Thursday, August 03, 2006

Out, out, brief candle

I attended the funeral for the daughter of a friend today. What makes this pertinent to the more serious side of this blog is that she was born with anencephaly, a congenital absence of both hemispheres of her brain. This condition is not compatible with life, and Amanda only lived 72 hours. My friend and his wife knew of their daughter's condition quite early in the pregnancy, but chose to carry her to term due to a deep conviction of the inherent sin of aborting a pregnancy, no matter the cause.

I was deeply impressed by this reasoning. Medical school has liberalized some of my feelings on bioethics, and in the abstract, I don't know that my first thought would have been to keep such a pregnancy to term. Such a situation would be painful beyond my imagining, but I would have thought carrying a pregnancy for months beyond the time at which you learned the child would not survive would be more painful still. My friends though, drew from this situation several hard lessons. In a letter they read to their daughter at the graveside they said medical school had drained from them the ability to love, an ability Amanda restored in her brief stay.

"Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him.

She has also given me cause to reconsider my liberalization, to ponder more deeply when life begins, and what it is. Like my time on the psychiatry ward, exposure to someone who lacks the higher brain function I possess casts me into uncertainty about the nature of life and the nature of G-d's love for it.

Amanda was also able to give a hope she lacked to others, in that despite her condition, she was able to donate heart valves after she died, to two other critically ill children. The issue of organ donation is probably deserving another entire post, and it's one I'm not able to write at present, since I'm still conflicted about it. But it is to amazing to me that this possibility was only considered by them after they decided (not that there was ever any doubt) to keep their pregnancy.

I am left in awe of the faith of others, who found support in G-d, and trusted him enough to follow their convictions, to learn hard lessons, and to see G-d's love even in pain.

Requiem aeternam dona eis, Domine, et lux perpetua luceat eis. Requiescant in pace. Amen.

14 comments:

medstudentitis said...

I very much respect these people for sticking with their choice. I am pro-choice and as (hopefully) a future ob/gyn I think it is all of our responsibility to respect the choices of our friends or our patients and try to understand where they're coming from. I'm sure this was very hard for them but it sounds like they've found what happiness they can in knowing that they followed their hearts and gave some other children the chance to live.

MrStandfast said...

The previous poster remarks...

"I very much respect these people for sticking with their choice... I'm sure this was very hard for them but it sounds like they've found what happiness they can in knowing that they followed their hearts and gave some other children the chance to live."

As though that were the point. Of course, when thinking of things in as "pro choice" that would be the point, that individual autonomy was respected, that the good of the situation lies in the parent's liberty coupled with the wholesome knowledge that heart valves did some material good. I read a doctor a few months ago who said that when he performed an abortion he was protecting life, "giving new life" to the mother. Of course, the issue of abortion is a big one, and of course there won't be a sudden blinding defeat of either party. To be dispassionate about things, both sides make persuasive arguments. What I cannot and will never understand is how a culture so obsessed with prolonging improving and cultivating life has looked at a situation with some pretty significant gray areas and made the decision it has. How on earth does anyone say to themselves, "well it might be a life, and it might not, there's vigorous debate on when a fetus becomes a life," and then decide to assume it isn't? Wouldn't the wiser logic err on the side of assuming it is?

Like I said, that discussion is massive, and I don't suppose I'll solve it here. But the point, so perversely missed by the last poster is not some vague idea of personal liberty and self fulfillment was cultivated. Thankfully we order our liberties in this country. The point was that life was affirmed. That's a more difficult message to embrace...because of course, that girl stood no chance to live. When you look at it like that it's pretty clear that a sacrifice was made. A sacrifice for what two people believed was true. Truth is a much much grander thing than happiness.

medstudentitis said...

I'm sorry that you disagree mrstandfast with my beliefs that every individual has the right to free will and can choose for themselves what they do with their bodies. You are entitled to your beliefs and your opinions and I am not going to tell you or your loved one to go get an abortion if you don't want one. I believe in personal liberties and I'm sorry that you don't.

MrStandfast said...

I haven't the time to explain the concept of ordered liberty on which our government is founded in its entirety, so allow this to suffice, that you may no longer labor at the stone of logic.

