The last couple weeks' 'national discussion' about health care reform has reminded me of Winston Churchill's famous quote:Democracy is the worst form of government except for all those others that have been tried.
While this could be a reasonable reflection to make about much of the ill-informed & ideological debate that is going on (see for instance this Paul Krugman column), in the last couple of weeks the wingnutosphere has also attacked a small provision in HR 3200 which essentially says Medicare should (occasionally) reimburse advance care/end-of-life care planning conversations.
In the hysterics of our 24h news cycle some pundits/wingnuts/et al have taken this and made wild, shocking, and inaccurate remarks about it - state sponsored euthanasia, rationing care at the end of life, etc. Joanne Kenen at the New Health Dialogue Blog probably has the most complete discussion of this and I'm not going to duplicate her work in this post - read her post. I will quote from the beginning of hers, though, for a flavor of what has been said:
You may have seen the latest message tirade from the right -- health reform equals rationing equals hospice equals euthanasia.Further reading can also be found at:
Give us a break.
The House bill would encourage advanced planning. It would not mean that "old people could be visited in their homes and essentially be told, 'all right, sweetie, you have had a good life.'" It would not send government bureaucrats into homes to counsel seniors about how to cut their life short. It would not "start us down a treacherous path toward government-encouraged euthanasia."
Politifact.Some thoughts about this:
Rep. Earl Blumenauer (a co-sponsor of the provision) takes this on in a blog post here.
Daily Kos.
We try to keep the blog apolitical, and yes all the posts I'm linking to are from liberal blogs, but such is the nature of the political blogging world. You can think HR 3200 is a load of crap - fair enough - but these attacks on this provision are wrong, and corrosive to our democracy. Rep. Blumenauer's post notes that his provision is co-sponsored by a Republican, and I think this is as much to do with the nature of contemporary political discourse and the reality that, for political ends (ie to undermine HR 3200 as a whole) people will attack small provisions in it with any outlandish thing they can think of. We live in a world in which this provision (which creates a voluntary mechanism to reimburse advance care planning conversations) is represented as: "Congress would make it mandatory — absolutely require — that every five years people in Medicare have a required counseling session that will tell them how to end their life sooner." And this lie, instead of being ignored, gains major traction as it serves some political end.
As such, I'd like to dismiss this as another pathetic example of debased political rhetoric in the US. I find it hard to believe that the individuals making these claims are ignorant fools; more likely craven, pandering, political opportunists (which is no better). However these people make these claims in part because they believe they will have traction with some of the public and should give us pause as a community to acknowledge that this speaks to some portion of the public, and thus our patients. And as better end-of-life care and palliative care are being put out there as potential solutions (in part) to the US health care crisis, this is likely to escalate. Anytime it's pointed out that 'palliative care' (or discussing end of life options) saves money; that is going to be sufficient for some to conclude that this is a government conspiracy to euthanize people with disabilities and deny Grandma dialysis because she's 80. Bleh.
I say Be Out, Be Proud, Superb End-of-Life-Care for All - No Apologies! We are aided by the fact that close to no one wants burdensome treatments/hospital stays/etc. that don't improve quality of life, or frequently even quantity of life, as a terminal illness advances. Close to no one wants to spend 3 out of their last 4 months of life going in and out of the hospital, getting tests that don't help them, and getting treatments and support that will at least make them feel better sporadically, if at all**. What we do helps people, tremendously, and it's what most want (when it's time), and the fact that it probably saves Medicare a few bucks should be seen as good news by everyone.
If you'd like to weigh in on this formally, AAHPM has released an advocacy alert about it as well today, with some suggestions for action.
Thanks to Christian & Joanne Kenen for sharing much of this with me.
**I concede that this is a little idealistic, but I'll say that if you ask people how they'd want to be cared for when they were dying and there was little/nothing to be done to stop that, the vast vast majority of people would agree with this. In real life, the issue is often one of first 1) clinicians actually identifying a patient is dying and these treatments aren't going to help and then 2) communicating that to patients in a way that is understandable, and acceptable, to them.
