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.’”
Right next to these statements, the checklist gave veterans the following options: “Difficult, but acceptable”; “Barely worth living”; “Not worth living”; or “Can’t answer now.” Couldn’t the VA at least let veterans communicate that life was in fact worth living and detail what they would need to find meaning and purpose in spite of the illness or disability?
In the section entitled “Dementia,” there was a photo of a man with an anguished, despairing look on his face. In “Key things to think about” below the photo, it read, “If you had severe dementia and then became ill with a reversible illness, such as pneumonia, would you want treatment even though the treatment would not help your memory problems? What if the treatment included going to the hospital?”
From personal experience I can attest that there are many “key things to think about” that weren’t mentioned. My wife, Mary, and I had moved to the Washington, D.C. area in 2001 to help my mother-in-law, Ann, care for her husband, three-star U.S. Army Gen. Harry A. Griffith Jr., affectionately known by the in-laws as “Pop.” Pop had dementia and became fully dependent. Nonetheless, he was surrounded with love the final years of his life, and while his caregiving requirements placed huge demands on all of us, it was well worth it. Pop was a source of life and love to all of us until the end. Pop could not talk and had not for some time, but it didn’t matter. His great human dignity was neither untouched by illness nor diminished by his approaching death.
So when I read the dementia section of “Your Life, Your Choices,” I wondered why the government would suggest to a veteran like my father-in-law, who fought in two wars, that if he contracted pneumonia but could recover, he should nonetheless consider forgoing treatment.
At the bottom of page 99, listed as the sole resource for advance directives for veterans, was Compassion and Choices — that is, the former Hemlock Society.
And the lead author of “Your Life, Your Choices”? Dr. Robert A. Pearlman, M.D., chief of ethics evaluation at the VA Ethics Center. Dr. Pearlman was quoted last week as saying the following: “I am not an advocate for physician-assisted suicide. I have studied the subject and done research to try to understand what motivates people to consider it. I stay away from making any kinds of statements advocating for or against physician-assisted suicide.” Sounds good, but is it true?
Dr. Pearlman in 1996 was among a group of bioethicists who filed an amicus brief in the United States Supreme Court in the cases of Vacco v. Quill and State of Washington v. Glucksberg — the landmark cases on physician-assisted suicide. The brief argued “that the right to physician-assisted suicide should be recognized by this Court as a fundamental right.” The U.S. Supreme Court, in a 9–0 decision, disagreed.
A book by Dr. Quill (from Vacco v. Quill), Physician-Assisted Dying: The Case for Palliative Care and Patient Choice, stated on its back cover, “In this volume, a distinguished group of physicians, ethicists, lawyers, and activists come together to present the case for the legalization of physician-assisted dying for terminally ill patients who voluntarily request it.” Dr. Pearlman was one of those individuals — he and a colleague, who by chance later became the co-author of “Your Life, Your Choices,” penned the sixth chapter.
A group called “Compassion in Dying,” which eventually merged with the Hemlock Society, assisted Dr. Pearlman in his research. The group put out the following call for research subjects: “Dr. Pearlman and his colleagues are currently recruiting present and former Compassion in Dying clients. . . . Information from this study should have a substantially positive impact on the Death with Dignity movement . . . (and) the option of hastened death.” Dr. Pearlman’s advocacy of physician-assisted suicide apparently was no secret. As late as 2006, an Oregon-based proponent of assisted suicide, the group Death with Dignity, promoted a May appearance of his at the University of Washington in Seattle.
So if an individual files a public document that concludes that physician-assisted suicide “will contribute to a more decent society, [and is] more respectful of patients’ basic rights and interests in the light of realities of the modern form of degenerative death,” and if that same individual publishes a chapter in a book that promotes the legalization of physician-assisted suicide, and is in league with national organizations committed to same, how is that individual “not an advocate for physician-assisted suicide”?
