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?"

There are a number of well-accepted theories on aging. Many authors have written about the growth and development necessary to achieve well-being in old age and a peaceful death, (5,6) and we find this theoretical framework useful to consider. If human beings continue to change and develop throughout their lives, then what is the internal developmental "work" at this age that allows the very old to transition peacefully from this life to the next?

The very old must (and, 75 years ago, usually did) reach an acceptance of their physical decline; redirect their strengths into a different, yet meaningful existence; have a vital involvement in their surroundings; and find a sense of purpose. Indeed, all of this represents "inner work," and failure to perform it, to reach this developmental conclusion, is clearly manifested in an elder's continued psychological and spiritual suffering. (1,6,7)

Let us assume that for the physically declining elder, the often-unconscious developmental struggle is to recover or achieve a sense of personhood, connectedness, and meaning, rather than to succumb to emptiness and despair. As caregivers, consensus on such a theory can inform and direct our work, indeed, our purpose. It can and will prompt such questions as these: How do we provide and enhance elders' connectedness with their past? How do we help them with their grief in the face of overwhelming losses? How do we encourage them to reconnect with their strengths to develop a new self? How do we foster their vital, meaningful involvement in their surroundings? How do we build intimacy and connectedness for them? The answers to these and similar questions will be reflected in a radically new world of care.

Harm to the Person

It is as difficult as staring straight at the sun, but if we as a profession are to initiate radical change, then we must be conscious of and focus on the harm that we do. Harm--not just to the body, but to the very person--is systematically embedded in bureaucratic institutions that strip elders of their personhood. (7) Harm is done when, in the face of last-stage developmental work, our focus is on fall risk, dehydration, nutritional decline, and skin breakdown; harm is done when our residents' pastimes focus on medications, mealtimes, bathing, and bingo. Harm is not our intention, but we often lose sight of the context in which the elder exists.

Older adults entering nursing homes have, almost universally, experienced profound losses: the death of a spouse, the loss of lifelong friends, the "breaking up" of the home and the scattering of meaning-laden possessions, and the loss of mobility, function, and independence. Such people are, by definition, in a state of suffering, a state of anguish in response to overwhelming loss. (7,8) Their losses are compounded when daily nursing home life snuffs out privacy, social and occupational identities, community interaction, relationships with nature and God, striving toward goals, and dreaming dreams. Such cumulative and exacerbated losses can and do destroy one's central purpose and core identity.

Do our overscheduled, institutional approach and medical focus not exacerbate suffering? Have we not injured personhood and destroyed meaning? Does such injury not constitute harm? Is the harm any less injurious because it is so mindlessly insidious and unintentional?

Moving Toward Answers

How can we, as providers and decision makers, contribute to a radical change in the way nursing home care is provided? Some of our colleagues (e.g., the Pioneer Network, the Society for the Advancement of Gerontological Environments [SAGE], and Dr. William Thomas and the Green House Project proponents) have already embarked upon this journey. Daring new environments are growing from our individual and shared recognitions of harm done to the person.

Be clear, however: The answer is not about a model, and it is not about a particular set of architectural changes. The core of change will be based on courageous examination--one home at a time, one resident at a time--of every step in the care delivery process, of every inadvertent incident of harm created by those steps. The changed way of providing care may vary from place to place and from leader to leader.

While it is absolutely critical that regulatory agencies, lawmakers, and the various purveyors of quality-indicator measures re-examine their mission and purpose, providers must lead the way. Lawmakers and surveyors cannot--indeed, should not--react swiftly or make changes easily, but that fact is no excuse for providers to continue in what we know is harmful. Indeed, we must all join hands to go forward.

It is too early to propose here what the new world will be; as providers, we are not yet ready for definitions that could limit our inventiveness. First, we believe, we must do the soul-searching examination of our reason for existing, we must understand where our residents are in their transition, and we must acknowledge our ethical obligations to them. Whatever the new world eventually looks like, all variations must and will have in common a nourishing environment and mission-driven leadership.

