ETHICS & MEDICS November 2017 Volume 42, Number 11

A Commentary of The National Catholic 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 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 .” M Americans would insist that my rights would be properly allow me to die. I was born in West 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, , 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 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 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 department is one the world’s therapy. . . . There is no evidence that nucleoside therapy 14 leading institutions in mitochondrial-disease research. can cross the blood/brain barrier which it must do to treat Dr. Hirano wanted my parents to take me to New York– RRM2B.”19 Importantly, Dr. Hirano acknowledged that the Presbyterian Hospital/Columbia University Medical Center proposed therapy had never been tested in animal studies for an experimental treatment called nucleoside therapy. He for the mutation afflicting me, and agreed the damage to called this treatment pioneering, as it had yet to be tested on my brain was “likely irreversible.” 20 After studying my MRI mouse models. Moreover, it was unlicensed and would have and personally examining me for five hours, Dr. Hirano said needed FDA approval for a “compassionate use exception.” that my condition was clearly irreversible and he could no At the time of my diagnosis, my parents wanted to take me longer offer his therapy. But my parents believed that the to the United States for this treatment, as I was still relatively treatment might have proved effective if it had been used healthy even though my muscles were weak. The hospital earlier in my illness.21 The hospital criticized Dr. Hirano for would not permit this, because my doctors believed the not reading my medical records or the previous judgments treatment was futile and the trip was dangerous. of my doctors before making his initial diagnosis. He also I think that the doctors should have explained why admitted to the court that he “retains a financial interest in they believed that keeping me on a ventilator was futile. some of the . . . compounds he proposed prescribing” for I suppose they meant that because of the effects of MDDS, me. This certainly raises a moral question about a conflict life support no longer benefited me beyond maintaining of interest.22 2 Ethics & Medics November 2017

