The case of Charlie Gard
Introduction
On 28th July 2017, 11 -month old Charlie Gard died with his parents by his side following a protracted 4 months of court hearings and global media attention. Charlie’s parents had investigated potential treatment options to save Charlie’s life, and had found experimental treatment in America which they felt could help him. They had raised funds to enable them to take Charlie to America for treatment. The courts were then involved in the decision making and against Charlie’s parents’ wishes authorised the withdrawal of life sustaining treatment.
Charlie’s case raises some interesting moral, ethical and legal issues about who should make life and death decisions in the case of a severely disabled child. Peter Singer [1] has argued that it is for the parents to make the decision, unless that decision is manifestly contrary to the best interests of the child. Ultimately, the parents will care for the child if he/she survives. He does not suggest that the wishes of the parents override all other considerations and recognises that healthcare budgets are often limited. He also concedes that where the treatment will cause further suffering with little chance of survival the wishes of the parents should not prevail.
This post considers the case of Charlie Gard and questions how such cases may be approached in an era where the courts are increasingly supportive of autonomous choices of patients but these ethical dilemmas will increase with advances in medicine.
Background
Charlie was born in August 2016, and at first appeared to be a healthy baby. When he was a few weeks old his parents noticed that he did not appear to be holding his head up and he was losing weight. Charlie was admitted to Intensive Care at Great Ormond Street Hospital and a biopsy confirmed that Charlie had an extremely rare condition called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome. (MDDS) The specific genetic form of MDDS that Charlie had had only been reported in 15 cases throughout the world.
By the time of his diagnosis Charlie was unable to breathe without the assistance of a machine, was deaf and his heart liver and kidneys were affected. There was a meeting of the Clinical Ethics Committee at Great Ormond Street Hospital to discuss whether Charlie should have a tracheostomy [2]. The Committee heard evidence from doctors who felt that Charlie’s quality of life was so poor that he should not be subject to long term ventilation. Those treating Charlie felt that there was no cure for his condition, or proven treatment for his form of illness which was severe.
Charlie’s parents had investigated possible treatment options, and had been in contact with a parent in America whose child had received treatment. They wanted the doctors at Great Ormond Street to try ‘Nucleoside therapy’ which had been used in children with different genetic forms of MDDS. Professor Michio Hirano, a neurologist with a particular interest in this area based in America was contacted and he corresponded with the mitochondrial specialist at Great Ormond Street. He advised that there was no direct evidence that the treatment would help Charlie, but there was a theoretical scientific basis for saying it could. Great Ormond Street then started to arrange for Charlie to receive the treatment, but as it was an untested and unlicenced, medicine specific approval was required from the ethics committee.
Charlie’s parents wanted him to receive treatment and started to look at other options. It was estimated that it would cost £1.2 million pounds to treat Charlie in America.
On 30th January his parents started an online appeal to raise funds to treat him. Charlie’s doctors obtained a series of second opinions from specialists in the UK and also a mitochondrial research team in Barcelona with specific expertise in MDDS.
Before the meeting of the ethics committee further tests were performed on Charlie’s brain. An EEG was performed that was thought to demonstrate that Charlie’s brain was severely affected by MDDS. On 13th January doctors at Great Ormond Street met with Charlie’s parents and told them that the trial of nucleoside therapy would not go ahead. They were of the view that by this time treatment was futile and would only prolong Charlie’s suffering.
On 24th February, lawyers for Great Ormond Street Hospital applied to the Family Division of the High Court in England seeking the court’s permission to withdraw the artificial breathing support keeping Charlie alive, provide him with palliative care and not to provide nucleoside treatment. The court heard evidence from the parents and from a number of experts, including Dr Hirano. Charlie had a court-appointed guardian representing his interests.
The decision
On 11 April Justice Nicholas Francis issued his decision after a hearing lasting several days [3] that it was not in Charlie’s best interests for artificial ventilation to be continued, and that it was lawful for the clinicians treating him to provide him with palliative care only.
The court recognised that there is a strong presumption in favour of a course of action which will prolong life but that presumption is not irrebuttable. This vital interest could be outweighed if the pleasures and quality of life are sufficiently small and the pain and suffering, or other burdens of living are sufficiently great. The court concluded that the best interests of the child include more than just medical factors. The views and opinions of the parents were recognised as being important and should be carefully considered. However, it was said that the courts in the UK have not considered parental wishes to be directly relevant to the child’s best interests. “Their own wishes, however understandable in human terms, are wholly irrelevant to consideration of the objective best interests of the child.”
