A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering.
His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.
“It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”
This is a profoundly difficult decision, and one in which all parties are acting out of care and compassion for the child. My comments are of course limited as I do not have access to all the relevant facts. However, it does raise an important question about the current basis of such decisions.
Ethics of Limitation of Life Prolonging Medical Treatment
In general, medicine has a presumption in favour of saving life, or prolonging life. There are three justifications for departing from this default. That is, there are 3 justifications for withholding or withdrawing life prolonging medical treatment:
- the patient autonomously refuses it. (autonomy)
- continued life is no longer in the patient’s interests (best interests)
- the probability of the treatment prolonging life, or the quality of life, or the length of time the patient can surVive are too low to justify the cost of the attempt (distributive justice)
Sometimes treatment is withheld or withdrawn because it is “futile.” Dominic Wilkinson and I have argued that although futility is often said to refer to “best interests”, it is more appropriately interpreted as a justice justification for limitation, that is, criterion 3. The reason we have argued this is that the best interests justification (2), requires that doctors establish that life is no longer worth living. That is, that the person would be better off dead. This is a very difficult standard to establish, even if the concept of a life not worth living is coherent. Justice does not require that we establish where the line of of a life worth living is. It only requires a comparative judgement – that compared to other uses of a limited medical resource, this use is not justified. The NHS has thresholds for cost-effectiveness that it routinely employs. A justice justification for limiting life prolonging medical treatment only requires an extension of this every day approach. For example, a treatment which has a 1/10,000 of prolonging a person’s life is a lower priority than a treatment which has a 50% chance of extending life. We need not say that the first treatment is “futile” or confers no benefit to the patient. We need only say that it is very poor value for money.
Responding to Julian Savulescu
The sad and difficult case of Charlie Gard, which featured in the media last week, is the latest in a series of High Court and Family court cases when parents and doctors have disagreed about medical treatment for a child. Doctors regard the treatment as “futile” or “potentially inappropriate”. Parents, in contrast, want treatment to continue, perhaps in the hope that the child’s condition will improve. In the Charlie Gard case, the judge, Justice Francis, rejected Charlie’s parents’ request for him to travel to the US for an experimental medical treatment. He ruled that life-sustaining treatment could be withdrawn, and Charlie allowed to die.
As Julian Savulescu argues,there are two different ethical reasons for health professionals to refuse to provide requested medical treatment for a child. The first of these is based on concern for the best interests of the patient. Treatment should not be provided if it would harm the child. The second reason is on the basis of distributive justice. In a public health system with limited resources, providing expensive or scarce treatment would potentially harm other patients since it would mean that those other patients would be denied access to treatment.
By Charles Foster
The Lord Chancellor recently announced that the discount rate under the Damages Act 1996 would be decreased from 2.5% to minus 0.75%. This sounds dull. In fact it is financially tectonic, and raises some important ethical questions.
In the law of tort, damages are intended to put a claimant in the position that she would have been in had the tort not occurred. A claimant who, as result of negligence on the part of a defendant, suffers personal injury, will be entitled to, inter alia, damages representing future loss of earnings, the future cost of care and, often, private medical and other treatment.
Where damages are awarded as a lump sum, there is a risk of over-compensating a claimant. Suppose that the claimant is 10 years old at the time of the award, and will live for 70 years, and the future care costs are £1000 a year for life. Should the sum awarded be £1000 x 70 years = £70,000? (70, here, is what lawyers call the ‘multiplier’). It depends on the assumption one makes about what the claimant will do with the lump sum. If she invests it in equities that give her (say) an annual 5% return, £70,000 would over-compensate her.
In the case of Wells v Wells1, the House of Lords decided that, to avoid the risk of under-compensation, claimants should be treated as risk-averse investors. It should be assumed, said the House, that the discount rate should be fixed by reference to the return on index-linked gilts – Government securities. The rate was 2.5% from 2001 until February of this year. The reasons for the change to minus 0.75% are here. Continue reading
Following widespread media coverage about the court case where baby Charlie Gard’s parents were told that his life support would be removed against their wishes, Dominic Wilkinson appeared on BBC’s Newsnight to discuss the factors that doctors take into account when making such difficult decisions.
Reports that a 62-year-old Spanish woman has given birth after IVF treatment have led many to question whether there should be age limits with such treatment. Lina Alvarez, a doctor in north-west Spain, isn’t the oldest person to have had success with IVF. Earlier this year, in India, Daljinder Kaur is said to have given birth at the age of 72, prompting calls from the Indian Medical Council for a ban on fertility treatment in women over the age of 50.
