Advance Directives on Steroids
Posted on August 25, 2009
Filed Under Healthcare Reform |
Here’s a Podcast of this post:
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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 dispositive. 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.
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Maybe they are referring to a form like Physician Orders for Life-Sustaining Treatment. Adoption of these forms by states seems to be a big trend, regardless of Section 1233. Do you think that it’s a coincidence that these orders were developed in Oregon, the same state that has been so open about rationing healthcare?
Philmon has visited facebook and has a page there because he cares not what the young’n’s feel about its age appropriateness. Sarah Palin also has a twitter feed — you have to look for the Official one, though. And she puts this stuff out on that as well.
Besides, you don’t have to sign into facebook to see Sarah’s stuff. It’s a public page.
And no, she does not mention any bill specifically much less any section in it. She’s going off of the vague language in the bill and filling it in with things Obama has strongly hinted at, and advisor Ezekiel Emanuel has written, among other advisors and supporters of the bill. She’s not “lying”. She’s connecting the dots like a lot of us have done already, only when she says it, more people pay attention.
As you and I have both figured out, this is a piece of “fill in the blanks later” legislation, and I fear those who have been designated with the official pens to do so.
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.
As Charles Krauhammer puts it in his piece
The Truth About Death Counseling, “What do you think such a chat would be like? Do you think the doctor will go on and on about the fantastic new million-dollar high-tech gizmo that can prolong the patient’s otherwise hopeless
condition for another six months? Or do you think he’s going to talk about — as the bill specifically spells out — hospice care and palliative care and other ways of letting go of life?”
Under the Maryland Health Care Decisions Act, before withholding life-sustaining treatment at the
request of a surrogate, a health care provider must have the attending and consulting physicians certify that the patient has a terminal or end-stage condition. Alternatively, the physician and consultant can refuse to treat by certifying that treatment would be medically ineffective, but they must then provide treatment until another doctor or facility can be secured for the
patient who wishes treatment.
All hospitals in Maryland have forms that mirror the language in the HCDA; in the case of Holy Cross Hospital they are the Certificate of Condition and the Certificate of Medically Ineffective Treatment. When it came to my father,
the doctors simply short-circuited the question of intubation by saying that they didn’t think intubation “was appropriate” for him, hence no need to do it or to even bring the matter up to me. I can only wonder how many times the same thing happens each day at that hospital, and indeed, in this country.
Ah. She stopped using her twitter account the day she stepped down as Governor.
POLST or MOST Orders, when properly discussed with family and patient, especially in long-term care facility setting, have the potential to preserve dignity, prevent suffering, and still save precious health care resources WITH transparency. IMHO these are the proverbial ultimate quadrant 2 intervention. Focusing on training physicians to properly counsel on EOL Care as a preventative care measure (to prevent suffering) and not like some evil rationing plan meant to deprive us all of something (life, regardless of quality) has the potential to conserve more health dollars than almost any measure.
When I take my car in to be serviced and the dealer notices some problems, I alway have to sign for the repair order, or affirm that that I’m electing for forgo a repair at this time. The technician’s word regarding any discussion we had isn’t good enough.
I just looked at various state POLST orders and, amazingly, only the Washington form appears to have a requirement for the patient himself (or his surrogate) to sign the damn thing. Doesn’t anyone get it? Doctors can stretch the truth beyond the breaking point in their affirmations that they had lengthy discussions (always lengthy; plain is never good enough) with the patient, because they have a vested interest in moving things in a certain direction to keep the hospital and utilization review folks happy.
http://www.cnn.com/2009/HEALTH/08/25/harris.primary.care.doctor/index.html
Please read this article.
So what does DrRich feel the wording of legislation allowing physicians to bill for counseling on advance directives should be? I keep hearing how this section might be used for evil, but no suggestions for changes, even from those who claim to support the concept of advance directives. So how should it be written?
People need education about what extraordinary measures can be taken to keep someone alive before they and their families are in the situations so that the proper decisions can be made when disaster strikes. I recently saw an elderly terminal cancer patient who had a 70% 3rd degree burn intubated - why? How can a terminal cancer patient not have an advanced directive? The torture this person was about to undergo serves no purpose except for making money for the hospital. Maybe the patient had counseling and did not want an advance directive, so be it - I like doing chest compressions- but I see this way too often.
So what does DrRich feel the wording of legislation allowing physicians to bill for counseling on advance directives should be?
I don’t care. You can word the payment part of the legislation any way you want. That’s not what I am objecting to. My objection is the steroidization of advance directives, which reveals (I think) the real reason for Section 1233.