It was the view of the court that it was in Charlie’s best interest to stop life support treatment and not provide nucleoside treatment. The judge said with the heaviest of hearts Great Ormond Street Hospital “may lawfully withdraw all treatment, save for palliative care, to permit Charlie to die with dignity”
The Appeals
In Charlie’s case all possible legal appeals were pursued. On 23rd May the Court of Appeal upheld the original decision of Justice Francis. In the Appeal Court [4] Charlie’s parents sought a positive declaration that they could arrange to transfer Charlie to a clinic in America to receive the therapy. They presented 5 grounds of appeal, three of which the court heard but they were unsuccessful.
It was argued that insufficient consideration had been given to the rights of Charlie and his parents under Articles 2, 5 and 8 of the European Convention on Human Rights. It was suggested that the court may not interfere with a decision by parents exercising parental rights and responsibilities with regard to their child’s medical treatment, save where there is a risk that the parents proposed course of action may cause significant harm. The ‘harm threshold’ is the standard to permit the state to intervene in every day decisions, and applying this principle the question was not which treatment was better. The parents’ wishes should only be overridden if their preferred treatment plan would be harmful to Charlie even if it was not in his best interests [5].
Application was made to the Supreme Court but the court declined permission to appeal in June[6]. On 20th of June the European Court of Human Rights endorsed the approach of the UK courts [7]. There was an argument that Charlie’s right to life had been infringed but this was rejected by the court who were of the view that states must be afforded a margin of appreciation not only on whether to permit the withdrawal of life sustaining treatment, but the detailed arrangements governing such withdrawal.
States must also be permitted to strike a balance between the protection of a patient’s right to life and the protection of their right to respect for private life and personal autonomy. It had also been argued in the European Court that the decision to permit Charlie to travel abroad for treatment deprived him of his liberty which is protected by Article 5 of the European Convention on Human Rights. This argument was rejected by the European Court.
However, there was a further series of hearings before Justice Francis in July [8] and further testimony from Dr Hirano who reviewed Charlie in person by this time. There was then a multidisciplinary meeting and Dr Hirano was part of that assessment and further tests were arranged and at that stage Charlie’s parents had to face the reality that Charlie was by that time beyond the help of even experimental treatment. On 24th July Charlie’s parents withdrew their appeal with the result that treatment was withdrawn [9]
The Law
Article 2 of the Human Rights Act provides a right to life. The UK Courts recognise this right and have traditionally been very cautious about making a decision that would lead to the death of a patient. There is a strong presumption in favour of the course of action that will preserve life [10]. In Wyatt v Portsmouth NHS Trust [11] the Court of Appeal held that the intellectual milestones for a judge in such a case is what is in the child’s best interests. The court must look at the question from the point of view of the child. Whilst there is a strong presumption in favour of a course of action that will prolong life that presumption is not irrebuttable [12].
The courts will make a decision based on what is in the best interests of the child even if the effect is that the child will die [13] and will not order treatment the doctor thinks is not appropriate [14]. The views of the parents are considered but not determinative [15]. Where a court having heard evidence determines that it is not in the best interests of the child to receive treatment parents who do not agree with this assessment are not able to force treatment [16].
Where there are differing medical views on the efficacy of treatment the views of the parents will be relevant [17]. Awareness of those around the child may be of relevance [18]. In An NH Trust v MB [19] the child was suffering from spinal muscular atrophy and was likely to die within the year. Doctors wished to withdraw artificial ventilation. The child had virtually no movement but the parents successfully argued that the child derived pleasure from his relationship with his parents [20].
In Raqeeb v Barts NHS Foundation Trust [21] leave was given to take a child overseas for treatment where experts had been involved in treating similar cases.
The courts recognise the concept of dying with dignity. In Charlie’s case Justice Francis ruled that treatment should be withdrawn to allow Charlie to die with dignity. In Re A (A Child) [22] where the child had been confirmed to be brain dead the court permitted the ventilator to be turned off to allow “dignity in death”. The courts seem to suggest that this concept becomes encapsulated by the idea of a peaceful or good death [23]. There is also the question of suffering. In A Local Health Board v Y (A Child) and Others [24] the question was whether to provide CPR to a 6-month old infant with severe brain damage and the fact that the child would endure great suffering was held to be a relevant factor.
It was said that resource were not an issue in Charlie’s case but in R v Cambridge Health Authority [25] the issue of resources was considered. The medical specialists involved said that their central concern was the child’s best interests and it was not a resource issue.
Courts in America have been reluctant to override parents who wish life-prolonging treatment for their child.