In many countries where there is funding assistance for IVF there is a limit to obtaining treatment over a certain age. In Britain, for example, the bar is set at age 42. But Alvarez received private treatment. So why care about her age? And what business is it of the rest of us whether she has access to IVF?
There are several arguments that typically surface in debates about age and fertility treatment – and they are all deeply flawed. Continue reading
Guest Post: Mind the accountability gap: On the ethics of shared autonomy between humans and intelligent medical devices
Guest Post by Philipp Kellmeyer
Imagine you had epilepsy and, despite taking a daily cocktail of several anti-epileptic drugs, still suffered several seizures per week, some minor, some resulting in bruises and other injuries. The source of your epileptic seizures lies in a brain region that is important for language. Therefore, your neurologist told you, epilepsy surgery – removing brain tissue that has been identified as the source of seizures in continuous monitoring with intracranial electroencephalography (iEEG) – is not viable in your case because it would lead to permanent damage to your language ability.
There is however, says your neurologist, an innovative clinical trial under way that might reduce the frequency and severity of your seizures. In this trial, a new device is implanted in your head that contains an electrode array for recording your brain activity directly from the brain surface and for applying small electric shocks to interrupt an impending seizure.
The electrode array connects wirelessly to a small computer that analyses the information from the electrodes to assess your seizure risk at any given moment in order to decide when to administer an electric shock. The neurologist informs you that trials with similar devices have achieved a reduction in the frequency of severe seizures in 50% of patients so that there would be a good chance that you benefit from taking part in the trial.
Now, imagine you decided to participate in the trial and it turns out that the device comes with two options: In one setting, you get no feedback on your current seizure risk by the device and the decision when to administer an electric shock to prevent an impending seizure is taken solely by the device.
This keeps you completely out of the loop in terms of being able to modify your behaviour according to your seizure risk and – in a sense – relegates some autonomy of decision-making to the intelligent medical device inside your head.
In the other setting, the system comes with a “traffic light” that signals your current risk level for a seizure, with green indicating a low, yellow a medium, and red a high probability of a seizure. In case of an evolving seizure, the device may additionally warn you with an alarm tone. In this scenario, you are kept in the loop and you retain your capacity to modify your behavior accordingly, for example to step from a ladder or stop riding a bike when you are “in the red.”
by Professor Dominic Wilkinson, @Neonatalethics
Professor of Medical Ethics, Consultant Neonatologist
Our society has good reason to provide special treatment to people with severe brain injuries and their families.
But our current “special treatment” for a group of the most severely affected people with brain injuries leads to devastating, agonising, protracted and totally preventable suffering.
Written by Angeliki Kerasidou & Ruth Horn, The Ethox Centre, Nuffield Department of Population Health, University of Oxford
Recently, a number of media reports and personal testimonies have drawn attention to the intense physical and emotional stress to which doctors and nurses working in the NHS are exposed on a daily basis. Medical professionals are increasingly reporting feelings of exhaustion, depression, and even suicidal thoughts. Long working hours, decreasing numbers of staff, budget cuts and the lack of time to address patients’ needs are mentioned as some of the contributing factors (Campbell, 2015; The Guardian, 2016). Such factors have been linked with loss of empathy towards patients and, in some cases, with gross failures in their care (Francis, 2013). Continue reading
By Charles Foster
English law has traditionally, for most purposes, regarded animals as mere chattels. There is now animal welfare legislation which seeks to prevent or limit animal suffering, but provided that legislation is complied with, and that no other relevant laws (eg those related to public health) are broken, you are free to do what you want with your animal.
Veterinary surgeons are in an interesting position. The UK regulatory body for veterinarians, the Royal College of Veterinary Surgeons (‘RCVS’) publishes a Code of Professional Conduct. This provides, inter alia:
‘1.1 Veterinary surgeons must make animal health and welfare their first consideration when attending to animals.’
‘2.2 Veterinary surgeons must provide independent and impartial advice and inform a client of any conflict of interest.’
‘First consideration’ in 1.1 is a rather weasly formulation. Does it mean that it is the overriding consideration, trumping all others, however weighty those others might be? Or the one that veterinarians ought to consider first, before moving on to other criteria which might well prevail? Continue reading
Associate Professor and Consultant Neonatologist Dominic Wilkinson (Oxford Uehiro Centre for Practical Ethics) argues that medical doctors should not always listen to their own conscience and that often they should do what the patient requests, even when this conflicts with their own values.