12 comments:
I heard Rush Limbaugh talking about this today, and he was describing the "mandated death talks" in the health care bill. I called in and actually got through. I attempted to correct him, and needless to say, it did not go so well. More details about our "conversation" at my blog
http://www.doctorfisher.com
This proposal is a response to those families who didn’t know their loved ones’ preferences when confronted with difficult decisions in an emergency. It empowers individuals to choose the best decisions for themselves, and better ensure their wishes are followed.
Section 1233 of the health care reform bill is being deliberately distorted.
Fact: Advance planning consultations are a completely voluntary, not mandatory.
Fact: No one will be forced to sign an advance care directive.
Fact: The legislation is endorsed by the Providence Health System, a Catholic health care provider.
Fact: Only a doctor or nurse practitioner can counsel patients.
Thank you for taking the time to cover this important issue.
Carla Axtman
Online Community Builder
Compassion & Choices
compassionandchoices.org
David - well thanks for trying. Of course Mr. Limbaugh doesn't need correcting - he knows what he's doing - which is spreading lies for political ends - and so being confronted with simple, obvious, in-plain-sight truths won't help because that's not what he and others like him care about. Hopefully a few listeners at least were able to hear accurate info about the provision.
Carla - thanks too.
Someone forwarded a few more links about this if anyone's interested in further reading:
Mediamatters
Talking points memo
WSJ
Fox
Washington Times
'defendyourhealthcare.us' (ugh.)
Great post! Dovetails nicely with mine here:http://bit.ly/1pOr7U
"Be Out, Be Proud, Superb End-of-Life-Care for All - No Apologies!"
This oncology nurse, who doubles as a palliative nurse at work and at home says "AMEN"!
If there were some way to take the really ugly proposals out of this bill and pass only the best, I'd have to put this portion up for the first vote.
I think it is a wonderful provision to have the option to be counseled about end of life issues before a crisis hits, as this is what I do daily on a palliative care team. However, just because conservatives are concerned about this provision in the biggest overhaul of our medical care system does make them what I belive most of you are saying "stupid." In fact, they are very smart for questioning why the government is becoming involved in such a deeply personal part of our lives. And shame on MDs for taking the side of government officials who think they rule over us instead of listening to the concerns of the "misinformed" people that you will be serving under this bill. I think all health care professionals should be very concerned about the future of our professions if this reform goes through. No, it may not be euthanasia, but the wording on this document is so interpretative I don't know how anyone can say it won't be mandatory or what it will really mean for our citizens. There really is no promise of that. Just some thoughts..
Anon - I don't think I called anyone 'stupid' for questioning the provision - in fact I opined that the political leaders and 'pundits' who were were making an informed decision to lie about it, to deliberately misrepresent what it says in order to inflame the debate and in fact to prevent measured, informed discussion on the merits of HR 3200 in its entirety. Many people can and do have important concerns about HR3200 - I do - but let's discuss that, and not misrepresent this modest provision.
So, in the interest of furthering informed discussion: tell us specifially 1) what it is in the language of provision 1233 that disturbs you, and 2) what in the provision could lead anyone to conclude that it will lead to euthanasia, a practice which is criminal in the US and pretty much dismissed as unethical by the vast majority of the US medical community?
My own criticism of 1233 is that I am skeptical it will do any good given the grand failure of advance care planning to improve end of life care in the US.
