DrRich does not visit Facebook, much less have a page there. This is because his college-aged children have informed him that he is too old for Facebook. (They tell him that Twitter is the appropriate social network for people of his age, whose brains are clogged with moraines of proteinaceous deposits left by a receding intellect, a pathology which causes the old dears to go off on wild tangents whenever they have more than 140 characters to work with. “Just look at your blog, Dad,” they point out.)
In any case, having not personally viewed Sarah Palin’s Facebook page, DrRich is not sure whether she specifically identified Section 1233 of the House healthcare reform bill – the part of the bill dealing with “Advance Care Planning Consultation” – as the specific hiding place of the now-famous “death panels.”
But whether or not Ms. Palin herself pointed to Section 1233, that’s the section most politicians and most commentators assumed she was talking about (presumably based on the observation that 1233 mentions the words “end-of-life care”). And subsequently, in an attempt to appease the rising anger of the multitude, our elected representatives announced they have decided to remove this offending section from any pending healthcare legislation.
And of course, this decision itself has created a backlash. Supporters of Section 1233 – including many physicians, most advocates of thoughtful end-of-life planning, and all critics of Ms. Palin (who would find it objectionable if she found a cure for cancer) – point out that end-of-life planning in general, and Section 1233 in particular, have nothing whatever to do with death panels. They insist that Section 1233 is badly needed, as it would encourage valuable discussions between doctors and patients on issues related to end-of-life care.
DrRich agrees there are no death panels in Section 1233. He also agrees that encouraging discussions on end-of-life care between patients and their doctors ought to be a good thing. And if it were not for covert healthcare rationing he would probably be enthusiastic about it.
But recall that covert rationing is the “dark matter” of the healthcare universe; it’s the unseen stuff that binds together all the far-flung parts into a coherent whole, and explains all the otherwise inexplicably bizarre behaviors we observe there. Covert rationing corrupts everything it touches, even the good things. So anti-fraud efforts are corrupted into bludgeons to force doctors to place strict compliance with absurd processes above patient care. And clinical guidelines (ostensibly tools to inform and advise clinicians) are corrupted into ruthlessly enforced and legally binding clinical directives from on high.
As a general proposition, we should be vigilant for disguised efforts to corrupt what is useful and good about our healthcare system into instruments of covert rationing. And so we should be concerned about potential mischief from Section 1233 even though it contains no death panels.
Almost as a matter of principle, we should be suspicious whenever public officials desperate to reduce healthcare costs suddenly become passionate and vocal advocates for preserving the individual patient’s autonomy. In this case, we should closely examine our leaders’ enthusiasm for end-of-life planning. For it looks to DrRich like Section 1233 attempts to convert the relatively benign instrument of advance directives into something potentially much more ominous.
In concept, advance directives are good things. Advance directives allow patients to establish beforehand, generally by means of a written document, what types of medical treatments they would want and not want should they develop a serious, life-threatening illness that leaves them unable to express their wishes. Advance directives are supposed to provide guidance to physicians who, functioning in their fiduciary capacity, are charged with acting in their patients’ best interests, even if the patient can no longer express a preference.
Advance directives can spare patients from being subjected to treatments they would consider demeaning, undignified, wasteful, painful or otherwise undesirable should they become incapacitated at a later date. Therefore, well-constructed advance directives should always operate to preserve the individual patient’s autonomy.
However, advance directives are often less than perfect. In particular, they may express a patient’s imperfect knowledge, or they may be imperfectly expressed.
A relatively young and robust individual often cannot know how he/she will feel a couple of decades into the future, when illness strikes and it is time to exercise an advance directive. This imperfect knowledge is a function of human nature. When you poll people with the question, “On a scale of 1 to 10, what value would you assign to the quality of your life if you were permanently confined to a wheelchair?” you will get a much different answer if you ask able-bodied individuals than if you ask people who actually are confined to a wheelchair. The same thing holds when you ask different age groups how they would value life as an elderly, partially incapacitated person. Young people might say they would clearly find life no longer worth living; old people more often are happy enough to go on with their imperfect life as long as they can. Healthy and young people often view the prospects of disability or advanced age with horror; those who actually become disabled (or old) most often find continued meaning there; often they’ll even tell you they have found a more focused and profound sense of meaning than when they were young and healthy.
So there is an inherent risk in signing an advance directive at an age and in a state of health when it may be difficult to visualize how you will actually feel about life years hence, “when the time comes.”
