1) What could the hospital have done to be in better alignment with the Hippocratic Oath to "first, do no harm"?

2) Compliance tool and Managerial action Recommendation. Make a recommendation for use of a compliance tool and managerial action.

Case study

"Baby Charlie" died on July 28, 2017. His death made international news, much as his life did. Charlie's mother said that her son "had a greater impact on and touched more people in this world in his 11 months than many people do in a lifetime" (Bilefsky 2017). The dramatic events surrounding the end of Charlie's life captured the attention of people worldwide, including the pope and the president of the United States.

Charlie Gard was born in London, England, on August 4, 2016, and he appeared to be a healthy baby. In his first months, however, he failed to gain weight and was unable to lift his head or support himself as normal. On October 11, he was admitted to Great Ormond Street Hospital in London. There, he was diagnosed with mitochondrial DNA depletion syndromea rare, debilitating, and fatal genetic condition that left him on life support with irreversible brain damage for months. Soon, Charlie was unable to

see, swallow, or move his arms or legs, and he showed no usual signs of brain activ- ity, responsiveness to pain or pleasure, or crying. The medical team could not tell if Charlie was awake or asleep, and seizures became common. It was the "assessment of the medical team at Great Ormond Street Hospital that further treatment was futile and that palliative care should be pursued" (Hammond-Browning 2017, 462).

Charlie's parents, Chris Gard and Connie Yates, did not agree with this medical assessment, and they fought long and hard to control their son's life and, later, the terms of his death. What Charlie's parents wanted for him differed from what the medical team believed to be the right course of action, and a legal battle ensued, first in the British courts and eventually in the European Court of Human Rights. The European Court backed the hospital's opinion, "in part because experts said Charlie could be suffering" (Bilefsky 2017). Much of the battle surrounded the parents' desire for Charlie to have an experimental treatment known as nucleoside therapy, which had not yet been tried on anyone with Charlie's diagnosis or debilitation. The parents had spoken with Dr. Michio Hirano, a neurologist at Columbia University Medical Center in New York, who said there was a "theoretical possibility" that the treatment could be of benefit to Charlie (Hammond-Browning 2017). Dr. Hirano indicated, how- ever, that severe brain involvement was a contraindication to the use of nucleo- side therapy.

The Great Ormond Street Hospital prepared a referral to the hospital's ethics committee to examine the ethical implications of using the experimental treat- ment. However, before the committee could meet, Charlie developed intermittent seizures and severe epileptic encephalopathy. The hospital's medical team decided that nucleoside was no longer a viable treatment option and would only serve to prolong Charlie's suffering (Hammond-Browning 2017).

The parents continued their fight by trying to take Charlie to the United States for nucleoside treatment. They used social media to seek funding and raised more than 1.3 millionthe equivalent of more than $1.6 million. Funding for the treat- ment became a point of contention. The hospital insisted that funding was not the issue, but much of the public following the case was skeptical. In court, one medi- cal expert testified that the United States and the United Kingdom had a difference in philosophy. She stated that, in the United States, any medical treatment will be attempted as long as funding is available, whereas her approach was centered on the best interests of the patient (Hammond-Browning 2017).

The court-appointed guardian for Charlie argued that nucleoside therapy was not in Charlie's best interest and that it was not a lifesaving treatment, but merely experimental. The judge agreed and ruled in favor of the hospital, declaring that the hospital could discontinue artificial ventilation and provide palliative care only (Hammond-Browning 2017). The parents then filed appeals.

In court, the lawyers for Great Ormond Street Hospital argued that Dr. Hirano had never examined Charlie and therefore did not have the benefit of his full medi- cal record. Later, when Dr. Hirano traveled to London to examine Charlie, he deter- mined that further treatment would be futile. The parents argued the hospital had delayed the treatment until it was too late (Bilefsky 2017).

The experimental treatment was now out of the question, but the legal battle over the end of Charlie's life continued. The parents wanted to take Charlie home to die, but the hospital's medical team argued that the "risk of an unplanned and chaotic end to Charlie's life" while living at home was "unthinkable" (Bilefsky 2017). This heated and often acrimonious legal dispute was still ongoing when Baby Charlie died at the age of 11 months and 24 days. He had been on life support for the majority of his life (Bilefsky 2017).

As these emotional legal battles took place in the courts, heated debates spread widely over Facebook, Twitter, and other social media. Supporters of both the hos- pital's and the parents' viewpoints offered religious and political arguments, and experts in the fields of medicine, ethics, academia, research, and the law published their opinions. Past discussions of end-of-life decisions, assisted suicide, and death with dignity were resurrected, and parental rights and socialized medicine became renewed topics of political controversy. Pro-life advocates joined in the zealous fight. Crowds of protestors lined the streets outside of the hospital; some hospital staff even faced death threats (Bilefsky 2017). A powerful symbol for humanity, Baby Charlie Gard engendered significant, weighty questionssome of which society has yet to answer definitively.

Reference:

Perry, F. (2020). The Tracks We Leave: Ethics and Management Dilemmas in Healthcare, Third Edition: Vol. Third edition. ACHE Management Series.