If Obamacare is implemented, it stands to reason that demand for care will go up while supply of care will go down. On the one hand, I believe that some doctors will choose to leave practice (and students will opt to avoid medical school) rather than work under even more government control than already exists. Aside from that, the government is fixated on "cutting costs" with regard to healthcare despite it's free-spending ways when it comes to everything else.

Such an environment will create a scarcity of care, much like what has already happened in countries with socialized medicine like Canada and Britain, which invariably leads to government rationing of care. Given that, it's worth asking how will care be rationed?

For some insight into that, we can look to the recommendations of Dr. Ezekiel Emanuel, NIH bioethicist (an ironic title IMO), Rahm Emanuel's brother, and most importantly, Barack Obama's "Special Advisor for Health Policy."

So, what are Dr. Emanuel's views on rationing of care? He recently coauthored an article on the topic, "Principles for allocation of scarce medical interventions," in the Lancet. While the article references specific care like organ transplants, kidney dialysis, and vaccines in the event of a pandemic, it is also clearly meant to apply any time there is a "scarcity" of care (which Obamacare would undoubtedly create).

After considering a number of possible rationing methods that could be used, Dr. Emanuel and his colleagues recommend a combination of criteria which they call the "complete lives system":

"It prioritises younger people who have not yet lived a complete life and will be unlikely to do so without aid. ... also supports modifying the youngest-first principle by prioritising adolescents and young adults over infants (figure)."

While I was disgusted to see the curve take a nose-dive around age 50, I can't say I was surprised, based on Obama's recent statement regarding the elderly, "Maybe you're better off not having the surgery, but taking the painkiller," (translation, go home and die?). However, I admit I was surprised (and appalled) to see babies and young children also targetted to be denied care. What would this mean for preemies? Would life-saving NICU care be deemed "too expensive" by the bureacrats?

It gets even worse when you see his justification for such discrimination against the "very young."

"Adolescents have received substantial education and parental care, investments that will be wasted without a complete life. Infants, by contrast, have not yet received these investments. Similarly, adolescence brings with it a developed personality capable of forming and valuing long-term plans whose fulfilment requires a complete life. As the legal philosopher Ronald Dworkin argues, 'It is terrible when an infant dies, but worse, most people think, when a three-year-old child dies and worse still when an adolescent does'; this argument is supported by empirical surveys. Importantly, the prioritisation of adolescents and young adults considers the social and personal investment that people are morally entitled to have received at a particular age, rather than accepting the results of an unjust status quo."

That paragraph is just wrong and abhorrent on so many levels. What parent considers their love and time spent parenting as an "investment"? What parent would consider the loss of a baby less tragic than the loss of an older child? What parent would agree that it is acceptable to let a baby or young child die on the grounds that they haven't "invested" much time in that child yet (or worse, that the state hasn't "invested" in their education yet)? And to say, "this argument is supported by empirical surveys"?! WHO THINKS LIKE THAT?!? It makes me physically ill. No wonder these people don't care to protect the unborn or even newborns. If babies, toddlers, and even children who haven't yet reached adolescence mean so little to them, surely an unborn child would be worth even less in their eyes. I guess that answers my question about preemies...

Here's more:

"A young person with a poor prognosis has had few life-years but lacks the potential to live a complete life. Considering prognosis forestalls the concern that disproportionately large amounts of resources will be directed to young people with poor prognoses."

And who determines prognoses? Something tells me it won't be doctors and families.

"When implemented, the complete lives system produces a priority curve on which individuals aged between roughly 15 and 40 years get the most substantial chance, whereas the youngest and oldest people get chances that are attenuated (figure)."

Attenuated. Good luck with that. How's that "hope and change" working out for ya?

As to potential objections that such a policy discriminates against the elderly, the authors have this to say:

"Treating 65-year-olds differently because of stereotypes or falsehoods would be ageist; treating them differently because they have already had more life-years is not."

Sure, ok. Well, I feel better now. It's not like we'd be discriminating against anyone on the basis of age or anything. :rolls eyes:

On the need to influence public attitudes to accept such a system:

"the complete lives system requires only that citizens see a complete life, however defined, as an important good, and accept that fairness gives those short of a complete life stronger claims to scarce life-saving resources."

