Documentary Dedicated To Improving The Way We Die

Posted: June 03, 1996

Members of the Abril family hover over their father, who is being kept alive by a respirator.

``It's in our hands,'' says a son, ``whether he will live or not.''

``It's over, right?'' asks another son, his question more of a plea. ``It's over, right? There's nothing we can do for him?''

``If we remove the respirator, it will seem like we are killing him,'' anguishes a daughter. ``We will be burdened by guilty feelings, that we took him off.''

The anguish of the Abril family comes at the beginning of a powerful and timely one-hour documentary airing at 10 tonight on Channel 12. WHOSE Death Is It, Anyway? The documentary was produced by Choice in Dying, an advocacy group based in New York devoted to improving the way Americans die. The documentary was funded in large part by Conrail.

The members of the Abril family would love to know what their father, Juan Abril, would want, but he lies unconscious, felled by heart surgery, a severe stroke, and now a kidney infection.

And that of course is a big point of the documentary: Americans don't talk about dying, not doctors, patients or families, all too often until it is too late.

``My sister was thinking about creating a living will before the surgery,'' one daughter meekly tells the doctor, ``but she didn't want to jinx it.''

For Juan Abril's wife, the agony is the worst. She worries about her own soul as well as her husband's.

``I don't know, I really don't know,'' she sobs into the arms of a priest. ``How will I deal with the situation? Oh God, I really don't know what will happen to me.''

The show bounces back and forth from hospital beds and homes of dying patients to a New York television studio, where an audience of doctors, nurses, patients, family members and clergy bluntly discuss the lousy way we die in America today and some ways to improve it.

The bottom line is you don't need to call Jack Kevorkian. There is a better way.

A big push is made for living wills and advance directives. But the documentary shows that even they are not enough, since hospitals sometimes ignore them or are not aware of them.

One nurse featured in the documentary, Maria Rodriguez, is so determined to have her wishes obeyed at the end of life that she tattooed instructions on her belly, and bared them for the world:

``NO CODE,'' her navel reads. ``Care and comfort only.''

``I don't expect people to go out and get a tattoo,'' she explains. ``But wills vary from state to state. And papers only are good if they are presented at the right time.

``How many of us have that piece of paper with us? I realized if it was on a part of my body, a part of me, I'm going to have it with me all of the time.''

The documentary is intended to encourage viewers to sit down - before they are faced with a terminal illness - and question the way they would like to live their final days: How do they want pain handled? Where do they want to die? Do they want heroic measures? Do they want machines to help them breathe?

The program is hosted by ABC-TV medical correspondent Nancy Snyderman, with the on-location segments reported by Betty Rollin of NBC.

There are many moving and powerful moments in the show.

At one point, a woman dying of cancer, with only months to live, assembles her entire family, even her grandchildren, in her home and tearfully reads her living will and tells them exactly how she wants to end her life.

In another, an old woman recalls how the hospital disregarded her husband's living will and resuscitated him into 18 months of living hell.

One man, dying from ALS, says that even if you articulate your wishes in advance, those wishes change as you approach the end.

``You don't know what you're going to do until you get there,'' he says. Adds his wife: ``Where that line is when you say you've had enough keeps shifting.''

WHOSE Death Is It, Anyway? is targeted at women, since they are the ones who do most of the caregiving at the end of life and often make the hardest decisions.

The ultimate message is talk, talk, talk and take control.

Americans can die well and with dignity. But this will only happen if people fight for it - and work to change the system.

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