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Life Begins At...
A surprising moment of humanity from the church -- in this case, the Church Of England, calling for doctors to be given the right to withhold treatment from seriously disabled newborns "in exceptional circumstances." Like, say, when their lives will be constant suffering. Amelia Hill and Jo Revill write for the London Observer that a bishop admits right to life for newborns is not absolute:

The church leaders' call for some children to be allowed to die - overriding the presumption that life should be preserved at any cost - comes in response to an independent inquiry, which is to be published this week, into the ethics of resuscitating and treating extremely premature babies.

The decision by religious leaders to accept that in some rare cases it may be better to end life than to artificially prolong it is a landmark for the church. The Rt Rev Tom Butler, Bishop of Southwark and vice chair of public affairs of the Mission and Public Affairs Council, states in the church's submission to the inquiry, that 'it may in some circumstances be right to choose to withhold or withdraw treatment, knowing it will possibly, probably, or even certainly result in death'.

The church's report does not spell out which medical conditions might justify a decision to allow babies to die but they are likely to be those agonising dilemmas such as the one faced by the parents of Charlotte Wyatt, who was born three months prematurely, weighing only 1lb and with severe brain and lung damage.

The report also suggests the enormous cost implications to the NHS of keeping very premature and sick babies alive with invasive medical care and the burden on the parents should also be taken into consideration.

Doctors wanted to switch off Charlotte's life support machine because they said her severe mental and physical handicaps left her in constant pain with an 'intolerable' quality of life. They pointed out that every time she had an infection, staff would have to give injections or set up drips that caused yet more pain.

After the case went through the courts, the child, now three, survived but with severe disabilities. She is now in care as her estranged parents found it too hard to meet her 24-hour healthcare needs.

...But it accepted there were a range of reasons why the final decision to withdraw or refuse treatment should be made, including the question of cost. 'Great caution should be exercised in bringing questions of cost into the equation when considering what treatment might be provided,' wrote Butler. 'The principle of justice inevitably means that the potential cost of treatment itself, the longer term costs of healthcare and education and opportunity cost to the NHS in terms of saving other lives have to be considered.'

Very premature babies run a higher risk of brain damage and disability. If they are born at 22 weeks, 98 per cent of them die, though by 26 weeks the chances of survival has risen to 80 per cent. Different counties have different policies for very tiny infants.

Babies born before 25 weeks are not given medical treatment in the Netherlands and in certain conditions, euthanasia is permitted.

Hmm, maybe, just maybe, being "pro-life" shouldn't mean forcing a preemie to be kept alive to endure horrible suffering...or keeping alive an adult who's a shell of a person. Personally, while I place great value on life, I'm also pro-death -- for letting go when life becomes too painful to live...physically or psychologically. And for devoting medical care funds to people who have a hope of a life beyond laying in a bed like a big turnip. Just because we have extraordinary measures for keeping somebody, or rather, a shell of somebody, alive doesn't mean we should use them.

Posted by aalkon at November 13, 2006 8:13 AM

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Well, this one hits pretty damn close to home. When my son was delivered by emergency C-section, his breathing and heart had stopped. He was full-term, but I hadn't yet gone into labor when apparently the placenta became partially detatched, depriving him of oxygen for apparently several days. The doctors continued to try to resucitate him long past the point where there was certainty of brain damage. At 9 years old his mental functioning is that of a 2-3 year old, and will be dependent on others for care for the rest of his life. Once we knew the extent of what happened, we kept asking the doctors why they had continued to try to revive him, but never really got an answer besides that they try to err on the side of life. I love my son more than anything, and even with his disabilities he's doing much better than his prognosis at 5 weeks when he was released from the hospital, but I still question the "life at any cost" orientation.

Posted by: deja pseu at November 13, 2006 6:00 AM

I admire you for many things, Deja, but especially for your honesty in posting that.

Posted by: Amy Alkon at November 13, 2006 7:03 AM

Our technology is out of sync with our religious beliefs.

I’ve been the primary care giver for the past three months for my dying father. We are using hospice and have a living will, but the choices are still tough. Don’t resuscitate, don’t use a feeding tube, don’t call 911…

Posted by: Roger at November 13, 2006 12:09 PM

Deja -> props.

Posted by: Crid at November 13, 2006 3:23 PM

Antoine was born premature (10 weeks - and this was 41 years ago, when almost no babies survived when born that early) and had last rites administered because the doctors truly did not think he was going to survive. I'm glad they didn't have the authority to decide to "end his suffering" out of some misplaced arrogance and presumption.

Posted by: Jackie D at November 13, 2006 11:40 PM

Being born 10 weeks premature isn't the same as being born into a life -- or a short life -- of suffering.

According to Michael Gazzaniga's "The Ethical Brain," a fetus becomes "sustainable" at 23 weeks. That's when, "with a little help from a neonatl unit" it could "survive and develop into a thinking human being with a normal brain."

I realize you have a personal emotional connection to this, Jackie, but too many babies are brought into this world out of some misplaced "pro-life"-ness when what the people really are is pro-suffering. Are there rare instances when a child makes it against the odds? Sure. But, a child with some terrible disease and little chance for survival beyond a few painful years -- do you really want to bring it into the world for a life of suffering? I think that's pretty horrible and inhumane.