My apologies for saying you called people "stupid" as that was not a word you yourself used. That is the feeling I sense from the media, not you. Anyway, in response to your 2 questions: 1. The language that disturbs me is this: On pg 424-425 of HR3200, it states, if the individual involved has not had such a consultation within the last 5 years, such consultation shall include the following:... So, I feel the claim that these discussion are not mandatory is ungrounded and a blatant lie. No where does it state these consultation are voluntary. And, and at what age do they start? Furthermore, on pg 428, it states these consultations can be carried out more frequently if the individual has a chronic, progressive, life-limiting illness, etc. etc. So, what this says to me is these consultations are required before a person even needs to start having these discussions. Yes, people should think about their advance directives and such, but is that really something the government should be regulating? 2. This is where people are fearing the idea of euthanasia. Although this document does not outright support euthanasia, the wording is terribly interprative and it wouldn't be long before an ammendment could potentially be made. Many people who fear euthanasia are people who oppose abortion. I myself understand completely the importance of addressing these issues as I feel our palliative care team does it all too often when it's too late in the ICU when a pt is on the vent, and has had known cancer for 5 years with poor prognosis and the idea of death was never even discussed along with code status. I get this. However, the issue is if people aren't ready to have the consultation, it should not be mandatory, and there is absolutely no promise or wording to indicate these won't be mandatory. NONE. If people aren't ready to go there, it's not going to do a lot of good anyway ( we see this everyday). Also, this is most certainly not an issue our government needs to have any say over whatsoever. Our government is here to serve the people, not dictate to them about issues so private and personal as this. The so-called "leaders" we currently have in Washington already do not value life since many think it is okay to take the lives of the unborn, including our president who feels it is okay for a viable fetus to be terminated (just look at his voting record). The fear lies in this: life is not valued already, so where does it stop? I believe there are much better ways to address our current system and this issue, which I once again want to stress I know is important and should be occurring more often than not. However, this "reform" seems to be more and more about money, for the government, and for doctors since this is about being reimbursed for these conversations, right? That's not what this should be about. Yes, this is an important provision that shouldn't be misinterpreted for what it ideally should be. However, American citizens simply cannot trust Washington to be truthful, honest, and be looking out for their welfare anymore. Despite the best intention of the doctors that are fighting for this, it is an extremely sensitive issue that really is better evaluated on an individual case by case basis, not lumping an entire population into one group.
http://catholicexchange.com/2009/08/12/121138/
… if HR 3200 becomes law, "due process" regarding someone’s life will become a question for bureaucrats. When all is said and done, the ultimate result of the proposed bill is to transfer to government the unprecedented power of determining who lives and who dies.
Once a government adopts this utilitarian stance toward human life, anything becomes possible. Suspend for a moment your jaded response to Hitler references, and note that in Germany, Order T4 required physicians to kill 70,273 people[i] "judged incurably sick, by critical medical examination"[ii] or those "unworthy of life."[iii] 5,000 of these victims were children. The elderly, the mentally infirmed, the deformed, and the racially impure, were put to death by teams of "medical experts." Thousands were sterilized. By 1939, 360,000 people had been sterilized to prevent the reproduction of the socially "unfit."
Although the methods have grown more subtle and the language more libertarian, our attitudes are not so very different in America today. We casually discuss whether people with certain afflictions merit the costs necessary to keep them alive. Quality of life trumps sanctity of life in most quarters. Dr. Jack Kevorkian’s assisted suicide methodology, once unthinkable, is now an acceptable topic for polite conversation.
@Anon (Part 1, Blogger cuts off comments that are too long): thanks for your comments, and explaining your concerns. I, however, continue to think the concerns, as stated, are completely unfounded.
1) The absence of explicit language saying 'voluntary' doesn't mean it is mandatory. I am sorry, but I think you are over-reading this. Of note, there is zero language saying this is mandatory either. This provision is simply to create a reimbursement mechanism for ACP conversations under Medicare.
2) The 'shall' language is specifying what these consultations shall include. The provision is about creating a funding mechanism for Medicare to reimburse physicians for having ACP discussions. Medicare cannot pay docs for having any conversation; in order to create this reimbursement scheme, there needs to be some specification of what it is Medicare is paying for. The conversation, obviously, can't be about anything; it has to be about ACP.
