Burke and Wills, Bowen and Gard: The English Courts, Best Interests and Justice

The Case of Donald Wills

Donald Wills is a self-made man. He is billionaire British banker who has taken an interest in technology. He believes the Singularity is near and wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.

Donald develops a rare condition where the mitochondria in all his cells stop working. The mitochondria are power packs for every cell. Donald’s muscles stop working and he is admitted to a famous London hospital and has to be put on a breathing machine. His brain is affected- he suffers fits which need to be controlled by medication. There is no known cure and he is going downhill.

Doctors call in his wife and explain his dismal prognosis. “It is,” they say, “in his best interests to stop this burdensome treatment in intensive care. He will never regain normal brain function but he is conscious at times and feels pain. He should be allowed to die with dignity.” After all, Donald is 75.

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Video Series: Peter Singer on the Pros and Cons of Defending Controversial Views

Peter Singer has probably done more good than many of us will ever do. Despite this, he has received threats, people have protested to stop him from lecturing, his views have been compared to those defended by Nazis, etc. How has this affected him? Should we ever refrain from defending controversial views? Is it okay if academics avoid working on controversial topics because they’re worried about their reputation or job prospects? Should academics be able to publish their controversial ideas anonymously? Should we engage in a calm and rational way with just any view? Where do we draw the line? These are some of the questions I asked Peter Singer.

Video Series: Professor Julian Savulescu argues in favour of an experimental treatment for Charlie Gard

How Social Media Distorts Our Perceptions of Groups.

We know that groups are internally diverse. For any group you care to pick out (Brexit supporters, feminists, tea drinkers), we know intellectually that they will disagree among themselves about a great deal. When people identify as a group member, they may feel pressure to conform to the group view, but there are countervailing pressures in the other direction which limit the effects of group conformity. Disputes internal to groups are often as – or more – heated than those between them. Continue reading

Revised Press Statement: Gard Legal Decision Questionable on Secular Ethical Grounds

Julian Savulescu and Peter Singer

Charlie Gard should have been allowed to go to US for experimental treatment back in April (or better January when it was first considered) because there was some possibility of him having a life worth living after treatment. That possibility may have been slim, but it does not appear (to us) to have been zero. The rational strategy was to give a trial of treatment, say 3 months, and agree with family to withdraw ventilation if there was no improvement. If this had been done, we would now have some information on whether there is any prospect of improvement..

The critical quote in the judgment of Justice Francis in the High Court back in April is from the independent US expert in nucleoside replacement therapy, Dr I:

“He said that he thought that the treatment, if administered, was unlikely to be of any benefit to Charlie’s brain. He described the probability as low, but not zero.”

Dr I said that if Charlie were his patient, he would push for a trial of treatment.

Is 3 months of suffering associated with intensive care worth taking for, say, a 1/10 000 of improvement? This is a value judgement about which there is reasonable disagreement. Sadly, Charlie has experienced the pains and discomforts of intensive care for more than six months, now without any treatment with any prospect of improving his condition.

The state should not have to pay for expensive experimental treatment with low prospect of success but Charlie’s parents have raised the funds. Charlie should have been allowed to go straight away (and saved hundreds of thousands of pounds of scarce British taxpayer funds which have been used to provide months of intensive care) provided a reasonable physician would treat him in the US. Dr I appeared to be a reasonable and responsible physician.

This is not a religious or right to life argument, or an argument based on compassion. It’s a secular ethical argument about the extreme complexity of judging someone’s life to be not worth living, or judging the prospects of having a life worth living to be not worth taking. The courts have deferred to one group of doctors who are experts in the facts, but they are not experts in the ethics.

More than six months have passed since experimental therapy was first considered. We don’t know how bad Charlie’s brain damage is now. Whether experimental therapy is still warranted depends on whether there remains any prospect of any meaningful life, and how that should be balanced against further intensive care. Perhaps the moment has passed.

Professor Julian Savulescu
Uehiro Chair in Practical Ethics
University of Oxford

Visiting Professorial Fellow
Murdoch Childrens Research Institute

Peter Singer, AC
Ira W. DeCamp Professor of Bioethics
University Center for Human Values
Princeton University
&
Laureate Professor, 
School of Historical and Philosophical Studies,
University of Melbourne

Charlie Gard Bibliography

Article
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31204-7/abstract

Blogs

Debate: The Fiction of an Interest in Death? Justice for Charlie Gard

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early

The sad case of Charlie Gard and the rights *and wrongs* of experimental treatment

By Dominic Wilkinson @Neonatalethics

 

In a blog post published yesterday, Julian Savulescu argues that Charlie Gard should have received the experimental treatment requested by his parents 6 months ago. He further argues that “we should be more aggressive about trials of therapy where there are no other good options”.

I have previously argued (in a blog and in an editorial in the Lancet) that the requested treatment is not in Charlie’s best interests. In a forthcoming paper (co-authored with John Paris, Jag Ahluwahlia, Brian Cummings and Michael Moreland), we compare the US and UK legal approaches to cases like this, and argue that the US approach is deeply flawed.

Here are four areas where I agree with Julian

  1. In retrospect, it would have been better for Charlie to have received the requested treatment 6 months ago than to have a protracted legal dispute (with continued treatment in intensive care anyway)
  2. We should generally allow patients who are dying or severely ill, without other available treatment, to try experimental treatment if that is something that they (or their family) strongly desire
  3. If experimental treatments are unaffordable in public health systems but patients are able to pay for them privately, or have crowd-sourced funding for them, they should be made available
  4. Experimental treatments should not be provided where the side effects make that treatment highly likely not to be in the patient’s interests.

