The High cost of Denying Aging: Dying in Nursing Homes
Nursing homes are, among other things, a dramatic reminder that cultural attitudes have consequences. It is there that our broader society’s fear and denial of aging and death plays itself out in end-of-life care of residents. This essay will examine some of the problems in end-of life nursing home care and the need for concrete improvements.
The numbers underscore the importance of the nursing home in a culture that marginalizes death: Nursing homes are where a lot of people die. Approximately 17% to 22% of all deaths in the Unites States occur in nursing homes (National Center for Health Statistics, 1996). And this number would be considerably higher if not for the common practice of transferring nursing home residents to the hospital immediately prior to death (Mezey et al, 2002). Fifty percent of older adults transferred from the nursing home to the hospital die within 4 days (Levy, Eilertsen, & Kramer, 2002).
The relatively recent move of death from home to institutions was spurred by several factors. Modern industrialization moved many potential caregivers from the home into the workplace. Advances in medical science concentrated technological and health care resources in centralized locations. This move to institutions has medicalized and isolated the experience of dying. People now have less experience with death and fear it more.
Another cultural problem that has made it more difficult for people to experience severe illness and functional decline is our society’s view that nature exists for us to use and control. Each of us uses many daily health strategies aimed at controlling our own mortality (e.g. seat belts, diet, exercise). Medical advances and preventive care practices have spawned an unrealistic expectation that there is a magic bullet for whatever ails you. We deny our own mortality and are psychologically unprepared for illnesses and threats to our survival that occur in old age.
Also, embedded in our controlling tendency is a difficulty in coming to terms with the bodily functions that are part of what it is to be human. People--all people--sweat, urinate, pass gas, defecate, and exude various body odors. When ill, people may vomit, lose control over their bowels, cough up sputum, produce profuse nasal discharge, become anxious and experience discomfort. Yet, as a society we don’t want to be forced to look at Christopher Reeve drooling or Michael J. Fox showing tremors. Are we afraid? Yes. We draw away from and label these visions as disgusting. Yet, by doing so, we degrade the person and his or her experience. People learn from a very early age to feel shame regarding basic bodily functions. When you need assistance with such bodily functions, you feel unnecessary shame and mortification at “losing control.” To acknowledge our collective humanness and accept these human conditions would help people during illness and frailty to cope with dependence with some activities of daily living.
Our cultural attitudes have impacted end-of-life care in nursing homes in a number of negative ways. Older adults facing life-threatening illness come to the health care system needing real help. Professionals working in long-term care should be experts in the holistic model of palliative care, which calls for comfort care and treatment of the whole person rather than vain attempts at curative care. And yet, this model has not been embraced. Residents of nursing homes, though less likely to have cancer and respiratory distress, have more pain and cognitive impairment than people who die in other settings (Hall, Schroder, & Weaver, 2002). Research findings from nursing homes reveals poor pain management (Teno, Weitzen, Wetle, & Mor, 2001) and low use of hospice care (Happe et al., 2002).
These are serious issues, yet the long-term care industry currently seems mired in polarizing debates over whether the structure of long-term care services should be based on a social model or a medical model. In developing from a paternalistic “helping” model, nursing homes have disempowered residents and overly medicalized their life experience and self-identity. But, on the other hand, social model programs may neglect true physical needs. Polarized positions like these will not help our efforts to reinvent long-term care in a way that responds to the needs of frail and ill older adults. Prominent gerontologist Robert Kastenbaum (1996) has described the care delivered at the end of life “ignorant benevolence.” Closeted in our own assumptions and fears, we do not bother to find out what people really need.
What we do know is that we need to understand and assist people with their physical, emotional and existential needs. At the end of life, people do need complex symptom management that in turn requires professional nursing expertise. It is a complex process, for example, to escalate analgesics in an 85-year-old. If not done skillfully, the person can experience either poor management of symptoms or intolerable side effects. It is very disturbing that we have a fairly comprehensive body of knowledge on meaningful pharmacological and non-pharmacological comfort interventions that is woefully underutilized. This translates into unnecessary suffering, with people ending their lives feeling assaulted by a health care system that is more comfortable with invasive technology than supportive care.
How different would the long-term care experience be if we lived in a culture that did not fear and deny death and aging? The last stage of living and the journey toward death would not need to be overly focused on medical care, vain pursuits at cure, overuse of technology and marginalization of people at the end of their lives. We would not look at old age and our mortality with a horror beyond reason. The journey toward death could be shared with family members and caregivers in ways that are both meaningful and comforting.
Rather than imposing paternalistic “care models” on older adults, we need to look to older adults, family members and disciplines outside the traditional medical and social professions for insight into services and health care approaches that will bring higher levels of meaning, cohesion and comfort to the last phase of life. One strategy for improving long-term care delivered to older adults coming to the close of their life is to begin the process of deconstructing our fears and assumptions about aging, human dignity, death and suffering while acknowledging the limitations of medical care at the end of life. Only then can we thoughtfully consider what comfort and existential meaning can be realized by the dying person, family members and even those in the health care system.
Hall, P. Schroder, C., & Weaver, L. (2002). The last 48 hours of life in long-term care: A focused chart audit. Journal of the American Geriatrics Society, 50, 501-506.
Happ, M.B., Capezuti, E., Strumpf, N., Wagner, L., Cunningam, S., Evans, L. et al. (2002). Advance care planning and end-of-life care for hospitalized nursing home residents. Journals of the American Geriatrics Society, 50, 829-835.
Higgins, G. (1997). Get ‘em out of the shed. In J. Young-Mason (Ed.). The patient’s voice: Experience of illness. Philadelphia: FA Davis.
Kastenbaum, R. (1996). Death and dying (pp. 361-372). In J.E. Birren (Ed.). Encyclopedia of gerontology. San Diego: Academic Press.
Levy, C., Eilertsen, T., & Kramer, A. (2002). Hospital versus nursing home: A comparison of nursing home residents who die in the hospital rather than the nursing home. Journal of the American Geriatrics Society, 50, 41.
Mezey, M., Dubler, N.N., Bottrell, M., Mitty, E., Ramsey, G., Post, L.F. et al. (2002). Guidelines for end-of-life care in nursing facilities: Principles and recommendations. John A. Hartford Foundation Institute for Geriatric Nursing.
National Center for Health Statistics. (1996). Vital Statistics of the United States, 1992,. Vol2: Mortality. Part A. Section 1. Washington DC: Department of Health and Human Services.
Nepo, M. (1997). God, self and medicine. In J. Young-Mason (Ed.). The patient’s voice: Experience of illness. Philadelphia: FA Davis.
Teno, J.M. , Weitzen, S., Wetle, T., & Mor, V. (2001). Persistent pain in nursing home residents. Journal of the American Medical Association, 285, 2081.
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