MemoTo:
HCAD 650 9040 Group 1 and Group 2
From:
HCAD 650 9040 Group 3
Date:
October 11, 2022
RE:
Question Sheet – Ch. 12 Baby Charlie and End-Of-Life Decisions Case Study
Case Summary:
Baby Charlie was born in London, England, on August 4, 2016, and seemed to be a healthy
baby; but on October 11 he was admitted to Great Ormond Street Hospital in London due to him
failing to gain weight, lift his head, or support himself as normal.
At the hospital he was diagnosed with mitochondrial DNA depletion syndrome, a rare fatal
genetic condition, that left him on life support with irreversible brain damage for months. Soon
baby Charlie showed no brain response, reaction to pain or pleasure, or crying; the medical
team was unaware if he was awake, or asleep and he was having many seizures, leading the
medical team at Great Ormond Street Hospital to determine that further treatment was futile and
palliative care should be pursued. Charlies’ parents didn’t agree and wanted further treatment
causing a legal battle to ensue in the British courts which then moved to the Europe Court of
Human Rights. The European court backed the hospital’s opinion because experts stated
Charlie could be suffering (Perry, 2020).
Charlie’s parents wanted him to have an experimental treatment known as nucleoside therapy
even though it had never been used on anyone with Charlie’s diagnosis or condition;
The parents had spoken to Dr. Michio Hirano, a neurologist at Columbia University Medical
Center in New York, who stated that theoretically the treatment could work for Charlie but
indicated that the severe brain involvement was a contraindication to the use of the therapy.
Before the hospital’s ethics committee could meet to discuss the case, Baby Charlie’s condition
worsened, and the treatment no longer became a viable option and would only prolong
suffering.
The parents wanted to take Baby Charlie to the United States for treatment but needed money,
prompting them to go to social media about the case, and raised over $1.6 million. This led to
more debate as the hospital stated that funding was not the issue and that the US and the UK
have differences in philosophy so the US would attempt any medical treatment as long as
funding was available. The judge and court agreed that the treatment was not an option and
sighted Dr. Hirano’s opinion wasn’t valid as he never examined Baby Charlie in person and
ruled for palliative treatment. The parents got Dr. Hirano to travel to them to examine Charlie in
person, and he also determined the treatment was no longer a viable option. This led the
parents to determine that the hospital prolonged the process, making the option no longer
viable. The parents then argued that they wanted to take the baby home to die with them, the
hospital fought that stating it was too risky, and Baby Charlie died while the argument ensued.
Baby Charlie spent the majority of his life on life support. His case became a trending topic on
social media with critics and fans on both sides (Perry, 2020).
Perry, F. (2020). The tracks we leave: Ethics and management dilemmas in healthcare. (3rd
ed.). ACHE Management Series.
Questions for Groups 1 & 2 on Ch. 12 Case Study:
1. Legal: Does the organization’s bio-ethics committee have the authority to override the
parents wishes to provide and or continue palliative care for their terminally-ill child?
2. Financial: What effects could the media publicity from Baby Charlie’s case have on the
financial status at Great Ormond Street Hospital?
3. Hospital (Organization): Does the organization have training on how employees should
respond to the media when dealing with a case? When does the team need to involve
the ethics committee?
4. Reputation: Where did the philosophy of the U.S. attempting any type of medical
treatment as long as funding is available come from, and how can the organization
change that culture?