This post is not a review and contains no spoilers. It does touch on the abortion issue, for which I ask that commenters tread lightly with respect towards people with differing views.

Last week I listened to the audiobook for Jodi Picoult’s My Sister’s Keeper. Clancy read and highly recommended the book and the plot actually tied into a hypothetical I was thinking may put into a creative project some day. So I took a break from Tom Clancy and detoured to Picoult. Though there’s something about Picoult’s writing I find a little offputting – I can’t put my finger on exactly what – the book itself was excellent, with the plot outstripping any of Picoult’s expressive peculiarities.

The story revolves primarily around the Fitzgerald family and two sisters within it. Older sister Kate was diagnosed with leukemia when she was three or so. Her parents, Brian and Sara, then had another daughter, Anna, by way of science so that they would have a donor to save Kate’s life. It was initially successful, but over time more and more became required of Anna to keep her sister alive. The novel starts with her at age 13 (Kate is 16) with her parents gearing up to volunteer her kidney for a transplant to Kate. For Anna, who has given blood, bone marrow, and more for her entire life, this is the last straw. She hires a lawyer so that she can be medically emancipated and make her own medical decisions.

The novel is more of a problematic than anything. By and large, none of the characters are completely good and none are evil. Most, with the exception of the sisters’ brother Jessy, are decent people. But the story involves complicated decisions. I came to my conclusion as to what should happen pretty early on. As the story progressed, though, my mind moved on to a more fundamental question: how do you determine the tradeoff between the quality of life of the many versus protecting the life of someone that has been dying almost since they were born. Is it better for there to be four satisfying lives or five dissatisfying ones?

The Fitzgeralds, including Anna, love Kate. There are bouts of resentment from her siblings from time to time, but it’s not like Kate chose her fate nor are the actions of her parents anything less than completely understandable and by and large Jessy and Anna realize this. Brian and Sara, the parents, love their daughter immensely, but there’s no denying the toll that a daughter always one relapse away from death has taken from their lives. Brian comments to one of his fellow firefighters that he stays at work late because, if he didn’t, he would have to go home. The lack of attention that Jessy got helps lead him down a wayward path where misbehavior is the only way he gets attention. And Anna is not allowed so much as to attend hockey camp. Not because of financial reasons, but because something could go wrong with Kate and she would need to stand by with parts to donate to the cause.

It’s hard to look at this situation and not wonder, at least a little bit, how much happier this family might be if Kate had simply rejected the initial transplant and died when she was three. Jessy might have gotten the attention he needed. Anna would have been able to live her own life. Brian and Sara would have been more husband and wife and less disaster management partners, which is what they became. Of course, it would be a raw deal for Kate. She would be dead. It’s tempting to dismiss this as a question of whether her life, lived in constant acceptance of the inevitability of coming death, is worth living. But when it’s your life, it’s different than merely speculating from afar. Studies have demonstrated that being crippled, for example, ultimately does not have much bearing on levels of happiness.

My friend Rick is staunchly pro-life when it comes to abortion and euthanasia. That I even ask these questions would render me, in his view, a card-carrying member of the Culture of Death. On the other hand, during the Terri Schiavo debate there really seemed to be a number of people that believe that the plug should be pulled not out of a sense of autonomy, but because they had simply decided that her life was not worth living. Even if there were a health care family and even if Terri and Michael Schiavo had been divorced, their view would have been the same. Though I came down on the side of the plug being pulled, it was on a somewhat different basis. If it weren’t for the fact that she was legally married to the man who legally decides what she wants, and if it weren’t for the fact that such care costs an already expensive health care system even more money, I would be perfectly content for her to live her life as a vegetable. But given the givens, and given her state at the time, I believe that the right conclusion was reached.

Easy for me to say, I know. And I had to remind myself of this over and over again when it came to Kate Fitzgerald. I had to fight off the belief that “Look, she had 13 more years of life than anyone ever expected. It’s time for everyone to move on.” Easy for me because I am not Kate and I do not love Kate. The fighting off of that belief was not, however, fully successful. While the Kate/Anna situation may be uniquely derived for the sake of an engaging novel, it’s something that we’re confronted with on an institutional level every day. How much do we spend to extend an old person’s life for a few months? Every dime spent there is a dime that could be spent on someone whose death is not imminent. Even for those of us opposed to abortion, what kind of exceptions (if any) should be made with conditions either incompatible with life or, if not that, incompatible with what we would consider a worthwhile life? While the Fitzgeralds’ oldest daughter’s condition lead to an additional family member, most of the time it’s going to be the other way. A family bankrupted by the health complications of a first child can’t afford to have another (and even if they aren’t bankrupted, the time and devotion required alone could preclude it).

