Lilly Tuholske has watched with a pained and patient understanding as the case of Terri Schiavo has transfixed the nation over the past weeks.
Tuholske is executive director of the Life's End Institute: Missoula Demonstration Project, which was set up in 1996 to improve the quality of life for the dying and their families. Her business is helping people make sure their lives don't wind up like the Florida woman's - a brutal push-pull between family members that has spilled over into state and federal courts, the Florida Legislature and Congress.
"If we want to avoid the sort of heartache that the Schiavo family is dealing with, if we want to prevent that from happening, we'd be wise to take on the issue of our dying," Tuholske said Wednesday, the day a federal appeals court in Atlanta refused to order the reinsertion of a feeding tube for Schiavo. "The biggest issue in end-of-life topics is advance care planning."
Although Terri Schiavo's husband, Michael, has said repeatedly that his wife said she would not want to be kept alive by artificial means, his decision to have her feeding tube has been the subject of court battles for nearly seven years. Just this week, Congress enacted a federal law that allowed Schiavo's parents to pursue the case in federal court after repeated losses in Florida state courts.
The whole process is painful to watch, Tuholske said, because it could so easily be avoided.
"This case is an extreme example of the pain and heartache that can happen, so we have to ask ourselves if there's not something we can learn from what's happening here," Tuholske said. "Any time family members disagree, you have the potential for something like this. That's why you have to have the conversation early."
Missoulians, apparently, are having it right now. Three years ago, Life's End Institute, working with other Missoula health care groups, set up the Choices Bank. It's a community-based repository where for free people can file advance directives about how they want medical issues handled when they can no longer make those choices themselves. The Montana Legislature is currently considering a bill that would create a state registry for advance directives.
The Choices Bank, which can be seen online at www.choicesbank.org, has about 2,800 directives in it now, and they generally arrive in a monthly trickle.
"As a rule, we usually have a few a month," Tuholske said. "But in the past few months, we've been getting them by the hundreds. Recently, while the Schiavo case has been in the news, they've just been skyrocketing."
That's good news, Tuholske said, because each directive ensures that a person's life won't end up as the pitched, bitter battle Terri Schiavo's life has become.
"If you take the time to talk about these things now, when someone is not gravely ill, it's much easier to make good decisions," she said. "Of course, we want people to review those decisions every year, but the important thing is that we start talking about them before it's too late."
Advance directives take two forms, Tuholske said: the living will and the power of attorney for health care. Generally, the living will deals with three issues - resuscitation, artificial nutrition and hydration, and use of a ventilator.
"People often add a lot of other stuff in there, like what to do about pain, who they want to have around when they die," Tuholske said.
The power of attorney for health care names an individual who "can speak for you when you can no longer speak for yourself," Tuholske said.
"That only comes into play when you can't speak for yourself," she said. "If you can speak for yourself, you can direct your own care."
Speaking now, Tuholske said, is where the solution to not being able to speak later begins.
"People say, 'Oh, I don't like to talk about this stuff,' but in the next breath they're talking about it very passionately," she said. "We have really strong opinions about death and dying. Most of us think - and research bears this out - that we don't want to be connected to machines. We want nature to take its course. But if we don't talk about all that before the need arises, we can be too late."