Lessons of Terri Schiavo case still to be learned.

Byline: Todd Peterson 

Thirteen months ago, Terri Schiavo died in a Florida hospice after a seven-year legal battle - the longest-running right-to-die case ever in the United States. The protesters, politicians, preachers, judges and reporters have moved on to the life (and death) issues of their own lives.

But the bitter quarrel between Terri's husband, Michael Schiavo, and her parents, Robert and Mary Schindler, continues in two recently published books.

In "A Life That Matters," the Schindlers write that "many people believe that a living will or some form of advanced health care directive is the answer to the tragedies in life such as Terri suffered. The secular media, which consistently wrote of Terri's plight as an 'end-of-life' issue, which it was not, advised everybody to run out to create living wills. However, living wills are increasingly unenforceable. 'Futile care committees' in medical facilities across the country are overriding them every day."

Terri's parents go on to say that, "Even so, a more effective route to pursue regarding your health care wishes is to grant a reliable person - preferably not a spouse or loved one, who might be too emotionally involved - a health care power of attorney."

In "Terri: The Truth," Michael Schiavo says, "What matters is whether people learned anything that will make their life, or that of their loved ones, better. If the only legacy of Schiavo is bitterness that whichever side you're on didn't win, then Terri's loss is more tragic than I could have possibly imagined."

For Schiavo, "It's relatively easy to say that one lesson has to do with end-of-life directives, living wills, durable powers of attorney for health care - they go by many names, and each one means something a bit different. If you don't have one, and if everyone you know over the age of 17 doesn't have one, you didn't learn much from Schiavo. Our ugliest battles were fought because Terri hadn't expressed her wishes in writing. Had she done so, odds are you wouldn't know her name."

Adding fuel to the Schiavo controversy, just six months after Terri's death, the President's Council on Bioethics questioned the usefulness of advance directives in its report "Taking Care: Ethical Caregiving in Our Aging Society."

The bioethics council contended that precise circumstances at the end of life cannot be foretold; that advance directives often do not get transmitted to doctors and hospitals; and that the documents, even when available, do not have much effect on decision-making by surrogates. The report says, "Written 'choices' are imposed on individuals who are no longer free to change their minds."

Among the council's recommendations are that advance directives be ignored by surrogate decision-makers if, in their opinion, the person is no longer the same person he or she was when instructions for end-of-life care were completed.

So what does all this mean for end-of-life care in Lane County?

Local advocates for completion of advance directives include Partners to Improve End-of-Life Care - a nonprofit community coalition - our local hospitals, and many physicians in the area. In April, Partners initiated and convened a meeting of the ethics committees of both hospitals to review the status of advance directives and discuss the barriers to completion of the documents.

Even with all the media coverage of Terri Schiavo last year, recent data from patients admitted to our largest hospital showed that just 8.5 percent of patients in 2005 had an advance directive, compared with 7.5 percent in 2000-03.

No current data are available on the prevalence of advance directives completed by adults in Lane County. Nationwide, a Pew Research Center survey conducted last November found that while public awareness of living wills is now "virtually universal," only 29 percent of adults actually have completed one.

Regardless of what "side" you were on in the Schiavo case or your feelings about the President's Council on Bioethics, in our community today an advance directive allows you to exercise your right to determine the kind of medical care you want - or do not want - when you are approaching the end of your life.

Just as important as completing your advance directive is having conversations with family and friends about your wishes for care. Only you can give your loved ones the gift of knowing.

Don't wait another year. Don't wait for a life-threatening illness, or for a family tragedy. Discuss your end-of-life care wishes and complete your advance directive.

Todd Peterson is a volunteer with Partners to Improve End-of-Life Care (www.seriousillness .org/lane). Partners and 30 other local care organizations are co-sponsoring Health Care Decisions Day, from 10 a.m. to 3 p.m. May 13 at Valley River Center in Eugene. Free copies of advance directives and guidance will be available.