The Medicare “mandatory counseling” controversy in the Obamacare debate laid bare a realistic fear that compensated counseling under Medicare could easily become subtle (or not so subtle) persuasion to refuse treatment–particularly since the primary point of the clause is to cut costs.
Here is an example of why I believe that the fear is realistic. The Center for Practical Bioethics has published a “Caring Conversations” workbook, in which intimate issues and details of life, death, and end of life options are raised. Nothing wrong with that, in and of itself, of course. It all depends on how it is done.
In this regard, it is worth nothing that workbook contains an advance medical directive that has a default position of refusing life-sustaining treatment and participating in medical experimentation when the person will not be restored to health. These are the boilerplate instructions in the “Healthcare Treatment Directive”:
I always expect to be given care and treatment for pain or discomfort even if such care may affect how I sleep, eat, or breathe. I would consent to, and want my agent to consider my participation in federally regulated research related to my disorder or condition. I want my doctor to try treatment/interventions on a time -limited basis when the goal is to restore my health or help me experience a life in a way consistent with my values and wishes. I want such treatments/interventions withdrawn when they cannot achieve this goal or become too burdensome for me. I want my dying to be as natural as possible. Therefore, I direct that no treatment (including food or water by tube) be given just to keep my body functioning when I have: a condition that will cause me to die soon, or a condition (including brain damage or brain disease) that I have no reasonable hope of achieving a quality of life that is acceptable to me…
(Among the “quality of life” examples that are suggested to be listed by the document signer are, able to “take care of myself, able to “feed myself,” and able to “be responsive to my environment.”
The lexicon of the document is far from neutral and presumes that people will not want their lives sustained if they are in a dependent state. If one disagrees with these default positions, the signer must take action:
If you do not agree with one or the other of the above statements, draw a line through the statement and put your initials at the end of the line.
In the wrong hands, end of life counseling could easily be subtly or overtly outcome directed, as studies have shown often happens with genetic counseling of pregnant women testing positive for a Down fetus. Thus, there is much about which to be concerned when Medicare pays practioners to engage in counseling about end of life, and indeed, authorizes part of the counseling to consist of referrals to outside organizations that might have ideological agendas (such as Compassion and Choices). That is why, if the counseling provision remains in the bill, I believe protections against such abuse should be added, as I suggested in this post.
August 1st, 2009 | 8:14 pm
I have a child that was born with a congenital heart defect and went through genetic counceling twice, at two different doctor offices. The first office was extremely cordial, assuring me that the problem was not our fault nor the fault of anything we’d done during the pregnancy.
The second office was the exact opposite, nasty and bizzare. They pushed for more testing to determine if there were any other genetic defects not found in the ultrasound. They pressured me about the tiny chance of the child also being born with Downs Syndrome even though the ultrasound had not shown anything else wrong. They wanted me to get this test so I could find out if their was anything else wrong and decide to abort my child. They described in detail the horrible, short life of a child born with another genetic defect, I think it was called a chromozone 21 defect.
There was a ton of pressure! We needed to say yes to this test! We needed to lay criterial out for if we would have an abortion! After saying no a number of times, I found myself becoming a record and repeating over and over, “We’ll talk to our primary doctor about it.” I think I said it at least 10 times. My husband was so angry he was practically growling in the seat beside me but couldn’t/didn’t say anything. I wanted to escape.
When I think of that horrible experience, how weak I was, I worry about our elderly without help. I’m sure there will be many who try to convince them, harass them, and pressure them to make statements they really don’t want.
August 1st, 2009 | 9:54 pm
This is all horrible. Thank you for sharing your story, mollolagie.
August 1st, 2009 | 11:30 pm
[...] care–particularly since the point of the agenda is to cut costs. Over at Secondhand Smoke, I illustrate the potential problem by quoting from a model advance health care directive, published by a major bioethics institute, [...]
August 2nd, 2009 | 1:04 am
mollolagie, I am a family doctor. Even I have a hard time knowing which specialists have at least a grain of pro-lifeness, or who will chatter death to my refered patients. Often, it is the patient who tells me, so please let your primary care doc know, so they will hopefully not refer in the future to eugenicists. I wish their was more transparency in the process. Two different doctors can order the same test and explain the results in very different ways, as you know.
August 2nd, 2009 | 5:51 am
What this unfortunate incident reported by molloaggie shows is that professional standards aren’t always adhered to. Counselors are supposed to give their clients advice, information and options, not steer them toward a particular course of action. One hopes that her experience is the exception rather than the rule. With respect to the model Healthcare Treatment Directive, I think Wesley is justified in his concern. The default option ought to be “Keep me alive regardless” rather than “Pull the plug.” On the other hand, I would have major concerns if the “pull the plug” option were to be missing altogether.
