Charlie Gard is a ten month old little boy who was diagnosed with a very rare condition called mitochondrial depletion syndrome shortly after his birth. Mitochondrial depletion syndrome is a progressive neurological disease, there are only sixteen other patients diagnosed with it worldwide. It is a terminal condition.Two months after Charlies birth he was admitted to Great Ormond Street Hospital in London and he remains there now whilst the world debates his fate. Charlie is on a ventilator, with a feeding tube and suffers frequent and severe seizures. He has been diagnosed with severe encephalopathy and is unable to interact with the world on any level.
The care of Charlie has become a cause celebre in Britain as conflict has arisen between his treating team and Charlies parents. As often happens in cases of Bioethical conflict, two competing “camps” or aims has arisen. The case has gone as far as the European Court of Human Rights with Charlie’s parents wanting the right to take Charlie to the United States to pursue a treatment viewed as futile by his UK treating team and the courts. Dr Robert D Troug, a well-known Paediatric Intensive Care specialist and Director of the Centre for Bioethics at Harvard Medical school stated this week that the “tragedy is that the child is dying and there is nothing that can be done about it, for the parents this is the worst thing in life.” The parents want permission to take their son to the states to obtain this experimental treatment that has not been tested on humans and the courts have ruled it is not in the child’s best interests. The family have raised over 1.2 Million pounds to pay for the transport and treatment in the states.
The parents of Charlie have been fighting for their son since the diagnoses was received. They want things for their son that their son will never receive. Simple things, like for him to sleep in his own bed. These parents appear exhausted but defiant, fragile but strong. The mother has long blonde hair with a flower in her hair. The argument is about whose needs are being met. Whose interests are at stake or can be met. Charlies or the parents. Obviously the parents are in denial, we often use denial to help us cope with things that are just too awful to contemplate. Charlie is ten months old, on a ventilator, receiving sedation and unable to advocate for himself. His parents are young, vulnerable and incredibly brave. Unfortunately the news of this case has allowed people like the Pope and Donald Trump to weigh in on the debate and feed the parents denial instead of allowing them to face the inevitable and give their little boy the best death possible.
Societal circumstances have complicated this case, the internet has allowed the parents to research and find this untested and untrialled treatment. The Neurologist who offered them some hope has later admitted the treatment would be unlikely to succeed has a lot to answer for. A system that will take a vulnerable families money because it can is unethical. (The US system is happy to provide futile care to those who gladly pay for it as part of the denial.)
Often we provide futile care to patients to meet a particular short term need or goal, we will often keep a patient on a ventilator for an extra day or so to allow family or friends to say goodbye or to come to terms with the inevitable. In Australia we would not do this for any longer than a day or so. There are two aspects of this case to consider, would it hurt Charlie to let him go to the States for this treatment. He is going to die anyway, he won’t know anything about the trip or the treatment. If it helps his parents come to terms with the inevitable, is it the right thing to do? Even if it is not in Charlies best interests. Keeping in mind Charlies treating team have already stated it’s in his best interests to allow palliative care only. The courts have ruled that Charlie should not go. I’ve thought a lot about this case and some other similar cases lately and the unrealistic expectations we place on the terminally ill. We call them fighters and troopers and we want bucket lists fulfilled with unrealistic expectations before they die. We state they are going to change the world and give them hope for the unattainable. These are our needs and not theirs. Mostly people just want companionship and comfort, they don’t want anything else and little Charlie Gard probably just wants to be taken off his ventilator, have all of his tubes removed and be cuddled by his parents until he passes away.
The thoughts of this blog are of the individual writer and not necessarily those of the Nurses for Nurses Network. To read our full disclaimer click here >>
The Nurses for Nurses Network provides great information and CPD in a range of easy learning ways on the latest information that Nurses need to know – remember the Nurses for Nurses Network was created by Australian Nurses for Nurses. www.nursesfornurses.com.au