Heavy Reading

Most of you wouldn't know this, but I've got a Master's Degree in BioMedical Ethics. That's fancy words for "I give my damn opinion when it comes to shit you do to my or other's bodies." Anyway as part of that degree I had to write a thesis. The gist of my thesis was that teenagers (of sound mind), should basically have the last word when it comes to their medical treatment. In specific, teenagers with life-threatening diseases should be allowed to make choices about their treatment, even when the potential outcome is one the parents do not agree with. While of course one would hope that decisions were made with the support and advice of parents and others (doctors, religious leaders, your teddy, whatever), at the end of the day I believe that kids should have the final word. So if this means your cancer-ridden 15 year old decides NOT to seek further treatment, then you, as a parent, have a obligation to accept that choice - even if the cessation of treatment will mean your child might die shortly thereafter. Suffice it to say it is a standpoint most people don't agree with, and one which many thought I would alter once I had kids. Not so - I now have kids and I still agree with the above. The only thing that has changed is perhaps the importance on decisions like those being family made - that no child should have to make a choice like that without the emotional support it requires.


I picked up the above book in the Qantas lounge - "My Sister's Keeper" by Jodi Picoult. Now for reasons unbeknownst to me, at the moment I have an unhealthy obsession with childhood cancer. So I picked up this book, read the back, and thought it sounded interesting. Here is the synopsis:

"Anna is not sick, but she might as well be. By age thirteen, she has undergone countless surgeries, transfusions, and shots so that her older sister, Kate, can somehow fight the leukemia that has plagued her since childhood. The product of preimplantation genetic diagnosis, Anna was conceived as a bone marrow match for Kate - a life and a role that she has never questioned… until now. Like most teenagers, Anna is beginning to question who she truly is. But unlike most teenagers, she has always been defined in terms of her sister - and so Anna makes a decision that for most would be unthinkable… a decision that will tear her family apart and have perhaps fatal consequences for the sister she loves. My Sister's Keeper examines what it means to be a good parent, a good sister, a good person. Is it morally correct to do whatever it takes to save a child's life… even if that means infringing upon the rights of another? Is it worth trying to discover who you really are, if that quest makes you like yourself less?"

So I read this book with increasing fascination - because here, in fictional form, was the 'true life' story of my thesis. I won't give away the plot (because it is really very worth reading the book). It was almost - eerie - to read about something which previously I had only hypothesised about. After reading the book, my stance on this hasn't changed ... I still believe the rights of the child lie with THE CHILD, as long as that child is able to understand the consequences of that decision. A lot of this will, as in the case of the above novel, have to be done on a case-by-case basis, and will often depend on the history of the family, the illness itself, etc. At the end of the day, we allow children of this age group to drive,become parents, drink, choose to attend school (or not), and in many cases run entire households. Especially in the current world, these young adults have responsibility over so many things, including other people. Why should we remove from them their rights and responsibilites to themselves? It is (to me) a fascinating idea to think about, and a real joy to read about (even in fictionalised account.) Please go and read it. You'll be glad you did...and maybe you'll agree with me (if you don't already.)