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That British Girl's Brave Heart

"I try not to think about death, but I do know my time is limited. I live each day as it comes. I enjoy life. It's hard not to feel that life's unfair, but I am determined to make the best of it."

That's Hannah Jones, as quoted in Friday's Washington Post article about this British 13-year-old who has recently declined a potentially life-extending heart transplant. Jones, diagnosed with leukemia at age 4 and with a faulty heart (resulting from her cancer treatment) at age 12, maintains that she's spent too much of her life already in hospitals undergoing painful treatments. She wants to spend whatever remains of her life at home with her family. Her parents -- her mother is an intensive care nurse -- support her decision.

Hannah's story has apparently roiled Great Britain. Is a 13-year-old capable of making such an enormous decision? Where does a physician's responsibility to do everything possible to help a patient end? And how does one weigh an extension on life bought through painful means in a hospital against the loss of precious days at home surrounded by loved ones?

Cindy Speas, director of community affairs at the Washington Regional Transplant Community in Annandale, says she knows of little precedent for such a case involving so young a person in the U.S. "I'm not a legal expert," she says, "but she wouldn't have the legal standing in this country to make such a decision."

There is no national standard for handling situations such as Jones's, Speas says. Instead, they're handled here on a case-by-case, state-by-state, or transplant-center-by-transplant-center basis, with decisions generally made by parents together with the transplant team and other physicians.

Hannah Jones sounds wise, even wiser than most 13-year-olds (who, in my experience, can be very wise indeed). And from what I've read, it seems she has considered her options carefully and understands the stakes. But it's hard to gauge whether a person her age has sufficient perspective to fully grasp the finality of death.

What do you think? Should Hannah Jones's wish to live her life out at home be honored, even if that means her life is shortened? How much say should a 13-year-old have in such matters?

By Jennifer LaRue Huget  |  November 17, 2008; 7:00 AM ET
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I totally agree with Hannah's decision. I received a double lung transplant in 2005, and, at times, the decision to go forth with it was a grueling thought. I had also spent much of my life in a hospital.
A big part of transplant eval (at least in the US) is making sure that the person *wants* the transplant and can handle all the physical and psychological things that come with it. Hannah sounds like she is very aware of what she is doing--it's not a rash decision. I think that, in cases like this, children and parents should be allowed to make the decision that is best for them. I certainly wouldn't want a doctor telling me that I *had* to have a massive surgery.

Posted by: choirgirl04 | November 17, 2008 9:44 AM | Report abuse

I absolutely do think that children past a certain maturity level should have the right to refuse massive surgery/extremely invasive medical interventions, if they believe that it will reduce their quality of life.

Obviously, this needs to be done in conjunction with their parents, and they need to be evaluated by a psychiatric professional to make sure that they understand the implications of their decision, but I don't think that transplants should be forced on anyone, especially given the worldwide organ shortage.

The transplant would not guarantee Hannah a longer or more pain-free life, and it carries major risks (of death on the table, of death from rejection, of bringing her leukemia out of remission.) She and her parents have made a decision, and I think that it's the doctors' responsibility to reject that.

FWIW, I have a teenaged daughter and, while I hate the thought of ever being in the position of having to make such a decision, I would support her choice if I believed that she had a full grasp of the issues involved, despite the difficulty of turning down potentially life-prolonging care.

My father died a long, undignified, prolonged and horrible death. He was fully conscious but unable to communicate other than through gestures. He, and I, would have absolutely made the choice to give him a shorter, but more able, pain-free, and dignified life (a month of full mobility and communication, vs. six months of slow deterioration), if the choice had been offered to us.

Posted by: seven_jaguar | November 17, 2008 11:00 AM | Report abuse

er, the doctors' responsibility to RESPECT that -- sorry, was still thinking of organ rejection.

Posted by: seven_jaguar | November 17, 2008 11:01 AM | Report abuse

Legally, the child only expressed her desire; her mother made the decision to do what her daughter desired. It's too bad the mother didn't have more personal courage to help her daughter overcome the "heart" barrier to a more normal life. Maybe the mother's surrounding secular culture of "Whatever" saturated her with enought ennui to lose the enthusiasm for life necessary in helping to support another in such a vital struggle.

Posted by: DoTheRightThing | November 17, 2008 11:11 AM | Report abuse

Re: Do The Right Thing.
For some people, not taking an organ transplant IS the right thing. I know many people who simply don't want to have to go through the process. I can understand this, having been though that phase myself.
There comes a point when a lot of people just want to stop fighting. Even with transplants, as a poster above said, there is still the chance of rejection, and then re-transplantation. Would I want to go through the whole transplantation process again? I don't know. But I do know that when (if) I have to make that decision, I want my doctors to respect it. I have no doubt my parents would.

Posted by: choirgirl04 | November 17, 2008 12:09 PM | Report abuse

Not only should her doctors respect her decision, but media organizations should also respect her decision and her wish to die in peace with her family and friends.

