Well, this is rich. Udo Schuklenk, the co-editor-in-chief of the journal Bioethics, insists that people obey bioethicists and doctors when it comes to decisions about ending life-sustaining treatment even when the patient or family wants to fight on — an authoritarian bioethics meme known as “futile care.”
Schuklenk is furious at the public backlash against the forced removal of life support from Alfie Evans in the U.K. — who had an undiagnosed degenerating brain condition — and the hospital and court’s barring his parents from taking Alfie to an Italian hospital willing to continue treatment. From, “Bioethics Culture Wars — 2018 Edition: Alfie Evans”:
There is invariably much talk about disrespect of the disabled, as if there is no difference between a disabled child living a life worth living and a child whose brain has been irreversibly catastrophically damaged. Add to that a liberal amount of second guessing and questioning of the clinical judgement made by clinicians involved first-hand in the care of the toddler by academics, activists and religious lobbyists with no clinical qualifications and no first-hand knowledge of the facts of the matter…
A predictable consequence of the flurry of activism across the globe was that a sufficiently large number of activists was motivated to try to storm the hospital where the boy was cared for. Yes, they tried to storm the hospital! They even, for a brief period, managed to block an ambulance from entering the hospital. Without any sense of proportion, they call(ed) themselves Alfie’s Army. No, I ’m not kidding, army!
Not terribly surprising: if you genuinely think that you are fighting a crime akin to the holocaust you will think about it in fairly militant terms. Agitation and propaganda have consequences.
So does presuming the right and power to impose your value judgments upon patients by forcing them off wanted life support, particularly since the reason for pulling the plug is that the care is succeeding in keeping the patient alive. In other words, futile-care impositions actually declare the patient to be “futile,” not the treatment.
A few emotional commentators in the Alfie Evans case made unfortunate comparisons to Nazism — never a good idea — and some protesters engaged in objectionable pushy tactics.
But make no mistake: The actual aggressors in this “culture war” are Schuklenk and other bioethicists of his ilk when they arrogantly grant to themselves the final say about when a life is worth living and maintaining — and then insist that all bow and acquiesce. No!
Now, let’s add in Schuklenk’s blatant hypocrisy to the mix. On several occasions he has written that doctors should be forced to take human life in abortion, lethal-injection euthanasia, and assisted suicide if the patient demands it — and that their conscience or religious objections to killing are irrelevant. Either do these immoral deeds (from the doctors’ perspective), Schuklenk believes, procure a doctor who will, or get out of medicine!
How do we square these two conflicting positions? Utilitarian bioethics increasingly isn’t about autonomy — once the movement’s most prominent advocacy thrust — but in justifying why certain patients should become dead.
If “choice” achieves that outcome, great. Such decisions are sacrosanct. But if patients make the “wrong” decision from bioethics’ utilitarian perspectives and choose to fight on, well, autonomy has its limits.
No one died and made bioethicists kings and queens. Their value judgments are not inherently superior to those of families and patients because bioethicists have a Ph.D. in philosophy. It is not our duty to meekly obey.
That so many people fought to save a little profoundly disabled and sick boy named Alfie Evans — and Charlie Gard before him — is to be celebrated, not decried.
Presumptuous bioethicists such as Udo Schuklenk corrode the people’s trust in the medical system, but ultimately, they will only have power if we cede it to them. Just say no to the technocracy.