Furthermore, I agree with you that advance directives can be quite useful, and in an environment where they would be applied appropriately they would be a very positive thing. Heck, I’d even have one myself if I thought I could trust the government, the hospitals and the doctors to interpret them appropriately.
As it is, however, I will allow my official default position to be “do everything,” so I don’t leave a paper trail that the bureaucrats (and the bureaucrat-ridden doctors) can apply creatively as they see fit. At the same time (since I really don’t want everything done), I have discussed the matter with my wife and children, and will trust them to make the appropriate decision when the time comes. My advance directive, in other words, is verbal, and is in the hands of people I actually trust not to off me just to save a buck.
Rich
“I have discussed the matter with my wife and children, and will trust them to make the appropriate decision when the time comes.”
That’s fair. You do not want everything done, yet you put the onus on your loved ones and children to decide your fate, because you are afraid of the government bogey man pulling the plug. Really? I have seen time and time again family members not adhering to what the patient wants because of the emotion involved. They do not want the guilt of irrationally “pulling the plug.” If nothing is written, leave it up to God’s hands, as long as those hands do everything possible to keep the terminal patient alive. Have you ever performed ACLS on a 90 year old terminal cancer patient because the next of kin insisted upon it?
Some of this paranoia about Advanced Directives reminds me of people not donating their organs because of the urban legends of doctors pulling the plug on viable souls to donate their organs for transplant and profit. Like one day waking up in a bath tub full of ice after a bad date, and missing a kidney. Damn that Sarah Palin!
…I recently saw an elderly terminal cancer patient who had a 70% 3rd degree burn intubated - why? How can a terminal cancer patient not have an advanced directive?
…Have you ever performed ACLS on a 90 year old terminal cancer patient because the next of kin insisted upon it?
I understand where you guys are coming from, but a little respect for life and for patient autonomy please. What if these “terminal” cancer patients had something really important to live a little longer for? Some people cherish life no matter what. Senator Kennedy had his cranium sliced and his brainium diced to extend life by perhaps 6 months.
My father was a deeply religious man who lost his entire family including a wife and daughter in the Holocaust. He came to this country penniless and built a life for himself revolving around his religion - a religion that measures and cherishes every moment of life down to the millisecond. Upon his very first hospitalization he was just written off. 91 years old, Zenkers diverticulum, probable aspiration pneumonia, dementia, — goodbye.
It was a hospitalization on cruise control, the endpoint and the endgame a forgone conclusion. No need to pay heed to antibiotic administration, white count levels or nutrition. The hostility we encountered at the hospital on the part of the doctors and nurses was palpable. They didn’t seem to care that my father had no prior history of pneumonia or aspiration, no cancer, no heart attack, no stroke, no Parkinson’s, no diabetes and that was living at home. They also didn’t seem to give him any credit for not costing the system a penny up until that time, owing to the good health he enjoyed and worked on throughout his life. No bypasses, no surgeries, no MRIs, etc. Didn’t matter now. One young pulmonologist actually chided me about the effect that intubating someone like my father has on staff morale (I kid you not).
So let’s just sound a word of caution as to the slippery slope inherent in that attitude toward 90-year-old cancer patients.
“I understand where you guys are coming from, but a little respect for life and for patient autonomy please.”
Al, I in no way wanted to sound callous towards the elderly or any terminal patient. It is because I have a tremendous respect for life and patient autonomy, that I feel an advanced directive is so important. Discussions on end of life care should not be taboo. Similarly my husbands 97 year old grandma, who was a devout Jew, believed in this. She had advanced directives and died in her own home surrounded by her family and loved ones, and the sights and sounds and smells of her home. That to me is patient autonomy. So is allowing your father to have as many medical interventions he chooses to fight for his life, at any age. The medical staff had no right to treat you like a pariah because of his choice.
But Al, I am not talking about costs, I am talking about realities and having some modicum of dignity at the end of life. I have advanced directives on myself as do most of my nurse colleagues. None of us want extreme measures taken to save our lives if we are at a terminal stage of illness with little chance of surviving a code without extreme morbidity. Codes are ugly on relatively “healthy” patients, imagine their effect on those who are not. I have had philosophical talks with staff on if lay people actually observed a real life code performed on a critical patient, and followed the outcomes of that patient, would they chose that option for themselves? Are patients given the real information and outcomes so they can make informed choices? I 100% agree with you that the informed choice on medical care should be the patients.
