A Guest Post By Authors:
Mark E Williams, MD , FACP
Ward K. Ensminger Distinguished Professor of Geriatric Medicine, University of Virginia School of Medicine, Attending Physician University of Virginia Health System
Nortin M Hadler, MD, MACP FACR FACOEM, Professor of Medicine and Microbiology/Immunology, University of North Carolina School of Medicine And Attending Rheumatologist, UNC Hospitals
Summary: In the guest post below, Doctors Mark E. Williams and Nortin M. Hadler describe the rise of the for-profit nursing home in the middle of the 20th century, at a time when the “temporal gap” between “retirement” and “death” was much shorter than now. “Today people spend more time in retirement than in childhood and adolescence combined,” the authors point out, as they question whether the nursing homes of the past make sense in the 21st century.
Williams and Hadler acknowledge the grim reality of most for-profit nursing homes– “walled communities” where the elderly quickly lose their autonomy, in a place that “lies somewhere between a homeless shelter and a hospital; a smelly, run down, unattractive warehouse filled with mentally and physically impoverished , half-dead people.” Care is very expensive, but often not very good.
As geriatricians, the authors are committed to taking the stings out of the experience of aging in our society. “Older people must be treated as people with a future” they argue. “The remarkable demographic changes that have occurred in the 20th C demand a new communitarian ethic.” They call, “not for another government program, but for a new community initiative to foster intergenerational communities where the aging live side-by-side with those who can benefit from their presence and experience over time. . . And when it their time to die, it should be in their own bed, in their own neighborhood, with the full acknowledgement of their extended community.
Mainstreaming Elderly People
The 1960 Kerr-Mills Act was one of the last federal patches in the quilt of medical services for the needy prior to the enactment of Medicare. It created a mechanism for the states to negotiate some level of reimbursement for indigent care, particularly for the institutional costs of caring for indigent elderly people. For hospitals, this represented a degree of breathing room; for the nascent proprietary nursing home industry it was a boom that primed the growth that was fueled by Medicare. In her comprehensive treatment of the influence of finance on health care in 20th Century America1, Rosemary Stevens illustrates this with a statement by Senator John Williams in 1969,
“Since Medicare started there has been a remarkable increase in the number of chains entering the for-profit hospital and nursing home field. These groups, whose stocks have soared to unbelievable price-earnings ratios, are obviously lured by Medicare’s generous reimbursement….the fact that Medicare will pick up all of the costs of a 100 bed facility even if its total patient load consists of just five Medicare beneficiaries, the fact that there is no effective review of the utilization of beds and services in these facilities, and the fact that the nursing home or hospital can choose the Government agent who will determine how much it is to be paid have certainly encouraged the get-rich-quick operations.”2
Since the mid 1970’s the number of long term care beds has exceeded the number of acute hospital beds. Today there are over 17,000 facilities approved under Medicare or Medicaid for the chronic institutionalization of elderly people. Most are proprietary and all are expected to adhere to regulatory standards. This enterprise has captured the attention of myriad scholars, advocates, politicians, financiers, economists, regulators, geriatricians and more, but few philosophers and even fewer poets. And it has molded a new social construction of old age. It is a social construction that has caused us much disquiet and growing cognitive dissonance over the several decades we have committed to caring for and about the elderly people amongst us, including those living in nursing homes.
We did not enter our careers with this insight. To the contrary, we were enamored with the notion of a facility dedicated to the compassionate shepherding of persons through the final transitions of life after completion of productive, interactive living. In the mid-20th Century, the temporal gap between “retirement” and death was narrow enough to support such a view. Over the past 50 years, the definition of “retirement” has blurred and the gap has widened dramatically (Figure 1).
Figure 1. This Figure was published by the US Public Health Service in National Vital Statistic Reports, Volume 57, Number 1, August 5, 2008. The survival curves over the 20th C have become increasingly rectangular. More and more we are likely to become octogenarians, at which point the curves are increasingly vertical.
Today people spend more time in retirement than in childhood and adolescence combined. Most of us will contend with years, even decades of concern for the generation that preceded us and for the growing numbers of our birth cohort who are challenged to maintain peerage. “Nursing home” looms as an absorptive state, not as an empathic transition.
As a society we have come to fear dependency and its attendant specter of nursing home placement more than death. We fear being a burden and being without resources more than we fear loss of participation in the world we made. We have built and populated walled communities designed to succor us as the end of life approaches. We enter these “facilities” because we should and leave our intimates to cope with a mixture of relief, guilt, and foreboding. It’s time to question whether the solution that seemed appropriate in the middle of the 20th Century pertains to longevity today.
Life behind the walls
One principle of modern American health care is that both quality and efficiency are best served if the patient is brought to where services are provided. No doubt this is true for services that demand expensive technology that can be shared. But does this tenet hold in any other instance? For the care of elderly people, the tenet lives under the rubric, Continuum of Long-term Care. The intent is to provide continuity of care for any elderly person who dips a dependent toe into the mélange by orchestrating numerous interrelated services underwritten by multiple agencies. A Continuum of Long-term Care acknowledges the great variability in need. But it places the responsibility on the individual, the family, and the geriatric “providers” to find the necessary services. The process fosters dependency. The compartmentalized menu of options, each with well-defended turf boundaries, causes elderly people to bump along its continuum from home to assisted living and eventually to the nursing home terminus. People rarely fit perfectly within the providers’ boundaries. They end up labeled often to conform to the criteria of the provider rather than their needs. Individuals change their living setting and location of care under psychological duress if not distress.
