Academic journal article Generations

A Good Death? Finding a Balance between the Interest of Patients and Caregivers

Academic journal article Generations

A Good Death? Finding a Balance between the Interest of Patients and Caregivers

Article excerpt

Mr. T was a 76-year-old man who lived with his wife in a small, run-down house. She was thirty years younger, and they had met during a difficult time in her life, when she was new to the United States, did not speak the language, and had no money. Marrying Mr. T had solved these problems, and she was grateful. The marriage over the ensuing years was not an easy one. He was a very demanding husband and verbally abusive. Still, a sense of obligation for all he

had done for her kept Mrs. T with him to the end. Mr. T suffered a stroke, leaving half of his body paralyzed. He was confined to his bed or wheelchair, and had to be fed through a gastrostomy tube. His wife had to attend to his daily functions as he lost control of both bowel and bladder. He suffered from diabetes and dementia and thus required constant monitoring. To make matters worse, he adamantly refused to participate in his care and continued to be verbally abusive to Mrs. T. He also demanded that he be allowed to die at home under her care,

and he refused to consider placement in any kind of care facility.

Mrs. T remained devoted and managed to keep him at home. During the day she worked full time as a nurse's aide in a local nursing home, and at night she cared for her husband, often working around the clock. She hired a part-time caregiver to help while she was away at work. The physical, emotional, and psychological stress of caring for her husband was tremendous and seriously compro

mised her quality of life. An execerpt from a letter she wrote to her healthcare providers speaks of the difficult of caring for a terminally ill patient at home:

I have been changing the caregiver almost every month. No one can't last longer than a month, they couldn't take care ofhim, he demanded too much to both caregiver and me. For example: He sat in the wheelchair for a few hours, he then wants to go to bed, we just put him to bed not even ten minutes, he wants to get up again. We explain to him that we will Iet him up about two more hours. He doesn't like it, he is trying toget up by himself and he gets

mad, yelled and demands to get up.... It comes to the point that is too much for us to take care of him. Some days I was so down I couldn't open my eyes, then by the time I am home I have to help my husband... I am exhausted.

Mrs. T continued to care for her husband for nearly three years after his stroke. He remained at home under her care until he died in a hospital bed in their living room.

What is a "good" death? The case of Mr. T raises this question in a disturbing way. Was his a good death simply because it occurred on his terms-in his own home, under the care of his family? What about the adverse effects of his terms on his family and caregivers?

As a society, we call a death "good" if it seems to fit neatly into our culturally approved images. These images are of a death that is painless, short, and leaves the dying person with his or her dignity; one that comes without warning, preferably during sleep; one that has been rationally considered by the patient well before the end and follows his or her advance directives. Or perhaps a good death comes not only without pain, but also at home, amidst loving family and friends, after old arguments have been patched up and good-byes have been said.

Yet often death does not occur so peacefully. The process may be long and accompanied by great physical, psychological, and emotional pain. Some patients refuse to participate in their own care. Others, like Mr. T, make nearly impossible demands on their caregivers, fueled by rage and frustration at their loss of control and independence. Many dying people refuse to go quietly into the night, and thus they experience deaths that do not fit our socially accepted ideals of the good death. What lessons can be learned from these "bad" deaths that will help professionals in the field provide better care, improve their research, and design new public policies on terminal care for the dying at home and in institutions? …

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