In other words, the belief in the sanctity of life in general must go, and be replaced by the notion that a "complete life" is more important than just any life, that some lives are more worthy of saving than others. If you're over 40, just accept that you need to step aside and not expect much care, someone younger has a "stronger claim" to that care. And if your child is not yet 15 or determined to have a lower "prognosis," accept that someone older or healthier has a "stronger claim" to care. Anyone else feeling outraged yet, or is it just me?

But, let's not be too hasty. They're not quite advocating this system be applied to the entire health care system, at least not until we take some other steps first:

"Accepting the complete lives system for health care as a whole would be premature. We must first reduce waste and increase spending."

Huh? I thought we were supposed to be making healthcare more affordable, not increasing spending... won't that just increase the cost to taxpayers under a government-controlled system?

Dr. Emanuel and his colleagues are careful to distance themselves from so-called "objective" methods of discounting the value of life on the basis of disability or "quality of life," but their objection is to the attempt to quantify it. They have no problem with more qualitative methods of taking "instrumental value" into account. The fact that they advocate only resorting to that in the event of an "emergency" might be intended to reassure us, except that our current government is in a constant state of "crisis."

So what do they mean by "instrumental value"?

"Instrumental value allocation prioritises specific individuals to enable or encourage future usefulness. ... Responsibility-based allocation—eg, allocation to people who agree to improve their health and thus use fewer resources—also represents instrumental value allocation."

What exactly does "usefulness" mean? While they claim their system doesn't discriminate on the basis of disability, does anyone reading this really think that such language won't be used to discriminate against those with special needs if some bureacrat decides their "future usefulness" is less than someone else's? And how about anyone deemed "inconvenient" to society? What is the criteria for "usefulness," who decides, and why should it even matter? Can you imagine going to the doctor and being asked questions to determine your "usefulness" to society before being offered any care? The idea is unconscionable, and the sanctity of all life would be meaningless under such a system.

Where have we heard such notions before? I hate to bring up Nazi references but the similarities in thought are there. The Nazis also believed in "life unworthy of life" and saw the elimination of such people as a "healing" process for society as a whole. To be clear, Dr. Emanuel and his colleagues are NOT advocating killing anyone as the Nazis did, but denial of care via rationing would ultimately result in needless loss of life. Most importantly, it would result in loss of life that would not occur under our current system. Emanuel & friends obviously saw the potential for readers to see such parallels because they addressed it:

"Ultimately, the complete lives system does not create 'classes of Untermenschen whose lives and well being are deemed not worth spending money on', but rather empowers us to decide fairly whom to save when genuine scarcity makes saving everyone impossible."

Whew... I feel better now. Well, not exactly. Obamacare will CREATE "genuine scarcity" in many, many areas where it does not exist today, making such decisions more and more "necessary." And in reality, denying or limiting care is no less than a death sentence in many cases.

Lastly:

"To achieve a just allocation of scarce medical interventions, society must embrace the challenge of implementing a coherent multiprinciple framework rather than relying on simple principles or retreating to the status quo."

Interestingly, Obama tends to favor that term "status quo" also, and he uses it in a similarly derisive tone. Heaven forbid we hold onto a system that doesn't require rationing, especially centralized rationing, for the vast majority of care.

We keep hearing about how our current healthcare system is in a state of crisis. It's not. Are there some things that need to be improved? Of course, it's not perfect. But let's not burn down the whole town just to fix a few potholes in the road.

Read full post >>

Gov. Sarah Palin's address To The 2009 Special Olympics In Boise, Idaho (last month):



"You know what the difference is between a hockey mom and a Special Olympics hockey mom? Nothing." - Gov. Sarah Palin

H/T Worldmag.com

Read full post >>

As a follow-up to my post yesterday, here are my thoughts.

In case you missed Obama's comments, the video is at the bottom of this post (click "read full post" below). Obama was telling Leno about bowling in the White House bowling alley.

"I bowled a 129," Obama told Leno.
"That's very good, Mr. President," Leno said sarcastically.
"It's like the Special Olympics or something," the president said.

Do I think that Obama meant to denigrate individuals with special needs? No, I don't think it was intentional. But that is precisely the problem. His remarks DID belittle those with special needs regardless of his intentions. And the fact that it was unintentional just points to his own underlying biases and stereotypes, which he is obviously not even aware of.


I've seen many comments online along the lines of, "lighten up, he was making fun of himself, not anyone else."

Yes, making fun of himself by equating himself with a person with special needs.

Look at what he says. He's saying he's bad at bowling. Ok, no big deal. He then goes on to say it was like the Special Olympics. The implication there is that he's SO bad at bowling that he's as "bad" as people with special needs.