The sterile definitions of services in the Continuum of Long-Term Care reduce the most personal aspects of independent living to service functions. No check-list does justice to the intimacies of toileting, bathing, sexuality and eating. A narrow, literal approach to service delivery treats a bath or toileting as the goal without considering the manner and timing that shapes our very existence. All too often autonomy is overridden either by family members or by otherwise well-meaning professionals who need to serve expedience or their own proclivities rather than preserve intimacy and self-actualization.
The vortex of the Continuum of Long-Term Care leads to the dreaded nursing home. Its indelible image lies somewhere between a homeless shelter and a hospital; a smelly, run down, unattractive warehouse filled with mentally and physically impoverished , half-dead people. Nursing Home is the semiotic for end-stage and hopeless. Care is very expensive (approaching $100,000 annually) and many families have to spend down to poverty levels to receive social support. Staff turnover in nursing homes is significant and in some cases over 100% per year3. The quality of care is less than optimal despite being highly regulated (only nuclear power plants have more regulations!)4. Medical visits are often superficial and perfunctory. Moreover whatever personal autonomy remained at admission is soon abandoned. There is little privacy, no choice in roommate and no opportunity to lock the door. Inpatients must conform to institutional schedules of meals, rest, and recreation irrespective of past lifestyle choices. Personal, intimate care is often provided by minimally trained workers. Even high-end life-care communities minimize decisional control. For example in one community residents living independently are asked not to call 911 if a person is found down; instead they should call the nurse on duty who will make the 911 decision. It is a sad commentary that some elderly people would be better off committing a felony like counterfeiting money because in prison their assets are preserved, meals are guaranteed, and healthcare is scrupulously monitored and fully covered.
Community and Inclusivity
For most, particularly for most that have been succored by their life course, the transitions from retirement to a ripe old age to frailty to dependency will play out over decades. The “Continuum of Long-Term Care” was in response to a different reality, when these transitions played out in years. It seemed reasonable to divorce this time of life from all that came before. It seemed reasonable to institutionalize the last chapter with a series of bricks and mortar way stations on the death march. It seemed expedient to populate the way stations with anonymous caregivers and wallpaper the way stations in reams of regulations.
The two of us have spent our careers as geriatricians committed to taking the stings out of the experience of aging in our society5. We are at a time of career and of life when our hard earned objectivity is blurred by inclinations to identify with our patients. The “Continuum of Long-Term Care” in America and the continuum of aging in America have grown dissonant. Today aging is a time of life that is as integral to our personal evolution as any other. And the aged are integral to the complexion of the community and to social cohesiveness just as they were before they were advantaged by life experiences. Marginalizing this time of life deprives our communities of this life blood and denies the aged the sense of vitality that is the privilege of longevity. The remarkable demographic changes that have occurred in the 20th C (Figure) demand a new communitarian ethic. To marginalize elderly people today is to seal our own fate. Older people must be treated as people with a future, not a past. Social policy must reflect this human value.
Gently into the night
Until very recently, most people died at home. Death required codification, but dying demanded the most human of interactions. Family and community participated: visits, advice to the survivors, religious rituals, farewells and blessings. It was a final affirmation of the person and his or her place in society. Today most people die in institutions– in hospitals or nursing homes. Their care often is considered more a technical matter than one of moral concern. Too often in these institutions there is more attention paid to the diseases than to persons, more scientific curiosity about the machinery of the body than consideration of the human values that make a life worthwhile, more focus on subspecialty technicalities and analgesic adjustments with no one looking at the needs of the whole person. Modern medical care has rendered the last illness fiscally burdensome, regardless of age. Modern society has rendered the last illness bereft of grace. Dying in a hospital, subjected to multiple traumatic high-tech procedures and covered with tubes, has become a new symbol of contemporary death, today’s Danse
Macabre. Vain hopefulness supplants the touching comfort of goodbye. Dying has become alone.
We are not calling for yet another government program populated by strangers and designed in the abstract. We are calling for a new national priority and new community initiatives. Requisite resources and monies are sequestered behind the walls of the existing institutions and are now supplemented by the Community Living Assistance Services and Supports provisions of the Patient Protection and Affordable Care Act (H.R. 3590 and 4872). Let’s use these resources to foster intergenerational communities where the aging live side-by-side with those who can benefit from their presence and experience over time: knowing them and living with them and sharing life’s challenges with them. And when it their time to die, it should be in their own bed, in their own neighborhood, with the full acknowledgement of their extended community. Theirs should be communal memories. That is the higher calling.
- Stevens R. In Sickness and In Wealth. New York, Basic Books, 1989.
- Williams J. Congressional Record, May 14, 1969, S. 5202.
- Castle NG. Measuring Staff Turnover in Nursing Homes. The Gerontologist. 2006; 46 (2): 210-219.
- Kane RA and Cutler LJ. Comparing Nursing Home Rules Yields 10 Lessons from 50 States. Aging Today. 2007; 28:7-8.
- Williams ME, Hadler NM. The illness as the focus of geriatric medicine. New England Journal of Medicine. 1983;308:1357-1360.