Ian Tuttle asks some very good ethical questions in the case of Charlie Gard, the British infant with a rare mitochondrial disease whose parents have been forbidden by the courts from taking their child to the U.S. for experimental treatment:
The question is what do we owe to people such as Charlie, who cannot speak for themselves? What duty of care do we owe them simply on account of their being human beings, who are by nature possessed of an inalienable dignity? What obligations do we have to those who suffer, and how should we understand their suffering? And, pertinent to this case, under what circumstances should the tightest bonds of affection — those between parent and child — be subordinated to the judgment of the state?
I will start with this: it is wrong that the state has chosen to overstep their authority by forbidding these parents from taking their child for experimental treatment elsewhere. Unless the court felt that more harm would be done to Charlie in this case (and I’ll get to that), they ought not interfere; I do not think that a judgment medical futility alone isn’t enough to stop the parents from doing what they want with money that they have rasied.
In the rush to condemn this injustice, though, we ought not miss several important points: what we owe to suffering, dying people is to refrain from torturing them with futile therapies. We ought to be incredibly careful about our willingness to “experiment” on a dying child. The medical customer is not always right, and it is important (as Alastair Roberts said earlier on Twitter) that doctors exercise “moral responsibility for the care they give and don’t merely see themselves as service providers”. Most importantly, allowing a dying person to die is not the same as killing them.
This final point is far more relevant to most people than any of the other ethical issues at hand in this particular case. Medical technology continues to give us incredible power to keep human beings alive and otherwise modify the human body, but it is always an open question whether these powers being used to this end honor our God-given dignity. (I talked about this a little recently in my review of Alien: Covenant.) When it comes to people who are dying, flogging their poor bodies in the ICU is not always fulfilling our obligation to the suffering.
I have found Gilbert Meilaender’s concept of terra animata and the trajectory of life incredibly helpful in this regard. Each person has a trajectory or arc of life with a beginning, middle, and end. For some people, this arc has a zenith in adulthood of relative autonomy and rational capacity (albeit with significant interdependence on others!), for others, it won’t. Honoring human dignity means allowing each person to follow their trajectory as closely as possible, using medical technology to keep people from falling off the arc prematurely.
As Alastair also observed, “Wherever we come down on the questions of medical ethics, we must weep with those weep.” I have never had to be the family member deciding when to withdraw care and allow someone to die, but as a clinician I have had to tell family members many times that their loved one is dying and that further medical treatment might keep someone alive a little longer but not in a way that would dignify or honor them. I do not know enough about the particulars of this case to offer a medical opinion, but the medical experts who have weighed in seem to think that Charlie Gard is dying. Although the state has overstepped its bounds here, we ought to be careful to recognize that there are more complex ethical issues here: honoring human dignity means helping someone along on the trajectory of their life, not trying to straighten it out for as long as we can.