August 2nd, 2009 | 11:02 am
This whole thing is an obscenity and too much of this whole society is saturated with it. You’re too soft on it, SHS. “Nothing wrong with that?” There is plenty wrong with it from the get-go.
August 2nd, 2009 | 11:42 am
HW: Unfortunately what mollaggie experienced, and what I’ve encountered and others have encountered re the elderly, is NOT the exception rather than the rule. If it were, SHS would not be as likely to exist. Yes, the default position should be “keep me alive regardless.” But the reason that there IS the “counselling” and that there ARE the “options” is that the marmalukes behind it want “pull the plug” to be the default position. As for “counselling,” its prevalence throughout society is a symptom of what’s wrong on a broad scale. Nothing is anyone’s own business any more. If it were, people wouldn’t have to worry about the plug being pulled on them when they wanted to live and being kept alive if they wanted the plug pulled. Which, by the way, one can’t really know until one is IN that situation. But in order to have THAT, a whole bunch of people who have no right to be anywhere near other people in roles affecting others’ lives would have to lose their jobs. Which would be a damned good thing.
August 2nd, 2009 | 2:12 pm
Obviously, Wesley is absolutely right that having that stuff in the default options is pushy. I would also just note that all this stuff about experiments is quite new. Pushing people to refuse treatment has been going on for a while, but pushing them to consent to be experimented on when they are incapacitated is a new and macabre twist. Wesley’s earlier reporting on it was the first I had heard.
August 2nd, 2009 | 2:33 pm
I have been following the debate on the “end of life” provision of the health bill. I am just as worried as the rest of you. But I am unclear about a few things. Wes, do you know for sure that the end of life counseling is mandatory. Does it actually require the patient to receive this counseling? Or only someone to provide it?
Also, what do you think of Betsy McCauhey and everything she has been saying about this bill? Can what she says be trusted to be the truth?
August 2nd, 2009 | 2:53 pm
Molloaggie, my sympathies. My daughter had open heart surgery to correct a common congenital defect. We were treated with the utmost respect through that.
HOWEVER … during a previous pregnancy, I refused the prenatal testing that most doctors believe is required of mothers over 35. What a battle of wills I had with my OB … the more the OB tried to frighten me, the angrier I got … and the more stubborn … but that’s me. I won in the end because I was standing on pro-life principle and the OB had no legal standing for force. But if the government takes over … the story will change.
Another anecdote … a few years after that pregnancy, I was having my kids in for their annual checkups and refusing the offer of a chicken pox vaccine. The nurse practitioner didn’t care for my independent mind and tried to frighten me into accepting the vaccine. Once again, it only made me angry … I told the pediatrics practice just what I thought about that, but they did nothing … probably just made a note in my kids’ files about their wacko mother.
Too many medical practitioners either (1) just follow the current “conventional wisdom” checklist without thinking it through or (2) have an agenda they want to push on everyone who comes through their office. I think the two anecdotes I related represent these two philosophies.
Disrespect for life is everywhere and we must fight it everywhere. I can’t imagine how someone who is already ill or frail could manage to do that for themselves. Sigh.
August 2nd, 2009 | 4:37 pm
Susie: From the face of the bill, it is a reasonable interpretation that it would be mandatory counseling. But the gobbedlygook in the language refers to existing law, and I am satisfied from reading Fact Check.org and other sources, that the referral has to do with compensating service providers. But, there are also the regulations to be worried about if the bill passes. The voluntary nature of the counseling–for both provider and patient–should be made clear and a provision put in to prevent outcome directed counseling.
That said, it wasn’t some vast conspiracy to mislead. It was, I believe, a bona fide misunderstanding based on the arcane language of the bill and having to refer to other places to know precisely what is being addressed. Heck, it took Obama almost 2 weeks to figure it out.
I am not that familiar with McCaughey. I think she went a step too far in this discussion and should have done a little more legwork.
August 2nd, 2009 | 6:00 pm
If you sheeple don’t know by now that this is part of the ploy to kill us all, then I feel sorry for you.
First the AIDS thing didn’t work, now the flu. They aren’t stockpiling coffins in Chicago and Atlanta for nothing.
August 2nd, 2009 | 11:49 pm
Wow, HW, we actually agree this time! :)
Unfortunately, that isn’t the exception. For instance, one time I asked my parent’s lawyer to provide me with an advanced directive so that I could develop one that would let my parents know what to do if anything happened to me. I was disgusted with the default copy he gave me. It wasn’t just a consent to donate my organs if I was braindead or to pull the plug in that case, but also refused water and hydration if I were conscious and disabled. It refused antibiotics, medical intervention, and anything that might keep me alive, even if I was still alive. I was angry.
