Readers may remember the Charlie Gard gross injustice, in which U.K. courts both ordered a terminally ill baby’s life support discontinued and refused to allow his parents to take the baby to a U.S. doctor who hoped he might be able to extend the boy’s life. Eventually, the U.S. doctor said it was too late, and the parents permitted the life support to be withdrawn.
Now, in the Baby Alfie case — about which I have written here before — the same travesty is unfolding: Only this time, the hospital demands the baby’s death despite there being no diagnosis as to the cause of his neurological malady. From the BBC story:
A hospital trust prevented a 19-month-old with a mystery illness being transferred to Italy in a row over life-support treatment, a court heard.
Doctors at Liverpool’s Alder Hey Children’s Hospital believe it is in Alfie Evans’ best interests to stop “mechanical ventilation”.
His parents, Tom Evans and Kate James, disagree and want him to be moved to a hospital in Rome.
Mr Justice Hayden said no decisions would be made until the New Year.
The hospital described Alfie as being in a “semi-vegetative state”.
I guess that means minimally conscious. But whether conscious or unconscious, it is unconscionable that a hospital would both want to terminate efficacious-life extending treatment and prevent the parents from transferring the baby to a hospital willing to continue care.
Realize, the hospital wants the treatment terminated, including tube-supplied food and water, because it works, — e.g., it is keeping the baby alive — rather than because it is ineffective.
This is an example of a bioethics meme called “futile care,” in which doctors are allowed to refuse wanted treatment if they believe the quality of the patient’s life isn’t worth living.
Such coercion happens in the U.S. too. But I know of no cases here in which a family is both banned from requiring care to continue and from transferring their loved one to a different facility willing to provide continued care.
Let us hope the court in Alfie’s case both requires life-support to continue and/or allows the transfer. Forcing this baby to die when there is no diagnosis would be an act of naked medical authoritarianism.