Liberty is like fire. Of course I believe in liberty (as in I affirm it). However, if we believed in boundless liberty people could kill rape pillage etc. without restraint. Borrowing the logic you plied in deducing that I "don't believe in personal liberty" then you, by extension, believe in unchecked raping and pillaging. Of course you don't. That's why we have laws and wear clothing and don't travel in packs of 5 or 7 with hand made weapons eating uncooked lizard meat. With me so far?

The heart of my point was not about liberty, or whether or not you tacitly affirm all those squishy indefinables that liberals affirm to quell logical hemhorages. My point was about the circumstance. You misunderstood what was significant about that couple and their choice. If you can honestly reread what I said in my last post and still think that what made their decision worthwhile was the fact that they were free to make it, and that it made them happy...
I think you're in for a future of some chilling bedside manner.

MrStandfast said...

I'm sorry, I'm not trying to be a stodge or a jerk, I guess that came off something like like that...it just moved me strongly.

Nathan said...

mrstandfast, I think you're being a bit hostile, but you do point out something I think wasn't clear in my post. I was primarily impressed by the fact that my friends did not weigh organ donation in their calculus, and indeed, were told that it is not always a possibility. Instead, they held fast to their considerable religious convictions, despite the pain it caused.

medstudentitis, like I said above, I think you glossed over, or perhaps missed, the point I was trying to make, and I think it's because I wasn't entirely clear in making it. I do probably disagree with you on the extent to which you take your pro-choice convictions, but like I also said in my post, I'm far from being completely settled in one camp or the other on this.

Overall, your comments exemplify the reasons Amanda's short life has been such an influence on me. I think there are many important lessons to be drawn from it, and my hope in writing about it is to record the consideration I am making. A bonus would be to inspire similar consideration by others.

medstudentitis said...

Mrstandfast:
I know that it is to your advantage to see me as an uneducated ignoramus and to belittle me by being as patronizing as possible but I assure you that I am neither. My definition of personal liberty, specifically the right to be able to do what one wishes with their body, does not extend to the right to oppress the liberty of others. I believe that a person has the right to do to their body what they choose and by the same token, one person cannot interfere with another's personal liberties. Rape and pillage would fall into the category of interference with another's liberty, would it not? In a just society, one cannot confer the right to personal liberties on one individual without granting that to everyone – thus allowing people to harm one another would be a fundamental violation of personal liberties.

I could talk about all the normal examples that highlight circumstances of when abortion is controversial, but I think that is a cop-out for people who believe that everyone has the right to choose. No matter who it is, I am committed to supporting and providing care to whoever needs it. No matter their choice.

Oh and Nathan, I didn’t mean that I thought that donating organs played a huge role in their decision and I’m sorry if it came off that way. I meant that I can appreciate that they were in a horrible time of their lives and I think it’s a fantastic show of strength that they could think of someone else at that time and provide someone else with the chance to live.

MrStandfast said...

Medstudent -
I apologize for being unkind. I certainly don't see you as uneducated or an ignoramus. I admire the heck out of you future medical professionals and the amount of schooling you go through. They're probably right when they say you forget more than most of us ever learn.

Despite where we disagree I admire greatly your decision to provide care for people regardless of their choices. That's about the best thing a medical professional can believe.

Of course you're right about personal liberties. Our personal liberties are thankfully protected in America.

The abortion dispute is about whose rights we're protecting, the mother, or the aborted child. Then the debate's about if the fetus is a child, when it acquires humanity if at all...and on and on ad infinitum. That was my original confusion, and it still stands. Our culture hates more than just about anything the loss of life.
The science of that discussion is best left to you scientists and doctors. Like I said at first, what is or isn't a life is undecided scientifically, meanwhile the laws have assumed that first trimester fetuses, have not acquired lives and rights just yet. But anyway, there's something indefinable in all of that, something semantic. It isn't about fingers and toes, and I don't think it's about science either. I think you're right, I think it's become about liberty for most folks. And for the moment, and the forseeable future, your argument for the mother's personal liberty has won the day.

Then again, it might be worth considering, if we acquire out personal liberties, then we can lose them too.

