Health & Fitness

Wishing for the right to make that final exit

HealthHuman InterestChemicalsPharmaceutical IndustryEuthanasiaParkinson's DiseasePolitics

Colleen Kegg hasn't worked out the details of her exit plan yet. But about one thing, Kegg is clear: When she can no longer feed herself or go to the bathroom without assistance, she will take steps to end her life. A rare and incurable neurological disease is gradually stealing the things the 60-year-old Santa Barbara-area resident lives for, and she wishes a California physician could legally prescribe life-ending medication, as doctors can in Oregon, Washington and Montana. Instead, she'll have to find another way.

"I know I can stop eating and drinking," Kegg told me one evening in her sister's home, her speech already slowed by corticobasal degeneration, a condition somewhat similar toParkinson'sandLou Gehrig's disease.

To Kegg and her family, it seems unjust that how she must die is dictated in part by law, and influenced by religious convictions and social mores she doesn't share. Starving herself could make death drag out for a couple of weeks, while just north of the state border, people can say their goodbyes and leave on their terms, quickly, comfortably and peacefully.

It's not that California hasn't had its own shots at offering aid in dying, which, by the way, is now the preferred language among supporters of what has long been referred to as assisted suicide. Californians defeated a 1992 "death with dignity" initiative, 54% to 46%, and two "compassionate choices" bills between 2005 and 2007 died in the state Legislature. Former Assemblywoman Patty Berg, a Catholic who lives in Eureka and wrote the bills, said religious leaders and some physician groups lobbied against expanding end-of-life choices, despite a 2006 poll that said 70% of Californians believed incurably ill patients should have a legal right to life-ending medication.

Since I began writing about these issues in July, when my father took ill, I've had readers argue that how and when we die is not for us to decide, but is in the hands of a higher authority. I respect that view, but I've heard from far more readers who make a humane argument for options to avoid lingering and painful deaths. Many say that once they reach the point where they are simply being kept alive — as opposed to living — they want to have the choice of ending their suffering.

Bill Sanford, a retired Methodist minister who lives near Merced, sees no conflict between his Christian faith and his desire to end his life when his advancing Parkinson's disease further limits him and puts a burden on his loved ones.

"We're fiddling with the date of our death throughout our lives, as to whether we use drugs or alcohol and tobacco, whether we exercise right," said Sanford. He believes that hastening death can be a "well-considered, rational choice." For himself, he said, he has no desire "to pour resources into a jalopy that has no chance of being fixed."

Both Sanford and Kegg have discussed their options with Compassion & Choices (http://www.compassionandchoices.org), which offers end-of-life counseling nationwide, including advice on what combination of legally obtained medication, properly self-administered, can hasten death. Sanford said he isn't yet ready to stop living, but when he is, he may well use such a medicinal "cocktail."

Dick Wesley, a Seattle intensive-care physician who has Lou Gehrig's disease, had a better option. Because he lives in Washington, he was able to simply have his doctor write a prescription for him under the state's death with dignity law.

"As a physician, I've seen way too many people who were kept alive with no quality of life, simply because it was possible to keep them alive," said Wesley. Already, he said, his disease has left him unable to walk or brush his own hair. "When I can no longer read and no longer talk, then I doubt life will be worth living."

Wesley said he got the prescription not knowing whether he would someday use it. If he dies suddenly, so be it. But under another scenario, he will get his prescription filled, call the family together and say his goodbyes.

In Oregon and Washington, the number of people who obtain life-ending medication is far greater than the number who actually use it. Many, like Wesley, seem to want the comfort of knowing they can take their own lives when that seems like the best choice, without having to play amateur pharmacist or inhale automobile exhaust or put a gun to their heads.

Kathryn Tucker, legal director for Compassion & Choices, says her group hasn't given up on pushing to give Californians access to aid in dying, but she said it's more likely to happen through legal action than legislation.

But that probably won't happen soon enough for Colleen Kegg. A former mechanical engineer for theU.S. Geological Survey, she used to slog through streambeds measuring river flow and get hoisted onto oil rigs off Santa Barbara to conduct inspections. She still loves to travel the world, and she had until recently been taking hours-long bicycle rides and bracing ocean swims. When I met with her last week, she was preparing for a trip to Ecuador with her husband, Bob, daughter Katie and niece Sally. She was excited about it, and trying to focus on living rather than preparing for death. But she knew this could be her last trip.

In 2007, Colleen and Bob lost their son, Jeff, to cancer. He was 22. The thought of now losing his wife brought Bob to tears as we sat at the dining room table, although he strongly supports his wife's right to make the decision.

In preparation for what lies ahead, Colleen collected her thoughts in a letter last month that she sent to Compassion & Choices and has shown to her family.

"My ability to speak is already greatly impaired," she wrote, "and in the later stages I will be unable to communicate my wishes in any meaningful way. I want to clearly document my wishes so that they may be carried out to the extent possible and to avoid any possibility of legal or emotional trouble later. I would like it to be known that I have no intention of living life when real life is over."

She said her thoughts on death and dying have been informed by the loss of loved ones.

"I absolutely want to live well and happily as long as possible. But I am a strong believer in the reality that life is about quality, not quantity."

steve.lopez@latimes.com

To read more of Steve Lopez's columns on this subject or to share your stories about the end of life, go to latimes.com/lifeanddeath.

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