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11. "My Bags Are Packed": Dying in the Nursing Home
- Vanderbilt University Press
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174 Chapter 11 “My Bags Are Packed” Dying in the Nursing Home I have no time to speak to the residents. They cling to you. One resident called me in one night. She grabbed my arm and asked me to hold her. I gently removed her hand and explained that I had 16 residents to care for and could not stay. She died the next day. All she wanted was someone to be with her. I felt terrible. —Nurse’s aide, quoted in “What Makes for a Good Working Condition for Nursing Home Staff?” The moment when they are leaving—the last moment of their life—that is hard. You are so close, and then one moment they have to go. And you have to be strong for them. Sometimes you are like their friend, or their son, or even the priest. I have said a blessing when no one else is around. —Hipp Tiniacos, aide at the Mount Perhaps no other aspect of life so starkly contrasts the old way and the new in nursing homes than dying. Unlike any other place where people live, death is an expected outcome of the nursing home experience. It may take several years for death to come, but people who are old, with complex medical problems, know that they are nearing the end of their lives. Today, in the United States, one in five deaths occurs in a nursing home. In addition, 30 percent of people who die in hospitals had been transferred there from nursing homes just a few days earlier. The number of people dying in nursing homes is expected to grow as hospitals continue to discharge all but the most acute patients. A Brown University study projected that by 2020, 40 "My Bags Are Packed" 175 percent of us will die in nursing homes. Yet rather than creating meaningful end-of-life care, nursing homes, in true medical model fashion, continue to treat death as a failure, an unwanted guest that is best left ignored. As one researcher notes, “In spite of serving as the setting for so many deaths, nursing homes are not prepared to care for the dying.”1 Since the hospice movement began in the 1970s, we have learned a lot about what makes for a “good” death. Surveys consistently show that people want to die at home with loved ones around, and not in pain. But only about one-quarter of us die at home, and far too many of us die alone and in pain. Many who die in pain are in nursing homes, where we would expect them to receive good medical care, at the very least. But nursing home residents in general, not only those who are dying, have significant untreated pain—from 30 to 80 percent of residents suffer needlessly, according to studies.2 Pain goes untreated for many reasons: people with cognitive impairment may not be able to articulate their pain, older people may be stoic and not want to complain or bother harried staff, and pain is not taken seriously in older people in general, according to numerous studies. Hospice nurses are experts at pain management and palliative, or comfort , care. All nursing home residents who are on Medicare have a hospice benefit, but only 1 percent of them take advantage of it.3 Why do nursing homes deal with death so poorly? Certainly it is not because of staff indifference. But researchers have found that nursing home staff, as well as family members, often have difficulty accepting death as a natural outcome. Sandra H. Johnson notes that the regulatory system also inadvertently creates incentives to promote a “death-denying culture within the nursing home.”4 Surveyors look askance at physical changes in residents, such as weight loss or dehydration, that are often a normal part of dying. To avoid being judged as giving poor care, nursing homes may inappropriately encourage tube feeding of residents, which prolongs death rather than saving life—a fine distinction to be sure, but one that is important to understand in order to give good end-of-life care. “What if a proud and peaceful death here was a crowning achievement rather than a failure of medicine?” wonders Tom Gass in Nobody’s Home. “We hide death as if we are ashamed of it: ‘Lost another one.’ When a resident dies here, we lock down the hall and hide the news and the body from fellow residents, as if they were unable to handle...