Pres. Barack Obama needs to ask the U.S. Department of Veterans Affairs (VA) why its end-of-life planning tool, “Your Life, Your Choices,” deserves circulation throughout its vast health-care system. Despite the controversy that has angered many veterans and enveloped the VA since the “your life is not worth living” message in the document was exposed last month, the VA continues to make it available and has announced its plan to launch an online version of it in the spring of 2010.
Why did the VA decide to use “Your Life, Your Choices” in the first place, and why is it stubbornly refusing to listen to the American Legion and other organizations that have asked the agency to pull it and start over? At a time when President Obama’s push for health-care reform may be jeopardized by a seemingly innocuous provision on advance-care planning, the story of “Your Life, Your Choices” turns out to be a cautionary tale worth telling.
I discovered the existence of “Your Life, Your Choices” in September 2007 by accident. Then–VA secretary Jim Nicholson had arranged a meeting for me with officials from the VA National Center for Ethics in Health Care so that I could share with them a living will I created — “Five Wishes” — and see if the agency headquarters might be interested in using it. (A living will is written instructions on the kind of medical care you want when you can’t speak for yourself. Together with a form designating a person who has legal authority to speak for you when you can’t speak for yourself, it constitutes an “advance directive.”)
My background as a lawyer who once lived as a full-time volunteer in Mother Teresa of Calcutta’s home for people with AIDS had enabled me to develop “Five Wishes.” In less than a decade it had become America’s most popular living will, with over 13 million copies in circulation throughout the country. It seemed like it might be of use to these top VA officials.
It wasn’t. “Five Wishes” was dead on arrival with the VA’s top advance-care-planning official, Dr. Ellen Fox, director of the Center for Ethics in Health Care. She told me that the agency had completed the regulatory review process for a different document, “Your Life, Your Choices,” and was about to unveil it as a system-wide online offering on MyHealtheVet. She handed me this 100-page document, which was marked as “Second Edition, June 11, 2007.”
‘IF I’M A VEGETABLE, PULL THE PLUG’ My first reaction was: How in the world would senior citizens navigate a document that was nearly an inch thick and contained dozens of pages of worksheets? But after I left the meeting and carefully read “Your Life, Your Choices” for the first time, I concluded that the unmanageable size of the document was the least of its defects. Taken as a whole, “Your Life, Your Choices” seemed to subtly steer individuals toward refusing care.
Page 8 asked, “Have you ever heard anyone say, ‘If I’m a vegetable, pull the plug’? What does ‘being a vegetable’ mean to you? You can’t take care of yourself now and you’ll never be able to in the future . . .” Centered on the page were two photos of middle-aged men. One was of an unshaven man named Mr. Santini, with a furrowed brow and a quote next to him that read, “Life is sacred and has meaning, no matter what its quality.” The other photo was of a smiling, handsome man named Mr. Johnson, and his quote said, “I’ve lived a long and full life. I don’t want anything done just to keep me alive.”
Then came case studies that sought to illustrate complicated critical-care issues. The one on page 11 told the story of Tom Rice, a 29-year-old who was hit by a car while riding his bike, went into a coma, and “would need help taking care of himself and would not be able to live alone.” It ended with Tom’s parents stopping treatment for him. Page 13 provided the case of Flora Parks, who had suffered a minor stroke that made her worry about a recurrence. The story ended with Flora saying, “I’d rather die quickly than suffer a long, slow decline.” While there was some effort to balance the presentations — the “personal and spiritual beliefs” section seemed even-handed, and one terminal-illness vignette involved a wife’s sending her husband to the hospital for treatment — it seemed the government was sending a message that cessation of treatment usually was the better path.
This point became dramatically clearer when “Your Life, Your Choices” pivoted to a “Quality of Life” checklist. A number of possible scenarios were presented, such as “I can no longer walk but get around in a wheelchair”; “I can no longer contribute to my family’s well being”; “I live in a nursing home”; “I am a severe financial burden on my family”; “I can no longer get outside — I spend all day at home”; and, “I cannot seem to ‘shake the blues.’”