He was not a celebrity or social media influencer, but millions of people the world over remember the name Alfie Evans because of what his short, precious life represented — and because of what his manner of death foretells about a healthcare system in which the state has the authority to determine whose life is worth living and whose is not.
Alfie was born in England in May 2016, and later that year admitted to Alder Hey Children’s Hospital in Liverpool, where he was diagnosed with a degenerative neurological condition. After spending a year in a semi-vegetative state, Alfie’s parents sought treatment options elsewhere, but were prohibited from transferring their son to another facility when the hospital sought a declaration from England’s High Court that “continued ventilator support is not in Alfie’s best interests and in the circumstances it is not lawful that such treatment continue.”
Despite his parents’ heroic attempts to prolong Alfie’s life and identify care that might improve his condition, including securing world-class care at an Italian hospital free of charge, the British High Court’s ruling stood; Alfie’s ventilator was removed and he passed away shortly thereafter.
In the wake of the legal battle over Alfie’s care, many observers lamented that this kind of state intervention into life-extending medical decisions was inevitable in the U.S., especially as we move closer to a system of socialized medicine and rationed care and drift further from the wholly American philosophy that the state is meant to protect its most vulnerable citizens.
Had Alfie been a U.S. citizen, his fate may have been quite different. No U.S. court that I’m aware of could make a legal argument that a parent’s desire for life-prolonging treatment was unlawful — at least not yet.
But there are laws in the U.S. that restrict and even sever patient and family rights in making life-and-death decisions, including right here in Texas.
Currently in the Lone Star State, a doctor who disagrees with the patient’s decision to maintain life — and the patient or family wishes to continue life-extending treatment — can appeal to a hospital bioethics committee for a hearing. If the committee agrees with the physician’s assessment, the patient or family has 10 days to find and arrange alternative care, after which time life-extending treatment can be terminated. The ruling is binding and there is no appeals process.
Wesley Smith, an attorney and expert on end-of-life issues, calls the law arbitrary and inherently unfair. Consider, he argues, “what families … face when striving to save their loved one’s life in front of the committee … Adding the additional and onerous burden upon people who are in such demanding circumstances — to, in essence, require them to fight for their loved one’s life against their own doctor — is simply beyond the pale.”
He’s correct that 10 days provides a shockingly brief period for a family in crisis to secure care for a loved one. Finding new treatment options takes time, resources and mental clarity not possessed by many families facing this type of dilemma. (Alfie Evans’ father had to fly to Rome and seek an audience with the Pope to arrange, albeit unsuccessfully, for his son’s transfer to the Vatican’s Bambino Gesù children’s hospital.)
A more reasonable solution would be one where families and healthcare providers work together to reach a compromise that satisfies the patient and/or family’s requests but does not force the hospital into providing care indefinitely. It happens that such a proposal is moving through the Texas Legislature.
This week, the Senate voted out of committee SB 2089, a bill that would eliminate the 10-day rule and require a hospital and family to work together to arrange new treatment for a patient receiving life-extending care. The hospital would retain the right to determine that continuing care was “inappropriate,” but could not impose that view on the patient or family.
The proposed bill is reasonable and would facilitate greater trust and cooperation between the patient, family and doctor. Most notably, it would help restore the often fleeting sense that the government’s role, whenever possible, is to defend all life, not just those it deems worth living.
This is America, after all.