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The Patient’s Story

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Mr B is an 81-year-old father of 6 with advanced pulmonary fibrosis, type 2 diabetes mellitus, atrial fibrillation complicated by a stroke, and chronic renal insufficiency. A retired shipbuilder and construction worker, he enjoys sailing and photography.

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Two years ago, before being interviewed, he developed cor pulmonale. He was hospitalized 4 times last year and made multiple emergency department visits. He lived at home with his children until his most recent hospitalization, after which he was admitted to a nursing home because of intractable weakness, shortness of breath, and dependence on others to perform his activities of daily living. He has completed a do-not-resuscitate (DNR) document and stopped taking anticoagulants and immunosuppressants.

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Perspectives

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Mr B and his son were interviewed by the author during a medical grand rounds devoted to discussing palliative care at the University of California, San Francisco’s Moffitt-Long Hospitals. Dr G, Mr B’s primary care physician, was interviewed by a section editor later that month.

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MR B: I’ve had a good life. I think when the time comes I’m ready. I don’t want extended medical treatment or a breathing machine. My wife died very young of an incurable brain tumor. She begged people to smother her with a pillow or something. She became gradually worse until finally about the only thing she could move was her eyes. We nursed her along from when she became immobile until she finally passed away. It was a long, drawn-out affair for the children, so I think they’ve had plenty of experience. I wasn’t holding her hand when she died, and I’ve never forgiven myself. Hindsight…If you really knew what was coming. But it’s a mystery, huh? There are always thousands of things that you need to take care of now. Oh, well, everybody does that, don’t they? Don’t they look back and say, “If I’d only…”?

I have a very good doctor. She’s told me herself I can count on her. That made me feel very good. I’ve gotten over the scary part. There are times in your life when you know it’s going to end, and you just have to make up your mind about it ahead of time.

DR G: I stumbled a bit with him at the beginning when he was taking his turn for the worse, not knowing his prognosis…He has pulmonary fibrosis and heart disease, and it’s hard to know…not really knowing what to tell him and not knowing if I’m doing this kind of thing too soon…was hard.

I think about it in relative terms, where he is now compared to when I met him over 3 years ago. He did OK for the first 2 years that I knew him, and then over the next year and a half he really kind of took a turn…now going downhill…a downward sloping course. His quality of life and ability ...

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