ETHICS & MEDICS NOVEMBER 2017 VOLUME 42, NUMBER 11 A Commentary of The National Catholic Bioethics Center on Health Care and the Life Sciences MY NAME My doctors believed that my ventilator should be switched off, but my parents disagreed, which is why my WAS CHARLIE GARD case ended up in the courts, which upheld the judgment of my doctors and decided that it was not in my best interests to receive further treatment and that I should be allowed to Rev. Gerald D. Coleman, PSS “die with dignity.” This difference of opinion introduced a thorny bioethical issue that divided global opinion about who should decide my fate: my parents, my doctors, or the courts?6 Justice in the United States is considerably affected by o the American esteem for personal autonomy and respect y name was Charles Gard, but everyone called me for personal rights: “Our health system . so powerfully Charlie. I was eleven months old when my par- protects the rights of the individual that we could not imag- 7 ents decided to end a contentious legal fight and ine justice . that did not privilege informed consent.” M Americans would insist that my rights would be properly allow me to die. I was born in West London on August 4, 2016. My dad, Chris, is a postman and my mom’s name interpreted only by my parents. This understanding of is Connie. They are still young, only in their thirties. At justice differs from that in the health care system of the birth, I seemed to be developing normally, but by October, United Kingdom, where it is presumed that the courts, it was apparent that I was not gaining weight. I was then relying on the evidence presented by doctors, are able to admitted to the neonatal intensive care unit at London’s make a more objective judgment on a child’s best interests Great Ormond Street Hospital, one of the world’s leading than parents are. It is impossible to appreciate the legal children’s hospitals, and treated for encephalomyopathic and moral complexity of my case without understanding mitochondrial DNA depletion syndrome, a rare genetic this distinction. condition which prevents cells from producing sufficient Parental Rights energy to maintain normal bodily functions.1 Experts on my form of MDDS, called RRM2B, unanimously agreed he sharp difference of opinion between my parents that there was no cure or treatment. At the time of my death Tand the doctors and courts regarding my best interests on July 27, 2017, it was thought that only sixteen children raised grave concerns over my parents’ right to be the globally have this condition.2 primary decision makers on my behalf. My case pitted the United Kingdom’s state-financed medical system against Who Decides My Case? my parents’ right to protect me. It was surprising to me that ecause I could not breathe on my own, I suffered cata- while the UK High Court of Justice wrote glowingly about Bstrophic and irreversible brain damage and was placed on my dad and mom, it in fact distanced them from any major life support.3 My muscles were weak, I was deaf, and I suffered role in deciding my fate. The court paid tribute to my par- from persistent epileptic seizures beginning on December 15, ents for “their dedication” and “tireless pursuit” of a cure 2016, despite being on four types of anti-seizure medica- for me but stated that my parents did not feel “that there tions.4 Doctors also observed that my skull had not grown in [was] any role for a Judge or a court” and that only they three months, an indicator of deficient brain development. “can and should speak” for me. The court acknowledged I was not able to respond to my parents, and I did not know that my parents felt that they had “been stripped of their 8 if I was awake or asleep. But I did experience some signifi- rights as parents.” Great Ormond Street Hospital agreed cant pain, and my doctors believed that “being ventilated, that my parents felt that only they had a right to speak for 5 me and that the hospital should not have the right to ask being suctioned . .. are all capable of causing pain.” These symptoms led them to describe me as nonresponsive. the courts for an independent judgment. Clearly, there was a fundamental and unbridgeable disagreement over 9 Rev. Gerald D. Coleman, PSS, was vice president of corporate parental rights. ethics for the Daughters of Charity Health System in Los Altos While not disparaging physicians’ expert opinions, Hills, California, and president and rector of St. Patrick’s Seminary I believe that parents are the best advocates for their chil- in Menlo Park. He currently teaches at Santa Clara University. dren’s rights. In this regard, the laws in the United Kingdom DEFENDING THE DIGNITY OF THE HUMAN PERSON IN HEALTH CARE AND THE LIFE SCIENCES SINCE 1972 ETHICS & MEDICS NOVEMBER 2017 place too great an emphasis on the courts. I understand my physiological existence. My parents argued to keep that Catholic teaching holds that the patient is the primary me on the ventilator, because it was doing exactly what it decision maker in health care decisions, and since I was was supposed to. It is this level of difficulty that makes the not able to speak for myself, this role fell to my dad and question of medical futility so problematic. mom. But my parents were not given the final word, and I My dad and mom raised more than $1.5 million from think this was misguided and demonstrates a weakness in over eighty thousand donors for the trip to New York, UK law. In the United States, the Ethical and Religious staking their hope on the experimental therapy: “He’s our Directives for Catholic Health Care Services clearly state that son. We feel it should be our right to decide to give him a “those who are in a position to know best the patient’s chance at life.”15 My dad and mom would not accept that wishes—usually family members and loved ones—should intervention was futile until every possible treatment option participate in the treatment decisions for [a] person” such had been exhausted. Dr. Hirano believed that there was 10 as myself. about a 10 percent chance that the treatment would give In Troxel v. Granville, the US Supreme Court unequivo- me some muscle strength and brain function and perhaps cally stated that parents have a “fundamental right” enable me “to smile and grab objects.”16 Because I did not regarding decisions about their children. Justice Sandra respond to anything but pain (I was on a low dose of oral Day O’Connor wrote, “The interest of parents in the care, morphine) and my gradual deterioration was noted by my custody, and control of their children is perhaps the oldest caretakers, it appeared that the treatment would not bring of the fundamental liberty interests recognized by this me any sustained benefit even if it were successful. 11 Court.” In the absence of clear evidence that a parental Before they knew about the experimental treatment, my decision (medical or otherwise) is harming a child, I think parents went to court to prevent the hospital from with- that the law ought not to interfere. After all, “it is the parents drawing my ventilator, but on June 8, 2017, the Supreme who suffer the biggest impact of their child’s disease, and Court of the United Kingdom rejected their appeal.17 Once the ones who will be hurt the most by their child’s death. again, I think it is important to remember the difference In this way, parents are perhaps the greatest stakeholders between the English and American systems of law. In the in scenarios involving very young, very sick children.”12 United Kingdom, once any party to a family–physician The Hospital, My Parents, dispute asks for judicial direction, the court is to make an and Dr. Hirano independent objective judgment on the child’s best inter- ests. A UK court cannot simply defer to the wishes of the he hospital and my doctors were not being cruel. Their parents, and British judges have with rare exception sided Tintent was not to kill me but to place me on palliative with health care professionals.18 In contrast, when disputes care and permit me to die peacefully. The hospital’s state- of this nature have occurred in the United States, courts have ment is a testament to this fact: Charlie is “a beautiful, tiny invariably ruled in favor of life-sustaining medical treatment baby afflicted by one of the cruelest of diseases” which left requested by the family. It is misleading to conclude that me “with no muscle function at all now and deprived of his the UK courts immorally usurped the rights of my parents, senses, unable to breathe and, so far as can be discerned, as they were correctly following European legal procedure after many months of encephalomyopathy, without any and precedent. awareness.”13 My case was assigned to Mr. Justice Peter Francis of the My parents did not want to give up on me, but not out Family Division of the High Court. Regarding Dr. Hirano’s of selfishness. They anchored hope in a therapy offered by proposed treatment, Justice Francis wrote, “No one in the an American physician, Dr. Michio Hirano of Columbia world has ever treated this form of MDDS with nucleoside University, whose neurology department is one the world’s therapy.