Tuesday, September 23, 2008

The Politics of Pre-Natal Screening

I have intentionally avoided much comment on the US election. Trying to be a good neighbour and all. After all, it's really not my business (other than as an affected observer) and it's all too divisive anyway.

Until today, that is. My attention grabbed by the headline, "U.K. Mother Murders Daughter Because "Embarrassed" by Disability", I really didn't expect to find much more than the usual macabre story of a parent unable to "cope" with their child's disabilities. Takes all kinds to make the world go around, as they say. Too bad it's the innocent children who pay the price.

I certainly didn't expect this particular political spin.
This trial, which is still in progress, comes during a week in which the devaluation of children with disabilities has been very much in the media spotlight, thanks largely to Gov. Sarah Palin's much publicized decision to carry to term her son Trig, who has Down's syndrome.

Prominent bioethicist Wesley Smith recently commented on the media bias against Palin, and says it occurs in part because, "Palin is viewed as 'the other,' symbolized by her and Todd's (Palin's husband) loving acceptance of Trig."

Smith said he hopes that the unconditional love the Palin's show to their son Trig will be an example for a world that is evermore justifying murder of the innocent.

"I hope that people will decide to emulate the Palins in their unconditional acceptance and love for their beautiful son, Trig," said Smith.
Well, gee, I hope so, too. But, I'm still not sure I see the connection. Fortunately, Patricia E. Bauer's blog makes it a little clearer:
Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC), says he is concerned that abortions in the case of Down syndrome may decline as women follow the example of Sarah Palin. Palin’s infant son Trig was born after she received a prenatal diagnosis of Down syndrome.

From the Globe and Mail:

As a vocal opponent of abortion, Ms. Palin’s widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to Lalonde.

Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families.
Things that make you go Hmmm. Is it possible ... could it at all be related to this?

Yes. Yes, it could. And it goes something like this. Last year, the Society of Obstetricians and Gynaecologists of Canada and the Board of the Canadian College of Medical Geneticists issued a recommendation that all pregnant women be offered screening for Down syndrome. Sounds good, right? Until you consider the fact that statistics point to over 90 per cent of pregnancies diagnosed with Down syndrome being terminated.

Which leads to the question of just what exactly parents whose pre-natal screening show that their child will have Downs Syndrome are being told. And perhaps more importantly, what aren't they being told?

It's one thing to say that "It is estimated that 90 percent of women in Canada who receive a prenatal diagnosis of Down syndrome decide to abort their pregnancies". But it's completely another matter to ask how informed and real that choice really was.

I must confess that when I was first put on to this issue earlier this year by the Nova Scotia Down Syndrome Society, I had trouble seeing a real issue. Until I stopped to actually think about exactly what type of information was being provided to parents as part of this screening service.

It's no real secret that doctors generally paint a very dark picture of life with Down syndrome during prenatal diagnoses. In fact, it's this very situation which has led to the Canadian Down Syndrome Society challenging the ethical implications of the recommendations by the obstetricians’ group. And to the currently circulating Petition for a Prenatal Diagnosed Condition Awareness Act. A Petition I have wrote more extensively about here.

Now let me make two things clear here.

First of all, unlike some of the commentors here, I don't believe that this is an issue of 'socialized medicine'. No matter how fun and easy it is for our American friends to go there in a hurry. After all, the best defence is a good offence, as they say. But that would likely serve as better fodder for another blog post.

No, I see this is an issue facing many different countries with different health care systems today. And I think these doctors are, for the most part, motivated by what they feel is 'doing the right thing'. Not so much for the sake of the health care system or the the cost to society, but for the parents.

The poor, poor parents.

Remember, it wasn't that many years ago when (nearly) all challenged children (be it physically or mentally) were placed in institutions immediately at birth. As societal values slowly change and technology rapidly advances, many (including the medical professionals) are left scrambling to play catch up. Some, perhaps, at a quicker pace than others.

Secondly, I am not for one minute advocating that every woman pregnant with a child with Down syndrome, or any other disability for that matter, should be or is obliged to carry that child to term. We all need to remember that as a society we have a hell of a long way to go in providing proper support and services for individuals with disabilities and their families. It is not an easy row to hoe, not always an easy life to live. And yet many, many will share you with the positive ways their child has impacted not just their life, not just their family's life but the lives of all those they touch.

