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Lessons from Terri Schiavo*

September 6, 2008 |  6:00 am

After a lot of political and medical hoopla in the early months of 2005, Terri Schiavo, died on March 31, at the age of 41. She was institutionalized for the final 15 years of her life after suffering cardiac arrest in 1990. Her CT scans showed severe atrophy of the brain. Electroencephalograms, tests of the electrical activity of the brain, showed nothing but flat lines. An autopsy confirmed that she had suffered irreversible brain damage.* (An earlier version of the story said that the autopsy confirmed she had been in a persistent vegetative state. We've changed the post to more specifically state the findings of the report. Click on Terri Schiavo's autopsy report to see the full results.)

Schiavo2 The very public death of Terri Schiavo began a rush on requests for the paperwork needed to order a good death with dignity. People lighted up the phone lines of places like Aging with Dignity, asking for information on living wills.

About that time, a team of researchers from UC San Francisco and the San Francisco VA Medical Center were interviewing 117 people about their end-of-life wishes and their feelings about advance directives, the legal documents which spell out people's desires. Turns out, they weren't so interested in the laws and specifics of advance directives, but they were eager to talk about Terri Schiavo.

"Around the time the Schiavo story peaked, we were making follow-up calls to the subjects in our advance directives study," Dr. Rebecca Sudore, geriatrics research at the VA center and lead author of the story said in a news release.  "Participants had little interest in discussing our study. They just wanted to talk about Terri Schiavo and what they would want done if they were in her situation. It was clear that Terri was on everyone's minds, and that we needed to delve into the impact her story had on patient's decision making about their own end-of-life care."

In a study which appeared in the August online issue of the Journal of General Internal Medicine, with a free abstract available, the researchers found that 92% of those in the study had heard of Schiavo. Among those who had heard of the case, 61% reported clarifying their own end-of-life goals as a result; 66% reported speaking with family and friends about their wishes; and 37% reported wanting to complete and advance directive.

But only 8% actually talked to their doctor about their wishes, and only 3% filled out living will paperwork. Sudore says that physicians should grab educating moments like the Schiavo case and use it to talk directly to their patients about their wishes for the end of their lives. People should also use those moments to have a good heart to heart with family members.

A good place to start is with a document called Five Wishes, legal in 40 states including California. It covers who you want to make healthcare decisions for you if you can't; the kind of medical treatment you want or don't want, such as feeding tubes; and how comfortable you want to be, including how much pain medication you'll accept. And it urges people to consider some difficult emotional questions, such as how you want to be treated at the end of life, and what you want your loved ones to know.

But it won't work if you fill it out in isolation. Talk to your family, loved ones and physicians about your wishes. Update it as the years go by. If you toss it in a drawer, your final wishes will probably be discovered too late.

-- Susan Brink

Photo credit: Chris O'Meara / Associated Press