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Monday, Oct 20, 2014
Commentary

A conversation we all should have

Published:

BOSTON Is this what they mean by a death watch? The father of his country, a moral icon to the world, lies in a hospital bed as cameras wait outside and newspaper headlines offer a daily prognosis:

"Mandela on Life Support." "South Africans Asked to Pray for Mandela." "Mandela Remains Critical, Responds to Treatment." "It's Time to Let Him Go."

After a visit, President Jacob Zuma declares himself "encouraged" that Mandela "made a few gestures of acknowledgment, like moving his eyes." Another old prison mate, Andrew Mlangeni, 87, says it's time for Mandela's "release."

Meanwhile, reports of feeding tubes and life support abound. And behind all the public unease and pain, a fractious family plays out their ruinously contentious relationships.

The only voice we do not hear in this cacophony is Nelson Mandela's. What does this man want on his 95th birthday today? Can he say? How would he have scripted the end of his life, including four hospitalizations in six months for a recurring lung infection?

How tragic if this eloquent leader, who not only demanded justice but inspired reconciliation rather than revenge, has left his own family - and his countrymen - in emotional disarray, facing such hard decisions without his words to guide them.

Watching this saga from afar, I know that Mandela's family is by no means the only one going through this. Every day in our country, thousands of families face such crises without being able to call on the voice of the person they love. It's become a familiar drama in an era when death is no longer likely to be "natural." How do we know when medical technology extends life and when it prolongs suffering?

I have heard many similar, if far less celebrated, stories since I helped found The Conversation Project, a national campaign to encourage conversations about our wishes for end-of-life care.

Indeed, in the year since we launched, it sometimes seems as if everyone has a story to tell of a good death or a hard death. And the difference often hinged on whether the people they loved had expressed their wishes and, in turn, had those wishes respected.

This is one thing we know: Too many people are dying in the way they would not choose. Surveys tell us that 70 percent of Americans, for example, want to die at home but 70 percent end up dying in hospitals and institutions. Home may not be a place to die, but it is a "way" - surrounded by loved ones, in comfort, and in peace.

Too many survivors, for that matter, are left not just mourning but feeling guilty, depressed, uncertain of whether they have done the right thing. Done what their mother, father, husband, friend would have wanted ... if they had said.

News bulletins from the excruciating Mandela Watch hint one day that he will go home and another that he remains "critical," unable to speak or breathe on his own. Without any advance directive from the man himself, the public is asked to pray, although it is not clear what to pray for.

But the most urgent bulletin sparked by this is about the importance of having conversations early and at the kitchen table, not in the ICU. We cannot wait for doctors to begin these talks because many are untrained and uncomfortable when the baton is passed from saving lives to saying goodbye. And we cannot wait for "the right time" because it will always seem too soon ... until it is too late.

I know how hard it can be to break the silence and talk about the end of life. We founded The Conversation Project to make it easier.

Doctors repeatedly tell stories about bitter arguments between sisters and brothers over what mom would want. Mom hadn't told them when she still could.

A political hero belongs to a much larger family. Nelson Mandela will always be an iconic figure of courage.

Perhaps there is one final "teaching moment" from this superb teacher. Let all those watching and waiting, saddened by this saga, now turn and ask each other: Have you had the conversation?

Ellen Goodman is a founder of The Conversation Project (www.theconversation project.org).

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