I would hate to see religious groups or other interest groups decide to start an invasive letter campaign or lawsuits "on her behalf" that interrupt her last months as a result of this publicity.

Posted by: muddiboots | November 17, 2008 2:30 PM | Report abuse

It is stunning to me that the parents agreed with her decision. She must have been through a terrible ordeal at this point for them to agree to abandon hope. However, with her parent's consent, as mystifying as it is, the decision has been made and should not be set aside by the state or any other entity. Hopefully Hannah's parents can be pursuaded to change their minds. If they do, their wishes ought to trump those of their minor child. I hope Hannah has a long, healthy life ahead of her.

Posted by: PlayByTheRules | November 17, 2008 5:22 PM | Report abuse

The first reaction I had to this story was to wonder if the girl is clinically depressed, which led to her decision to decline life-extending treatment. I hope her parents and doctors considered that possibility. At 13, even living another six years would extend her life by almost half, and personally, I think that's worth fighting for.

Posted by: WashingtonDame | November 17, 2008 6:02 PM | Report abuse

"But it's hard to gauge whether a person her age has sufficient perspective to fully grasp the finality of death."
Statements like this bother me. I'm certain someone who has spent her whole life in and out of the hospital with the specter of death hanging over her thoroughly understands the finality of death. I didn't spend my life in and out of the hospital, but I still had an understanding of the finality of death, having lost all four of my grandparents before I turned 12.

If she was a healthy 13 year old who suddenly developed a hole in her heart, and a successful heart transplant would guarantee a long, healthy life, I would be very concerned about her and her parents' decision to forgo the transplant. But she's not healthy. Beyond the standard dangers of death on the table and organ rejection, she has the unique problem posed by her bout with leukemia. From the full article:
"She was fitted with a pacemaker, and doctors showed her films of a transplant operation. They told her that... her weakened immune system would make her susceptible to a recurrence of leukemia. They told her she would need a constant regimen of drugs and that she would probably need a second transplant in about 10 years."

In her situation, I should hope I would be altruistic enough to say "save the heart for someone who will have a longer, healthier life than me."

Posted by: theGelf | November 17, 2008 7:05 PM | Report abuse

I am not suprised by the commentary here.

One commentator suggests that because the English girl did not make the same choice which the commentator imagines he or she would have made under similar circumstances, the English girl must be mentally ill (depressed) and in need of brain-altering medication, which, presumably, would be said to have "worked" once the girl changed her mind and made the decision he or she "should" have made, namely the same decision the commentator Imagines he or she might make for him or herself.

Another commentator suggests that because the girl and her family did not make the decision he imagines he would make under similar circumstances, she and her family are "morally wrong". He hopes they will be "persuaded" [i.e., forced somehow] to make a choice he agrees with.

Yet another says that because the family has made a choice that is not what he, himself, imagines he would make under similar circumstances, the family must therefore be suffering from "secularism", or "ennui", and thus must be spiritual nogoodnicks of some kind because their choice disagrees with his imagined choice.

But, you know, it is not about what you or I or some other commentator might choose (or imagine we might choose) under those circumstances. It is not even about what some different 13 year old with exactly the same medical history might choose. It is about this particular person and her family having the right to make THEIR choice, and right to have it respected, even if you or I might choose differently.

This child's choice is clear: for her, the surgery is such a loathesome prospect that, though she enjoys life, she would RATHER knowingly DIE than be violated in such a way.

What kind of a society would it be if there were some powerful group, (e.g., physicians, Communist Party Team Leaders, Nazi Youth Group Leaders, local elites calling themselves by some other name, Inquisitors, or Big Brother's Minions of any kind) that could force unwanted, deeply loathesome, medical treatments on a child or on an adult "for your own good", against the child or adult's will?

When that comes to pass in our society, it will be time for all decent people of good will to "walk away from Omelas".

Posted by: TQWoods | November 17, 2008 9:15 PM | Report abuse

Sometimes medicine can go "too far" ... at the end of the day, the decision to accept/reject a given treatment is a *personal* decision.

Leave the poor girl alone.

Posted by: martypjohnson | November 17, 2008 9:25 PM | Report abuse

My first wife was on dialysis for about five years. She rejected the idea of a transplant while she was still fairly healthy. I had to respect her wishes that she did not want to endure more medical procedures and the uncertainty that a transplant would work. I believe firmly that in the final analysis that everyone has the right to make a decision that best represents their sense of the kind of life that remains to them if the do not take the option of a transplant. My wife did not like the prospect of always having to take multiple drugs with no certainty that the procedure would give her any benefit. A decision regarding a child is always complex. This is a heart rending decision and it is not automatic that going forward with a transplant is the best option in all cases.

Posted by: dave1011 | November 17, 2008 9:40 PM | Report abuse

If you read the articles in the British press you will find that the probability of a successful transplant for her is very slim. So she, in conjunction with her parents, has made the decision that a very painful procedure that will almost certainly not prolong her life is not worthwhile. Seems logical to me.

Posted by: iansmccarthy | November 18, 2008 10:04 AM | Report abuse

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