End of life decisions

Burke, Briggs and Wills: Why we should not fear the judgment in Charlie Gard

In a blog post today, Julian Savulescu argues that in a parallel adult version of the highly controversial Charlie Gard case, a UK court might thwart an unconscious patient’s previously expressed desire for self-funded experimental medical treatment. He finds the Gard decision deeply disturbing and suggests that we all have reason to fear the Charlie Gard judgment.

I respectfully beg to differ.

Julian’s thought experiment of the billionaire ‘Donald Wills’ is not analogous to the real Charlie Gard case, his analysis of the UK legal approach to best interests cases for adults is potentially mistaken, his fear is misplaced. Continue reading

Video Series: Charlie Gard should be allowed to die, says Dominic Wilkinson

Dominic Wilkinson, Consultant Neonatologist and Professor in Medical Ethics, argues that Charlie Gard should be allowed to die and that disagreement about this case is not necessarily ‘reasonable’ disagreement. He also explains what could possibly change his mind about the case.

 

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

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment. Continue reading

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

Julian Savulescu

Dominic Wilkinson’s Response

A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents.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 It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.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:

  1. the patient autonomously refuses it. (autonomy)
  2. continued life is no longer in the patient’s interests (best interests)
  3. 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.

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Debate Response: Charlie Gard, Interests and Justice – an alternative view

Dominic Wilkinson

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.

Two reasons

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.

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Our special treatment of patients in a vegetative state is a form of cruel and unusual punishment

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.

Continue reading

Veterinarians and the best interests of animals

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

Crosspost: Bring back the dead

A version of this post was originally published at The Conversation.

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

How much would you pay to live an extra year?

Dominic Wilkinson, University of Oxford

@Neonatalethics

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.

Saving time.
Bank by Shutterstock

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