursing aide steps in for a moment saying, "Just go ahead and go in the bed; it doesn't matter." Leona begins to cry. There are reasons-unfortunately, not all historical-for the widely expressed public opinion, "I'd rather die than go to a nursing home." That opinion comes chillingly close to home when one hears a colleague or friend privately confide the preference of suicide over nursing home placement, if and when life comes to that.

There are reasons that dedicated, empathic caregivers carry a vague sense of shame about the nursing home in which they try to "make a difference." They know intuitively that the everyday world of get-up lists, skin checks, and meal percentages somehow doesn't feel right, but they are helpless to change it. Many leave, physically and/or mentally, and most eventually burn out.

Despite successive regulatory attempts to improve care, we have lost our way. Large, inflexible institutions have been created that systematically dehumanize the individual and thwart the human needs of both the resident and the caregiver. The problems in our nursing homes run deeper than falls, weight loss, and "poor resident outcomes." The problems stem from the fact that, as a profession, we are floating along the regulatory river like a boat without a rudder. Struggling for the "no deficiencies" prize, we are missing the rudder of:
  • Professional consensus about our purpose: what we are about, what we are here to do;
  • A clear theoretical understanding of the last stages of life: what our residents are about; and
  • The course-altering wake-up that comes from a flash of insight that we just might be doing actual harm.

It is time for radical change-but, first, we must understand where we are now, and then carefully choose the foundation stones for the future.

Where We Are Now
We have not become lost for lack of trying to do well. We have a long history of incremental change and improvement-from almshouse, to rest home, to hospital unit, to multifacility chain. Significant change in the delivery of nursing home care was prompted by the Omnibus Budget Reconciliation Act (OBRA) of 1987. OBRA was the congressional response to a 1986 report by the Institute of Medicine (IOM) that identified premature death, permanent injury, and unnecessary fear and suffering that resulted from inadequate care and abuse of residents during the previous 15-year period.1

Sweeping changes were made in the structure and delivery of nursing home care after OBRA. Findings from a 2001 IOM study indicated that nursing home care has, in general, improved. Overall, according to this study, residents have better functional status, decreased exposure to pharmaceutical and physical restraints, and fewer hospitalizations.2 Most of these improvements, though important, reflect a disease-based, medical-model approach to care, in which the goal for inevitably declining elders is to maintain their physical function, skin integrity, weight, and maximum possible independence.

Surveys, reimbursement, and quality improvement processes are focused primarily on the resident's physical well-being and risk reduction, and they inadvertently reward the institutions that are most rule-bound and bureaucratic. Disease-focused interventions and quality measures have diverted our attention from the quality of life of the person before us. As a result, today's "facility" could hardly be further away from the nurturing family home in which care was provided 75 years ago. The institutionalized elder has been swept into an environment that minimizes not only risk, but also identity, purpose, intimacy, choice, and meaning.

Our Real Purpose
The purpose of a nursing home, we believe, is to re-establish or maintain the quality of life for frail elders whose needs have outstripped their physical, social, financial, and/or environmental resources. Certainly, what we call "clinical peace" (mitigating pain, preventing skin ulcers, providing adequate nutrition) is necessary for the resident to experience any quality of life, but it is not sufficient. At the minimum, the most universally accepted goal in healthcare is to "do no harm."3,4 That being the case, we cannot perpetuate the factory-like institutional environment that inadvertently shames and depersonalizes residents as a routine part of daily life. Our goal-our mission-must be to re-establish the quality of a person's life, and to value aging as an opportunity for continued growth and development.

Understanding of Last-Stage Development
The question before us today is not only, "What are we supposed to be doing?" but "What are they, the people we serve, supposed to be doing?"