The Rights of Parents Facing a Terminal Diagnosis: A Comparative Glance at the U.S. and the UK Involving Parents’ Wishes Regarding Medical Decisions for Their Terminally Ill Child

Blog by Katherine Johnson, Junior Associate

On December 11, 2023, the Texas Supreme Court issued a writ of mandamus ordering the Travis County District Court to vacate its temporary restraining order against Texas Attorney General Ken Paxton, and holding that the court failed to apply the proper legal standard in determining that Kate Cox met the requirements of the exception to the total abortion ban. The Texas law requires the exercise of reasonable medical judgment to determine that a woman was facing “a life-threatening physical condition aggravated by, caused by, or arising from a pregnancy that places the female at risk of death or poses a serious risk of substantial impairment of a major bodily function unless the abortion is performed or induced.”[1]  The Texas Supreme Court held that Dr. Damala Karsan, the OB/GYN who was to perform the procedure, had not sufficiently established that Cox had a life-threatening physical condition.[2]  More importantly, the court held that a court order was not necessary in order for a woman to obtain an abortion in Texas, rather it is up to the discretion of the doctor in using their “reasonable medical judgment.”

 

However, this term has yet to be defined by the Texas Medical Board and has left providers paralyzed by fear of prosecution, given Attorney General Paxton’s threatening letter to the hospitals where Dr. Karsan has admitting privileges.[3]  Furthermore, it has been argued that the standard required by the exception to the abortion ban is too high and should not apply to women facing lethal fetal diagnoses.[4]  Cox had been admitted to the emergency room four times in the span of one month due to complications resulting from carrying a baby with a lethal diagnosis.[5]  She was medically advised that if her daughter, Chloe, was born, the best-case scenario was that she would survive for a week and directly be placed on hospice.[6]  Cox, along with her husband, Justin, decided that, instead of waiting for their daughter to die in utero or a week after being born, that abortion was the best course of action in order to preserve Cox’s future fertility.[7]  They ultimately traveled outside the State of Texas in order to obtain the procedure.[8]   Although Texas is just one of 50 states in the U.S., it is somewhat of a legislative guinea pig for other states that want to see how far their abortion bans can go.

 

About a month prior to this ruling, an 8-month old baby with a terminal diagnosis named Indi Gregory died in the United Kingdom after her doctors convinced the courts that it was in her best interest to remove her life support, against her parents’ wishes.[9]  The courts intervened due to the fact that there were differing opinions as to the course of treatment between the baby’s parents and her doctors. In the UK, there is an arguably low standard triggering court intervention, known as the “welfare of the child” standard, whereby the courts can intervene and supersede the will of the parents in favor of the child’s medical practitioners if the welfare of the child is called into question.[10]  In cases involving terminally ill children, the courts regularly take to the position of the child’s doctors over that of the parents.[11]  Indi’s case is another in a series of cases of terminally ill children whose doctors have chosen to terminate life-sustaining treatment against the wishes of the children’s parents.[12]  This has led to the belief that the standard triggering court intervention should be raised to one of “significant harm”, where the courts only intervene if the parent’s medical decision poses a risk of significant harm to the child.[13]  In this case, the baby’s parents wanted to continue seeking out alternative, experimental treatment methods, and were even offered free treatment at Bambino Gesu Children’s Hospital in Italy, with the Italian government granting the baby citizenship to facilitate her transfer.[14]  The baby’s parents believed it was in her best interest to prolong her life, whereas the baby’s doctors believed her best interest should be determined by her quality of life, considering that she had no awareness of her surroundings and was suffering.[15]  The lack of a clear right and wrong answer as to the child’s best interest in this, and similar, situations, as well as the blatant disregard of the parents’ wishes, has garnered national attention for the current UK legal standard.[16]

 

Although the cases of baby Chloe and baby Indi differ in important ways, they share a similar theme: the government superseding parents in making values-based medical decisions for their children. As mentioned above, there is no black or white answer when it comes to longevity vs. quality of life, and that decision is especially nuanced when it is being made by parents on behalf of children who are not yet able to speak for themselves.[17]  While the legal standard in Texas, as well as other states, is arguably too high, the legal standard in the UK is shockingly low.

[1] TEX. HEALTH & SAFETY CODE § 170A.002(b)(2).

[2] In re State of Texas, 67 Tᴇx. Sᴜᴘ. Cᴛ. J. 163 (2023).

[3] Eleanor Klibanoff, Kate Cox’s Case Reveals How far Texas Intends To Go to Enforce Abortion Laws, Tʜᴇ Tᴇxᴀs Tʀɪʙᴜɴᴇ (Dec. 13, 2023, 5:00 AM), https://www.texastribune.org/2023/12/13/texas-abortion-lawsuit/

[4] Eleanor Klibanoff & Neelam Bohra, Judge Says Texas Woman May Abort Fetus with Lethal Abnormality, Tʜᴇ Tᴇxᴀs Tʀɪʙᴜɴᴇ (Dec. 7, 2023, 3:00 PM), https://www.texastribune.org/2023/12/07/texas-emergency-abortion-lawsuit/

[5] Id.

[6] Tracy Smith, Texas Mother Kate Cox on the Outcome of Her Legal Fight For an Abortion: “It Was Crushing”, CBS Nᴇᴡs (Jan. 14, 2024, 9:26 AM), https://www.cbsnews.com/news/kate-cox-on-her-legal-fight-for-abortion-trisomy-18/

[7] Id.

[8] Id.

[9] A Terminally Ill Baby at the Center of a Legal Battle in Britain and Italy Has Died, Tʜᴇ Assᴏᴄɪᴀᴛᴇᴅ Pʀᴇss, (Nov. 13, 2023, 8:50 PM), https://apnews.com/article/britain-baby-indi-gregory-legal-battle-dies-ccf29a8a02ce764b498bbc139e004517

[10] Cressida Auckland and Imogen Goold, Parental Rights, Best Interests and Significant Harms: Who Should Have the Final Say Over a Child’s Medical Care? 78 Cᴀᴍʙʀɪᴅɢᴇ L. J. 287, 288 (2019).

[11] J. J. Paris et al., The Charlie Gard Case: British and American Approaches to Court Resolution of Disputes Over Medical Decisions, 37 J. Pᴇʀɪɴᴀᴛᴏʟᴏɢʏ : Oғғ. J. Cᴀʟ. Pᴇʀɪɴᴀᴛᴀʟ Ass’ɴ 1268, 1268 (2017).

[12] Id. at 289.

[13] Id. at 288.

[14] Supra note 9.

[15] Id.

[16] Supra note 10, at 290, 300.

[17] Id. at 300-01.

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