Stories of two New Jersey boys receiving care at Children’s Hospital of Philadelphia (CHOP) highlight the crisis of hospitals overriding patient and family medical decisions. Jayden Auyeung and Areen Chakrabarti were both on life-support at CHOP this spring when the hospital attempted to remove life-support against the expressed wishes of their parents. Both families separately took their cases to court and temporarily required CHOP to continue providing life-sustaining care to the boys.
Earlier this month, news broke that 10-year-old Jayden had died while still receiving care at CHOP. Christopher Bagnato, an attorney for the Auyeung family, issued a statement:
We do not know the exact cause of death as of yet. It is too early to tell. But we do know that Jayden’s life-support was not removed from him. The court’s stay preventing removal was still in place. God bless him and his family during this very difficult time.
Sadly, Jayden’s fight for continued care has ended. If not for timely legal intervention, his fight may have ended much sooner. Areen, 14, remains at CHOP on a ventilator and other life-sustaining care while his family seeks to transfer him to their home-state of New Jersey.
The hospital’s justification for the unethical decision to override the wishes of the patients’ rightful medical decision-makers was that both boys had been declared “brain-dead,” a claim which both families dispute. Jayden’s mother did not accept the hospital’s assessment that her son showed no possibility of improvement. She stated while he was at CHOP, “When we touch him or talk to him, he moves his finger and moves his leg and moves his mouth.” Jayden was on life-support following complications from spinal muscular atrophy, and the family hoped that he could be treated with gene therapy.
Areen suffered brain damage from smoke inhalation during a fire in his family’s home in April. His mother, who has remained in vigil at his bedside says when Areen’s blood pressure rises, the sound of her voice causes his blood pressure to fall, a observation that undermines CHOP’s claim that Areen shows no signs of brain activity.
The two cases, very similar to each other, also show uncanny resemblance to the two cases in the United Kingdom that shocked the world in recent years. Charlie Gard and Alfie Evans were both removed from life-support against the wishes of their families. Both boys showed signs that they might benefit from experimental treatments, but the hospitals refused to release the patients to seek treatment at hospitals that had agreed to accept them. The cases showed the anti-Life “quality of Life” ethic that prompted the hospital to end the boys’ lives due in part to disabilities that are not well understood.
Even closer to home, Texas has many similar cases because Texas law does not protect patients like Jayden and Areen. In fact, the Texas 10-Day Law codifies the unethical treatment of patients by giving hospitals the authority to remove life-sustaining care against the written or otherwise expressed wishes of the patient or family. Additionally, until recently Texas did not require hospitals to obtain consent for Do-Not-Resuscitate orders, which led to dangerously anti-Life policies of forced or secret DNRs. Despite a 2017 law requiring reform, the work to ensure that Texas patients are protected continues.
Texas Right to Life sends our thoughts and prayers to Jayden’s family. No patient and his or her loved ones should have to fight anti-Life hospital bureaucracy while fighting to stay alive. As the family’s lawyer observed, “This goes to show you that there needs to be policy change in the state of Pennsylvania, not only with CHOP.” He continued, “What we hope for is a change in death criteria, procedures, and protocol, because they must see that there are issues with the policies that are in place right now.”
Pro-Life Texans have worked for years to ensure that the law fully recognize the Right to Life of patients like Jayden and Areen and protects their decisions. The next step in the road to reform for Texas is the Republican Party of Texas legislative priority to repeal the anti-Life Ten-Day Law. With the help of grassroots activists like you, patients like Jayden will not need to go to court for the right to continue life-sustaining care.