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The Patient's Story

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Mrs R, an 80-year-old, African American woman with a long history of diabetes mellitus, had Alzheimer disease (AD) for 9 years before her death. She was a junior college graduate who had worked in state government and later, according to her daughter, was the first African American manager in a major department store. At the age of 71 years, she was diagnosed as having AD. Within a year she required full-time supervision. One of her 2 daughters, Ms P, moved into her home. Mrs R joined a Program for All-inclusive Care of the Elderly (PACE) and traveled daily by van to a dementia day-care program. She also received home care so her daughter could continue to work.

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During the next few years she became incontinent of urine and exhibited some behavioral symptoms associated with AD, including agitation and wandering. By the sixth year after her diagnosis, she was wheelchair dependent. Around this time, the family discussed prognosis and plans with her physician and agreed that they did not want resuscitation or life-sustaining treatment. They were undecided about tube feeding. Soon after this, Mrs R was hospitalized when her leg became severely infected after a wheelchair injury. She was discharged to a skilled nursing facility, where her intake was poor despite nutritional supplements and feeding assistance at meals. She also refused or was unable to take oral medications.

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While Ms P was on a short vacation, her mother became comatose in the skilled nursing facility and was hospitalized for a diabetic hyperosmolar coma. After recovery, she often refused to eat. A feeding gastrostomy tube was placed, and she returned to the skilled nursing facility. She had no complications from the feeding tube, apart from an initial undesirable weight gain, but her mental function continued to deteriorate, and she became increasingly less verbally responsive. She developed such severe flexion contractures of both her arms and legs that it was difficult to position her in a chair, which left her almost entirely bedbound. A new physician described her as being vegetative, with no purposeful responses of any kind. Her daughters continued to visit her regularly and were very attentive to her care.

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Three years after placement of the feeding tube, her daughters expressed dismay at her condition but felt unable to discontinue the tube feedings. After further discussion with the physician, Mrs R's daughters placed her in a hospice program. Her feeding tube was removed, and she died comfortably, an hour after her daughters' last visit, when they had given her "permission" to do so: "It's OK, Mama, if you want to go, it's OK. We're doing fine, we love you, you can go."

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Perspectives

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Shortly after Mrs R's death, a Perspectives editor separately interviewed Mrs R's daughter (Ms P) and her PACE physician, Dr C.

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MS P: About 8 years ...

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