From harlie Gard to the separation of conjoined twins: the anguish of life-and-death decisions at the hospital’s frontline.

Dr. Joe Brierley is no stranger to the type of insurmountable ethical dilemma presented at the beginning of tonight’s broadcast of a new BBC documentary on Great Ormond Street Hospital; he has dealt with similar situations before.

Marieme and Ndeye are two-and-a-half-year-old conjoined twins who have defied all medical expectations by surviving to this age. The twins are conjoined, which means they share a circulatory system but have separate hearts and lungs. While Ndeye’s vital organs are in good condition, Marieme’s heart is critically compromised.  If she dies, her more powerful sister will also perish.

As their health deteriorates, the hospital – and their father, Ibrahima – are compelled to deliberate whether or not they should perform surgery to separate them: possibly prolonging the life of one twin, but almost certainly taking the life of the other.

Dr. Brierley, a consultant in paediatric intensive care and chairman of the hospital’s ethical committee, conducts a series of dialogues with colleagues and the girls’ father to determine the best course of action. It is tense and agonizing to watch as they deliberate a death sentence.

“As a father, how do you make sense of the fact that people are even thinking that way?” asks Dr. Brierley, a 50-year-old father of four children, one of whom has experienced their own health complications. “If a decision like this doesn’t weigh on your mind, you’re in the wrong job.”

Great Ormond Street Hospital is a global authority in the treatment of conjoined twins, attracting patients from all over the world. Safa and Marwa Ullah, two-year-old sisters from harsadda, Pakistan, made headlines last month after undergoing 50 hours of surgery in three main operations to successfully separate their skulls.

But this rare disorder, which affects approximately one in 2.5 million births, is not the only type of case that appears before the ethics committee – and in the digital era, medical professionals increasingly find themselves making decisions in full public view.

The case of 11-month-old harlie Gard, who died in 2017 of a rare genetic condition following a lengthy legal dispute between his parents and Great Ormond Street Hospital over whether he should be permitted to travel to the United States for experimental therapy, will be familiar to readers. A High Court judge ruled in favor of the hospital that argued he should not travel and instead be allowed to die with dignity, a decision that drew widespread criticism, including from U.S. President Donald Trump.

Last year, in another high-profile and emotionally charged case in Liverpool, lder Hey Hospital took the parents of 23-month-old lfie Evans to court to enable him to pass away. At one point, police had to prevent protesters from invading the facility in opposition to the decision.

Due to patient confidentiality, Dr. Brierley is unable to remark on the case of harlie Gard, but he maintains that the documentary was planned long before “the controversies.”

Nonetheless, the timing is opportune for revealing the complexity behind what critics consider insensitive decisions. “What I hope people see is extremely difficult decision-making, with children and families in the forefront,” he says. “This is what is missing from social media: the complexity of how parents are routinely involved in this.” They must live with and bear that burden.”

The Royal College of Paediatrics and Child Health issued new guidance earlier this year suggesting that parents caring for ill children should be given more assistance in understanding the potential impact on their personal lives of posting online or involving the media in their cases.

Dr. Brierley expresses concern over the rapid spread of outrages on social media, which obscures the complexity of the ethical debates he and his colleagues confront. “There are subtleties and nuances lost,” he says.

Great Ormond Street was among the first institutions in Britain to establish a clinical ethics committee, with the formation of a working group in 1995 and its formalization in 2000. Since 2004, Dr. Brierley has served as a consultant at the institution. Currently, he says, the committee meets every Wednesday afternoon in the hospital’s boardroom and consists of approximately 24 members with a variety of skill sets, including a philosophy professor, various ethicists, nurses, doctors, chaplains of various faiths, psychologists, and – most importantly – parents of children treated at the hospital.

“Difficult decisions are made every day in every hospital in the country, but some cross a line,” he explains. He believes that medical advancements have increased the need for such ethical discussions, as physicians are able to turn to ever more experimental treatments.

“Medicine has advanced tremendously, but we are performing more high-risk procedures,” he says, citing advances that allow infants awaiting surgery to be cared for at home with apparatus such as heart machines and ventilators, which were previously only available in intensive care units. Even ten or fifteen years ago, infants would have perished if they were subjected to such experimental treatments.

Parents are now considerably more informed about the rare disorders that affect their children as a result of technological advancements. “It is the great democratization of information, which is generally a good thing, but it can cause problems,” he explains. The minor issue is that a lot of people have opinions about things without the necessary knowledge and training.

Religious beliefs can also be a source of contention. In 2014, a London High Court judge determined that the son of two devout Jehovah’s Witnesses who had sustained grievous burns could receive a blood transfusion (from an unnamed hospital trust) despite his parents’ religious objections.

Despite such high-profile cases, Dr. Brierley insists that he and his associates reach an agreement with the parents “95 percent of the time” on “a shared path from a very difficult place.”

According to him, when the hospital decides to involve the courts, it is “ultimately because a decision must be made.”

The parents of harlie Gard, onnie Yates, and hris Gard have proposed a new law that would allow parents to transfer their infant to a different hospital if they disagree with the treatment chosen by physicians. Dr. Brierley argues that this action is unnecessary.

“I don’t believe the law would affect the majority of our actions,” he says. “In our work with children and their families, we constantly base decisions on parental opinions.”

Currently, he estimates that approximately sixty percent of NHS trusts have their own ethics committees, a number that will continue to rise. “We’ve gotten better at sharing our uncertainty with parents and asking them, ‘What would you like to do?'” he says.

Regarding the programme’s conjoined twins, Ndeye and Marieme, the decision was made not to operate. They are still alive, residing with their father in Wales and receiving respite care from a hospice on occasion.

Dr. Brierley acknowledges that surviving childhood is exceedingly unlikely, but he and his colleagues can only hope they are incorrect. “One must always have the humility to admit, ‘I cannot predict the future.'”