I firmly believe that the death penalty should be abolished. Certainly, there are some criminals where death would undoubtedly be considered morally just (Dylann Roof immediately comes to mind). However, what most gives me pause is the idea of the State being the main arbiter in which cases merit death and which do not. Given the finality of such decisions when they are made and enforced (you can release the wrongly imprisoned, but the wrongly executed cannot be brought back to life), I am not comfortable granting the government such power. Moreover, political pressure to reach a certain decision, particularly on the highly publicized cases, can be impossible to ignore. And the track record of our government in ensuring that these determinations are just is … not very good.
Granting the state the power to decide life and death isn’t something to take lightly.
This wariness of government power has some parallels to me in the case of Charlie Gard, a British infant who is currently on life support, suffering from a rare genetic condition that has left him with severe brain damage and unable to perform any vital bodily motor functions shortly after birth. The doctors at Great Ormond Street Hospital have deemed that they can do no more for the child and want to remove him from life support. Charlie’s parents disagreed, wanting to try an experimental treatment in the US, raising an impressive amount of money for this effort. The conflict wound up in both UK and EU court systems, with both courts ultimately siding with the doctors. Charlie Gard was scheduled to be put off life support on June 30 2017, denying a request by the parents to allow for more time to spend with Charlie or to allow him to die at his home. The hospital eventually relented (possibly due to public pressure as the interest in this case has escalated worldwide), postponing the cutoff from life support for now.
What’s striking to me about this case is that the conflict does not stem from any potential strain on state resources. It’s one thing if Charlie’s parents were asking the hospital, and by extension the UK government, to keep funding Charlie’s care indefinitely. But they seem to be more than willing to use or raise money on their own to continue his treatment. That doctors are given the authority to overrule the parents decision on the care is something that troubles me greatly. Critics of the US health care system certainly bring up repeatedly the adverse interference that insurance companies cause on patient care decisions. It doesn’t appear that single-payer systems like the National Health Service are immune from this problem either.
I just don’t believe that it should be in the doctors’ hands to make such a decision.
That’s not to say I think the doctors at Great Ormond Street Hospital are some mean or heartless government thugs. They are acting in accordance to what they think is best for the child, just as Charlie’s parents are. I just don’t believe that it should be in the doctors’ hands to make such a decision, either morally or as a matter of policy, even if they may be ultimately right. It’s true that there are risks in the parents’ desires in both attempting to transport him to the US and in the treatment itself (it has never been attempted on humans). But if we would allow a conscious individual of his or her own free will to pursue such a course and accept such risks, then Charlie’s parents should be allowed to pursue their preferred choice of care for their child as well.
And while it’s true that, more than likely, the experimental treatment will do nothing for Charlie, it doesn’t mean that nothing of value can be gained from it. There’s potential knowledge to be gained from the treatment itself, even if it’s not successful1. It probably won’t help Charlie, but it could help someone else down the road. That potential shouldn’t be summarily dismissed.
Doctors can and should do everything they can to provide patients with the information they need, and to have those candid conversations when conditions reach the point where there is no hope for further treatment. But they shouldn’t be the final decision makers except in cases of emergencies. Just as with the death penalty, granting the state the power to decide life and death isn’t something to take lightly and should be scrutinized thoroughly. Certainly far more scrutiny than the UK and EU courts have given. Hopefully enough public critique has provided the momentum to perhaps reverse this court precedent at some later point.