Furthermore, advance directives may contain unavoidable ambiguities that will require interpretation at the time they are acted upon. For instance, many advance directives contain language to the effect that a patient might want to avoid, say, being attached to a ventilator “unless there is a reasonable expectation of a meaningful recovery.” In the heat of battle, what’s a reasonable expectation? What’s a meaningful recovery? How does a physician interpret this language in an elderly patient who has just had a big stroke and needs a ventilator, and in whom (with a ventilator) there’s a 70% chance of surviving, but an 80% chance of recovering with a permanent paralysis? Is this a reasonable expectation of a meaningful recovery?
Experienced doctors know that for a patient who is currently incapacitated and unable to express a preference, a prior advance directive may not perfectly express their present ideas about aggressive treatments, and even if it does, it likely expresses them with some degree of ambiguity. So the doctor may take many other factors into account – their personal knowledge of the patient, the opinions of close family members as to what the patient would want done, and the odds of a long-term recovery if the aggressive therapy being considered is used. Then the physician will negotiate with responsible family members to find an approach that seems most nearly to meet the patient’s presumed desires. The advance directive is often extremely important in making these decisions, but it is not necessarily definitive. The appropriate use of an advance directive requires the doctor to act as a true patient advocate, to selflessly place the desires expressed in the written directive in context with everything else that might affect the patient’s wishes, and then make a recommendation that, to the best of his/her ability, honors those wishes.
The point being that advance directives are not designed – and cannot be designed – to be strictly enforced. They are documents that virtually always will require some degree of interpretation on the scene.
But the appropriate use of advance directives becomes problematic under a system of covert rationing.
Insurance companies have conducted major PR campaigns to push advance directives. And the federal government (even without Section 1233) requires Medicare-certified hospitals to inform all patients about advance directives at the time of every hospital admission. (This is usually done by the admissions clerk who takes your insurance information and has you sign all the releases and forms that give the hospital permission to treat you. These clerks are often fine people, but their explanation of the legally-required advance directive document too often takes the form, “This is a paper that tells the doctors not to keep you alive on a machine like a vegetable.”)
One would have to be credulous indeed to believe that the enthusiasm with which the feds and insurance companies have embraced advance directives arises from their fervor for the patient’s autonomy and personal dignity. Their enthusiasm clearly stems from their desire to cut costs, especially costs at the end-of-life.
But despite years of efforts by the government and insurers, the results have greatly disappointed them. The large majority of Americans have not succumbed to all the overtures urging them to adopt advance directives as a means of protecting their end-of-life autonomy against the greedy and unfeeling physicians, who will always insist on torturing them to the bitter end.
Some insurers have reacted to this disappointment by adopting somewhat more coercive approaches, offering, for instance, to refuse to reimburse doctors and hospitals that provide care against the wishes expressed in an advance directive (thus making advance directives a binding document rather than a general expression of desires). Furthermore, for years physicians have been generally coerced into placing the interests of the third party payers first, which at least threatens to influence how they will interpret the inevitable ambiguities in advance directives. So, as sad as it is to say it, as long as we are operating within a regime of covert healthcare rationing, patients should consider adopting advance directives only very circumspectly, if at all.
DrRich believes that Section 1233 threatens to greatly magnify this problem. Section 1233 “allows” the physician or nurse practitioner providing the end-of-life counseling to fashion an “actionable medical order” that expresses the patient’s desires related to end-of-life care. This order will be widely distributed “across the continuum of care” (presumably electronically, so that everybody taking care of this patient, anywhere and forever, will know about this order).
This, it seems to DrRich, is the real problem with Section 1233, though it is a problem he has not heard anybody else mention. Section 1233 takes the advance directive, which ideally is a guidance document that the physician ought to take into strong consideration when deciding what treatments to offer a patient who is very sick and incapacitated, and converts it into an “actionable medical order.”
A medical order is not subject to interpretation. It’s an order.
Now, DrRich has never heard before – in all his many years in medicine – of an “actionable” medical order. But “actionable” is a legal term of art that indicates that a particular circumstance is appropriate for legal action. So Section 1233 at least implies that a doctor who elects to follow the sense rather than the letter of this actionable medical order (as one does in dealing with a mere advance directive) may be exposing herself to a lawsuit or other legal action, if not by the patient or patient’s family, then by the government.
Furthermore, DrRich finds it notable that Section 1233 does not say or imply that this actionable medical order is to be invoked only if the patient is incapacitated (which is the case for advance directives). What happens, under Section 1233, if a presently sick patient seems to be of sound mind, and (as not infrequently happens) wants to change his mind when push comes to shove? It would not be inconsistent with Section 1233 to treat the actionable order as legally mandatory even under this circumstance.
