The judicial decision to allow mechanical life support to be removed from the British infant, Charlie Gard, has been roundly condemned by some sources. The infant’s distraught mother lamented that the parents had been allowed “no control” over their child’s life and death. Demonstrators, calling themselves “Charlie’s army,” assembled near the courthouse crying “shame” at the court’s failure to sustain a preservable human life. Conservative commentators condemned the “unwarranted” governmental interference with parents’ child-rearing prerogatives. They wondered why the parents weren’t permitted to transport the infant, at their own expense, from London to New York to try an experimental medication being offered by a Columbia physician. Another conservative source accused the National Health Service of taking Charlie prisoner, contending that the British health service feared being shown up by American free enterprise medicine if Charlie were treated in New York.
Charlie Gard was born on August 4, 2016, suffering from a rare genetic disease called mitochondrial DNA depletion syndrome (MDDS). MDDS seriously affected Charlie’s brain and muscles, leaving him without ability to hear, see, cry, move his arms or legs, or breathe without a mechanical ventilator. On October 11, 2016, Charlie was admitted to Great Ormond Street Hospital (GOSH) where he was continuously treated until just before his death in a hospice in July 2017.
In early January 2017, the GOSH clinicians had been willing to import and administer an experimental drug (nucleoside powder) touted by a N.Y. physician, Dr. Michio Hirano. Nucleoside treatment had been used by Dr. Hirano for a different mitochondrial mutation (TK2), not MDDS. However, before nucleoside treatment could be initiated, Charlie experienced brain seizures causing even more brain damage – leaving no signs of upper brain activity necessary for responsiveness and interaction with an environment. GOSH’s staff then concluded that there was no meaningful chance that nucleoside treatment could help Charlie. In February 2017, GOSH applied for a judicial order declaring that withdrawal of the ventilator would be in Charlie’s best interests (to shorten the pain and suffering that Charlie was probably experiencing) and therefore would be lawful.
The trial judge conducted several days of hearings in early April reviewing input from various pediatric specialists, some from GOSH and some from independent institutions. That judge concluded that MDDS and the brain seizures had caused irreversible neurological damage leaving Charlie permanently unresponsive to his environment. As to nucleoside treatment as offered by Dr. Hirano, the court noted that that remedy had never been used or tested on animals or humans stricken with MDDS. Dr. Hirano’s experience with nucleoside was limited to a small number of patients with genetic disorder TK2. Moreover, the impact of nucleoside as used by Dr. Hirano had been on upper body activity (reduced time on a ventilator) and not on a deteriorated brain. Because GOSH clinicians had concluded that Charlie “can probably experience pain,” the judge ruled that Charlie’s best interests would be served by having life support removed and being allowed to die. Otherwise, Charlie was facing continued suffering with no realistic chance of disease remediation. Three appellate courts, including the European Court of Human Rights, upheld the trial court’s determinations.
Did GOSH Usurp Parental Authority over a Child’s Medical Treatment?
The contention that GOSH and the British courts improperly displaced parental “control” over a child’s medical treatment is surely misplaced. Whether a patient is a child or an incapacitated adult, the surrogate decisionmaker’s role is not to make unilateral decisions about medical interventions. Rather, a medical course is shaped by a surrogate acting in conjunction with a medical provider. Both the surrogate and the provider are supposed to be pursuing the patient’s best interests. When the surrogate and provider can’t agree on what medical course advances the patient’s best interests, it is entirely appropriate to seek judicial resolution of the dispute. That is what GOSH did in the Gard case.
This paradigm for joint parental/professional decisionmaking is well established. Suppose parents’ religious beliefs preclude blood transfusions for their critically ill child. If that religiously based position is clearly contrary to the child’s physiological well being, a medical provider could and should turn to a court to displace the parents’ preferred course. Or suppose the positions in Gard had been reversed – with the parents seeking removal of life support and the hospital staff favoring continued medical intervention. We would applaud GOSH for turning to a court for judicial resolution of the legitimate dispute over Charlie’s best interests.
The assessment of a patient’s best interests depends in part on evaluation of the potential medical “treatments.” In making that calculation, physicians are entitled to invoke the concept of futility – to refuse to provide a proffered intervention on the basis that, in their professional judgment, it has no plausible chance of success. In the Gard case, GOSH’s negative assessment of nucleoside therapy was well grounded. The therapy had never been used or tested (on animals or humans) on the genetic mutation MDDS. Even with regard to the different genetic mutation (TK2), nucleoside’s “success” had been confined to upper body muscle – i.e., to less time being spent on a ventilator but with no effect on the underlying brain debilitation and dysfunction. In short, the courts’ upholding of GOSH’s assertion of futility of treatment was fully supportable.
Yet when a medical institution invokes “futility” in refusing to provide further care to an incapacitated patient, it is customary to allow the surrogate (here, the parents) to transfer the patient elsewhere if a responsible medical provider is willing to receive the patient and pursue treatment. That is the course set out by American statutes authorizing futility determinations by medical providers. Given that Dr. Hirano was willing to receive Charlie and to administer an admittedly experimental treatment, and given that Charlie’s parents had raised the money to finance a transfer, why wouldn’t GOSH and the British courts acquiesce in Charlie’s transfer? The explanation is below.
Was It a Wrongful Erosion of Parental Prerogatives to Preclude Charlie’s Parents from Pursuing an Admittedly Implausible Solution for Their Desperately Ill Child?
A N.Y. Times columnist, Ross Douthat, disparaged the British refusal to allow the parents, at their own expense, to transport Charlie Gard to New York. He wondered why parents shouldn’t be able to seek a wonder cure (such as taking their child to Lourdes) even in the absence of professional medical backing.
The response to this query in Gard was that transfer of Charlie would not be in his best interests because it would prolong his suffering. GOSH’s staff felt that Charlie could probably experience pain even though he could not express that suffering and the pain could not be measured. Absent a meaningful prospect of therapeutic intervention, the staff regarded it as inhumane to prolong Charlie’s presumed pain. While the proposed nucleoside therapy (a powder added to nutrition) would not itself be burdensome to the patient, continued ventilator maintenance and suctioning were presumably extracting a toll that would persist during transfer and “treatment” in New York. It is noteworthy that Charlie’s independent, court-appointed guardian had agreed with GOSH’s determination that it was in Charlie’s best interests to be allowed to die.
On the other hand, Professor Robert Truog suggests that a standard regimen of analgesics and sedation might have sufficed to control Charlie’s supposed pain and suffering. [ii] If that is so, why shouldn’t the parents have been permitted to expend their collected resources to move Charlie to New York for a desperate try at a solution — even if the chances of success were infinitesimal? Why not Columbia Presbyterian instead of Lourdes, so long as Charlie’s suffering is not being prolonged?
My response is that Charlie’s condition had so degenerated that it would have been inhumane to prolong his life. The MDDS and the ensuing brain seizures had caused irreversible brain damage rendering Charlie permanently unable to interact with his environment. Permanent unawareness, inability to engage in any human relationships, is an intrinsically undignified status that warrants cessation of life-sustaining medical intervention. That is the lesson of numerous decisions, from Quinlan onward, allowing surrogates to remove artificial life support from permanently unconscious patients (see here and here) . When MRI scans in early July confirmed that Charlie’s muscles were atrophying along with his brain, even his devoted parents conceded that this dismal quality of life was no longer supportable. For me, that permanently unaware status explains why Charlie should not have been moved to New York or anywhere else.