I've been watching in amazement as lobby groups, Republican lawmakers, and right-wing "pundits" whip Americans into fear-fueled anger through outright lies. I admit to being a bit of a Pollyanna. I constantly assume that people wish to act with honor and to use words, not violence, to get their way. I'm frequently disillusioned, painfully, but keep holding onto hope for the future.
Meanwhile, I want to put in a word for good sense.
If you haven't taken a look at the Five Wishes web site, do so now (http://fivewishes.org.) this is a fine organization advocating for living wills/advance directives with a heart.
First, and most importantly:
1. You will not have YOUR wishes followed unless you communicate them clearly.
2. You will not be able to communicate them clearly once you are on a ventilator, unconscious, brain damaged, or otherwise incapacitated.
3. MOST deaths are NOT instant, where there would be no decisions to be made. Most deaths in the US are NOT at home, surrounded by family and friends, they are in hospitals surrounded by machines and tubes and extreme interventions that YOU HAVE THE RIGHT to make decisions about!
4. You will die. Don't you want as much control over that as you can reasonably get?
5. Communicate now, not later.
Whether you prefer profit-driven corporations or the government administering your health care payments has NOTHING to do with your right to make your own decisions about how you are cared for.
I cannot say strongly enough: Not only do you owe it to yourself, you owe it to your loved ones, and even to the doctors and nurses who are faced with impossible decisions, to put something in writing.
During my hospital chaplaincy internship I listened to a nurse, almost in tears, speaking about the torture of extensive, invasive, medical treatment provided to a woman who, luckily, came out of her coma long enough to say "Stop". This patient died a few weeks later, peacefully, without machines invading her every function and putting a barrier between her and her loving family.
Another patient DID want everything done that could be done, and his story was, luckily, a happy one, as he is now undergoing the months of retraining and therapy to regain use of his body and brain, and experts have hope that he will someday be able to live a full life again.
Another patient came in with a five wishes document and the social worker shared with me her joy and gratitude that she didn't have to work with quarreling family in extremity, doctors with varied perspectives on the definition of their jobs, or confused and helpless nurses attempting to guess what the patient might like. She had worked in a hospital long enough to know that "it can't happen to me" happened to people all of the time.
It doesn't matter which route you want to take: put your wishes on paper. It doesn't matter if you expect to change your mind. It is easy to change the documents later. If you don't know how to make these decisions, talk to your spiritual advisor, talk to your physician, check out the fivewishes.org web site. (The donation is worth it, they provide lots of useful information as well as the forms.)
And remind anyone who is frightened by the "deather" lies that a living will is about putting choice into the hands of the patient. It is the OPPOSITE of the rumors. Take control of your end of life decisions. Make a death plan. It is as important as a birth plan, as important as how you plan to care for your children, as important as how much you love your family, as important as how much you respect your self. Just do it.
[Update on 8/20/09 - Check out pages 425-432 on language about end of life decision-making in the current bill. at this site. You can also check at the urbanlegends.com site for more info)
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