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Archive for May, 2013

Rebecca Mead in The New Yorker

Friday, May 24th, 2013

New Yorker dementia care

Rebecca Mead, a staff writer at the New Yorker, has a persuasive piece about dementia care in the May 20th issue. The article centers on the practices of The Beatitude Campus, a retirement community in Phoenix, and it’s full of inventive ways to deal with patients suffering from Alzheimer’s and other dementias.

What struck me, just as with Jonathan Rauch’s article in the May Atlantic, is the slowly-evolving consensus that heroic medicine has little place in the care of advanced-stage dementia patients. We are trying to give some grace to scenarios that are inherently difficult and often painful, both physically and emotionally. As Mead writes, “Without any immediate prospect of a cure, advocacy groups have begun promoting ways to offer people with dementia a comfortable decline instead of imposing on them a medical model of care, which seeks to defer death through escalating interventions.”

My own experience with my father showed me how difficult it was to go against the medical juggernaut. We never want to be seen as limiting care, as doing any less for a patient than we can do. Our natural urge is to prolong the patient’s life. I wanted this for my dad—but not so much that I wanted him to suffer. By the time, near the end, when he broke down and pleaded with me, “Help me. Help me get out of here, can’t you please help me get out of here?”, repeating himself for 20 or 30 agitated minutes at a time, I knew there was no longer any role for “escalating interventions.”

I love this country for its adaptability, for how we talk about everything, for how good news can spread. When my grandmother died of Alzheimer’s in the late sixties, we were in the dark ages of dementia care. I think now we’re seeing some light.

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“How Not To Die”

Saturday, May 4th, 2013

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Jonathan Rauch has an excellent piece in the May Atlantic called “How Not to Die” The key to it is “unwanted treatment,” which Rauch calls “American medicine’s dark continent.”

“The U.S. medical system,” Rauch says, “was built to treat anything that might be treatable at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.”

This made me think of a friend’s father who, three weeks before his death, was subjected to a massive cranial operation. I can’t remember the hope anyone had for this operation, but it seemed a classic case of unwanted treatment. The recovery from it was brutal, and was interrupted by his death. There was little normalcy to Jack’s last days—and all, as Rauch would see it, because he and his family never had The Conversation with his doctors—a conversation that would have addressed the fact of his approaching death.

In 2009, as Rauch points out, it was Sarah Palin who “mendaciously (and effectively)” labeled such frank discussions as “death panels.” Anyone who questions medical maximalism,” Rauch continues, “risks being attacked for trying to kill grandma.”

I rode the edge of this dilemma with my father in 2005, after he fell and hit his head. Blood spilled freely because of the blood-thinning Lasix he was on, but I stanched the wound, called our Hospice nurse and eventually got him into bed.

Somehow, perhaps through his GP, my father’s cardiologist heard about the fall and demanded that I bring my father in for a CT scan, in case there was some bleeding inside his skull. But the Hospice nurse came to the house, looked Dad over and said, “The guy’s doing okay, we’re not going to take him anywhere.” After all, if they found bleeding on his brain, what could the doctors have done? Nothing my brothers and I would have accepted—and nothing my father would have wanted. Though still walking, he was 92, suffering from advanced Alzheimer’s, and extremely frail.

I understand, a cardiologist must be thorough. But to this day I bless that Hospice nurse for helping me stand up to a classic case of unwanted treatment.

Kudos to Jonathan Rauch for a trenchant article.

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