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Don't put off important discussions about end-of-life wishes

Published Apr. 4, 2013

Seven in 10 Americans say they want to die at home. Yet 7 in 10 of us die in hospitals.

Even more of us — 82 percent — say it's important to write down our wishes regarding end-of-life care. Yet just under a fourth of us have done so.

Ellen Goodman, the former Boston Globe columnist, shared those statistics recently at a presentation about an important venture she helped create, the Conversation Project. Its aim is tough yet simple — to get people to really think about, and talk about, what they want at the end of life.

Goodman, speaking to a rapt crowd at the Association of Health Care Journalists' annual convention in Boston, got into this topic in the most personal of ways, through her own mother's death. Despite the contradictory statistics she reeled off, she spoke optimistically, saying she believes baby boomers will be the generation to change the American attitude toward death.

I hope she's right about that.

I know she's right about the need for conversation that is compassionate and loving, yet clear and unflinching.

I wasn't at all ready to lose my mother. But I was certain I knew what kind of medical care she wanted at the end of her life.

Did I know this because of careful, probing discussions? Not exactly.

Back in the 1990s, we watched my grandmother decline after a stroke. One day, she refused to eat. We understood what she was up to and honored her wishes not to have a feeding tube. My mother made my father and me promise we'd do the same for her. No extraordinary measures, she insisted.

So when my mother was in the final stages of liver disease and refused a transplant, I thought I knew what was coming.

One night in February 2002, my mother collapsed. We got her up off the floor, and she told my father to call an ambulance. I crawled into bed with her to wait for the paramedics. She told me that she was going to die.

I told her she'd be fine.

At the hospital, she lost consciousness. An emergency room doctor suggested a pacemaker for her weak heartbeat.

This sounded promising. Aren't lots of people walking around with pacemakers?

Then the ER doctor said her kidneys were shutting down. Did we want to start dialysis?

My mother's primary care doctor, a wonderful man who had spoken at length with my mother about her end-of-life wishes, arrived.

He told my father and me that the pacemaker and dialysis would only cause her pain and delay the inevitable. They'd do nothing to fix her liver.

My dad remembers his exact words: "The most we could hope for would be some time in a nursing home, and she would hate it.''

So true. Yet I agonized. Mom and I talked about "extraordinary measures,'' not pacemakers and dialysis.

Fortunately, she had been more explicit with my father and her physician. Had I been alone in that hospital, I might have panicked and ordered more treatment than she would have wanted. Despite her living will, the hospital would have been obliged to do as I said. And I would have been wrong.

My mother was taken from intensive care and placed in a quiet, dim room, without tubes and scary machinery. We sat with her over the next week. At noon one day, we all kissed her and left to get lunch. An hour later, she was gone.

Her nurse said she slipped away quietly. He told me he'd often seen people wait for a private moment to die. I thought this sounded very like my mother.

When I hear people say their parents won't talk about their end of life wishes, I think about the gift my mother gave us. And I think about how hard it was to let her go, even knowing what she wanted.

I hope you can put aside whatever reluctance you feel and click onto TheConversationProject.org. Read the personal stories from Goodman and the physicians and others leading the effort. Especially, spend some time with the many stories sent in by regular people. Some have experiences a lot like mine, full of conversation, support — and anguish. Others tell of having no idea what to do, and no one to help them figure it out.

There's a terrific "Starter Kit'' of questions to help you along.

I am sure that if the Conversation Project had been around, my mother would have sat with me and answered every question. It would have been hard. We would have argued, because we usually did. We'd certainly have cried. But we would have done our best. It's that important.

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