Too Young to Want to Die?

Britain Debates a Child's Right to Choose Her Own Fate

By Kevin Sullivan

LONDON, Nov. 13 -- Hannah Jones needs a heart transplant. But after nine years of battling leukemia and heart disease, she has had enough of hospitals, operations, drugs and constant pain. So she has opted to skip the surgery and die at home in the company of her family.

When I first saw this story several days ago, my gut reaction was good for the powers that be in Britain for respecting this girl's wishes and bodily integrity. I can't possibly imagine what this young girl has gone through in her life. She has faced far more pain, suffering, illness, and uncertainty than I can appreciate. She has simply lived with a sense of her own mortality that no child should have and that few adults possess. I also know that even if she were to have the heart transplant, her prognosis still isn't great, with the likelihood of requiring a second transplant in 10 years. Given all of this, what right should any set of adults, no matter how well-intentioned, have to force such an intrusive procedure on her? I was glad that she was being allowed to make her own choice despite her age.

But then I wondered if that desire to have this 13 year-old be allowed to make her own choices, and have that choice be respected as we would respect the choice of any adult, was inconsistent with my views about trying teenagers, especially below 16, as adults. Where should we draw the line of when decisions made by teenagers should be respected as adult decisions and when we should treat their decisions as inherently suspect, without serious thought behind them? After all, part of the reasoning for treating juvenile defendants differently from adults is that teenagers do not have the decision-making capacity and impulse control that adults do. They generally don't have a fully-developed ability to think through long-term consequences. So when they make bad, even criminal, decisions as teenagers, we don't hold it against them the same way we do when adults make those bad decisions. So if we know that a 13 year-old hasn't developed the parts of the brain that govern decision-making, should we respect her decision on something as major as whether to turn down a life-saving procedure?

The ethical rules of my profession instruct us that whenever possible, we should treat juvenile clients with the same autonomy and respect we would adult clients. If I am appointed to represent a teenager, I should allow that teenager to make his or her own decision about what is in his or her best interest and zealously advocate for the outcome that kid desires. Guardians ad litem have more freedom to advocate against the stated wishes of a child, but that's not a role I'm well suited for. I'm a zealous advocate, not a guardian angel type. While I do try to help my clients think through their decisions with the best information I can give them, I've never been one to try to tell them what decision they should make because I can't possibly know what will be the decisions they can best live with. So in this sense, again I am inclined to let young Hannah make her own choice about what she can live with and what she can't take anymore of. If she feels she can't take any more hospitalization and drugs and pain, who am I to tell her otherwise.

But, like those juvenile defendants, she might not have the best decision-making skills. She might lack the ability to see the potential long-term benefits of going ahead with the transplant. Especially given her life-long medical struggles, maybe she can't envision the possibility of a relatively normal, even long-lasting, life that could follow a successful transplant. She hasn't lived through any of the medical advancements we adults have seen - the increasing life expectancy for cystic fibrosis patients, the vastly improved quality of life for those with Down Syndrome, and the radical shift from HIV being a death sentence to being a manageable condition with much greater odds of survival. As the adults with this broader perspective, would it be so wrong to overrule Hannah's decision and force her to accept the transplant? If we don't overrule her decision, she will die and will never be able to rethink her decision with the greater perspective that comes with adulthood.

In the end, I am sticking with my gut reaction that it would be wrong to force a heart transplant on an unwilling patient and that even a 13 year-old should be allowed some measure of dignity and respect for her bodily integrity. If she were younger, say 6, I would have no problem with disregarding her desire not to undergo a transplant. I'm not sure where I would draw that line. Perhaps there is no hard and fast bright line for me, but it would depend greatly on the maturity and poise of the individual child at issue. Therefore, I accept the decision of those adults who have met and talked with Hannah, trusting that they have discussed the possibilities with her and are satisfied with her thought process.

I think it is our job as adults (and yes, even though I'm a non-parent, I'm including myself here because, sorry Hillary haters, but it really does take a village) to help children learn to make their own decisions as they grow up. I have concluded that it is not inconsistent to allow children to make their own decisions in lots of areas and yet to shield them to some extent from the consequences of those decisions. I've often thought that the role of parents in the teenage years is to provide a relatively safe place for their kids to screw up. Like taking a live bomb out to the desert and letting it go off where it can't really do any damage. The difficulty in a case like Hannah's is that there is no way to shield her from the consequence of her decision. She won't get a second chance to change her mind years down the road. But if she feels she is ready to let go, I'm not sure it would do any good for adults to force her to hang on.

What say you, readers?