Around the time that Dr. Pearlman presented his pro–assisted suicide views to the U.S. Supreme Court, he received a taxpayer-funded grant to write “Your Life, Your Choices” for the VA. This early edition, which was used as a “research tool” (the VA’s phrase), was half the size of the June 2007 edition, but evidenced the same bias. The 1997 version on page 6 asked the question, “What’s a vegetable?” and went on to say, “People have very different notions of what it means to be a ‘vegetable.’ Here are some examples: You sit in a chair and don’t do anything all day. You can’t read anymore. You’re just a body with life in it.” The “quality of life” checklists were virtually identical, as was the general thrust of the document. It came as no shock to me that the 1997 edition of “Your Life, Your Choices” also included only one resource for advance directives for veterans: the organization “Choice in Dying” (formerly known as the American Euthanasia Society).
THE BUREAUCRACY RECONSIDERS
After reading “Your Life, Your Choices,” I immediately called Tom Bowman, chief of staff to the secretary of the VA, to tell him that the document was fatally flawed. Further, having worked at the Bush White House for over four years and been a member of his senior staff, I had a good sense of how the president would react to “Your Life, Your Choices” if he knew about it.
It didn’t take the VA leadership long to act. Mr. Bowman called me on Nov. 9, 2007, and told me three things that were welcome news: First, that “Your Life, Your Choices” was being pulled off the VA intranet; second, that in a conference call scheduled for early the following week the VA Center directors would be advised to cease using the document; and finally, that the agency was going to create a work group to review the document’s appropriateness.
Unfortunately, Dr. Fox and the staff of the VA Ethics Center were far from abandoning “Your Life, Your Choices.” In fact, their resolve to promote it only hardened. The subsequent “expert panel” of 13 outsiders and five VA employees that was organized failed to include representatives from disability-rights groups, the Catholic bishops, Orthodox Jewish leaders, or others the Bush administration would routinely consult.
The panel met in person only once — in February of 2008 — and only five of the outside experts attended. A second and final meeting was scheduled for March 21 — Good Friday, no less. That decision made me wonder whether the date chosen for the meeting was meant to force attendees to choose between observing a holy day and participating in a review process.
When I protested to Mr. Bowman about the scheduling of this important meeting on a day many Christians hold sacred, his office contacted the Ethics Center, which reluctantly postponed the meeting. This further damaged relations between the Center and me, and in panel conference calls in May, the growing hostility between those within the VA defending “Your Life, Your Choices” and those outside challenging it was fully evident. After the final call, the expert panel was dismissed, and the VA Ethics Center was left to make its recommendations to Secretary James Peake, Nicholson’s successor.
Meanwhile, I had already gone to the West Wing and brought this matter to the attention of senior officials, including Joel Kaplan, the president’s deputy chief of staff, and Karl Zinsmeister, chief domestic-policy adviser to the president. I had taken this extraordinary step not because I didn’t trust Mr. Bowman — he was as capable and trustworthy as any official at the VA. It was simply that time was of the essence because the Bush term was coming to an end and it would be wrong for the VA to restore “Your Life, Your Choices” in a power vacuum caused by a lame-duck presidency.
My fears were not unfounded. In a Sept. 19, 2008, meeting with Dr. Gerald Cross, a senior official within the VA, I learned that he was as resolute in getting Dr. Pearlman’s document back in play as Dr. Fox had been. He told me flatly, “I have no problem with ‘Your Life, Your Choices,’” and that the matter was still being deliberated within the agency. He was well aware that the West Wing had weighed in.
The White House’s intervention won the day. In late October, I received word from Mr. Zinsmeister that he had been assured by Secretary Peake that “Your Life, Your Choices” would “die on the secretary’s desk.” The VA pulled “Your Life, Your Choices” in November 2008. It was not publicly offered or used by the agency for the remainder of Bush’s term.
OBAMA TAKES OFFICE
This victory was short-lived, however. When the Obama administration came in, Dr. Cross and the VA Ethics Center wasted no time. A July 2, 2009, directive put “Your Life, Your Choices” back on the VA website and in the plans of practitioners. Last week, a journalist reported that Dr. Cross and his colleagues in fact had quietly continued to work on “Your Life, Your Choices” throughout President Bush’s remaining time in office. They had played the waiting game, and had won.
