Romantic Medicine vs. Utilitarian Healthcare: A Dialog [UPDATED]
UPDATE: Highly pertinent to this post is Wendell Berry’s 2002 essay “Two Minds.” While it was ironically published in The Progressive, Berry is what you’d have to call a green conservative. He talks about “Rational Mind” vs. “Sympathetic Mind” in very allied terms.
I recommend this beautiful post by James P. Pinkerton at his blog Serious Medicine. I don’t have time right now to excerpt it in a serious, bloggy way, so I’ll quickly post the brief tastes I “tweeted” from it:
The argument for heroic surgery is like that 4 sending people to the Moon.
Talmudic teaching, who saves one life saves the entire world, vs. the health-policy, quantitative way of looking at it
‘Serious Medicine’ … “is qualitative, not quantitative. The quality of mercy is hard, if not impossible, to quantify.”
“the overall romance & mystique of medicine is inherently qualitative…that’s why civilization has so revered medicine…a romantic aspect”
While not unaware of the real problem of how all this is going to be paid for, Pinkerton makes a stirring argument — human, religious, and Romantic — for saving single lives even at horrendous cost, whether at their precarious beginning (look at Charlie Miller now!!) or near their end (the example of the advanced-cancer patient in the post).
I had recently been thinking about these issues as a result of hearing about an 80-year-old with fairly advanced Lewy Body dementia (what J has) who fell, broke his hip, and is now getting hip replacement surgery. Because of the impairments that caused him to fall, it’s going to be very hard for him to rehab to the point of being back on his feet. Does it make sense to replace the hip of someone who will probably never stand again? Or is the surgery the only way of keeping him from being in intractable pain? In the old days and the old world (I saw this in Romania), someone who broke a hip was usually bedridden for the rest of his or her life, yet could last a couple more years well-tended to by exhausted family members. This man is now going into a nursing home to stay; he wife was reaching the breaking point anyway coping with his irrationality and paranoia (the latter being what J, thankfully, mostly HASN’T got). She was terrified of trying to explain to him why he had to go into a facility, and was actually relieved that he fell and broke his hip.
All this led to another exchange between me and my sistah the doctah:
A[mba]: I found this an absolutely beautiful post, if problematic. Even if you disagree with its “never give up” ethos being taken to absurd extremes, it will still make you feel good about being a doctor.
S[istah]: I confess to not being able to wade through the entire post…when I hit the religious stuff my brain shut down. even though he writes beautifully and says some perceptive things.
I read the NYT article about the surgeon and the surgery and confess that my first thought was Wow how incredible, my 2nd was what a cowboy (about the surgeon. not a fair response but an extrapolation from my own dealings with transplant surgeons who have egos as big as the great outdoors and motives that aren’t always altruistic but cravenly human), my 3rd what a waste. of time, money, resources. But how potentially amazing for both the patient and his family (i refuse to get involved with the god part).
The economization of medicine maybe does separate us all too much from the glorious ability [of] medicine to save and improve lives. But we’ve gotten way out of hand here. I can’t help thinking of what the hundreds of thousands spent on that guys surgery could have done for old people who can’t afford their basic meds and all the other medical inequities that exist. It’s obviously not a quid pro quo, I know. And you can certainly make a point that in this particular situation the surgeon was trying out techniques that may be useful in more hopeful situations. But one of the problems I see is that people (Americans specifically) have absurd expectations about health and healthcare. we’re all going to fucking die some day. we need to focus on doing the most good for the most people…not do outrageous things for the few. or we can do those things as long as the many are getting the basics.
I REALLY feel it’s all about the capitalization of health care…so much $$ is being made by drug co’s, hospitals, insurance cos, and…yes…some doctors. Until we do something about that care will continue to be insanely polar. whew. a rant.
A: I think the conservatives’ argument would be that people on the whole are not motivated to do great things simply by the fact that it’s good and compassionate and sensible to do so. They are most motivated by rewards — money, power, and fame. So if you restrict the rewards, you restrict the greatness of what will be done. Decapitalize “serious medicine” (or any other field of activity) you demotivate it. And of course you will still have greed and corruption, the monopolization of wealth by the powerful and power by the wealthy, fraud, black marketeering, etc. etc., with less ability to regulate/correct them. They would argue (despite their religion thing) that virtue and common sense are weak rewards, to which most people have to be prodded by fear (hell) and shame, or perhaps luxuries — the ultimate rewards for people who’ve already had all the other rewards, like Bill Gates and Pastor Rick Warren (of The Purpose Driven Life, who now gives away 90% of his income, so he says).
Do I agree, i.e. am I a conservative? No; just not a liberal anymore either. I’ll sadly entertain their argument (“entertain” rather than “hold” is what I do with most beliefs these days), but not being very motivated by material rewards myself (obviously, or I’d have some), I don’t get it viscerally at all. I can just see that it may be true of others. The Darwinian conservatives would just say this proves that a) I am simply not the fittest, not vigorously self-interested, not surviving, not reproducing, being eliminated from the gene pool, and b) proof that when greed dies out it is either the ultimate luxury or a symptom of vitiation or decadence. It’s the brawling “getting yours” stage that they most admire, the force that propels deprived but enterprising people out of poverty and doesn’t stop there, but goes on to build empires, empires which do great good as well as harm. I find it amusing that they can be so Darwinian and so pro-Christianity at the same time…until you observe that maybe Christianity serves its holders’ survival, optimism, will to power, and reproduction.