But here's the thing ... if we believe in a right to "choose", if we are ever going to give more than lip service to that concept, we must never forget that the key word is choice. As in making that extra effort to ensure that the choices are promoted in a fair and valid manner. Which means giving giving people all the information they need to such a life-altering choice.

But getting back to Sara Palin, in the words of Krista Flint, executive director of the Canadian Down Syndrome Association:
“We know overwhelmingly the message families get is ‘Don’t have this baby, it will ruin your life,’” Flint says. “And I don’t think people would look at Sarah Palin and see a ruined life. Regardless of politics, I think it’s a good example.”
So love her or hate her (and God knows there's enough of both swirling around the blogosphere), you have to give Ms. Palin credit where it's due ... she might just be bringing into light an issue that has for too long been in the shadows. And that, no matter what your political persuasion, has to be a good thing.

As an aside, it's interesting to note that Dr. Lalonde has apparently attempted to clarify his previous remarks. According to the L.A. Times,
Doctor Lalonde's point of view should not have been portrayed as a concern that the number of abortions would decline but rather, as expressed in the Globe and Mail, that women would be influenced by Gov. Palin's decision to keep Down syndrome children that they were neither emotionally nor financially prepared to care for.
Which is a good thing, I suppose. Particularly when you consider that one of the principal precepts taught all physicians is "First Do No Harm".

Update: Just in case anyone continues to labour under the false belief that this is a 'socialized medicine' issue. It could just be that Canadian doctors are being more up-front about it, is all.


doorkeeper said...

long post--so many thoughts.

Here's a trivial one:
"It doesn't take all kinds of people to make a world, there simply are all kinds."

I can't find the author, and it's slipped my mind. I almost think it was PT Barnum

doorkeeper said...

Thought #2: post says:
Which leads to the question of just what exactly parents whose pre-natal screening show that their child will have Downs Syndrome are being told. And perhaps more importantly, what aren't they being told?

In a world/country/pair of countries where the plain and simple facts of the dangers in vaccination are never told, where it's glossed over with "there may be some redness and tenderness at the injection site" what more can we expect of prenatal testing?


doorkeeper said...

Thought #3:
(maybe it's the painkillers I am on!) post says:
First of all, unlike some of the commentors here, I don't believe that this is an issue of 'socialized medicine'.

I don't necessarily believe it's an issue confined to socialized medicine. I believe it's an issue confined to countries where the standard of living is such that we can indulge in such "luxuries" as abortion-on-demand as part of routine health care. When our SOL becomes so great that any and all healthcare seems an entitlement, someone pays the bills. And in countries such as ours, the bottom line drives a great deal of the policy making, and the thought processes, of those who are "in charge."
Of a sudden, we can rid ourselves of all difficulty and inconvenience, health-wise--and the thought seems to be that we should never suffer in any way. IT'S JUST NOT FAIR! Whether it be missing a day of work over the 'flu, or missing out on a "life" because of a child who is different.

Why, perish the thought--and you know, we could save so MUCH $ in healthcare if we just did not have to take care of those--inconvenient--expensive--you-fill-in-the-blank--people.

I believe this attitude is what leads to socialized medicine. And many countries with it, justify euthanasia, abortion, infanticide, and practice them.
The US will join the pack, I fear. And Canada will probably follow. Although, you northern ones seem to be subtly different in many ways--perhaps you can avoid the pitfalls?
Nah. Not as long as accountants and politicians decide the course of medicine, and life.

doorkeeper said...

Thought #4, a big one for me: post says: Remember, it wasn't that many years ago when (nearly) all challenged children (be it physically or mentally) were placed in institutions immediately at birth.

Where? When? I have listened to many stories from generations past, and I've never heard this. My grandmother has related tales from her own grandmother's time (circa 1860, at least) and I've never heard of anyone who "placed" their child...but I grew up with a variety of disabled people of all ages, and for all reasons. Perhaps it's the seriously rural areas where we just play the hand we're dealt--the one case I can think of where a person was "placed" was an adult with severe schizophrenia, and he came home to live out his life as soon as the evals and meds were in place.
I hear this a lot--that people were ashamed of the disabled, and that they were hidden away or institutionalized, but I can't point to any "real" examples.
perhaps I'm just naive.

doorkeeper said...

and one last thought:
"But here's the thing ... if we believe in a right to "choose", "

what if we don't?

what if LIFE is more important than "choice?"

