A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents.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 It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.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Sometimes treatment is withheld or withdrawn because it is “futile.”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 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.
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
A trial to see if it is possible to regenerate brains in patients that have been declared clinically dead has been approved. Reanima Advanced Biosciences aims at using stem cells, injections of peptides, and nerve stimulation to cause regeneration in brain dead patients. The primary outcome measure is “reversal of brain death as noted in clinical examination or EEG”, which at least scores high on ambition. The study accepts healthy volunteers, but they need to be brain dead due to traumatic brain injury, which might discourage most people.
Is there any problem with this? Continue reading
Medical science continues to push at the boundaries of life and death with new drugs and technologies that can extend life or improve health. But these advances come at a cost. And that inevitably raises difficult questions about whether public health systems should pay for such treatments – and, if so, how much. For example, should the NHS fund the new breast cancer drug Kadycla which comes with a £90,000 price tag per patient?
Some countries make these difficult decisions by looking at the cost-effectiveness of new treatments. How much does the new treatment cost and how effective is it compared with existing treatments? Treatments may help patients live longer, or they may improve a patient’s quality of life (or both). Kadycla appears to extend life by about six months.
One mathematical way of combining these elements uses the concept of a Quality-Adjusted Life Year saved, or QALY. As an example, a treatment that extends life for one year but at a “quality” level of half normal it said to save 0.5 QALY. When treatments are assessed this way, health systems can then use a threshold to work out a maximum cost that is affordable. The National Institute for Health and Care Excellence (NICE) uses a threshold of £20,000-£30,000 for each Quality-Adjusted Life Year saved (QALY). This would mean (assuming full quality of life), that the NHS would be prepared to pay £10,000-15,000 for a course of Kadycla.
A couple of weeks ago, in an airport bar, I met the foundation of modern bioethics.
I was crawling back to London: he was heading to JFK.
‘I usually fly First’, was his opening, as we sat on those vertiginous stools. ‘So I’m usually in the Lounge. But it’s good to be reminded how the other half live.’ I was glad, for about a minute, to be part of his democratic education.
He’d had quite a start on me, and was several G & Ts down when I arrived. That might have loosened his tongue. Or perhaps, and probably, he was as keen when sober to talk obsessively, self-referentially and self-reverentially about himself. Continue reading
by Dominic Wilkinson @Neonatalethics
In California, in the last week, there have been further motions in a long running lawsuit relating to a brain-dead child. Oakland teenager Jahi McMath died after a tonsillectomy in December 2013. However, her parents rejected the medical diagnosis of brain death, and despite a Californian court providing judicial backing for doctors’ determination, organized for her to have a tracheostomy and be transferred to another medical facility. More than 18 months later it appears that Jahi’s heart is still beating and she is still connected to a breathing machine somewhere in New Jersey. Continue reading
The Court of Protection is due to review very soon the case of a teenager with a relapsed brain tumour. The young man had been diagnosed with the tumour as a baby, but it has apparently come back and spread so that according to his neurosurgeon he has been “going in and out of a coma”. In February, the court heard from medical specialists that he was expected to die within two weeks, and authorized doctors to withhold chemotherapy, neurosurgery and other invasive treatments, against the wishes of the boy’s parents.
However, three months after that ruling, the teenager is still alive, and so the court has been asked to review its decision. What should we make of this case? Were doctors and the court wrong?
by Dominic Wilkinson @NeonatalEthics
On the 29th of January, Paediatric Palliative Care Specialist Dr Richard Hain gave the first St Cross Special Ethics Seminar for Hilary Term.
Dr Hain’s talk was titled “Mere Practicality? Infants, interests and the value of life”. The talk abstract and a link to a podcast of his talk can be found below.
The main focus of the talk was on contemporary accounts of medical ethics and in particular on the challenge of finding an adequate account that addresses the needs of human infants. Hain drew an analogy with a blood pressure cuff or “sphygmomanometer”. Blood pressure cuffs wrap around the upper arm, and air is pumped in to them until blood flow stops through the arm (this gives a reading of the pressure in the patient’s arteries). Adult-sized blood pressure cuffs don’t work well for children or infants. A too large cuff will usually give a reading that is too low because it doesn’t take as much air to cut off the blood flow. It underestimates a child’s true blood pressure.