Does the VA Nudge Seniors Toward Death?

September 2, 2009 at 3:13 pm (By Amba) (, , , , , )

I didn’t buy the “death panels” rhetoric, but based on this, I’m reconsidering.

Note that neither Hot Air nor the WSJ actually links to the VA booklet.  When you do, the first thing you get is this disclaimer:

Your Life, Your Choices was officially retired from use in VA in 2007, and an expert panel was convened to review and comment on an online module version of this document that was under development at that time.

Ha!  So there are “panels.”  Expert panels.  Doesn’t that make you feel better??  God, I’m so sick of the fucking “experts.”  What does that word cover anyway?  Psychologists?  Economists?  Are there any combat-disabled veterans on the panels?  The only “experts” on this subject are the patients and families who’ve been there, and the good doctors and nurses who’ve been in the trenches with them.

The Your Life, Your Choices online module is currently being revised based on suggestions from the expert panel members and from chaplains representing eight different faith groups.  The revised online module is scheduled to be released on the My HealtheVet Web site in the spring of 2010.

Please note that portions of this document have been interpreted by some to be negative in tone and insufficiently balanced. The revision process is addressing these concerns.  Also note that some of the links contained in the document are no longer active.

Hey, wait, I found the Expert of Experts!  His name is Robert A. Pearlman, he’s the author of the VA booklet, and in this photo at least he bears an uncanny resemblance to Tim Geithner.  (Purely rational Vulcans all?)  He studied ethics at Harvard.  How much more expert does it get?

He received post-residency training as a Robert Wood Johnson Clinical Scholar, a Fellow in the Ethics and the Professions Program at Harvard University, and a Faculty Scholar in the Project on Death in America. He joined the [National] Center [for Ethics in Health Care, apparently part of the VA] in the summer of 2000. His interests and expertise pertain to empirical research in clinical ethics (especially end-of-life care) and organizational ethics. His research has explored euthanasia, the role of quality of life in decision-making, the validity of life-sustaining treatment preferences, medical futility, advance care planning, physician-assisted suicide, and relief of patient suffering. He is the author of two books and over 100 publications in medical journals and book chapters. His most recent book, entitled Your Life, Your Choices, is an interactive workbook to help patients and family members with advance care planning. Your Life, Your Choices will be available to veterans through MyHealtheVet in 2007.

Forget Ezekiel Emmanuel:  is this the government’s Dr. Death?

But now I’m really confused.  The preface to the online booklet now says “Your Life, Your Choices was officially retired from use in VA in 2007.”  Made available and retired in the same year??  Or am I misunderstanding?

Here’s Jim Towey, creator of what he calls “the most widely used living will in America,” “Five Wishes” (not unlike Your Life, Your Choices, “introduced in 1997 and originally distributed with support from a grant by The Robert Wood Johnson Foundation”), being vague about exactly when the workbook was instated (I’m trying to figure out whether the dates need to be jiggered to make Democratic administrations solely to blame for the thing and Republican administrations the blameless heroes who questioned it):

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 [VA “Fact Sheet” rejoinders that it is “not an advance directive or a 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. [VA “Statement” says “The document was developed under a federally funded research grant over a decade ago and in 2007, the Veterans Health Administration convened an outside panel of experts to review the tool and assess its merits. Overwhelmingly, the panel of experts, which included a diverse group from the faith based and medical communities, praised ‘Your Life, Your Choices’ and endorsed 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.

Here’s a perfectly decent handout on advance directives which, however, refers people to Your Life, Your Choices at the end.

So the booklet was “developed” with federal money during the Clinton years; it’s unclear when the VA began using it; and it’s unclear what happened to it in 2007 and whether its use has now been reinstated without input from “faith panels.”  (The booklet encourages its users to consult religious advisers.)

Looking at the booklet, it certainly hits you right between the eyes with some gruesome though not unrealistic scenarios, and there is certainly a none-too-subtle bias in the discussions against taking heroic measures — or even antibiotics — to prolong a life clearly near its natural end:

Chris Larsen [age unspecified] never told his family what kind of medical measures he’d want if he became critically ill.  He is in a nursing home after having suffered a severe stroke 9 months ago.  He is paralyzed and unable to take care of himself or communicate in any way.  Now he has pneumonia and will probably die unless he goes to the hospital to receive intravenous antibiotics.  He also may need to be  on a breathing machine for a week or so.  The doctor says that his chances of returning to normal are remote, but that he has a fair chance of getting over the pneumonia.  His family members disagree about what they should do. His son Bill says, “Dad was never a quitter.  He’d want to fight to the very end, as long as there was the slightest hope.”  His daughter Trudy disagrees. “Sure, Dad wasn’t a quitter, but he wanted to die naturally—he would be horrified to be kept alive this way.”

