Earlier this week fourteen-year old Hannah Jones received a heart transplant. This is eight months after Hannah hit the news for her refusal to have the surgery. There was much debate in the media (including this blog) at the time about whether or not teenagers should be allowed to refuse life-saving treatment, though overall there was a lot of support for Hannah’s decision.
But in the last week Hannah has apparently changed her mind, and elected to have the surgical procedure. What is the significance of this for the decision to go along with her earlier choice? Hannah might well have died in the last 8 months, in which case she would never have had a chance to rethink her position on transplants. Does the fact that she has now changed her mind give us more reason, in future, to overrule similar patients who are declining live-saving treatment?
This question has similarities with other end-of-life choices. It is sometimes claimed, for example, that many patients who request euthanasia (but who are not able to access it) subsequently change their mind. Similarly, one criticism of advance directives that specify no life-prolonging treatment in the event of significant disability, is that patients who develop disabilities often revise their earlier views and request their lives be supported. One characteristic feature of end-of-life decisions is that they may foreclose further choices. How much weight should we (as individuals making such decisions, or as society contemplating respecting or rejecting them), give to the possibility that the patient will change their mind?
Empirical evidence may be relevant to the person making an end-of-life choice. It may be helpful to know that a significant proportion of patients who feel similar to the way that they presently do, subsequently have a much more positive outlook, or no longer wish to die. “I know that you don’t want it now, but most patients (many patients) change their mind once they have had the treatment, and are glad that they received it”. So we should give this evidence to patients like Hannah who do not want further treatment. But often, good empirical evidence of this nature is lacking. And the evidence that is present may be biased (for example, since only those who survive get to change their mind, and this group of patients may be different from those who have died).
However, if patients are presented with this evidence, and still want to decline treatment, the choice is relatively simple. Respecting the autonomy of the patient necessarily means allowing them to make a potentially wrong decision. If we only go along with patient requests when we (the doctor, or society) think they are making the right choice, then in fact we are not respecting their choice at all. At least for competent adults, we should allow their decision even if we are sure that they will, or would subsequently change their mind. However, for older children and adolescents the question is much less clear, and there is no easy solution when what the patient wants, and what is best for them come into such stark conflict.
In Hannah’s case, she was fortunate enough to be able to have a change of heart, and there was no need to force her to receive treatment that she did not want. Her condition had also changed, and apparently her chances of successful transplantation had improved. But nagging questions are likely to remain in the minds of her doctors. Things might have turned out much worse. Would it have been wrong to have forced her to have surgery?
Teenagers and the right to be wrong 14/11/08 Practicalethicsnews
Transplant for heart refusal girl BBC 29/7/9
Hannah, the girl who chose to die, receives her heart transplant Daily Mail 28/7/9
The real nagging question is this: What is the public interest in preventing people from making the “wrong” decisions? I think that when it comes to children and mental incompetents, the public interest may be substantial. But ideology comes in to play, the physician’s ideology that favors wellness over lingering disease and life over death. And, what do you do with a seemingly sensible teenager who decides she wants to chuck it? I suppose you talk to her (as you would always talk to an adult) about the alternatives and the possibility that she needs a longer time to think of something as serious as death. But how much time is enough to allay the “nagging questions”, and whose business are such questions, anyway?
“Nagging questions” about alternatives lost are always there, whenever serious choices must be made. Giving up body parts to another to save the other’s life, involves such nagging questions. What if the donee will die shortly after the transfer, or what if the donee will do something terrible with the advantage given because of the gift? What if I’ll miss my body part more than I will be pleased with having helped another? What if I’ll really need that body part to live (kidneys, for example, or part of a liver). Honoring such nagging questions always delays and therefore negates the decision to give. Of course, we all want to encourage donations, so the “nagging questions” are treated as bothersome matters that should be squelched.
Why forego life-saving or life-maintaining treatment, when that treatment will buy time to determine whether or not one should forego life-saving or life-maintaining treatment when … I think honoring such nagging doubts will always favor continuing life-saving or life-maintaining treatment, unless that treatment is extremely painful and the result of survival would be quite unpleasant. Of course, as one nears death, maybe the alternative looks better, but by that time, it is too late, and so forth. Our ideology, from our Abrahamic religious traditions favors life over death and the physician’s ideology sees death as the enemy, to be defeated. A patient’s death is a personal loss! So, the “nagging question” is treated as a serious matter, one that should be seriously considered for a very long time.
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