Obama may be unaware of the existence of “Your Life, Your Choices” and the activities of mid-level bureaucrats in one of the agencies he governs; President Bush’s White House initially wasn’t aware, either. But he needs to learn the document’s story, and once he does, the question is primarily whether he will keep “Your Life, Your Choices.” And if he doesn’t, will he invite representatives from disability groups and religious organizations, who can speak for huge constituencies, and craft a mainstream approach that does not leave advance-care planning primarily to bioethicists, lawyers, and VA personnel?
Last month I wrote an op-ed for the Wall Street Journal exposing that the VA had republished “Your Life, Your Choices,” and that the department was barreling ahead with an online tool developed from the 2007 edition. The article led to yet more puzzling VA actions. Initially, the version they republished in 2009 was the 1997 edition — without the page referring veterans to the former Euthanasia Society of America. Then they changed course and republished it on the web with the original referral, accompanied by a notice that read, “Since March of 2009, it is the official policy of the Obama Administration not to suppress or alter information or products resulting from federal research grants.”
If that is true, perhaps the VA can explain why the June 2007 edition of “Your Life, Your Choices” is nowhere to be found on the VA site. It certainly was born of a research grant. Could it be that the reference to the former Hemlock Society and the other objectionable features previously cited make the 2007 version too difficult to defend? Indeed, if you call the VA Ethics Center today and ask for a copy of the 2007 edition they once freely handed me, you will be told that no such edition exists.
In addition, the VA now provides apparently contradictory notices on its website. One says that “Your Life, Your Choices was officially retired from use in VA in 2007.” A different statement touts that an expert panel praised it “overwhelmingly.” The VA promises that a new version of “the ‘Your Life, Your Choices’ online module” will be launched next spring.
I am not hopeful. From my experiences it seems that revision exercises at the VA are little more than damage-control efforts. Dr. Fox and her colleagues have their minds made up, and their embrace of Dr. Pearlman’s philosophy is unshakable. Since her center is charged with developing an online version it first tested in the spring of 2008 with the expert panel (based entirely on the 2007 edition of “Your Life, Your Choices”), what exactly can veterans expect? Will Congress be consulted? The American Legion and veterans’ groups? The American taxpayer?
The stakes here are great. About half of the VA’s patients are over 65, and they tend to be sicker and poorer than similar non-veterans. This owes to the added physical and emotional sacrifices they made for our country. Too many continue to pay a steep price for our freedom as they live with disabilities or are haunted by memories of war. They deserve better than “Your Life, Your Choices.”
I am hopeful that President Obama will insist that the new VA advance-care-planning tools be both uplifting and useful. Perhaps the debate over health-care reform will give him an opportunity to stress the importance of advance-care planning and the need for family discussions about health-care preferences before a health crisis erupts. Since 1996, when I founded Aging with Dignity, I have witnessed countless sad stories of what happens when individuals don’t make plans in advance. Unfortunately, about four out of every five adult Americans do not have an advance directive. So there is a vast chasm between the rights of self-determination that patients enjoy under federal law and their ability to exercise those rights.
President Obama’s health-care-reform effort has been hindered by a provision in the House bill that would have had the government pay for advance-directive discussions with doctors. This provision proved unpopular because most Americans are skeptical about the government’s being involved in the delicate decisions of when to accept or cease medical treatments in times of serious illness. They worry that the government has a conflict of interest because when a patient ceases treatment, the government saves money.
That is precisely why the “Your Life, Your Choices” approach at the VA again merits presidential attention. President Obama must permanently shelve “Your Life, Your Choices” and assure the public that the government will be scrupulously neutral when it comes to end-of-life decisionmaking, starting with those who arguably deserve it the most — our veterans.
– Jim Towey is president of Saint Vincent College in Latrobe, Pa. He served from 2002 to 2006 as director of the White House Office of Faith-Based and Community Initiatives.