In fact, Trudy’s views were the closest to Mr. Larsen’s true opinion. But the family never had a way to find this out. They treated his pneumonia and he lived another year in the nursing home without recovering his ability to communicate or care for himself.

This is on page 5.  It’s offered as an example of why you need to think and talk about these issues while you can.  The trouble with such hypothetical scenarios is that not only do people differ in their values and beliefs, but each case is unique and often unpredictable in its particulars.  After we got to Chapel Hill just about exactly three years ago, J declined both mentally and physically, until in December 2006 he ended up being taken to the hospital with pneumonia.  He certainly would have died if he hadn’t been treated.  His doctors and I agreed that a DNR order (do not resuscitate, i.e. no ventilator or defibrillator) at least was appropriate, and a woman resident asked me if I didn’t think it was time for “placement outside the home.”  However, IV antibiotics was all it took to resurrect J — in a matter of hours, he went from virtually comatose to sitting up in bed talking coherently on the phone to my mother — and it turned out that most of his steep mental decline over the autumn had been due to incipient pneumonia, not accelerating dementia.  The rest is history.  If he were in a late stage of neurological disease, contracted in a fetal position, uncommunicative, and uncomfortable, IV antibiotics would not be appropriate.

(No, he doesn’t have a living will.  Probably the best course for him is to ask him to sign a health care power of attorney.  Though actually, I just learned from this very booklet that if you trust your spouse, that’s who will be consulted in the absence of a POA.  Either way, it will someday be up to me, who knows J best, to decide whether, based on his mental status, responsiveness and awareness, he who loves food so much would want to be kept alive by a feeding tube.  J is also the kind who might well look me in the eye someday and say lucidly, “Let me die.”  But if something happens to me first?)

Naturally, the VA booklet is being quoted selectively by conservative culture warriors.  (The exercise on “What makes your life worth living?” on p. 21, however, doesn’t need selective quoting to be every bit as bad as they say it is.)  Towey in the WSJ notes that “There is a section which provocatively asks, ‘Have you ever heard anyone say, “If I’m a vegetable, pull the plug”?'”  In full, that section merely notes that people sometimes do actually say things like that without being very clear about what they’re talking about:

Have you ever heard anyone say, “If I’m a vegetable, pull the plug”?  What does this mean to you?  What’s a vegetable?  What’s a plug?  Even people who live together can have very different ideas about what the same words mean without knowing it.  When you say, “pull the plug” it could mean a variety of things:
•Stop the breathing machine
•Remove the feeding tube
•Don’t give me antibiotics
•Stop everything

The booklet’s central question is, “For you, is there such a thing as unacceptable quality of life?  Where would you draw the line?”

It’s not that these are bad questions.  It’s, why is the government asking them? (A far more important question than “Did a Democrat or a Republican administration ask them?”)  Or, for that matter, why is an insurance company asking them, or a nursing facility which makes money when patients’ lives are prolonged?  All of these parties have classic conflicts of interest — as, for that matter, can family members eager to be rid of a burden or to collect an inheritance.  Families are not always havens in a heartless world — as Your Life, Your Choices rather ghoulishly acknowledges when it invites you to check “Yes,” “Not Sure,” or “No”:

I believe that my loved ones should take their own interests into consideration, as well as mine, when making health care decisions on my behalf.

I believe that it is acceptable to consider the financial burden of treatment on my loved ones when making health care decisions on my behalf.

The ultimate question is rather like that about sex education:  is this a private matter, even if it inevitably means some kids will be kept in barbaric ignorance or misinformed?  Do you really want some nanny bureaucracy with a “rational” agenda to impose its one-size-fits-all values on the intimate lives of your kids?  Can the transmission of information about such issues ever be value-free?

It’s doctors who should be educated, in the most humane possible way (I mean they should read the humanities, philosophy and literature, as well as psychologists and other “experts”), on these issues, and doctors, together with trusted family members and chosen religious advisers, who should be working out the decisions.  Family doctors used to do this, and no doubt plenty still do.  Yes, it’s a priestly function.  People do look up to their doctors that way in life-and-death situations, so doctors might as well live up to it.

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