As Epicurus noted centuries ago, the art of living well and dying well are one.

Last month, ELDR's poll showed people want choices in how they die. A whopping 81.5%, to be exact, believe it is up to an individual—not government, not church and not some 3^rd party—to decide about life's end.

No surprise to me. But it was gratifying, because since 1994 I've devoted my life to end-of-life choices. That's when I co-authored and campaigned for Oregon's trail-blazing Death with Dignity Act. Now I lead Compassion & Choices, a national organization aimed at improving care and expanding choices at the end of life.

It's a big job and we're the only ones doing it. We litigate under-treated pain cases as elder abuse. We fight to put teeth in advance health care directives. We campaign for laws that empower people with knowledge and opportunities to choose. And our End-of-Life Consultation program gives people information and confidence to make their way through some pretty tough decisions. We never charge a dime for the consultation and support we provide to our clients and their families all over the nation.

People want to decide for themselves when a long downhill course of terminal illness is no longer living—it's prolonged dying. They want a good quality life as long as humanly possible. They are willing to tolerate a lot of suffering if they can still do a few worthwhile things and express their love of family and life. But if life becomes just suffering, with no joy and poor bodily function, many would like the assurance of a peaceful, humane way out.

We didn't used to have this problem. Devastating, untreatable diseases took lives quickly. A cancer diagnosis rarely lasted more than a year. Heart and lung disease had few effective treatments. Pneumonia was called "the old man's friend" because without antibiotics, it often brought the final release to a frail, weakened body.

No more. With the latest chemotherapy, radiation and bio-engineered treatments, people can carry on a valiant fight against cancer for twenty years or more. Transplanted and artificial organs work almost as well as the originals.

Even with no reasonable expectation of improvement, terminal patients often find themselves in intensive care, hooked up to tubes and machines, enduring one invasive technology after another to forestall the inevitable. Most people say if they could choose where to die, it would be at home. Yet 80% die in acute care hospitals.

Something is seriously haywire. Probably the most haywire we saw things was a few years ago when a Florida family fought a fierce, vitriolic public battle about their wife and daughter, Terri Schiavo. Schiavo had been in a vegetative state over a decade, and her husband believed, if she could decide, she would not want to be kept alive artificially. In last month's survey, 93.6% answered that would be their decision as well.

Politicians disagreed. And we were treated to the spectacle of Florida officials, Congress, and even the president, pressing government into the private, personal, gut-wrenching deliberations of one family. Shock was the most common reaction, and horror that a personal tragedy could be so politicized. A wise and courageous judge finally over-ruled the politicians and Ms. Schiavo was allowed to die.

This was the turning point for a nation. People everywhere now realize how precious, and fragile, is the right to remain an individual, and die in accordance with the beliefs and values of a lifetime. They have seen their government over-reach terribly and know they must protect themselves and their families.

I plan to use this blog to help people do just that. I hope readers will get information, get angry, and get prepared. We'll not only cry together, but laugh together, as well. Because the most important things to pack for the end-of-life journey are knowledge, love and a gentle sense of humor.

Be careful out there, and love one another.

–Barbara Coombs Lee is President of Compassion & Choices, a nonprofit organization dedicated to improving care and expanding choice at the end of life.

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posted at 06:14:17 PM