Conclusion
In our hospitals in the overwhelming majority of cases parents and the healthcare team do come to a shared decision about what is best for a child in this situation. These are difficult and agonising decisions for all those involved. The case of Charlie Gard has been said to represent a paradigm case of contemporary medical/family disagreement about treatment. What developed was a prolonged, bitter and painful dispute played out in the media with intervention by the President of the United States and the Pope. Whilst the legal issues were being considered by the courts there was a parallel trial by the media and public opinion.
Some health professionals consider that where a patient does not agree with their view that this is in some way a rejection of their expertise. Charlie’s parents did not disagree with the medical team that the quality of life he had at that time was not acceptable, but their hope was to change that with treatment. The question raised was who was the best person to determine what was in a child’s best interest in these circumstances.
There were also some interesting comments made by the court in the hope that “some lessons can therefore be taken from this tragic case”. Charlie’s case had attracted a lot of press and other attention and some of the staff at the hospital were subjected to serious threats and abuse, and the court noted that this should be condemned [26].
The issue of funding in such circumstances was rightly highlighted. The team who represented the parents worked on a pro bono basis, whilst the Trust had the benefit of a full legal team. It was noted by the court that there are many parents in a similar situation who may not have been able to gain the services of a legal team who were prepared to act on a pro bono basis. It was felt that it could not have been the intention of Parliament when it changed the law in relation to legal aid to leave parents in this situation without access to legal aid or representation in defending an application for a court declaration to turn off their child’s life support machine [27] It seems clear that parents should have funding to enable them to instruct a legal team and fully engage in this process.
The court also noted that mediation should be attempted in all such cases, even if all that it achieved is a greater understanding by the parties of each other’s positions. It was said that few users of the court system will be in greater turmoil and grief than Charlie’s parents and it was felt that anything which helped them to understand the process and the viewpoint of the other side, even if they profoundly disagree with it, would be of benefit [28].
There is a temptation to seek consensus of view about this case when in reality it is unlikely that consensus can ever be achieved. Is the question whether there is genuinely reasonable dissensus about treatment? What is important is that we should talk about these important issues and share our differing views.
Analysis of the decision provides an important opportunity to consider the way in which our courts and medical profession respond to these situations. We need to consider how families in this situation are treated. There is also a need for sensitive and rational debates within our society on how to respond to these disagreements. Given advances in science, and the ability to seek out treatments in other countries this is likely to be something that will occur more frequently in the future.
[i] Wilkinson D, Savulescu, J. Ethics, Conflict and Medical Treatment for Children ( Peter Singer)
[ii] This is a procedure whereby a hole is created in the front of the neck to enable a breathing tube to be passed directly into the trachea rather than through the nose or mouth.
[iii] [2017] EWHC 972 (Fam)
[iv] Yates & Another v Great Ormond Street Hospital for Children NHS Foundation Trust & Anor [2017] EWCA Civ 410
[v] Re King [2014] EWHC 2964 (Fam) was presented as the only authority for this distinction
[vi] [2017] EWCA Civ 410
[vii] Gard v UK (2017) 65 H.E.R.R SE9
[viii] [2017] 4 WLR 131
[ix] [2017] 4 WLR 131
[x] Re C (baby: withdrawal of medical treatment) [2015] EWHC 2920 (Fam)
[xi] [2000] 1 F.L.R. 554
[xii] [2000] 1 F.L.R. 554, [38]
[xiii] The Charlotte Wyatt Litigation [2005] EWHC 2293; Re Winston-Jones (A Child) [2004] All ER (D) 313; Re K [2006] EWHC 1007 (Fam)
[xiv] Great Ormond Street Hospital for Children NHS Foundation Trust v NO [2017] EWHC 241 (Fam)
[xv] Re Jake (a child) (withholding of medical treatment) [2015] EWHC 2442
[xvi] An NHS Trust v W [2015] EWHC 2778 (Fam); Great Ormond Street Hospital for Children NHS Foundation Trust v NO [2017] EWHC 241 (Fam); Re C [1998] Lloyd’s Rep Med 1
[xvii] Great Ormond Street Hospital for Children NHS Foundation Trust v NO [2017] EWHC 241 (Fam)
[xviii] NHS Trust v Baby X [2012] EWHC 2188 (Fam)
[xix] [2006] EWHC 507 (Fam)
[xx] [28]
[xxi] [2019] EWHC 2530 (Fam)
[xxii] [2015] EWHC 443 (Fam) para 26
[xxiii] Kings College Hospital NHS Foundation Trust and MH [2015] EWHC 1920 (Fam)
[xxiv] [2016] EWHC 206 (Fam)
[xxv] [1995] EWCA Civ 49
[xxvi] [2017] 4 W.L.R. 131 para 16
[xxvii] [2017] 4 W.L.R. 131 para 17
[xxviii] [2017] 4 W.L.R. 131 para 20