Possibly to be continued/updated between us; in the meantime, I hope you will jump in.
P.S. In the interests of full disclosure (lest I make myself sound like a noble failure), while not very motivated by material rewards, I’m certainly motivated by attention, recognition, admiration. Just not any good at getting them on a scale beyond the happy few.
Worrying Race Like an Old Bone
The discussion between me and my bro continues, although I don’t know that either one of us is saying anything new or different, prompted by MoDo’s column and James Pinkerton’s response to it.
David:
See, I think there’s a difference between shouting “racism” — which I agree these days is little more than just a sharp object to throw under the tires of your opponent — and realizing what it is and actually, quietly doing something about it.
There’s a difference between pointing at someone who’s intolerant and shouting Bigot!, and recognizing what you’re up against and either negotiating with it or (preferably) kicking its fucking ass.
There’s a huge problem, which I identified (a couple of days before Dowd): there’s a significant minority in this country that may just be too uncomfortable with a black man in the White House. You don’t shake your head and tsk-tsk at that, but you do have to either proceed carefully in tacking huge, ambitious projects with a narrow majority, or you have to kick ass and take names. Obama has vacillated somewhere in the middle, which I think has emboldened conspiracy theorists and wingnuts who now see themselves as the base of the Republican Party.
I think Obama missed a golden opportunity to kick ass, right then and there. He looked almost as shocked as Pelosi behind him did (I loved how Biden just looked down and shook his head in disgust).
I wish he’d looked at Wilson and said, “No, Congressman, I’m not lying. I’m telling the truth. And later in the speech I’m going to talk about ways to approach this significant issue without losing sight of the civility needed to reach a positive solution. I hope you’ll pay special attention to that portion of my talk.”
Or something like that. Call the bastard out! Be the velvet hammer! Then come out swinging in the aftermath of the talk.
Because if you don’t, you lend credence to people who cloak fear of The Other in all kinds of other goofy shit.
The only reason that discussion of racism would be useful would be to call the collective bluff of people who think a black man in the White House must be sinister. Go after their bullshit and compel them to – er – call a spade a spade.
Me:
Heh heh.
What’s really upsetting me is that it’s interfering after all, with his ability to function as President. Others can refuse to deal with him because of it, and he can take cover and be failure-proof behind it. In my opinion, it was a huge mistake (and pure Chicago-style politics: whatever might give you a hold over your opponent) to ever use it, even by implication, to discredit opposition to the health plan. The health plan is scary to conservatives ALL BY ITSELF and would be equally so with a white big-government-friendly liberal pushing it. Implying with a broad brush that racism is behind the opposition (which a lot of Obama’s supporters are resorting to, even if he isn’t) drags race into the foreground instead of giving it a withering look and banishing it to the background where it belongs. Frankly, I don’t give a shit whether, what, as much as 20% of the country can’t stand having a black man in the white house (sexual implication intended), as long as the Secret Service keeps them and their guns far away from him. He should be ignoring them, writing them off as hopeless dinosaurs, and having an honest discussion (as he keeps claiming he’s having) with the people who have an honest disagreement with him. But he is a Democratic machine politician, beholden to a base that wants a public option badly enough to force it on the near-half of the country that doesn’t. Race aside, his mandate isn’t big enough for that and he’s going to have to compromise, or else things are going to get even worse than they already are.
It’s the failure to recognize the legitimate (even if you think it’s misguided) opposition to the health plan per se — in the belief that it is NOT gonna be deficit-neutral, for starters, no way — that I find dishonest and politics as usual. Racists should be IGNORED, not used as human shields. All this talk of race is a DISTRACTION from that and those who treat it as anything else are guilty of helping to inflame it. I even think the convenience of that could be one reason the backroom boys and girls of the Democratic party decided to elect him.
David:
Or, it could be repeatedly used as a smokescreen by far-right Republicans (or Whatevers) behind which to hide a determination to make him fail at the good he could really do — not because he’s black, but because he’s a Democrat.
I really do think in a weird way that the invocation of race as an issue is something that the right is encouraging, because they see it as drawing the scared to their side — regardless of how kooky the scared may be. After all, what does it matter who’s on your side, as long as there’s more of you than there are of them?
There’s nothing more cynical than a machine politician. Problem is, machines come in all colors. I don’t think Republicans are focused on the evils of a public option — where were they over most of the past quarter century, as this problem was getting worse and worse? W’s prescription benefit was the only attention health care really got from Republicans — until now. That they missed their chance to craft reform without a public option — especially after the 2002 mid-term elections — and to create a new era of fiscal responsibility, has now caused them to want to undermine, at all costs, the only, or best, hope we’ve had at some kind of reform, in our lifetime.
Now it’s not gonna happen — not in any meaningful way. And if it’s not meaningful, it means it won’t keep the problem from getting worse.
But of course, if it gets worse on a Democrat’s watch, that’s OK.
Me:
This is why the people in what’s so often called, with contempt, by both sides, “the mushy middle” should not be written off. They’re the only ones who care more about getting something done that everyone can live with than about beating the other side.
Does the VA Nudge Seniors Toward Death?
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.
Ambiance 