The Legal Quagmire to judicial murder and .29 Many commentators misinterpreted important moral teachings of the Catholic t was in the middle of this legal quagmire that Justice Church. A central question in is whether or IFrancis asked, “Why should the parents not be the ones not a treatment, in my case a ventilator, offers hope of benefit to decide?” He explained that in the United Kingdom, proportionate to a patient’s suffering. A medical interven- “overriding control is by law vested in the court exercising tion is ordinary or extraordinary relative to a patient.30 Did its independent and objective judgment in the child’s best keeping me on a ventilator promise any real benefit, or had 23 interests.” Citing Mr. Justice James Holman, he wrote that its use become burdensome because it did not promise any my parents’ wishes are “understandable in human terms . . . proportionate good and was only prolonging my suffer- [but] wholly irrelevant” to objectively deciding my best ing and dying? I loved my parents and understood why interests. While there is a strong presumption in favor of they hoped that the experimental therapy proposed by prolonging life, “in the end there will be cases in which the Dr. Hirano would benefit me. Dr. Hirano himself concluded answer must be that it is not in the interests of the child to that even if successful, the benefits would be virtually neg- subject it to treatment which will cause increased suffering ligible. This assertion made me think that its experimental and produce no commensurate benefit.” nature made it extraordinary and disproportionate. The The UK courts affirmed my doctors’ determination that Catholic tradition holds that a treatment is optional if it the continuation of artificial ventilation was no longer in my amounts to great or enormous effort summus( labor).31 24 best interests. The courts also ruled that it was not in my The continued use of a ventilator would keep me alive best interests to undergo experimental nucleoside therapy for a while, but my brain would continue to deteriorate, my in America, as this had no realistic prospect of benefit and pain would continue, and my dying would be prolonged. might add to my distress. Justice Francis told the court that Human life must always be respected, but it is also nec- he came to his conclusion “with the heaviest of hearts but essary to accept death. My parents’ love made me know with complete conviction for [my] best interests.” He also that I am valued. By permitting my doctors to remove my paid tribute to my parents for their “absolute dedication to ventilator, their aim was not to murder or euthanize me but 25 their wonderful boy from the day that he was born.” On rather to admit that further treatment no longer benefited July 17, the European Court of Human Rights endorsed the me. It was not morally required to pursue every possible judgments of the UK courts. In a subsequent news release, intervention. While human life is always worthy of respect, the Council of Europe said that “the domestic courts con- not every treatment is worth pursuing, if it no longer serves cluded that it would be lawful for the hospital to withdraw its purpose, is excessively burdensome, or promises too little life-sustaining treatment because it was likely that Charlie benefit relative to the burdens it entails. would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, I was baptized on July 24, and a spokesperson for my and the experimental therapy would be of no effective dad and mom said they “‘trust that soon’ I ‘will be in the 32 benefit.”26 hands of his loving God.’” I was moved to a on July 27. My parents accepted this transfer and were with International Sympathy me when I died. This was an overwhelming gift to me, even and Controversy though I am sure they suffer at my loss. My parents estab- lished a charity to help other children with my condition. he court judgments stirred international sympathy and This makes all the attention and affection I received more Tcontroversy. said that human life must be than worthwhile. Just before the decision was made to end 27 defended, especially “when it is wounded by illness.” the court battle, Pope Francis again said that he hoped my I think that the Pope did not want me to be a victim of what parents “may find God’s consolation and love.”33 My hope he frequently refers to as the throw-away culture. A Vatican is that everyone has. spokesman told Vatican Radio that the Pope had been following my case “with affection and sadness,” wanting Notes 1. Magdalena Kegel, “Charlie Gard Case Captures Vast and Unmet especially to “accompany” my dad and mom through this Needs of People with , Group Says,” very difficult time. Archbishop Vincenzo Paglia, president of Mitochondrial Disease News, July 13, 2017, https://www.mitochondrial the Pontifical Academy for Life, added that while we must diseasenews.com/. do what is the best for my health, “we must also accept the 2. Holly Christodoulou, “Cruel Disease: What Is Mitochondrial DNA limits of medicine.” The Vatican Secretary of State expressed Depletion Syndrome, and Just How Rare Is Charlie Gard’s Deadly his willingness to help me get to the United States if any Condition?,” Sun, July 27, 2017, https://www.thesun.co.uk/. 3. Kenan Malik, “Charlie and Our Moral Confusion,” New York Times, nationality problem arose. The president of the Vatican’s July 19, 2017, https:www.nytimes.com/. Bambino Gesù Children’s Hospital in Rome expressed a 4. Lisa Fullam, “The Best for Charlie: What the Catholic Moral willingness to take me if my health condition permitted a Tradition Has to Say,” Commonweal, July 12, 2017, https://www transfer. In the United States, President Trump offered me .commonwealmagazine.org/. help and called me “little #CharlieGard.”28 I was deeply 5. Jana Bennett, “Charlie Gard: A Story of Disability Bias,” America, touched by these sentiments of support. July 7, 2017, https://www.americamagazine.org/. 6. Dan Bilefsky, “Parents of Charlie Gard, Ill British Infant, Abandon I was bothered by some of the moral analyses of my Efforts to Prolong His Life,”New York Times, July 24, 2017, https:// case. One writer believed that allowing me to die amounted www.nytimes.com/. See also National Catholic Bioethics Center, 3 The National Catholic Bioethics Center

6399 Drexel Road, Philadelphia, PA 19151–2511 www.ncbcenter.org

ETHICS & MEDICS Volume 42, Number 11 November 2017 The views expressed here are those of the individual authors and may advance positions that have not yet been doctrinally settled. Ethics & Medics makes every effort to publish articles that are consonant with the magisterial teachings of the Catholic Church.

