Remembering Charlie Gard

Charles Gard did not live long enough to celebrate his first birthday, yet captured the world’s attention with his memorable courage and strength. He was born August 4, 2016 and died this year just days before his birthday on July 28.

For those unfamiliar with the highly debated medical-legal case, Baby Charles was born to Connie Yates and Chris Gard. Shortly after birth, Charles’ health was declining to the point that he required medical attention. In October, he was admitted to a hospital in London, Great Ormond Street Hospital for Children. Charles was the 16th person ever to be diagnosed with mitochondrial DNA depletion syndrome – a rare inherited condition causing muscle weakness and brain damage.

Physicians at the London hospital refused to let Mr. and Mrs. Gard fly Charles to New York City for an experimental treatment offered to the family at Columbia University. Despite raising $1.5 million dollars to transport him from London to New York, physicians at the London hospital also urged Mr. and Mrs. Gard to get Charles off life support. This sparked severe controversy because many argued that doctors should not decide if Charlie’s life was worth living.

The news event was not just an unrelated event to me. It definitely struck a cord with me. In fact, this scenario lead me to thinking – how would I handle such a situation as a doctor? If I had a patient in a similar situation, what would I recommend for the patient? How important is the families’ role in the decision making process? But, most importantly, as a student, how can I learn about ethics and what are the things I can do to ensure that I will make the best, most ethical decisions for my patient?

Unfortunately, medical ethics education is rare. It is saddening, but medical ethics (or anything in humanities and social sciences related) plays a small role in the personal and professional development of a future doctor. Only a handful of schools offer courses or seminars on the topics.

As a non-traditional student, I came to school with an already developed interest and strong value in literature, humanities, and social sciences. Searching for opportunities to strengthen my knowledge and skill set within these fields was like finding a needle in a haystack. I wish I had a mentor or colleagues who also appreciated areas of studies, such as medical humanities and ethics.

It was reassuring, however, to find that my sentiments are shared by many other students in a nationwide survey. According to one study by Carey et al., majority of medical students are receptive to the role of character development in medical education. The authors assumed that medical students are receptive to character-based approaches towards ethics and professionalism training.

The Charles Gard case broke my heart. The story was an emotional one to follow. But, I also feel a revived sense of appreciation for the humanities in patient care.

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Sonal Kumar

Sonal Kumar is passionate about combining science and storytelling. She has vast experiences outside of healthcare including marketing and advertising, print and broadcast journalism, including TV/radio production. Sonal is an alumna of Columbia University. She tweets @sonalkumar2011.