The Nurturing Environment

The requisite nourishing characteristics we've discussed here are emerging even now--despite their clash with old-style architecture (e.g., long hallways, nursing stations, centralized dining rooms) and old-style organizational structure--as new ways of caring for elders begin to form. The characteristics of a nourishing environment include:

* An acceptable level of physical comfort ("clinical peace")

* Abundant human connection, genuine and meaningful relationships, touch

* A strong sense of community and belonging

* Routine, ongoing choice (not in the context of "allowing" certain choices)

* Personhood, including the elder's history, identity, achievements, and sorrows

* Continuity of beliefs, habits, belongings, lifelong rhythms, and routines

* Meaningful contribution, limited only by the elder's inclinations and abilities

* Personalized caregiving interventions--often simple--that uniquely address the needs and preferences of the elder

* Resident-centered decision making and program design--in fact, not in name only

"Neighborhoods," currently beginning to develop in some homes, resonate with some of these nurturing characteristics, and a "small is beautiful" principle appears to be emerging. (9)

Leadership

As much as we would like to think that a new world of elder care will emerge on its own, prompted by the combined force of providers' honest self-examination and ethical imperative, our experience says otherwise. It is leader-ship--courageous, mission-driven, resilient, relentless--that will take nursing homes to the new world. Their creating--indeed, insisting on--a common sense of purpose, an understanding of the elder's psychological and spiritual journey, and a nurturing environment will naturally fall in place as the principal challenge for these leaders. They--we--won't all be brilliant, but we will coach and inspire caregivers, argue with surveyors, lobby lawmakers, and move our profession into the requisite new world.

Every mission-driven person--nurse, social worker, administrator, CEO, board member, surveyor, lawmaker--can and must have a role in that leadership; each of us has a role to play. At the most basic level, we start where we are; we allow ourselves to "see" what we are doing; and we begin to fix, step-by-step, what is in front of us. Ultimately, we stop building and re-creating what is not working. As Dr. Thomas has said, with passion, we "throw ourselves in front of the bulldozer."

We must do it for our elders and for our society. We, who will also grow old, must do it for ourselves.

References

1. Institute of Medicine (IOM). Improving the Quality of Care in Nursing Homes. Washington, D.C.: National Academy Press, 1986.

2. Institute of Medicine (IOM). Wunderlich GS, Kohler PO, eds. Improving the Quality of Long-Term Care. Washington, D.C.: National Academy Press, 2001.

3. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th ed. New York: Oxford University Press, 2001.

4. Jonsen AR. Do no harm. Ann Intern Med 1978;88:827-32.

5. Erikson EH. Childhood and Society. New York: Norton Press, 1950.

6. Rybash JM, Roodin RA, Hoyer WJ. Adult Development and Aging. 3rd ed. Madison, Wis.: Brown & Benchmark, 1995.

7. Cassel EJ. The nature of suffering and the goals of medicine. N Engl J Med 1982;306:639-45.

8. Kahn DL, Steeves RH. The experience of suffering: Conceptual clarification and theoretical definition. J Adv Nursing 1986;11:623-31.

9. Schumacher EF. Small Is Beautiful: Economics As If People Mattered. New York: Harper & Row, 1973.

BY BARBARA FRANK, MSW; SARAH FORBES-THOMPSON, RN, PHD; AND STEPHEN J. SHIELDS, BSW 

Barbara Frank, MSW, is Vice-President--Operations at Lakeview Village in Lenexa, Kansas. Sarah Forbes-Thompson, RN, PhD, is an Associate Professor in the University of Kansas Medical Center's School of Nursing, Kansas City, Kansas. Stephen J. Shields, BSW, is Executive Director of Meadowlark Hills in Manhattan, Kansas. For more information, contact Frank at [phone] or e-mail [e-mail].

To comment on this article, please send e-mail to [e-mail]. For reprints in quantities of 100 or more, call [phone].