Wednesday, April 4, 2012

Start the Conversation Now

One recent evening in the Martin Luther King Jr. Room at Brookline High School, a cardiologist was in the middle of a presentation on “Communication and Care at the End of Life,” when he was asked when a family ought to begin discussing the challenging subject.
“In high school,” he said. “Before college.”
There was laughter in a room filled mostly with senior citizens. The cardiologist smiled, too. But it wasn’t a joke.
In fact, he said, high school students are of an age to comprehend the inevitability of death, and waiting till they’ve left for college is to miss an opportunity that may not come again.
Few hearing the advice were of an age likely to have children in high school. Grandchildren, perhaps. And so for them, the advice for when to begin the conversation would be: Now.
“These discussions take time,” said Dr. Wilfred Mamuya, of the Lown Cardiovascular Center, “and multiple meetings. It has to percolate. And if the person is not ready, they’re not ready. You just have to bring it up and bring it up and bring it up again.”
Why be so persistent with a conversation that nobody seems to want to have? Because so many people who say they want a “good death” and to die at home, die instead hooked up to ventilators and feeding tubes in an ICU, while families and physicians sort out best interests and difficult choices for a person who can no longer speak for him or herself.
In the speech, a presentation of the Brookline Community Aging Network, Dr. Mamuya told of the “communication triad: patient, family, and caregivers” central to the end-of-life conversation. (You can read Dr. Mamuya’s recent column on end-of-life care here.) 
Although a few in attendance were under the age of 60, and there were one or two couples, mostly the listeners consisted of elderly women. And a significant piece of the triad was missing: the family members who will face the hard decisions, perhaps without a real sense of what their parent would have wanted.
Dr. Mamuya spoke of the problems inherent in a family’s earnest desire to “do everything” to prolong a life, when “doing everything” so often runs counter to the goal of a “good death.” He discussed advance directives, and specifically the Five Wishes, and the importance of putting such wishes into writing, and updating them every five years.
I left the presentation much as I’d arrived, concerned that physicians, as a rule, aren’t especially adept at the end-of-life conversation, and that the likes of Dr. Mamuya are exceptions to the rule.
But I also left more convinced that while the conversation with a physician is important, the place to really improve the likelihood of a “good death” is in ongoing conversation among family.
Starting in high school. Or, if it’s too late for that, starting now.

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