Posted by: Amy Alkon at November 14, 2006 12:08 AM

Two weeks ago we found out our Leonberger Hoggle had bone cancer, and we had the vet come out two days later to put him down. It was quick and painless, like falling asleep. I can't help but know that many in hospices and at home would be lucky to have this option available to them.

(I hope to go over something like Niagra Falls in a kayak with a bottle of Dom when the time comes...)

Posted by: eric at November 14, 2006 8:27 AM

While I do have a personal connection which demonstrates to me just how flawed human reasoning can be, my view is not based on any emotion I feel when I consider the fact that some of these doctors would have happily killed Antoine just because they felt it would be more 'humane'. (He was so small, they could not even lift him to put him on a scale. The prognosis for quality of life was not very good.)

The fact is that humans make mistakes, and I would not trust humans with this kind of authority. The practicalities have not even begun to be explored by those who think it's a fine idea; just because "Wouldn't it be nice if no one ever suffered" sounds agreeable enough, it doesn't mean there is a solution which would respect the rights of all individuals and be free from corruption and error. I can't believe that even needs to be pointed out.

Posted by: Jackie D at November 14, 2006 9:51 AM

As someone born in the 26th week of a pregnancy in 1965, thank you for the kind suggestion that I should have had the decision as whether I should be allowed to live determined by a bureaucrat. Who would speak for me?

If you even suggested that it would be reasonable to send me the bill for my 10 weeks in an incubator, I might think your position was rational. I guess that over the past 41 years, a few pennies a week would have covered the burden.

The whole abortion/euthanasia argument comes down to saying that because a human is non-sentient, they're not humans. By that token, why isn't vivisection on people in comas ok? Or on people in a deep sleep? Surely most pre birth embryos could be considered to have a similar level of consciousness as a person in a deep sleep or under anaesthetic? In fact, unlike many coma victims, most embryos will wake up, if someone doesn't decide to [use any word except "kill"] them first.

I can agree that women have the right to remove foetuses from their wombs. They even should have the right to give them away or sell them. I just disagree that they have the right to kill them afterwards. It's not like women are too stupid to understand the mechanics of avoiding a pregnancy.

Posted by: Antoine Clarke at November 14, 2006 2:49 PM

Personally, if I'm a paralyzed, brain-dead tuber in a bed, I don't want to be kept alive at great cost when the money could be spent on caring for somebody who has a chance at life.

An embryo is not a person, it's a potential person. I suggest reading Gazzaniga's book on this. He gives a great comparison: Home Depot has, say, the potential for 30 houses within its walls. If Home Depot burns down, we don't say 30 houses burned down, we say Home Depot burned down. A potential person and a person are not the same thing. Whose decision should it be? Well, the woman carrying the child, in my opinion.

Posted by: Amy Alkon at November 14, 2006 3:37 PM

And even once the "carrying" is over, the burden goes on. Thoughtful opinions of from our Dejas need to be heeded.

Posted by: Crid at November 14, 2006 8:34 PM

I agree. It's not PC, but then, neither am I.

Posted by: Amy Alkon at November 14, 2006 9:20 PM

I don't hear anyone urging political correctness - reason and rationality would be good enough. Or is it "PC" to want to live in a world where every individual's rights are respected? I'm pro-choice when it comes to abortion, but I am not in favour of bureaucrats being given the authority to kill children.

Posted by: Jackie D at November 15, 2006 4:01 AM

Agreed... But it often seems like in extreme cases, bureaucrats are the ones who are left to deal. Not every troubled child has a loving Dega hanging around to make things go. Besides, most doctors don't think of themselves as bureaucrats, they think of themselves as action figures. If I read Deja's story correctly, she's suggesting that perhaps the sport of their craft made them too enthusiastic. Inertia works both ways.

My (very limited) experience in such things comes at the other end of life. Doctors will --with sincere best intentions-- protect health that dwindles with tragic, painful slowness rather than risk a sooner, but less excrutiating (and perhaps actionable) death.

Posted by: Crid at November 15, 2006 4:42 AM

You try spelling that an hour before dawn: excruciating

Posted by: Crid at November 15, 2006 4:45 AM

That's what I have a problem with -- keeping a tragically ill child or compromised potential child alive against the parents' wishes. Look at the Terry Schiavo situation, with all the scientifically dense primitives in Congress coming to the defense of a woman who was, effectively, a turnip.

Posted by: Amy Alkon at November 15, 2006 4:51 AM

I read Deja's story correctly, she's suggesting that perhaps the sport of their craft made them too enthusiastic.

Yeah, that's pretty much it. That and maybe fear of malpractice litigation.

Posted by: deja pseu at November 16, 2006 3:03 PM

Interesting thread. I had the opposite experience last year: a nightmare pregnancy with a poor prognosis (for me), and a half dozen physicians who attempted to badger me into aborting a healthy fetus at 17 weeks. A lesser personality may have crumbled under the onslaught, and ended the "potential for life" right then and there. My 16-month-old daughter, born at 32 weeks, is perfectly healthy and pure delight, and I eventually recovered fully. I agree that doctors often make poor decisions and give bad advice based on their own desires to be successful at their craft and to avoid litigation. Yet we treat them like gods, even giving them a special title so we can distinguish them from the rest of us mere mortals. Curious.

Posted by: Tess Hare at November 20, 2006 6:24 AM

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