3) You mentioned in your previous post that you thought ACP was a good thing. Indeed, at its heart, it's about empowering patients to receive the care they wish to receive, respecting autonomy and liberty - this seems like something that for people who are worried about 'loss of liberty' etc. would be excited about. I think I simply disagree with you about it being inappropriate to discuss this with one's physician in the absence of a life-limiting illness. Plenty of people make living wills out when they are healthy; unless you think this is a problem I am not sure why seeking guidance from your physician about what one should put in a living will - what the possible decisions their family will face, etc. mean - is a bad idea?
If you mean to argue that ACP is itself inappropriate then please just do that; I might disagree but then at least we know the terms of this discussion.
If you mean to argue that Medicare should not reimburse physicians to have that conversation because somehow those are outside the role of legitimate medical practice (and therefore should be reimbursable), please just say that.
If you think that no, this practice is legitimate, physicians should not be punished (via non-payment) by doing this, then there has to be some language somewhere specifying the scope of what a reimbursable ACP conversation is; it seems that one can have a vigorous debate about what should be included in that 'scope' but that is a separate discussion about whether it should be allowed to be done/reimbursed in the first place.
@Anon Part 2:
4) You then suggest this might be 'amended' (in some unclear and unspecified way) to do something which would support euthanasia. I have a hard time with that suggestion being anything other than completely unfounded and strange as I noted in my first comment to you a) euthanasia is criminal, b) there is broad medical-ethical consensus in the US than euthanasia is unethical and immoral (of course there are a small minority who disagree with this but they are just that, a small minority, and in fact there's some evidence that improving physician's comfort with caring for dying patients has diminished the small number of physicians who support euthanasia even further). To take your logic, well then anything at any time could be 'amended' to (do something unspecified which would) support euthanasia. I remain completely baffled as to how this amendment about sending some docs some cash for talking about something with patients which is intended to protect the patient's rights/wishes/values is a back door to euthanasia? Help me out here?
5) To me, the Down the Rabbit Hole irony of all of this is that ACP is about clinicians and patients getting together to make sure a patient's rights, values, autonomy, etc. are respected/protected as much as possible when they can't speak for themselves. I.e. this is something that protects patients, and should be (at least on that level) lauded by those who are concerned with loss of rights/autonomy etc. instead of grossly distorted/frankly lied about. Again, arguing about this with people who are concerned only with ideology is not going to get anywhere (this is not directed to you Anon but to the screamers), and I'm not sure, tonight, why I'm trying.
6) You note that this is an important provision that shouldn't be misinterpreted for what it ideally should be. Seems to me that you think the idea is a sound one. Why then continue to suggest that it is in some way leading to euthanasia?
@D: http://uncyclopedia.wikia.com/wiki/HowTo:Play_the_Hitler_card
Bottom line: I understand ACP is a good idea. I do not think, myself, euthanasia is what this bill is trying to legalize. You asked me to explain my concerns, which I did. You also asked how it could be mis-construed for euthanasia. I tried to explain the fears of what many Americans are trying to express. I think the message here is clear: this document as a whole, including the ACP section is incredibly interprative: that's the fear. You don't see there being a problem with the words voluntary or mandatory missing. I do and I question what sort of loop hole that will allow government officials to use to possibly make it mandatory. I think why you remain baffled is because this is something you are so passionate about and understand its importance. However, the term "palliative care" and it's purposes is extremely scary to many. Many bedside nurses don't even understand what palliative care is and see me as "the death nurse" when I am on their units. All I am saying is people do not want the government involved in this aspect of their lives. They just don't and that's what all the screaming is about. Yes, I understand we are trying to protect their life/liberties/rights, but that's not what it feels like to people. They feel the exact opposite and there is so little trust right now in Washington, there really is no way to banish these fears. I feel my argument is exhausted at this point. I am not sure what else I could say. This is a very sensitive subject with a lot of spiritual roots and spirituality and religion and our government hardly mix anymore. I would just encourage people to take a step back and look at the document as a whole because the ramifications of its passing are incredibly disturbing, ACP aside. Perhaps the better term is that it's not "health care reform" but that it's "health insurance reform" because as you noted, it's all about reimbursement and definitions.
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