“Statement of The National Catholic Bioethics Center on the Charlie 17. Owen Bowcott, “Charlie Gard’s Parents Make Emergency Appeal Gard Case,” press release, July 7, 2017, https://www.ncbcenter.org/. to European Judges,” Guardian, June 8, 2017, https://www.theguar 7. James F. Keenan, Moral Wisdom: Lessons and Texts from the Catholic dian.com/. Tradition, 2nd ed. (Plymouth, UK: Rowman and Littlefield, 2010), 18. Ibid.; and Great Ormond Street Hospital v. Yates and Gard EWHC 972 150–151. (Fam) (2017). 8. D. J. C. Wilkinson et al., “The Charlie Gard Case: British and 19. Great Ormond Street Hospital v. Yates and Gard, para. 20. American Approaches to Court Resolution of Disputes over 20. Wilkinson et al., “Charlie Gard Case.” Medical Decisions,” Journal of Perinatology (forthcoming). 21. Patrick B. Craine, “Charlie Gard’s Parents End Legal Fight to Save 9. Claire Chretien, “Charlie Gard Hospital Slams ‘World Where Only Baby’s Life,” LifeSite News, July 24, 2017, https://www.lifesitenews Parents Decide for Children,’” LifeSite News, July 19, 2017, https:// .com/. www.lifesitenews.com/. 22. Associated Press, “Charlie Gard Parents Drop Legal Fight, Agree 10. US Conference of Catholic Bishops, Ethical and Religious Directives to Let Him Die,” ABC News, July 24, 2017, http://www.abcnews for Catholic Health Care Services, 5th ed. (Washington, DC: USCCB, .com/. There is similarity here with the case of , 2009), dir. 25. Many Catholic documents support parents’ “primor- who died as a result of a gene-therapy clinical trial. See Osagie K. dial” right in the care of their children. See, for example, Pontifical Obasogie, “Ten Years Later: Jesse Gelsinger’s Death and Human Academy for Life, “Moral Reflections on Vaccines Prepared from Subjects Protection, Hastings Center, October 22, 2009, http://www Cells Derived from Aborted Human Fetuses,” reprinted in National .thehastingscenter.org/. Catholic Bioethics Quarterly 6.3 (Autumn 2006): 541–550. 23. Great Ormond Street Hospital v. Yates and Gard, para. 36, 11, and 39(x) 11. Troxel v. Granville, 530 U.S. 57, 65 (2000). and (viii); and Dominic Wilkinson, “Beyond Resources: Denying 12. Grace Stark, “Even Very Sick Children Deserve Medical Care: Parental Requests for Futile Treatment,” Lancet 389.10082 (May 13, Why Every State Needs ‘Simon’s Law,’” Public Discourse, May 2017): 1866–1867, doi: 10.1016/S0140-6736(17)31205-9. 31, 2016, http://www.thepublicdiscourse.com/. In Kansas, 24. Anscombe Bioethics Center, “Charlie Gard: Doing the Right Thing physicians must receive written parental consent to add a for the Right Reason,” press release, July 5, 2017, available at https:// do-not-resuscitate order or similar order to a minor patient’s www.mercatornet.com/. medical chart. See Simon’s Law, Kansas Senate Bill 85 (July 1, 25. Great Ormond Street Hospital v. Yates and Gard, para. 23 and 24. 2017). 26. Council of Europe, “United Kingdom: Human Rights Judges 13. Richard Allen Greene and Laura Smith-Spark, “Baby Charlie Gard’s Endorse Decisions by Courts in Charlie Gard Case,” press release, Parents Storm Out of Court Hearing,” CNN, July 13, 2017, http:// June 28, 2017, http://www.humanrightseurope.org/. www.cnn.com/. 27. Francis, twitter post, June 30, 2017, 11:32 a.m., https://www.twitter 14. Claire Chretien, “U.S. Doctor Examines Baby Charlie Gard in .com/. Hopes of Saving His Life,” LifeSite News, July 17, 2017, https://www 28. Donald J. Trump, twitter post, July 3, 2017, 7:00 a.m., https://www .lifesitenews.com/. .twitter.com/. 15. Alice Park, “When Parents and Doctors Disagree on What Futile 29. Michael Sean Winters, “Let Charlie Gard Live!,” National Catholic Means,” Time, July 13, 2017, http://www.times/com/. To enable Reporter (blog), July 5, 2017, https://www.ncronline.org/. this trip, US Representatives Brad Wenstrup (R-Oh) and Trent 30. USCCB, Ethical and Religious Directives, dir. 56–57. Franks (R-AZ) sought to give Charlie permanent residency in the 31. Scott M. Sullivan, “A History of Extraordinary Means,” part 3,Ethics United States under a parliamentary procedure known as a private & Medics 31:11 (November 2006): 3. bill. See Emily Cochrane, “Lawmakers Push to Give Ill Baby U.S. 32. Claire Chretien, “Charlie Gard Was Baptized, ‘Will Be in the Hands Residency,” New York Times, July 11, 2017, https://www.nytimes of His Loving God,’” LifeSite News, July 25, 2017, https://www .com/. .lifesitenews.com/. 16. Dan Bilefsky and Sewell Chan, “For Parents of U.K. Infant, Trump’s 33. Simon Caldwell, “Pope, Others Pray as Parents of Charlie Gard Tweet Is Latest Twist in an Agonizing Journey,” New York Times, End Legal Struggle for Help,” Catholic News Service, July 26, 2017, July 4, 2017,https://www.nytimes.com/. http://www.catholicnews.com/. 4

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