The short life of Charlie Gard

The short life of Charlie Gard seems now to be coming to an end. His parents have conceded that their son can spend his final days and hours in a hospice and not, as they wished at home, although the details remain to be decided.

The case revolved around a battle of Charlie’s ‘best interests’.

His parents were adamant that he should have access to experimental treatment in the United States and local doctors had decided that this would result in more harm than good for the child. The courts agreed with the doctors and the family were prevented from travelling abroad.

The case stimulated a media frenzy with input from a pope, a president, a US-based physician and any number of lawyers and ethicists. Social media campaigners and seemingly random people became toxic, issuing abuse and death threats to staff at Great Ormond Street hospital who were caring for Charlie.

Any number of ethical concepts were bandied around with a degree of ethical certainty – on both sides – that was disturbing. There was reference to quality of life, to sanctity of life, to dignity, weighing benefits and harms, to fairness and to virtues of courage, hope and compassion.

It is heartening that ethics has now moved into the mainstream rather than, as is more usual, being considered an optional extra. It is heartening that the public had sympathy with Charlie’s parents. There was, however, too little appreciation of the perspectives of the healthcare team behind the scenes.

A silent team bound by principles of healthcare ethics with an imperative to ‘cure sometimes, treat often, care always and abandon never.’

Not all patients can be cured and not all treatments work, however, all patients should expect compassionate care and non-abandonment no matter what their circumstances. Every day, across the UK, patients, families and healthcare teams are involved in ethical decision-making about treatment and care. The aim of consensus can usually be achieved and the aspiration to care and not to abandon is prioritised.

In Charlie’s case things went wrong and it is, as yet, not clear why.

Given the experience and expertise of the Great Ormond Street hospital team, it seems likely that there would have been open communication about Charlie’s diagnosis and prognosis. It seems likely that there would have been honesty about areas of uncertainty and a willingness to seek additional clinical expertise where appropriate. It seems most likely also that there would have been careful and skilful assessments of Charlie’s condition and potential. It seems likely too that there would have been attentiveness to the needs of Charlie and his family as to any other sick child and their family.

There would have been little, if any, previous experience of the acrimony towards members of the team as witnessed in court.

It should also be assumed that within the care team there would have been a good deal of sadness, and perhaps moral distress, that they were unable to do the right thing by Charlie.

The silence of the healthcare team throughout this challenging process was significant and outbalanced by regular and substantial reporting of the parents’ perspective. The parents’ predicament is, indeed, tragic and their love and courage is admirable. But parental love is not the only or even the most important ethical consideration.

It is said that hard cases make bad law. Hard cases, such as that of Charlie Gard, also make bad ethics. We need to distinguish the ‘good ethics’ from the ‘bad ethics’.

The ‘bad ethics’ of international leaders who know little of the complexity of the case and who may be engaging in a one value ethics, perhaps sanctity of life or reputational gain.  The ‘bad ethics’ of social media and other campaigners who considered it ok to abuse professionals engaged in the provision of care for many of our sickest children and their families. The ‘bad ethics’ of people who were blinded by the emotionality of the case and unable to hear the rationale for the decision-making.

A move to ‘good ethics’ invites us to ask: ‘What is our NHS for?’ ‘What are the rights of patients and families?’ and ‘What can we learn from this that better informs our ethics education for professionals?

First, the NHS was not set up to give everyone everything they desire. The NHS Constitution reminds us that the NHS ‘is there to improve our health and wellbeing, supporting us to keep mentally and physically well, to get better when we are ill and, when are cannot fully recover, to stay as well as we can to the end of our lives’. The rights of patients and families include rights to dignity and respect, to be protected, to accept or refuse treatment and to have privacy and information. Nowhere is there a right to everything that might be desired, the treatments that are experimental or, importantly, to treatments likely to cause more harm than good.

In terms of what professional educators and researchers might learn from this complex case? The case of Charlie Gard issues a reminder of the centrality of ethics, law and communication skills on the undergraduate and postgraduate curriculum. There is a reminder also that clinical and ethical decision-making is complex and that there may not always be consensus with patients and families.

Crucially there is a reminder that patients and families may challenge decisions and must be at liberty to do so. A range of professional virtues are required to negotiate such situations. Minimally, open-mindedness, compassion, patience, courage and justice. To engage ethically, to do ‘good ethics’ and to minimise the distress of patients, families and healthcare teams, we must learn as much as possible from the case of Charlie Gard.

To that end, we need to begin constructing this complex story with key learning points and, where possible, have it as the focus of ethics, law and communication workshops. The focus of our work in the International Care Ethics Observatory  is to revalue care work, to develop the ethical competence of practitioners in health and social care and research and implement innovations in ethics education.

For now, our thoughts should be with all involved with this sad case – for Charlie to have a peaceful death, for his parents to have the support and comfort they need and for the healthcare team to be able to deliver the compassionate care that Charlie needs at the end of his short life.