But Al, I am not talking about costs, I am talking about realities and having some modicum of dignity at the end of life. … I 100% agree with you that the informed choice on medical care should be the patients.
But if we’re talking about realities — if a DNR-type advance directive is front-and-center in the patient’s record, doesn’t the level of care go down? With a pink DNR form plastered to the outside of the folder, isn’t there a kind of tacit understanding among the health care staff as to the direction the patient is going? Isn’t there a risk of self-fulfilling prophesy?
Many of us, no matter the underlying issue(s), are destined to meet our maker courtesy of pneumonia. My layman’s understanding is that unlike the days of yore, pneumonia need not be “the old man’s best friend.” It is highly curable even in the elderly, but you have to be aggressive from the outset, hitting hard and fast in terms of gram stains, antibiotic choices and dosage, and if need be, intubation. In other words, you must work to prevent the patient from slipping down the road to coding. Are these measures really, sincerely and truly undertaken in a DNR patient?
“I understand where you guys are coming from, but a little respect for life and for patient autonomy please.”
This is a little insulting - as a nurse who cares for and keeps alive patients that most people can not even stand to look at, let alone touch, I think I have at least “a little respect for life.” I am more than happy to do everything possible to keep someone alive and help them to heal, and I will break ribs and pump them full of drugs in a vain attempt to restore circulation as often as you would like. But there are times when the outcomes are inevitable, and filling the end of someone’s life with pain and misery does not always feel respectful.
jtnRN, my apologies. It sounds like you’re an incredible nurse and that you and the hospital you work for play it straight and see a lot of futile care that pains you.
I’m looking at this through the prism of what I believe was the covert rationing that happened to my father in a hospital where the doctors disregarded the rules and the less-than honest staff acquiesced. My concern is simply that after seeing so much futile care, all 90-year olds start to look the same. I’m convinced my dad fell into that kind of trap.
The torture this person was about to undergo serves no purpose except for making money for the hospital.
That is where Maryland is different. My understanding is that the ICUs here get a set fee from Medicare no matter the treatment. They have every incentive to do as little as possible.
“if a DNR-type advance directive is front-and-center in the patient’s record, doesn’t the level of care go down?”
NO. Al, it does not. Like jtnRn it is a little insulting to assume we just ignore DNR patients or let them die alone or in agony. Lot’s of us in healthcare have high moral standards and compassion for human beings. That is why we choose this profession. I am sorry for the terrible care your father received. It is inexcusable. But you are propagating a lot of misunderstanding and “urban legends” about what advanced directives and DNR orders really mean. I am glad you are bringing up these questions, because I believe you may be in the majority of how the general public feels. Much education needs to be done.
Lot’s of us in healthcare have high moral standards and compassion for human beings. That is why we choose this profession.
Undeniable. I agree with you.
…it is a little insulting to assume we just ignore DNR patients or let them die alone or in agony. …you are propagating a lot of misunderstanding and “urban legends” about what advanced directives and DNR orders really mean.
But in my father’s case that precise scenario was not an urban legend; it was a suburban reality.
Al,
All healthcare providers build up a protective emotional shell of some kind to get by, and yes, all 90 year olds, especially non-verbal/intubated patients, can wind up looking the same. Nurses are trained somewhat to recognize this in themselves and act appropriatly, but it does not always work. No excuses for what you went through, but I am not completly suprised. Anyways, sorry about my little rant.
The question is, how does this apply to the idea covert rationing - the primary focus of this blog? Both the drive to withhold care to ration/save money and the drive to overtreat to make money exist right now, and I suggest that they will always exist, no matter what the details of our healthcare system are. It just strikes me as ironic that all of the criticism of the potential healthcare reforms are based in fear of something happening that aleady exists - i.e. rationing, long waits, poor management, no choice of doctor, exploding costs. That is why when I hear talk of “death panels” or “rationing” all I see is a desperate attempt to save insurance company profits, as no one that I see arguing against some kind of public option for all of us is proposing anything that addresses the problems they claim to be so afraid of. DrRich has proposed a system that tackles these issues, but since it includes a large portion that coveres everybody and is supported by tax revenue it would be dismissed out of hand as “socialist” “rationing” and having “death panels” by the same people opposing the democrats today.
jtnRN, I think we’re in agreement. Most people do not understand that we have a subtle and sometimes not-so-subtle rationing system firmly in place right now.
My father and I would have fared better in a system where the interventions he needed were openly denied based on his age and or prognosis. At least then I could have tried to do something about it. I’ll take Obamacare and FECCER over covert rationing anytime.