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The Patient's Story

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Only 47 years old, Mr M lives with advanced rectal carcinoma. Twenty three years ago, he had radiation and chemotherapy for abdominal Hodgkin disease. Eight years ago, he underwent potentially curative surgery for rectal carcinoma. Mr M performs with a professional symphony orchestra. Although estranged from his family of origin, he has been in a committed relationship with a woman artist for 5 years, and they have a 2 year old son. Three years ago, he developed a bulky pelvic mass—a recurrent rectal carcinoma.

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Initially he did well, but during this past year his condition has slowly worsened—pain, partial small bowel obstructions, urinary retention and infections, fecal incontinence, weight loss, delirium, and fatigue. His partner, Ms L, describes "losing him slowly." The couple's relationship is strained, partly because Ms L must work, raise a child, and live life as a healthy person, while arranging or providing direct services for her increasingly disabled partner. A paid around the clock attendant has recently supplemented volunteer help from friends. In addition to Medicaid coverage for hospitalizations, physicians, medications, treatments, and some home care, the couple pays $2300 per week out of pocket for additional home care.

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Mr M is realistic about his prognosis but wants to live as long as possible. He resists the label "dying." Twice, he enrolled for hospice care; twice, he promptly disenrolled.

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An interdisciplinary palliative care team (funded mostly by philanthropy) has helped Mr M with pain control and with arranging services. He has had a skilled and responsive primary care physician throughout the past 2 years. He takes only opioids for pain, transfusions to counter rectal bleeding, and laxatives or antibiotics as needed.

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Perspectives

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A Perspectives editor interviewed Mr M and his partner Ms L together and 2 months later interviewed Mr M's physician, Dr D.

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MR M: What's happened is just terrible. All of a sudden I got sick and couldn't take care of myself…I'm horrified by this whole thing. Being ill is just a feeling of being lost. A quagmire. Your life has no beginning or end. It's just, "You're dying."…People try to be positive when they come by. But people see me, and a picture tells a thousand words, a picture of my health. They look at me and I don't look great and that's the picture they get…I've lost all this weight and everybody's taken the attitude of "Oh, he's dying now."…The cancer's really gotten to you now. Finally, you're dying. Twenty-five years have gone by and you're dying."…It's what goes on in people's minds. It's horrifying because they're saying it to me.

Ram Dass, the famous speaker and Harvard professor, speaks very highly of how people don't understand the dying process. He recommended for everybody do some death and dying training. Go hang with somebody and do that. I've heard him speak many times. ...

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