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I never want people fighting
over whether I live or die. I never want my family wracked by
questions about what to do when I'm no longer able to tell them. I
never want religious zealots chanting my name and telling me I don't
have a right to die with dignity. And I sure as hell never want a
self-serving politician playing games with my life and death. In short, I never want to be like Terri Schiavo. I wept for that poor woman and the way her final days tore this nation to shreds. I side with those who say Congress and the president had no business playing this for political points - they injected themselves to pander to the religious right, and all polls showed that most Americans shared my disgust at their crass actions. If anything good came of that political gamesmanship, it's that it gave America a clear picture of what it would be like to live in a nation run by religious zealots. I couldn't watch that drama unfold without the word "Taliban" coming constantly into my mind. And, caught in the middle was a woman who never knew anything about any of this. Every single time I saw the video of Terri in her hospice bedroom - her mouth open, her eyes glazed over, her limbs withered - I imagined how much that pretty woman would have hated anyone seeing her that way. The pictures of Terri when she was still Terri - before the heart attack that left her in a permanent vegetative state for 15 years - showed a smiling, happy woman who obviously took care of her appearance. She didn't deserve this indignity. Ask anyone - woman or man - if they'd want the world to see them at their absolute worst, and you know the answer. It's the same answer I'd give for myself. So, I want to be sure that I am never forced into that position, and that my family never has to deal with it. As a result, I've made out a "living will" that specifies the kind of end-of-life care I want. I want "comfort only," meaning I want no medical procedures to artificially delay my death. I've signed a "pre-hospital medical care directive" that says I do not want to be resuscitated if I can't sustain life on my own. I've also declared that if I'm brain dead or in a vegetative state, nothing will be done to keep me alive. I'm sending copies to the Secretary of State's office to be filed in the Arizona Advance Directive Registry. Still, I'm not sure I've done enough to be certain that anyone who needs to know, knows what I want. So, I want Arizona to adopt a simple plan - one that's basically foolproof. And I've got the backing of Billy Shields and the Phoenix firefighters - they're even ready to help fund the plan. "It's so simple, it's brilliant," Shields said when I called him with the idea. This is not a new idea. It's not an original idea. It is being borrowed from an Ohio bedroom community of 23,500 known as Hudson. And I know about it because my friend, Linda Weaver, used to live in Hudson. She mentioned it to me one Sunday morning over breakfast at Katz' Deli, and I was taken with its obvious potential. It's called a "Cold Pack," and it's pretty simple: It's a plastic Ziploc bag containing copies of medical records for each member of the family - allergies, blood type, known medical problems, prescriptions, doctors names… that sort of thing. For my plan, I'd expand the Cold Pack to also include copies of living wills and powers of attorney for end-of-life care. It got its name because it's kept in the one place that you can find in everyone's home - the refrigerator. When paramedics enter a home on an emergency call, one goes to the patient and the other goes to the refrigerator to look for the Cold Pack, which is taped to the wall on the hinge side. "I love this idea, because this is precisely the problem we have," Shields says. "We come into a home in an emergency situation, and have no idea what the patient wants. If somebody is not there with the forms and to tell us what's going on, we don't know. We can't go looking through someone's house to find the information that we need." But, if they could go to the fridge - if family members or friends would know that that is where the vital information is kept - a lot of mistakes could be avoided. "I'll help lead the cause," Shields offered. "We'll even donate money from our charity to help fund it." When you think about it, though, it really shouldn't take much money. Ziploc bags can be bought wholesale - or can even be donated. The Red Cross probably already has the kind of medical forms that should be inside the Cold Pack. The forms needed to create a legal living will are available for free from the Arizona Attorney General's Office. And the Secretary of State's Office has the directory where residents can register their end of life wishes. You can even get a wallet-sized "Notice in Case of Accident or Other Emergency" that alerts officials to the fact that you've signed a living will. The small card has a place asking: "Please contact the following for a copy: Name, telephone." I'm hoping someday there will also be a box to check that reads: "Information in my refrigerator." Hudson, Ohio, created the Cold Pack program about 20 years ago, soon after its mostly volunteer Emergency Medical System was organized. Unlike Phoenix, where paramedics are part of the fire department, in Hudson, they are a "third service" of first responders, along with police and fire departments. Bob Audet runs the EMT program in Hudson, and he can't say enough about how valuable the Cold Pack program has been over the years. The packets, with a red cross printed on them, are given away at health fairs and nursing homes, carried on ambulances, and are available to anyone in the public requesting one. His Cold Packs focus on medical information, although he's thought about expanding it to living wills - particularly as the nation becomes more aware of this issue. And he says he's always been amazed at how little most people know about their own medical conditions and medications. "We have some people who say their doctor knows their prescriptions, but they don't," he explains. "And then we have the 'MTWTHFSS' people - we walk in and they hand us the weekly medication box, and we have no idea what's in the box, and neither do they." "The hardest part is keeping the information in the Cold Pack updated," he says. In Ohio, Audet says, they've encouraged people to update their Cold Packs as they change their clocks for Daylight Savings Time. That will not work in Phoenix, of course, but Audet suggests that we find some significant date for annual updates. He says the media in Ohio have been "very supportive" of Cold Packs, and his department is now working with a wellness center that wants to spread the plan around the country. "We have only minutes to make decisions in emergencies," he says. "If there is no clear directive not to treat, then we treat. If there is not something to say 'don't do it,' we have an obligation to do it. So there's two things we need to know: Are there advance directives, and if so, where are they? We're very happy with the Cold Pack program." Arizona leads the country in few things to be proud of, but this is one area where we are way ahead of the game. The Attorney General's Office has created the Life Care Planning Packet that includes forms to help people make "legally binding decisions regarding your future health care," Attorney General Terry Goddard notes in a welcoming letter to the plan. "Perhaps most importantly, the Life Care Packet allows you to make your friends and family aware of your choices and wishes," Goddard adds. The forms are now available online at ag.state.az.us under the heading "Life Care Planning." You can also call the Attorney General's office at 602-542-2124. The Secretary of State's office also has the "Advance Directive Registry," created by the Legislature, that lets citizens file their end-of-life wishes. The registration forms are available online at azsos.gov, or by calling 602-542-6187 or 800-458-5842. The registered forms are scanned and stored confidentially, with each person deciding the relatives, friends or others who can have access. The registry sends a wallet card with an identification number and password allowing care providers to access your documents in an emergency. In addition, I think we should copy all of those documents and registration forms, put them in Ziploc bags, and store them in our refrigerators. I'd like to see a statewide contest for Arizona school children to create catchy slogans to sell the idea, and I know the state's media will get behind it. With the firefighters on board, half the battle is already won. There is no reason whatsoever that this simple idea shouldn't work. And just think of all the heartbreak it would prevent.
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Jana Bommersbach © 2003 - 2008
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jana@janabommersbach.com
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