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Home | Opinion Exchange

Jennifer Imsande: The hardest step is the first one

By JENNIFER IMSANDE

Last update: November 16, 2008 - 9:16 AM

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I HAVE THIS SISTER WHO SHAMES ME WITH HER ADVANCED SKILLS AND TOUGHNESS. She requires no sleep, and she understands mystifying things like home wiring and sewing skirts on the bias. She's trained as an engineer and as a nurse and has no tolerance for people who fear toxic chemicals or the common communion cup either. I used to think that she feared nothing. Then I saw her cry one day after a cardiac patient died on her shift in the ICU. His family had asked for -- had needed -- her assurance that he died peacefully. She couldn't give it. Rarely does someone die peacefully in the ICU, she told me later. ¶ And I remembered how much my family had teased her over the last year. Whenever we were together, she'd choose some moment -- usually when we were tanked from cheap wine -- to bring up her health-care directive.

Oh, God, we'd groan.

She would persevere. She doesn't drink as much as the rest of us. She could persevere.

She'd tell us how much she feared having her loved ones try to prolong a life that shouldn't be prolonged. She feared becoming a burden on her husband and children. And on society.

The decisions seem easy now, she'd say. But they get so difficult then. She said she'd watched too much distress in the ICU. The financial cost is too high and the emotional cost even higher, she said. Families just can't let loved ones go.

She tried to tell us how it gets at the end.

If she had little hope of being able to significantly care for herself upon recovery, she didn't want heroic medical treatments to prolong her life. Earlier is better than later, she said, when it comes to withdrawing life-support care.

We'd say: Define "significantly" able to care for yourself.

And she'd walk through the neurological, respiratory, urinary, cardiac and digestive conditions that would demand a kind of dependency that she could not tolerate.

And one of us would say: Well, how will you recognize neurological dependency?

And she said: If I am unable mentally or physically to read a book upon recovery.

My brother responded: The family would've pulled the plug on me years ago. At a routine physical.

And we laughed. Hard.

SHE SPELLED OUT the physicians and surgeons she didn't want to assist her. And the hospitals where she wouldn't want to receive care.

We asked: What about animal therapy? (She hates dogs.)

Patiently, she said she did not wish to participate in any form of animal therapy. It's in the directive.

We chortled, pleased at the joke.

SO SHE'D PUT IT AWAY to try again later. She knows that most people don't complete or share health-care directives because they don't like thinking about and talking about death. They avoid it or make jokes. They assume that the family already knows what they want. They don't get around to it.

AFTER THAT DAY, I finally asked to read her health-care directive.

She had written, "If my children's, parents', or siblings' wishes for their own end-of-life are different than mine, I will respect their wishes and advocate for them if they are unable to do so for themselves. If I am called upon to take care of them on a long term basis in the future, I will be honored and will gain fulfillment from doing so."

Now I cried.

So I got the information about the free forms that the state provides. The ones where you only have to fill in the blanks.

And I know that the forms are really helpful, and that you can get them from your doctor, attorney, or the state of Minnesota (www.health.state.mn.us or 800-333-2433).

And I know that I don't want to end up like Terri Schiavo.

But it's been a couple of weeks now, and I still haven't done it.

Jennifer Imsande is associate director of the Masters Program in Advocacy and Political Leadership at the University of Minnesota, Duluth.

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