And for a doctor on the scene to change that actionable medical order, and replace it with a new one that expresses the patient’s present wishes, might not be a simple or straightforward matter. For Section 1233 also spells out what particular steps must be taken to produce a legal, actionable end-of-life order. This detailed process may be fine if it is undertaken when the patient is completely healthy, and time is not of the essence, and there is no active emergency going on. But what if time is a factor in a presently sick patient who wants to change the order? What if that patient is of sound mind, but ill enough that he does not have the luxury to sit through the procedures prescribed in Section 1233? Would it be possible to legally change this patient’s prior actionable medical order under these circumstances?
Now, DrRich is fully aware that supporters of HR 3200, and especially supporters of Section 1233, will call him a confabulationist for dreaming up this interpretation of the proposed law.
But this interpretation, DrRich submits, is entirely consistent with the actual language in the bill. DrRich also finds it consistent with the spirit of 15 years of efforts, by government and the insurance industry, to browbeat doctors into making all their medical decisions with the strictest possible interpretations of legal, regulatory and financial rules foremost in their minds, whatever that may mean to patient care. And it is certainly consistent with covert rationing.
Section 1233 offers to create a new legal and regulatory consideration – the actionable medical order – that must be navigated when one is interpreting patients’ end-of-life wishes. This new consideration, viewed in the context of a growing desperation to reduce spending on end-of-life care, throws a whole new light on what is currently called an advance directive.
Apparently (for who knows what the legislators will end up doing?), Section 1233 is no longer going to be included in a final healthcare reform bill. But DrRich finds it implausible that provisions similar to those found in Section 1233 will disappear altogether. Perhaps they will re-appear as a last-minute amendment to a farm subsidy bill, or to Cap and Trade legislation, or to a Congressional tribute to Billy Mays. One way or another, similar language is likely to show up again in legislation, and likely it will still provide for actionable end-of-life orders, or some other form of advance directives on steroids.
Until these questions are finally sorted out by our elected representatives, DrRich will tell anyone who asks him that they need to be extremely careful when somebody approaches with an offer to counsel them on their end-of-life rights, so as to preserve their end-of-life autonomy. Beware healthcare workers bearing clipboards.
*This blog post was originally published at The Covert Rationing Blog*
When Sarah Palin uttered the fateful words, “Death Panels,” she unleashed the holy wrath of the great unwashed masses, and as a result caused many of our more complacent legislators to abruptly bestir themselves into a higher state of arousal, if not outright agitation. Palin’s accusation caught more than a few of them utterly unawares, and embarrassingly flatfooted.
They felt, no doubt, like they were in that dream where you unaccountably find yourself naked in a crowd. But this time, rather than reaching to hide their sadly exposed nether parts, they reached instead for their pristine copies of HR 3200. One could almost pity them, desperately rifling through the 1100 virgin pages, wondering whether perhaps they should have tried to read that monstrosity earlier after all, and muttering to themselves, “Death panels? This damned thing has death panels?”
But DrRich is here to reassure them. First, as he has recently pointed out, there was in fact no reason for them to waste their time trying to read HR 3200. It was not designed for reading, comprehensibility, or (for that matter) imparting any actual information of any sort.
And second, HR 3200 contains no death panels. (In their state of stark panic, of course, and anxious to rid the bill of anything that might smack of death panels, our legislators quickly moved to strike Section 1233 from the bill, apparently because that section contains the phrase “end-of-life care.” But actually, Section 1233 talks about end-of-life counseling, and not death panels. Nothing in HR 3200 creates death panels.)*
The very notion of death panels seems to have many supporters of healthcare reform nonplussed. How can someone as inarticulate and obviously illiterate as Sarah Palin get away with accusing our highly-educated healthcare reformers of setting up such a thing as death panels? Really, what are death panels anyway? And even more perplexingly (since, after all, Republicans are capable of anything), why do so many Americans believe her – even, apparently, hundreds of thousands of Americans who were enlightened enough to vote less than a year ago for President Obama?
This question ought to greatly concern any of our elected representatives who support healthcare reform and who plan on being returned to Congress.
When Sarah Palin said, “Death Panels,” she was dropping one last, tiny crystal into a supersaturated solution. Her words took what had been an amorphous and even chaotic sense of unease about healthcare reform, and immediately crystallized it into an organized latticework of directed rage and fear. So the real question (for politicians hoping to seek re-election) is not how Sarah Palin came to be savvy enough to know just the right words. (Perhaps she was just “lucky,” or perhaps – and DrRich suspects this is the real explanation – she is a lot smarter than her critics allow.) Rather, the real question is: What put the rabble in such a supersaturated state to begin with? Why did the absurd-on-its-face idea of “death panels” so resonate with them? What made those words galvanize their shapeless disquiet into a solid mass of resistance?
DrRich is very sorry to have to tell his friends of the Democratic persuasion the sad truth – it was President Obama who created this circumstance. Sarah Palin may have named the death panels, but before she ever thought of the phrase, President Obama had already described them in some detail.
