ANA Book Club?

[Raydean]

As an adult there isn't anything I wouldn't do for my children, or grandson.  Being an adult (as least most of the time <g>) I am able to make an informed decision, understand the pro and cons of the procedure.  From the time of Chet's first surgery I held Durable Power of Attorney.  I know how hard it is to make medical decisions for someone else.  You are always aware that the choices you make directly affect someone you love.  Those of you that know me well, know that for myself I'll take risks, but for Chet, I'd go the extra mile and researched everything, there was no way that I would let him down. I took more care with him, then i did for myself. It would be so much more difficult to be making these choices for a child.

A child as young as Anna would not be able to fully understand the depth of the procedures in order to give informed consent. A parent may not be able to separate her/himself emotionally and may not  be in the best position to give consent.    My questions to all is, at what point was medical lines crossed and who was looking out for Anna. 

I've appreciated all of the replies to this thread.  It has given me  a different viewpoints, raised questions.  I guess for personal reasons i identify with Anna the most, both of us in different ways were invisible children.

Hugs and Love
Raydean

[OMG16]

I think medical lines were crossed when the first discussion about a designer baby took place and it just continued until her death.  Anna felt she was just spare parts for Kate and had no true value other than that as far as her Mother was concerned anyways.  I do not believe anyone was looking out for Anna not even Brian as he did not say much when they crossed yet another line.  I have a problem with this morally as I see it as wrong.  With that being said I am not sure I wouldn't have done the same thing in that situation.  That is why it is so important to have a board at the hospital who is not emotionally attached to either patient to help determine what the right thing to do is.

Raydean if you do not mind me asking you, who is Chet?  I am just getting to know everyone and have not heard your story yet.  If you are willing I would love to understand what you have been through.  You can PM me and if I do not return your PM right away it is because the Drs have decided to put me in the hospital which I am fighting tooth and nail.  I can do IV antibiotics from home and they can send a traveling nurse to draw my blood if need be.  I just really need to be home for my son.  I also noticed on your other posts you are from Washington to.  Do you live in Alma?  I read you were about 12 or so miles from West Olympia so I am just guessing.  I hope I will get to talk to you soon.  16

[leapyrtwins]

Some very good points here.  Lots of things I haven't thought about up til now.

While I don't think that Anna was old enough to decide entirely if she would be a donor for Kate, I do think that she should have had some input, at least on some level.  As OMG said, she felt like she was just spare parts for Kate and I think a lot of this was her parents' fault.  She wasn't really valued and it seemed like her needs or her feelings never came before Kate's; a good example was when she couldn't go to summer camp to train with the hockey pro.

I'm not sure when medical lines were crossed, but I do feel that no one was looking out for Anna's best interests.  Not Dr. Chance, not Brian, and certainly not Sara.  The hospital failed her too.  I thought it was very interesting that the ethics committee had never stepped in on Anna's behalf.  Just because she was a donor sibling, shouldn't have excluded her from this process.  In anything, it probably should have made them examine the situation more closely.

Like Kate, I don't believe that Sara was sinister, but I didn't get the idea that Sara saw the birth of Anna as a double blessing - another child and a donor for Kate.  I got the impression that if Kate didn't need a donor, Sara and Brian would have had no more children; that prior to Kate's illness, Sara felt she had the perfect family.  She spent a lot of time reminiscing (sp?) about Kate's childhood and sometimes included Jesse in her thoughts, but didn't really mention Anna and what kind of child she was.  It may have just been the way the book was written, but IMO Anna was strictly an afterthought and unfortunately, Jesse also became one.

[sgerrard]

Sara and her family got it together pretty well after the loss of Anna, which shows that they were capable of being good parents, and have a mentally healthy family. If they could have been that kind of family from the beginning, things would have gone much better for all.

Hindsight is 20/20, so it easy to say afterwards, but I think the scene of the bone marrow transplant could have been handled much better. Did anyone tell Anna that it was going to hurt? She didn't need to understand the full medical details, but she was old enough to be informed about what it was going to be like for her. It may have taken a few more days, but I think her love for her sister would have brought her around in the end - voluntarily, which would have made a huge difference. And it would not have hurt any to treat Anna, Kate, and Jesse to a trip to Disneyland afterwards, to celebrate as a family. That's what Mastercard is for.

