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The Patient's Story

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Mrs B was an 84-year-old woman with advanced dementia who developed an aspiration pneumonia requiring an acute care hospital admission to the intensive care unit. During her recovery, she had difficulty during an informal swallowing study. To provide nutritional support, her family agreed to the temporary placement of a nasogastric (NG) tube, even though she pulled it out twice. Physical restraints were used to prevent further episodes of tube dislodgement. The hospital medical team recommended placement of a percutaneous gastrostomy tube for feeding. However, on the basis of the patient's previous wish not to end up in the same state as a sister-in-law with Alzheimer disease, her husband and the rest of her family believed that she would not have wanted a long-term feeding tube, and she was transferred to a nursing home without a feeding tube. The family's hope for her nursing home stay was for her to regain sufficient strength that she could resume oral intake. They were uncertain if subsequent hospitalization would be appropriate at this point in her illness.

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Perspectives

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A Perspectives editor interviewed Mrs B's husband, Mr B, and the medical director of Mrs B's nursing home, Dr Q.

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MR B: My wife has been bedridden for the past 2 years and during that time has needed special care and caregivers since she has lost the use of both her arms and her legs. [Nine months ago,] she developed pneumonia, and we took her to the hospital. The doctors repeatedly suggested…inserting a gastric tube for nutrition…With respect to the surgical insertion of the gastric tube—for the people I know who had them, in the beginning it was very horrible, but later they became intolerable, and that was one of the guiding features of our own decision…[This reminded me of] the story of my sister, who had had a gastric tube installed. My sister's experience was a firsthand observation, and it resulted in years of very difficult living. She died a few years ago, and the quality of her life for years was just nonexistent. She was not really living, and the tube was all that kept her going. We were a little disturbed by the frequency of the calls for the gastric tube. [The doctors were] quite insistent. We indicated that it was just out of the question.

DR Q: [When Mrs B was admitted], my understanding was that she was on a do-not-resuscitate status. But, if need be, [she] could be transferred to an acute [care] hospital. [Her family] told me that she did not want any invasive measures. The more I talked to the family, the more it became obvious that the patient's advance directives did state no IV [intravenous] fluids and no artificial feeding.

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The medical, logistical, and emotional issues surrounding a dying patient are frequently complicated, and differences in perspectives of the patient's loved ones ...

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