The Charlie Gard Case – Lessons to be Learnt

Background

For those of you that have not been following the case of Charlie Gard, Charlie was a baby, who was born with a very rare disease. The rare disease came to light about four weeks after his birth because he was not thriving. He was diagnosed with Mitochondrial DNA Depletion Syndrome.  His condition was so rare that there have only been about 16 other cases.

He remained at Great Ormond Street from about 4 weeks of age, until shortly before his death in a hospice.  The Hospital refused to allow him to be transferred to the US for an experimental approach being developed by an expert physician scientist called Dr. Hirano in NY.

The hospital refused to allow Charlie to be transferred to the US despite the raising of the needed money to allow this transfer. Then ensued a long court battle over who should have the final say over what would happen to Charlie Gard, the Hospital (i.e. the authorities), or his parents.  The case went to local and high courts.

The parents were supported by highly qualified lawyers, called Queen’s Counsels (QCs). These were pitted against the Queen’s Counsels hired by the hospital. After a long and grueling court battle going all the way to the UK Supreme Court and the European Court of Justice, the parents were refused their request to be allowed to take Charlie to the US to be given the experimental drug developed by Dr. Hirano.  Why?  Because the hospital were adamant that it would not help Charlie.

Eventually, at the end of the line, Dr. Hirano flew to the hospital and examined Charlie.  By this time many months had passed, and it was determined even by Dr. Hirano that the window of opportunity had passed to help Charlie. Then followed a relatively protracted court procedure to determine where Charlie should die – in the hospital or at home. The hospital would not allow him to go home because they stated that he needed intensive care support. When intensive care nurses and doctors offered to provide support, the hospital argued that the ventilator could not fit through the door of the home.

The final decision was that he could be taken to a hospice and the life support would be turned off there shortly after he arrived. Even here, the parents’ desire to spend a few days with him,  before the life support would be withdrawn, was not granted.   He died today 28th July, in a hospice shortly after he was transported there by the Great Ormond Street Hospital.  His parents were not granted their wish of being able to spend some time with him on life support, saying Good Bye.

Lessons to be Learnt

The Great Ormond Street Hospital argued that there are many lessons to be learnt from the Charlie Gard case. Apparently, the hospital plans to learn these lessons.  What are the lessons that the hospital could learn?  What can other hospitals learn from this case?

1. This case has been a public relations disaster for Great Ormond Street Hospital. This case made the hospital appear uncaring, cold, and distant. It even appeared out of touch with the latest research ongoing in other parts of the world into rare diseases. Clearly there are no winners from this case (except perhaps the lawyers).  Time will tell what damage has been done to the reputation of this British Institution.
2. The parents should never have been forced to take legal action to exert their rights as parents.  Surely a way could have been found to work with Dr. Hirano at the earliest opportunity to allow the administration of the experimental approach?  Clinical trials of experimental medicines take place all the time, and to dismiss what appeared to be the only chance for this child raises questions. Dr. Hirano apparently even offered to provide the experimental approach with instructions. Transporting Charlie to the US would have been challenging, and probably unnecessary, but finding a way to administer the experimental approach in the UK, could have, and should have been found.
3. It is wrong for any hospital to use its vast resources, some of which are donated by well-wishers, to obstruct the will of well meaning and intelligent parents. When the parents are caring, intelligent and functional, it is inappropriate for the hospital caring for their very sick child to put unnecessary obstacles in their way, every step of the way, even at the very end, refusing their wish to spend time with their dying child.
4. Insisting that Charlie die in the way that the hospital mandated was cruel.     He was not an animal that was being put down. He had two loving parents, and simply withdrawing his life support without the opportunity for his parents to tell him how much they loved him was unwarranted.  Quite frankly, we treat animals that are being put down better than this.
5. It would not have been a sign of weakness for the hospital to acknowledge that the hospital did not have all the expertise necessary to treat this child that had an extremely rare disease.  They should have found a way to work with Dr. Hirano from the earliest opportunity.
6. To excoriate the renowned physician in public, is highly unprofessional, and demonstrates the sheer arrogance that has been evident throughout this case on the part of the hospital.
7. Hiring expensive lawyers to fight against parents, rather than working with the parents to find solutions, is deeply troubling. The legal procedures took the parents away from spending time with their child, at a time when they were most needed by their child.
8. To release information about the case to build public support (presumably without the parents’ consent) was not appropriate. Ultimately because the hospital had treated Charlie for some months, there was a presumption in the public domain that the hospital must be right in the case.

The Charlie Gard case showed us what can happen to ordinary parents with a child that has a disease for which there is no treatment. Ultimately, after spending huge amounts of time and resources to save their child’s life, their baby was given the sentence of death because the hospital felt that death was better than life with whatever palliative and symptom-alleviating treatment was available.   No amount of tears,  anguish and pleads from the parents could change this decision and stance of the hospital.

The hospital has many lessons to be learnt. In order that the lessons can be learnt, a change of management should immediately take place at the top of the institution. This situation will arise again, and I certainly hope we will not see a repeat of the heartbreaking events of the last few weeks and months.