The sense of doing things together is what seems to have gotten lost in this family, and it took the death of Anna to snap them out of it. Being determined to save Kate is well and good, as long as it does not lead you down the path of ends justifying means. You still have to do things the right way, while having the determination to stick with it until you get what you need. I think if Sara had shown more respect and love to Anna, Anna would have been looking for more ways to help out, not trying get out of it.

Steve

[Kate B]

I think medical lines were crossed when the first discussion about a designer baby took place and it just continued until her death.  \

That is the moral dilemma in this book. 

What about the justice system?  Most people are feeling the parents and the medical system failed Anna on some level.  Do you feel that failed Anna too?

[Kate B]

.I think if Sara had shown more respect and love to Anna, Anna would have been looking for more ways to help out, not trying get out of it.

You still have to do things the right way, while having the determination to stick with it until you get what you need.

Hindsight is 20/20, so it easy to say afterwards

I am not so sure Anna was really trying to get out of it.   It seemed to be her sister's urging that caused her to come up with a solution that "stopped" the medical madness, but we as readers didn't get to know that part until the end.That was the twist in the story that surprised me when she announced it in court.  All along I had been reading it from the vantage point and stance Anna had in the beginning of the book: the voice that said she was tired of it.  On my second read of the book, knowing what I knew relative to Kate's request, I read things a bit differently. It is kind of like watching the movie, The Sixth Sense the second time.  Things jump out at you. For example, reread the conversation between Anna and Kate toward the beginning after the papers are served knowing Kate initiated the request.

I guess that I am not so certain she was trying to get out of it..I think Anna in her 13 year old way thought she was helping out Kate based on her request.

I couldn't agree more Steve...a person still has to do things the right way, while having the determination to stick with it until it concludes. You summed it up nicely:  Hindsight is 20/20.

Kate
 

[leapyrtwins]

I don't feel that the judicial system failed Anna, but maybe I'm overlooking something 

Jan

[ppearl214]

(possible suggestion for another group read:  "Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)" by Stacy Taylor (Author), Robert Epstein (Author) on Amazon.com http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322/ref=sr_1_1?ie=UTF8&s=books&qid=1207230942&sr=8-1.  Noted in another thread and after I thought more about it.... may be a good read for you all and definately worth discussing, IMO.... happy reading all! Phyl)

[leapyrtwins]

Great suggestion, Phyl.

[Kaybo]

I don't know, phyl, do I hear non-fiction??
k

[sgerrard]

I don't know, phyl, do I hear non-fiction??

It has a colon in the title: what more do you need to know? 

Steve

[leapyrtwins]

So, back to one of Kate's questions.

Does anyone think that the judicial system failed Anna 

[Kate B]

The use of experts drove me crazy in the book during court.

The ultimate result which put Anna semi-in charge through her "medical guardian" was a good decision by the judge. But even that decision was made after Anna blurted out that she was influenced by Kate.

Other thoughts?  Other questions of interest for the group?

[sgerrard]

I guess I didn't see the judicial system falling down; it seems right to me that it rightly comes into play late, stepping in when it has to, but not before. The use of experts is bound to happen: it has to be a presentation of the best case from each side, with a wise judge in the middle to rule.

I agree that Anna's motivation for getting out of the kidney donation was Kate; in fact, that illustrates how deep her attachment to Kate really was. I think both girls would have had a different attitude to the situation, if their parents had been more open and communicated better. Brian basically dropped the ball and hid at the fire station, and Sara developed tunnel vision, with only one goal in sight, and no awareness of what else was happening.

There is still a good question left about the whole designer baby issue, and whether it was morally right for Brian and Sara to pick their next child based on genetic suitability as a donor for Kate. That isn't about parenting skills; it is a more fundamental question about how to react to the development of the technology. Is it okay to do that?

Steve

[leapyrtwins]

I'm open to discussing the designer baby issue, if others are; but there are definitely a lot of moral and ethical issues attached to that discussion.  I actually have two children that I wouldn't have had without the miracles of medical technology - although they aren't "designer babies" - so I may have a different attitude on that topic than others.

I'd also be interested in knowing:

a) if anyone suspected, before the author revealed it, that it was Kate who put Anna up to filing for medical emancipation.  I was shocked when I found out   I never saw it coming.

b) what others thought about the ending.  Were you surprised? disappointed? did you have any idea that Anna would be the one to die, not Kate?  When I read the book the first time I was very disappointed by the ending.

c) any thoughts on Campbell  we haven't discussed his character at all.