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The Patient's Story

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  • What tormented Ivan Illych most was the deception,

  • the lie, which for some reason they all accepted, that

  • he was not dying but was simply ill, and that he

  • only need keep quiet and undergo a treatment and

  • then something very good would result.

  • —Leo Tolstoy, The Death of Ivan Illych

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Mr D was a 78-year-old man with end-stage renal disease (ESRD) from diabetes and hypertensive nephrosclerosis. He had a prior history of multiple episodes of aspiration pneumonia. For the past 2 years Mr D resided in a convalescent home, where he was visited frequently by his daughter, son, and their families. Mr D was transferred from his skilled nursing facility to the university hospital with cough, fever, and hypoxia.

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Mr D had diabetes mellitus for 10 years, with repeated hospitalizations for a nonketotic hyperosmolar state. Comorbid disorders included vascular dementia, atrial fibrillation, chronic lymphocytic leukemia, emphysema, pleural effusion, colonic diverticulosis, and tubular adenoma. Hemodialysis was begun 30 months before his final admission, but he became progressively more lethargic, less verbal, and physically weaker. A formal advance directive was never completed. On several occasions Mr D's children and both Dr A, his family practice physician, and Dr E, his nephrologist, had discussed Mr D's deteriorating condition and the treatment alternatives that were available, including cessation of dialysis. For some time the family disagreed with respect to the goals of treatment. Despite the episodic illnesses, Mr D still seemed to relish eating and clearly enjoyed visits. Nonetheless, the repeated hospitalizations and Mr D's failure to regain his baseline status after each episode weighed heavily on his children.

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By the time of his most recent hospitalization, he was no longer able to eat, and talk turned to a feeding tube and other invasive support. His family painfully deliberated over this course of action and finally agreed to dialysis cessation. Mr D was unable to meaningfully participate in this decision. Five days after his last session, Mr D died in the palliative care unit of the hospital.

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Perspectives

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A Perspectives editor interviewed Mr D's physicians and adult children.

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DR A (FAMILY PRACTICE PHYSICIAN): The first time I met Mr D, I went to see him at his nursing home…just over a year before he passed away. At that time his son contacted me primarily to find out if anything could be done to make him more alert…I spent close to 2 hours with him in a nursing home. He was in a wheelchair at a table with his head down on the table asleep. Once, during the course of 2 hours, he lifted his head up to look around like, "Where am I?" and after a few seconds put his head back down as though he didn't see that there was anything worth staying awake for. He was going out to dialysis 3 times ...

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