He described their function, how they would operate, and who they would target. During the past 6 months President Obama has actually offered several short discussions on what a “death panel” might be expected to accomplish. But perhaps the most instructive example is the one he gave on ABC television during his June 24 National Town Hall meeting.
DrRich refers, of course, to the famous question about the 100-year-old woman who received a pacemaker. The questioner pointed out that her grandmother had badly needed a pacemaker, but had been turned down by a doctor because of her age. A second doctor, noting the patient’s alertness, zest for life, and generally youthful “spirit,” inserted the pacemaker despite her advanced age. Her symptoms resolved, and Grandma continues to do well 5 years later. The question for the President was: Under an Obama healthcare system, will an elderly person’s general state of health, and her “spirit,” be taken into account when making medical decisions – or will these decisions be made according to age only?
President Obama’s answer was clear. It is really not feasible, he indicated, to take “spirit” into account. We are going to make medical decisions based on objective evidence, and not subjective impressions. If the evidence shows that some form of treatment “is not necessarily going to improve care, then at least we can let the doctors know that – you know what? – maybe this isn’t going to help; maybe you’re better off not having the surgery, but taking the pain pill.”
(DrRich will give President Obama the benefit of the doubt regarding his suggestion that a 100-year-old women who needs a pacemaker might be better off with a pain pill. Despite the way he is portrayed on the cover of Time Magazine, Mr. Obama is not actually a doctor, and cannot be expected to understand that using a “pain pill” to treat an elderly woman who is lightheaded, dizzy, weak and possibly syncopal because of a slow heart rate might justifiably be considered a form of euthanasia rather than comfort care. DrRich does not believe the President was intentionally suggesting the old woman’s death should be actively hastened by means of a pain pill. At the same time, DrRich’s advice to this still-spry 105-year-old Grandma is: since pacemakers usually need to be replaced every 6 – 7 years, you’d better think about having your 5-year-old pacemaker replaced right now, before the Obama plan has a chance to become law.)
President Obama’s answer in this case tells us several things. 1) There will be a panel, or commission, or body of some sort, that is going to examine the medical evidence on how effective a certain treatment is likely to be in a certain population of patients. 2) This (let’s call it a “panel”) panel will “let the doctors know” whether that treatment ought to be used in those patients. (”Letting the doctor know” is a euphemism for “guidelines,” which itself is a euphemism for legally-binding and ruthlessly enforced directives.). 3) “Subjective” measures (such as a physician’s clinical judgment as to an individual’s likelihood of responding to a therapy as the panel says they will – or, for that matter, a person’s “spirit”) ought not to influence these treatment recommendations, since that kind of subjective judgment is what got us into all this fiscal trouble in the first place. 4) But being that our government is a compassionate and caring one, palliative care will be made available in the form of pain control, even while withholding potentially curative care.
So, according to the President, we will have an omnipotent “panel,” acting at a distance and without any specific knowledge of particular cases, that will tell a doctor whether he/she can offer a particular therapy to a particular patient – or whether, instead, to offer a “pain pill.” His description of this process, offered with variations over the past several months in several venues, has obviously made quite an impression among the people. Of course, Mr. Obama is widely known to be a gifted communicator.
In any case, all that remained was for Sarah Palin to give the President’s panel a catchy name. And when she did, the American people (without reading HR 3200 or any other piece of legislation) knew exactly what she was talking about. They knew, because President Obama himself had been spelling it all out for them in plenty of detail for six months.
Indeed, it seems to DrRich that, if not for Mr. Obama’s having so carefully laid the groundwork, Palin’s accusations of “death panels” would have fallen flat. It would have been regarded by most people as the absurdity Democrats insist that it is, rather than the epiphany it turned out to be.
* There are no death panels in HR 3200 because creating them there would have been entirely superfluous. If we are to have death panels, or any entity that might pass as one, the provision for such a panel is already the law of the land. It was made so earlier this year (conveniently, before anybody started paying attention) in the Stimulus Bill, which created the Federal Coordinating Council for Comparative Effectiveness Research.
DrRich has described before how the CER Council will perform cost-effectiveness calculations, then coerce physicians, through one form of federal subterfuge and intimidation or another, to employ the least expensive therapies (thus enforcing “cost”, while shouting “effectiveness”).
It is called a CER Council, and not a death panel. But if you should develop a fatal illness which you might have survived had you been allowed to receive a treatment that the Council has deemed cost-ineffective, then you might be forgiven for thinking of the CER Council (from your insular, personal, narrow-minded, self-interested point of view), as a death panel. But there are no death panels in HR 3200, and Sarah Palin should be ashamed of herself for suggesting otherwise.
*This blog post was originally published at The Covert Rationing Blog*