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"Attending open days and starting volunteering really were the steps that put the wheels in motion on my journey into Midwifery, and made me decide it was for me."
Ann Gallagher, Professor of Ethics and Care
The short life of Charlie Gard is now coming to an end. It has been agreed that he will be moved today to spend his final hours in a hospice and not, as his parents wished, at home.
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, an American 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 an American physician who offered false hope and who may have had a financial interest in the case. 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’ (https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england) . 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, to 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 they are expert at, undistracted by the discourse of ‘bad ethics’.
Professor Ann Gallagher spoke to Kay Burley from Sky News on Thursday 27th July 2017.
Ann Gallagher, Professor of Ethics and Care
The parents of baby Charlie Gard recently lost their appeal at the European Counts. The judges ruled that further treatment would cause harm to Charlie and that life support could be discontinued. Today they are going back to court as new evidence about possible experimental treatment is to be considered.
The case has now attracted international and political attention with both the Pope and President of the US expressing support for the parents including treatment and care in the US and Italy (see http://www.bbc.co.uk/news/uk-england-london-40503842 ). Foreign Secretary Boris Johnson has taken a stand and asserted that it is “right that decisions continued to be led by expert medical opinion, supported by the courts”, in line with Charlie’s “best interests.”
So should non-UK politicians and religious leaders get involved in contentious medical cases? And how much weight should be given to international interventions which intend to override local decisions based on medical ethics and European law?
We might understand how and why powerful people would feel inclined to intervene from afar. The case is very emotive and it may seem that the interests of a vulnerable infant and his parents have not been well considered. Distant leaders may feel they have insights that those involved do not have. They may feel that such an intervention is in keeping with – or may enhance – their ethical reputation. Efforts to save the life of a sick child are understandable and generally praiseworthy, however, it is neither helpful or ethical for those distant to this individual case to attempt to override what has been a lengthy and considered decision-making process.
We all understand loving parents wishing to keep their baby alive. However, parental love is not the only ethical consideration and parents may be blind to, or in denial about, other elements. If there is sufficient certainty, which a substantial body of medical and legal opinion confirm, that further treatment would be harmful then this should not occur. If travel and further intervention has the potential to cause Charlie additional suffering from which he would not benefit, then this is unethical. If offers from afar result in false hope being given to parents then this is also problematic. Charlie’s parents will, it seems likely, have to endure Charlie’s end of life later rather than sooner and without the support, expertise and experience of a healthcare team who have been involved with the family 24/7 for a significant time.
The Intervention of Boris Johnson was, in my view, appropriate and correct. The main focus is on Charlie’s best interests which is as it should be – Charlie cannot speak for himself and should not suffer. He requires, and has had, medical and legal advocates who are concerned that he should not be subjected to treatment that is more harmful than helpful. The prolongation or sanctity of life argument is, in this case, weak as compared with arguments relating to quality of life.
However…what is most pressing, from an ethical point of view, is that new evidence is weighed carefully and regardless of the outcome of the court decision today, care will continue before and beyond life support. Care must be directed towards the family as a whole. Should the discontinuation of life support go ahead, neither Charlie nor the family should feel abandoned. This is a very challenging situation and ethical sensitivity is necessary to ensure that there will be appropriate and sufficient support to ensure a good death for Charlie and to enable the family to endure what will be a significant loss.
Attention needs also be paid to the experience of the healthcare team caring for Charlie and his family. Members of the team may feel conflicted or distressed by the case and it is hoped that they will avail of support from the hospital’s ethics advisory and other services. Without exception, members of the team will require courage, compassion and wisdom to help the family and colleagues negotiate an ethically fraught situation and very very tragic situation. They can also draw on a range of ethics-related resources to help them think through this and similarly challenging cases, for example, the Nuffield Council on Bioethics report (see https://nuffieldbioethics.org/wp-content/uploads/2014/07/CCD-web-version-22-June-07-updated.pdf ) on the ethics of neonatal care and also articles in journals such as Nursing Ethics (see http://journals.sagepub.com/home/nej) and the Journal of Medical Ethics (see http://jme.bmj.com/).
It seems appropriate to bear in mind – in this and other such cases – what I consider the core of care ethics: cure sometimes, treat often, care always and abandon never.
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