However, despite these areas of common ground, I reach starkly different conclusions from Julian. In my view, the doctors were right to oppose experimental treatment for Charlie in January, the judges were right to decline the family’s request for treatment in April, and it would be deeply ethically problematic to provide the treatment now, notwithstanding the recent intervention of the US president and the Pope. Continue reading

The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early

The tragic case of Charlie Gard has captured the imagination of social media, the Pope and President Trump. All of Charlie’s legal options appear to have been exhausted so, despite the tsunami of opinion, it looks like treatment will be withdrawn, barring some act of God or other authority.

I argued back in April  and then in May that it would be reasonable to give Charlie a trial of experimental treatment for a fixed period, say 6 months. The treatment was not going to make him worse and there was a non-zero possibility of some improvement. At the end of 6 months, his progress could have been reviewed and a decision then made to withdraw treatment if no significant progress had been made. I argued that we can’t be certain that his life is not worth living and we can’t be certain treatment will lead to zero improvement. I argued that the costs – 6 months of sedation and analgesia, with limited amounts of suffering associated with medical procedures, was arguably worth taking. That course was not taken.

Worst of All Possible Worlds

Charlie was born in September 2016. He was admitted to hospital in October. By January 2017, his mother had identified an experimental treatment (nucleoside replacement therapy) available in the US.

By April 2017, the Gards had crowd-sourced £1.2million to take Charlie to the US for experimental therapy. However, a judge ruled life is not in his best interests. He must die. Numerous appeals were lodged, and lost, all the way up to the European Court of Human Rights. Now the Pope and President Trump have weighed in.

It is now over 6 months since Connie Yates , Charlie’s mother, identified and petitioned for an experimental treatment. During the whole of that time, Charlie has been ventilated in intensive care, receiving no therapy offering any prospect of improvement. If treatment had been started back in January, immediately, we would now have evidence presentable to the family, courts, media and doctors of whether it was yielding any improvement, or not.

Unless the treatment itself would have serious side-effects, or was expensive, there is no downside to it being provided, especially when Charlie is being kept alive anyway. Since the parents had raised funds to provide it themselves, there is no justice or resource allocation issue.

Not providing the experimental treatment at the outset is the very worst situation for everyone:

  1. Charlie has been kept alive since January, suffering the alleged harms of intensive care, without receiving an intervention that might lead to an improvement.
  2. His parents have had to watch their child being kept alive, without receiving the treatment they hope will have some effect.
  3. Doctors have had to keep alive a child for 6 months whom they believe is suffering and should die with dignity.
  4. Courts and the family have been denied real time real life information about whether the intervention does have any effect. They have been forced to make non-evidence based decisions.

The reasonable course of action, given the time taken by the court process, would have been to immediately start nucleoside replacement therapy at the parents’ cost (if justice precludes stricken NHS funds being used for it), while petitions to court were made to withdraw active treatment. That would have meant we would have more information about what 6 months of therapy might be able to achieve, and Charlie would have been given his fair go. It would be a better position to be in for all concerned.

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Targeted Killing and Black Boxes

Written By Mitt Regan and Michael Robillard

            Various aspects of the US targeted killing program have attracted considerable attention and some criticism in philosophy and international law. One important aspect of the program that deserves more attention is how targeted killing reflects how the growing number of conflicts involving non-state actors are eroding conventions regarding the use of violence.  Those conventions are based on the paradigm of conflict between states waged by uniformed armed forces on segregated battlefields.  In such conflicts, an individual’s status as a member of the armed forces makes him/her liable to lethal force without examining his/her specific conduct.  Non-state actors, however, do not wear uniforms and seek to be indistinguishable from civilians.  What, then, should be the basis for their liability? Continue reading

The non-identity problem of professional philosophers

By Charles Foster

Philosophers have a non-identity problem. It is that they are not identified as relevant by the courts. This, in an age where funding and preferment are often linked to engagement with the non-academic world, is a worry.

This irrelevance was brutally demonstrated in an English Court of Appeal case,  (‘the CICA case’) the facts of which were a tragic illustration of the non-identity problem. Continue reading

Using AI to Predict Criminal Offending: What Makes it ‘Accurate’, and What Makes it ‘Ethical’.

Jonathan Pugh

Tom Douglas

 

The Durham Police force plans to use an artificial intelligence system to inform decisions about whether or not to keep a suspect in custody.

Developed using data collected by the force, The Harm Assessment Risk Tool (HART) has already undergone a 2 year trial period to monitor the accuracy of the tool. Over the trial period, predictions of low risk were accurate 98% of the time, whilst predictions of high risk were accurate 88% of the time, according to media reports. Whilst HART has not so far been used to inform custody sergeants’ decisions during this trial period, the police force now plans to take the system live.

Given the high stakes involved in the criminal justice system, and the way in which artificial intelligence is beginning to surpass human decision-making capabilities in a wide array of contexts, it is unsurprising that criminal justice authorities have sought to harness AI. However, the use of algorithmic decision-making in this context also raises ethical issues. In particular, some have been concerned about the potentially discriminatory nature of the algorithms employed by criminal justice authorities.

These issues are not new. In the past, offender risk assessment often relied heavily on psychiatrists’ judgements. However, partly due to concerns about inconsistency and poor accuracy, criminal justice authorities now already use algorithmic risk assessment tools. Based on studies of past offenders, these tools use forensic history, mental health diagnoses, demographic variables and other factors to produce a statistical assessment of re-offending risk.

Beyond concerns about discrimination, algorithmic risk assessment tools raise a wide range of ethical questions, as we have discussed with colleagues in the linked paper. Here we address one that it is particularly apposite with respect to HART: how should we balance the conflicting moral values at stake in deciding the kind of accuracy we want such tools to prioritise?

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