I find "Dr." Lalonde's arguments specious, and indeed, pure sophistry. But then--those who require us all to live by their idea of "convenience" often use sophistry.

It helps them avoid giving services to those of us who don't "choose" their way.

doorkeeper said...

just one question, though...what's the provenance on the pic? what stage of gestation is it supposed to be? It's obviously not a real photo...unless it's very early in gestation, and the "pro-choice" people rarely let those out.


MMC said...

Geez, doorkeeper, shall I assume you *liked* the post? ;-)

First of all, no provenance to the pic. Just something googled off Google.

The "socialized medicine" issue ... I have noticed a few online American friends who seem quick to jump, particularly on issues like euthenasia, and blame it on socialized medicine. It's a little hard to answer that back with fact-based examples when most developed countries have some form of gov't health care, even if partially combined with a private model.

I do agree it is likely much more of a SOL issue. But to say that attitude "leads to" socialized medicine? Please do explain ...

If you look at this link [same one found in my Update to the post] you will see that the American College of Obstetricians and Gynecologists has taken the same position on this issue as their Canadian counterparts; it's just that their media release doesn't directly mention abortion as the usual fate of he “screened” babies.

And this fear so many Americans appear to have about "accountants and politicians deciding the course of medicine" ... well, as we've discussed before, that appears to be a reaction to what you see where your gov't bureaucracy is already involved in health care. Therefore there is a tendency to paint all others with the same brush? I don't know but we do seem agree on the point I was actually trying to make there. BTW the "commentors here" that I referenced were comments made on the original post on the Bauer blog.

As far as my comment on challenged children being placed in institutions ... my two older sisters were so placed, as two examples. Of course that was only after my mother realized she couldn't deal with their needs, along with those of a new baby (my older brother) and my father who was in a wheelchair. But beyond that, I can't quote you chapter and verse, but in many books I've read comments along the same vein. And we certainly know of enough parents, even today, who have been counseled to do the same when the child's disabilities appear severe at birth.

But, perhaps, it is, at least to an extent, just a popular myth. Still, I believe there is some truth to it. And that a large portion of society is still playing catch up in that regard. Including the fact that we can now save, at birth, many babies who would have died before.

On believing in the right to choose... interesting semantic issue there, of course. If you are not pro-life, does that mean you are pro-death? And if you are not anti-war (as in Iraq) does that mean you are pro-war? Weird, but I digress....

My point was this, if you consider yourself pro-life in all circumstances, there is no issue. You will keep this baby. If you consider yourself pro-choice or even pro-life (but recogize some exceptions like rape of the mother or disability of the child), then to be intellectually and morally honest, I believe you have to actually give a CHOICE... as in full information, pro and con, so people can make a real decision, much like the legal concept of "informed consent".

Okay, I think I got it all?

Punkys Dilemma said...

I would think that because abortions are practiced worldwide in almost every sect of the medical profession, I don't see how socialized medicine plays any part in this. Private sectors abort babies just as much as gov't services.

You know that because of my disabled daughter, I'm one of those parent's that believe she's my blessing. On the other hand, we know how maddening it can be too. I agree that physicians, nurses, social services that represent doctors...they all really need to be better at informing couples faced with any anomalies with their unborn child. This isn't a matter of socialized medicine or private institutions. Its a matter of ethics and morals. I could never tell a woman what she should do. Whether she chooses to keep her baby or abort it, is most definitely not for me to judge. I've made my choice, Sarah Palin made her choice. And my niece's girlfriend made her choice to abort her baby. That hurt like hell when she made that choice, but thats what she did. What really made me so angry, so unfair to the couple, so unethically immoral....was that the doctor had urged her to abort. Never giving her the alternative information. But merely telling her what a burden it would be to have a Downs kid. What a horrible position to put that couple in, without giving them the information of other options.

Perhaps there will be women who will be influenced by Sarah Palin's choice to keep her Downs baby but unable to care for them for whatever reason. Visualizing the two scenario's either by giving the child up for adoption rather than aborting the child....for certain both are traumatic. But I wonder which would leave a deeper scar. Hard to say I guess.