Cormac Mccarthy writes,

"She kept on, kept on. Finally told me, said: I don’t like the way this country is headed. I want my granddaughter to be able to have an abortion. And I said well mam I don’t think you got any worries about the way the country is headed. The way I see it goin I don’t have much doubt that she will be able to have an abortion. I’m goin to say that not only will she be able to have an abortion, she’ll be able to have you put to sleep. Which pretty much ended the conversation."

medstudentitis said...

I think the slippery slope argument that once we allow women the free right to abortion (which is NOT currently available in any free way in certain parts of the USA or Canada) we will start allowing people to kill people (i.e. the elderly) is not valid. It's like saying that once we allow people to donate their kidneys while they are living we can't stop them from donating their hearts while they're living (thus committing suicide). Anything in life can be a slippery slope but that's where debate and discourse are important - to be the checks and balances in society. Like the discussion we're having here - which has been fantastic and passionate.

I agree that this argument in the big picture has become an issue of liberty and I hope that it remains as such because that's what I see as the fundamental issue here. I don't think everyone will ever come to a consensus on when they think life begins, but I think we have to respect others' beleifs and be civil. I think we can all agree that a baby is a baby when it is outside the mother's body but beyond that I think there will be debate indefinitely.

I agree to disagree! But keep discussing it!

MrStandfast said...

It isn't to say we can't stop one thing from following another, it's to say we might not. Having made the assumptions our culture has, it's not an outlandish thing to say. Euthanasia is actually gaining substantial ground, especially in socialist nations where the state (and john q taxpayer) ends up bearing the burden for the sick and elderly.
Anyway I assume you feel people ought to be able to donate their hearts while alive. It doesn't get much more personal than that, and oddly enough, I disagree with that less that the abortion issue.

probably my last word on the subject, but there's a bit of barbarism in making the discussion only about liberty. You can't have one discussion without the other, because like I said, if the fetuses mind and body constitute a life, then I'd say a lot of liberties are encroached upon daily. I can't see how that doesn't make liberals and conservatives equally furious.
The assumption that has taken place is convenient, in that the capacity of infants and the unborn (and the very sick or elderly for that matter) to dispute claims is somewhat limited.

Having seen birth, as I'm sure you have as well, apart from the grandeur of it, it's a messy business. But there is no moment of birth. It's a process. Where in that process you see life begin I don't know.

As I've reiterated, I am primarily confused. Why does the assumption go the way it does?

medstudentitis said...

I think the assumption goes the way it does because people are more inclined to give the choice to the living and breathing human being rather than the aggregation of cells that cannot survive on its own. I think that's why there's so much controversy about third trimester abortion - because the fetus could survive on its own outside the womb with medical support.

I think euthanasia is a whole other issue because it deals with many complex issues that are in many ways very different from the abortion debate. Such as, when does an individual lose competency to make decisions for their self, when do advance directives hold and when do they not, can a person ever fully appreciate the consequences of an advanced directive. If faced with an individual who has requested to die when they are put on a ventilator and they are unconscious, how do we know that they wouldn't have changed their mind once faced with the moment of pulling the plug? I think many agree that an individual who doesn't want to have their life ended by artificial means shouldn't be euthanized, but what about the individuals who do want to be spared the pain of death or who feel that they'd like to go before they lose what they see as their dignity? Who should be charged with carrying through that person's wishes? Is that the doctor's place? These are questions that I struggle with.

Steve Hayes said...

I'm not a medical expert, and my field is not medicine by language, and one thing I found interesting was your comment about "liberalized" feelings about bioethics.

The word "liberal" seems to be changing its meaning. I've regarded myself as a liberal for most of my lifwe, and was a card-carrying liberal until the Liberal Party was forced to disband, but I always thought (and still do) that one of the essential features of liberalism is that it seeks to protect the weakest members of society from the depredations of the strong.

I find it sad that some people are now using "liberalism" to mean a philosophy that guarantees the rights of predators and removes the rights of their prey.

Nathan said...

To all, thanks for commenting, I think I'm going to need more space to adequately reply. Briefly though:
Steve, I think you're right.
Medstudentitis, though I disagree strongly with your phrasing, I do not mean to offend, or to attack you. MrStandfast, thank you for returning to civility.

Nathan said...

Fuller response at:
http://jollycompany.blogspot.com/2006/08/more-thoughts-on-amanda.html