As someone of (relatively) sound mind and body, these remain easy thoughts for me to think. And on a personal level, this is particularly true since I owe my life to a miscarriage my mother had. Yet knowing my innate biases does not seem to prevent me from forming my beliefs based on them. It is enough, though, for me to see this as an immeasurably complicated issue. And one that, when some procedure can extend my life by a “mere” six months, is definitely subject to change.

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9 Responses to Quality of Life, Sanctity of Life

  1. Kevin says:

    Let me see if I understand this correctly. The parents deliberately conceived another child for the express purpose of harvesting her organs? As a father of three, I find that rather off-putting.

  2. trumwill says:

    I may not have been as clear on that point as I should have been. Initially, what they needed was going to be found in stem cells from the umbilical cord. The baby was never supposed to feel a thing or even really know it was happening. That worked initially, but then Kate needed blood. Then bone marrow. Then more blood. Then more bone marrow. Then, at the outset of the novel, a kidney. The parents were reacting to one disaster at a time. Not thinking through what all might be necessary.

    Until Anna’s lawyer really bought it to their attention, the parents seemed kind of oblivious to Anna’s accumulated sacrifice. When confronted with it, the father suddenly understood (though he was understandably torn), though the mother was really slow to recognize it (thinking “I would gladly donate any of these things if I could, but I can’t.”).

  3. Kevin says:

    I still find that rather alarming, deliberately conceiving a child for the purpose of harvesting its cells. Not saying I would never do it, but a zygote is a life in its own right and does not exist for the sole purpose of providing tissue for another.

  4. Mike Hunt says:

    Her parents, Brian and Sara, then had another daughter, Anna, by way of science so that they would have a donor to save Kate’s life.

    Are either Brian or Sara the biological parents of Anna, or did they use two donors as to not risk having another child with the same problems?

    This should really have nothing to do with anything, but since Anna is cuter than Kate, Anna should win out…

  5. trumwill says:

    Kevin, if we had the resources, if it would save the life of the first child, and if it would be a welcome addition to the family in its own right (ie we can manage X+1 number of children), I would probably be open to it.

    In the case of the Fitzgeralds, though, there were two problems. First, the cells harvested were not going to save Kate’s life, merely prolong it. It was, in a sense, delaying the inevitable. Kate went on to live another thirteen years or so, but that was not expected. And to the extent that was forseeable, that’s issue number two. They may have had the resources and werewithal to support three children in a vacuum, but when one of those children is constantly at death’s door, that severely limits your ability to take care of one other child, much less two.

    And then there was the problem of not thinking ahead. The fact that, once the initial donation was done, there would surely be more. This was not unforseeable. If the Fitzgerald’s themselves couldn’t see it, you would think that the doctors would have talked to them about this and that the Fitzgerald’s would have had a plan rather than sending Anna’s organs in for the rescue in perpetuity.

  6. trumwill says:

    Mike, it was their biological child. They ran the risk of another child with leukemia, though I think it’s it’s rare enough and the genetic basis of it is not strong enough for that to be as much a concern as with a lot of genetic disorders.

    By cuter, are you referring to the movie version? I haven’t seen it. Anna is described as singularly plain and awkward looking in the novel. However, Kate’s appearance is hindered by her illness.

  7. Mike Hunt says:

    So if Kate is Brian and Sara’s biological child, why did they need to artifically have her?

    By cuter, are you referring to the movie version?

    Yes, I am.

  8. trumwill says:

    They wanted to make sure that any child they had would be a compatible donor, unlike the brother who was not. So the scientists looked at all fertilized eggs or whatever and chose the one with the DNA most similar.

    Come to think of it, that is almost asking for another kid with leukemia, isn’t it?

  9. Kevin says:

    Sounds like a good book; I’ll keep my eyes open for it. I still have a hard time sympathizing with the parents’ decision to genetically engineer a child for the express purpose of harvesting her organs and tissue.

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