The case of Charlie Gard in the UK has caused quite the stir (http://www.cnn.com/2017/06/27/health/charlie-gard-european-court-ruling-bn/index.html), and showcases the threat that occurs when public officials are increasingly tasked with holding ownership of health care decisions.

Some have tried to use Charlie Gard’s unfortunate outcome as an indictment against those supportive of euthanasia, but that misses the point of what is at issue here. Indeed people should be allowed to decide if they are not to be kept alive indefinitely, but only if it can be proven that such a decision is made in a sound mental state by the patient…and if a doctor is actually consenting to performing such a task. This case, however, presents different circumstances. Charlie is a baby, and therefore is incapable of giving discernible consent to such a question. Therefore, that decision falls on Charlie’s parents, his legal guardians under law. It might have been a tall order for a court to make a decision between the doctors and the parents if they were at odds of use of their facilities, but that was not the case at all. The parents of Charlie Gard had wanted to take their child to the United States to undergo an experimental procedure in the hope that it might reverse his condition. Indeed it was a long shot of success (no one in Charlie’s state has ever undergone it, though others with Charlie’s illness have shown positive results), but it was a chance nonetheless. Thanks to crowdfunding, the parents had the monetary means of doing the transport to the U.S. However, the state ultimately made itself the owner of that decision, concluding that such a procedure would not work, and that Charlie should “die with dignity”. Such a decision is a violation of the parents’ autonomy, as well as by extension Charlie himself.

Unless there is outright disagreement between doctors and patients (or their guardians/next of kin) in the use of the doctors’ facilities, there is no reason why such a miscarriage of justice like this should occur. As mentioned before, Charlie’s parents were going to go elsewhere to provide care for their child…or at the least allow him to die alongside them at home. Was it a risk? Of course it was, but when involved in the care of your family, such risk usually comes about. That comes from being so bonded to them that you are willing to move the heavens for their care…especially when they are incapable of voicing their wishes or wants as Charlie is. Indeed a decision like such is probably reckless, but that is theirs to make…not far-off bureaucrats who have no real attachment to the case other than politics. Just as I was upset when former Florida Governor Jeb Bush interjected himself into the health care decisions of the Terry Schiavo case despite the families’ wishes, I am with this. My thoughts are with the family in this difficult time. It did not, and should not, have ended like this.

Update:

Well this isn’t fully giving the parents autonomy in making the choice as they would wish, but looks like the judge and the NHS/hospital are finally acquiescing to a doctor from the U.S. coming to see Charlie’s condition…admitting that they don’t have all the answers (no doubt as a result of the international and political backlash that has resulted from their previous behavior…let that be a reminder of what truly concerns public officials and bureaucrats…it isn’t patients). They should have figured that out sooner – http://abcnews.go.com/Health/wireStory/american-doctor-travel-uk-charlie-gard-case-48636868

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