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The Irish Hospice Foundation Strategic Plan 2016-2019 reminds us that 57 per cent of people in Ireland say there is insufficient discussion about death and dying. I agree… or rather, that’s what I would have said, had I not taken another look at the front cover of the Strategic Plan, which includes a photograph of two women standing in front of a poster with the caption: ‘Think Ahead: Speak for Yourself’. This prompted the thought: What about those who are neither able to think ahead nor speak for themselves? And I remembered the case of Charlie Gard.
Born in August 2016, Charlie was admitted to London’s Great Ormond Street Hospital (GOSH), where he was diagnosed with the rare infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome. Charlie was deaf, paralysed, needed ventilatory support and had a poor prognosis. In January 2017, Charlie’s parents identified an experimental nucleoside treatment in the US and launched a fund-raising effort.
But when the infant developed seizures, GOSH doctors objected to what they considered futile treatment; they applied to the High Court for permission to withdraw life support. This was granted and subsequently upheld, with a ruling in June 2017 from the European Court of Human Rights exhausting all legal options. The GOSH team made plans to withdraw medical treatment.
Which brings me to the point about whether there is enough discussion about death and dying. In the case of Charlie Gard, there seemed to be discussion aplenty, if only to the extent that here was an opportunity for the public at large to deploy social media to offer anyone who cared to read or listen the benefit of their insights. Unfortunately, these insights were gleaned largely from a clamouring press whose support for Charlie receiving treatment in the US, I suggest, was based more on emotional rabble-rousing than a dispassionate consideration of the issues involved. Some of the roused rabble even threatened medical staff at GOSH.
Apparently unable to resist throwing themselves into the media maelstrom too were the Pope and the President of the US. As far as Trump is concerned, I’ll opt for Wittgenstein’s ‘Whereof one cannot speak, thereof one must be silent’ and leave it at that. The Pope — as Patrick Greenford reported in The Guardian (3 July 2017) — prayed that Charlie’s parents’ “wish to accompany and treat their child until the end isn’t neglected”. Yet following the infant’s death on 28 July 2017, Elise Harris, writing in Catholic Online (17 November 2017, http://www.catholic.org/news/hf/faith/story.php?id=76383) quoted the Pope as stressing that medical options “must avoid the temptation either to euthanise a patient or to pursue disproportionate treatments which do not serve the integral good of the person” (my emphasis).
So would it have been better to allow Charlie travel to the US for treatment as a last resort? I don’t know. And even when Wilkinson and Savulescu considered ‘Hard lessons: Learning from the Charlie Gard case’ in the Journal of Medical Ethics (published online 2 August, 2017) they conceded that they disagreed with each other about what the right course of action ought to have been. They did agree, however, on the importance of considering whether we should have lower thresholds for undertaking experimental treatments when no other option exists; how limited resources should be allocated; and whether resolution of treatment disputes can be achieved without legal recourse.
Ethical decisions are based on facts and values, and while few would dispute the facts of a case, values pose a trickier challenge. For example, when Sprung et al, writing in Intensive Care Medicine (2007, 33: 1,732-39), considered ‘The importance of religious affiliation and culture on end-of-life decisions in European intensive care units’ among patients, doctors and families, they concluded: “Significant differences associated with religious affiliation and culture were observed for the type of end-of-life decision, the times to therapy limitation and death, and discussion of decisions with patient families.”
The notion that ethics is intelligible only in the context of religion is risible, foolishly recruiting false reasoning to the interpretation of divine commands. A fully-rounded, ethically-based set of precepts cannot be usefully and uniformly applied to the same situation by individuals motivated by different values. Perhaps, as Wilkinson et al argue in Bioethics (2016, 30: 109-118), we should be — as the title of their paper asserts — “in favour of medical dissensus: Why we should agree to disagree about end-of-life decisions”.
Agreeing to disagree doesn’t alleviate the stress of wrestling with dilemmas such as those posed by the Charlie Gard case, but perhaps we can feel our way by disputation and discussion towards something approaching resolution. But prolonged reasoning is ridiculed today. Our screen-based zeitgeist dictates that mass values determine what passes for discussion, with 280 characters deemed sufficient for a point to be made. Our coarsened, consumption-obsessed society is neither an educated nor a moral one, despite having facts — literally — at our fingertips. Perhaps Eliot anticipated this when he asked in The Rock (1934): “Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?”