Two problems with that. First, that he just assumes that the Special Olympics athletes are bad at bowling. To the contrary, I've seen many, many instances over the last day of Special Olympics bowlers who could embarrass Barry in a bowling match. Second, that comparing yourself to someone with special needs is funny. It's not funny, Mr. President. It's hurtful.

Even more hurtful - the fact that while he personally apologized to Tim Shriver, the Chairman of the Special Olympics board (and a Kennedy, so not someone that will give Obama a hard time about anything), he did not see fit to apologize directly to the American people. Instead, a staffer offered their opinion that he "didn't mean it." That does not constitute an apology to the special needs community, in my opinion.

Deputy Press Secretary Bill Burton told reporters traveling with Obama that the president's offhand remark was not meant to disparage the Special Olympics, only to poke some fun at the commander-in-chief's bowling skills.

"He thinks that the Special Olympics are a wonderful program that gives an opportunity to shine to people with disabilities from around the world," Burton said.

When he's speaking specifically on disabilities, Obama says the right things:

"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."

-- Barack Obama, April 11, 2008

But given that his own comment unintentionally serves to perpetuate stereotypes rather than overcome them, I can only wonder if his speeches are not indicative of his true feelings.

This isn't the first time Barry O. has given reason for concern about his regard (or disregard) for people with disabilities. He expressed regret for voting in support of efforts to protect the life of Terri Schiavo, a woman who was profoundly disabled due to brain damage but was not on life support or in a coma. Rather, she had a family who loved her, was taking care of her, and wanted her to live. The only reason her life hung in the balance in the courts, was because of her disabilities.

~~~~~~~~~

I have three sons with autism. We are considering letting our older two, who will be 8 this summer, compete in Special Olympics track & field because they love to run. To my knowledge, they haven't heard the President's thoughtless comment. But wouldn't it be great for them to be able to see in the President someone who respects them and people like them, rather than seeing them as a punchline for a joke.

Did the president mean to hurt countless children and adults with disabilities and their families? No, but that is precisely what he did. He then refused to apologize directly to those he may have hurt with his comment. And from the President of the United States, we expect and deserve better.

Read full post >>

Just when I thought I might be a little overly paranoid about what happens when the government has too much control over the healthcare system, I saw this on the news this morning. It's been played over and over throughout the day, and this evening I saw that this has actually been removed from the stimulus bill. That's great, but I think it's still worth looking closer at this in the context of the implications of socialized medicine (aka universal healthcare).


Here's the video clip:

Transcript:
STEPHANOPOULOS: Hundreds of millions of dollars to expand family planning services. How is that stimulus?

PELOSI: Well, the family planning services reduce cost. They reduce cost. The states are in terrible fiscal budget crises now and part of what we do for children's health, education and some of those elements are to help the states meet their financial needs. One of those - one of the initiatives you mentioned, the contraception, will reduce costs to the states and to the federal government.

STEPHANOPOULOS: So no apologies for that?

PELOSI: No apologies. No. we have to deal with the consequences of the downturn in our economy.

This is really disturbing to me. It sounds great on paper to talk about everyone having "free" healthcare, but the reality is that it would be a disaster not only from a medical care standpoint, but just from the perspective of allowing the government increasing levels of control over our lives.

Over the years we as a country have often complained about the risks of having insurance companies making decisions about what kind of medical care their customers can have access to. Now imagine a government bureaucrat with that power. Scary thought, IMO.

Aside from the usual worries about what it would mean for waiting times to receive treatment, quality of care, and accessibility vs. rationing of care, as a mother of special needs children, I am particularly concerned about what the implications of socialized medicine would be for those with special needs.

Once the entire country depends on the government for medical coverage, how long will it be before the government starts discriminating against those with disabilities with regard to decisions on medical care because the cost is deemed "too high"?

Worse still, if the Speaker of the House can sit there and say with a straight face that family planning equates to reducing cost and is therefore a good thing for the government to be focused on, then how long before someone in the government decides to start forcing "family planning" on American citizens?

It may sound crazy, but it already happens in other countries. China enforces a "one-child" law, and in Belgium, the government can and has forced the killing of children with disabilities up to one year old in their efforts to "build a better society." In our own country, children who are found during pregnancy to have disabilities are routinely aborted.

