If President Obama wants to better understand why America's discomfort with end-of-life discussions threatens to derail his health-care reform, he might begin with his own Department of Veterans Affairs (VA). He will quickly discover how government bureaucrats are greasing the slippery slope that can start with cost containment but quickly become a systematic denial of care.
Last year, bureaucrats at the VA's National Center for Ethics in Health Care advocated a 52-page end-of-life planning document, "Your Life, Your Choices." It was first published in 1997 and later promoted as the VA's preferred living will throughout its vast network of hospitals and nursing homes. After the Bush White House took a look at how this document was treating complex health and moral issues, the VA suspended its use. Unfortunately, under President Obama, the VA has now resuscitated "Your Life, Your Choices."
Who is the primary author of this workbook? Dr. Robert Pearlman, chief of ethics evaluation for the center, a man who in 1996 advocated for physician-assisted suicide in Vacco v. Quill before the U.S. Supreme Court and is known for his support of health-care rationing.
"Your Life, Your Choices" presents end-of-life choices in a way aimed at steering users toward predetermined conclusions, much like a political "push poll." For example, a worksheet on page 21 lists various scenarios and asks users to then decide whether their own life would be "not worth living."
The circumstances listed include ones common among the elderly and disabled: living in a nursing home, being in a wheelchair and not being able to "shake the blues." There is a section which provocatively asks, "Have you ever heard anyone say, 'If I'm a vegetable, pull the plug'?" There also are guilt-inducing scenarios such as "I can no longer contribute to my family's well being," "I am a severe financial burden on my family" and that the vet's situation "causes severe emotional burden for my family."
When the government can steer vulnerable individuals to conclude for themselves that life is not worth living, who needs a death panel?
One can only imagine a soldier surviving the war in Iraq and returning without all of his limbs only to encounter a veteran's health-care system that seems intent on his surrender.
I was not surprised to learn that the VA panel of experts that sought to update "Your Life, Your Choices" between 2007-2008 did not include any representatives of faith groups or disability rights advocates. And as you might guess, only one organization was listed in the new version as a resource on advance directives: the Hemlock Society (now euphemistically known as "Compassion and Choices").
This hurry-up-and-die message is clear and unconscionable. Worse, a July 2009 VA directive instructs its primary care physicians to raise advance care planning with all VA patients and to refer them to "Your Life, Your Choices." Not just those of advanced age and debilitated condition—all patients. America's 24 million veterans deserve better.
Many years ago I created an advance care planning document called "Five Wishes" that is today the most widely used living will in America, with 13 million copies in national circulation. Unlike the VA's document, this one does not contain the standard bias to withdraw or withhold medical care. It meets the legal requirements of at least 43 states, and it runs exactly 12 pages.
After a decade of observing end-of-life discussions, I can attest to the great fear that many patients have, particularly those with few family members and financial resources. I lived and worked in an AIDS home in the mid-1980s and saw first-hand how the dying wanted more than health care—they wanted someone to care.
If President Obama is sincere in stating that he is not trying to cut costs by pressuring the disabled to forgo critical care, one good way to show that commitment is to walk two blocks from the Oval Office and pull the plug on "Your Life, Your Choices." He should make sure in the future that VA decisions are guided by values that treat the lives of our veterans as gifts, not burdens.
People, you have no idea how lonely and isolated a prolonged stay in a government medical facility is. I spent several months visiting Deborah Leigh when she was hospitalized in the VA with a renal infection. Many of the veterans there, especially the olders ones, can go weeks or months without a visit from family or friends, or receive no visits at all. Many of them are facing the prospect of spending the rest of their lives in VA care. For too many of them the only human contact they have is the VA staff... who are now handing them this pamphlet. This is beyond obscene.