August 2nd, 2009 | 11:54 pm
PS, Mollagie, they weren’t talking about another kind of disorder when they mentioned chromosome 21-trisomy 21 is what causes Down Syndrome, so they were basically telling you that people born with down syndrome had short, horrible lives, which isn’t true. The average life expectancy for someone with Down Syndrome is sixty years old, which, while shorter than the national life expectancy of 60, is nothing to sneeze at.
August 2nd, 2009 | 11:58 pm
Excuse me, I meant the national life expectancy of 80.
August 3rd, 2009 | 10:15 am
[...] engineers are working like the devil to make death the default option. See Wesley Smith’s Obamacare: Example of Why Some Fear “Counseling” About End-of-Life Care Could Become “Persuasi…: Here is an example of why I believe that the fear is realistic. The Center for Practical Bioethics [...]
August 3rd, 2009 | 6:19 pm
NH: I’d like to know more about the stockpiling of coffins in Chicago and Atlanta.
Last week I had to be in Surrogate’s Court for something re the estate of my late murdered mother who only wanted to be allowed to live and get out of the hospital alive. While waiting I got to see one “guardianship” appointment of a guardian over an adult developmentally challenged (or whatever it’s called) person after another. The judge in this court happens to be an exceptionally fine, decent, intelligent, and kind man, and was just following the law. A New York State law which has been much justly criticized, to put it mildly. Well, there would be the poor schlub having a guardian appointed over him, which meant that everything was being taken away from him, and the do-gooder “guardian” people would be saying look Lennie wore his special shirt to court today and the judge would compliment him on the shirt and say something about a golf shirt, and would take care not to say the words the person was being termed to be under this insane and hideous “guardianship” statute we’ve got here, and would tell the “guardians” that the “end of life stuff” could be addressed at another time (when the victim would not be present) and at the end he’d congratulate the poor guy all of whose rights, had just been taken away and on whom a legal mechanism had just been imposed that would enable him to be gotten off the planet ASAP.
August 3rd, 2009 | 7:16 pm
I didn’t think to mention it to my primary doctor. I can see why now that would have been important. (Gosh I was so stupid!) Thanks for the advice.
SafePres: The second chromosome genetic disease they described was completely different than Downs. I just can’t remember the exact number. Sorry. It was a next level scare tactic since a Downs child didn’t bother me. I held my ground anyway.
August 3rd, 2009 | 10:21 pm
Good for you!!! It may have been Trisomy 18, or Edwards Syndrome. That disorder causes a child to die shortly after birth. That disorder also causes heart defects and is much more severe than Downs Syndrome.
August 3rd, 2009 | 10:54 pm
It’s confusing, too, though. For instance, when I was young(er) and naive, I thought that prenatal testing was being used by parents as a tool in being prepared for the arrival of their child. I didn’t know that 90 percent of those pregnancies end in an abortion. In short, prenatal tests could be a good thing if they enable parents to start creating the most hospitable environment possible. If I were pregnant, I might elect to have such tests for that reason.
August 6th, 2009 | 5:32 pm
[...] Others are not. Over at True Slant, I argue that the provision does open the door to euthanasia: As Wesley J. Smith notes, if Blumenauer’s provision becomes law, more than a few doctors would be influenced by [...]
August 7th, 2009 | 1:08 pm
[...] I have shown here at SHS how the default setting on the advance directive pushed by one notable bioethics think tank is to r…. [...]
August 9th, 2009 | 5:28 pm
I strongly support everyone here in concern over govt-mandated or “strongly-suggested” arm-twisting in the bill, & I dont support Fed intervention in health insurance.
However, you should get your kids vaccinated. The scare stories about vaccines are false, and rare diseases are making a comeback. Not fair to everyone else.
August 19th, 2009 | 11:18 am
There is an alternative, life-presuming directive offered by NRLC:
http://www.nrlc.org/MedEthics/WilltoLiveProject.html
Not that it will do any good if the law makes it possible to ignore directives, but until that happens it’s something.
Yehudit: Good point, but chicken pox isn’t rare and doesn’t seem to be particularly fatal to children, at least not in this country (witness the bizarre trend of “pox parties” where parents deliberately set up sleepovers with infected kids).
August 22nd, 2009 | 3:49 pm
[...] have seen others like it. Indeed, here at SHS I highlighted a mainstream bioethics group’s proposed advance directive that also has no life-extending treatment as the default setting. And we musn’t forget that the assisted suicide advocacy group Compassion and [...]
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