Is it really such a stretch to fear that, if given control over and responsibility for the healthcare of all Americans, the government may one day decide that they have a right to make life and death decisions in the name of the "greater good"?

Read full post >>

I've been thinking about this all week, ever since Palin was announced as McCain's running mate. The media has been making a really big deal about the fact that "she knew ahead of time that her baby was going to have Down syndrome, and yet she decided to have the baby anyway." They say this with a sense of awe and/or surprise.

It seemed odd to me, until I learned that 90% of babies diagnosed with Down syndrome during pregnancy are aborted. 90%. I did a little research, and found that there are approximately 5,000 babies born with Down syndrome each year. So, if we assume that roughly 75% of those were diagnosed during pregnancy (just for the sake of estimating the impact), that's around 3,750 babies born with DS each year who were diagnosed during pregnancy. If that represents the 10% that are not aborted, that means there are another ~33,750 babies with Down syndrome that are NOT born each year. I don't want to start a debate on abortion, but that just breaks my heart.


This does help to make some sense of what dh and I experienced when I was pregnant with our youngest son. I had the routine blood tests done around 15-16 weeks and didn't think much of it, until the dr's office called me about a week later to tell me my test results came back showing increased risk of Down syndrome, significantly more likely than it should have been for my age anyway (I was 30 at the time). They wanted me to come in the next morning.

When I went in for my appt, they were all ready to do an amniocentesis. Seriously, the nurse came in with all the equipment ready to go, and they didn't actually ask if I wanted an amnio, just assumed that I would. Whoa, stop the bus! After all, wasn't the amnio known to have some risks too? They looked at me like I was nuts, but the nurse escorted me into the doctor's office for a more thorough consultation.

Having just been through a miscarriage (not related to any testing, just happened spontaneously, unfortunately) a few months prior, even a remote risk of miscarriage was too much for me to think about (and let's be honest, the big needle was a deterrent too). I'm not at all judging anyone who chooses to have an amnio, there are plenty of reasons to do so and the risk is pretty low. Just explaining my mindset at the time.

When I told the doctor I wasn’t interested in having an amnio, he was skeptical. He kept reminding me it was the only way to know for sure, and he told me a few times that if we wanted to consider ending the pregnancy if the results were positive, then we really need to have the amnio, and right now. We had no intention of ending the pregnancy regardless, so I declined and asked what other options we had. He reiterated that the amnio was the only way to know for sure, but said they could do an ultrasound to look for "markers" of Down syndrome. I agreed to that, and the u/s showed nothing unusual. It wasn't definitive, but it was reassuring.

Here’s his sonogram picture from that day, it looks like he’s waving :). That was the day we found out he was a boy!


I admit I was a little disturbed by how they just seemed to assume that if our baby was found to have Down syndrome, that we would most likely want to have an abortion. I had no idea how common it is to do just that. After all, I had fallen in love with our baby the moment I learned of his existence, and nothing was going to change that!

Now, I probably should have used the months between that point in time and delivery to do some research on DS and try to prepare just in case, but I didn’t. I completely put it out of my mind. This news came scarcely a month after our twins had been diagnosed with autism, so at the time, the possibility that our third child might also have special needs was a bit overwhelming. We were still trying to research autism and navigate the world of therapies, waiting lists, etc.

I remember feeling a little swell of panic as we drove to the hospital on the day our son was born. Up to that point, I had purposely not given the possibility much thought, but now we were going to find out for sure whether our son had DS. I started to think maybe I should have done some research on DS just in case, but figured we’d just have to immerse ourselves in a “crash course” if needed. As it turned out, he does not have Down syndrome. He would eventually be diagnosed with autism 2 years later.

Which brings me to my last point. Currently research is being done to enable diagnosis of autism earlier and earlier in a child’s life. I am all for that – if we could diagnose in infancy it would save both parents and children a lot of heartache, and would enable parents to seek out help for their children sooner.

But what happens if a test is developed that will diagnose autism during pregnancy? On the one hand, it would give parents time to research and prepare. But on the other hand, will we see 90% of autistic children aborted? I don’t even want to think about a world like that, and yet it has already happened in the case of Down syndrome and perhaps with other conditions that can be diagnosed prenatally. I don’t want to debate the broader “cure” issue, which I know is a hot-button topic, but I have to ask, is this what some people have in mind when they think of a cure for autism? Will there come a day when people say with amazement in their voices, “she knew her baby would have autism, and yet she decided to have the baby anyway?”

Read full post >>