Tag: dying patients

Bioethics Blogs

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.

1. Parents’ role in decision-making for children: We need to clarify harm

Much of the media attention to the Gard case has focussed on the rights of parents in decision-making for children, and whether the intervention of the courts in this case means that doctors frequently overrule parents in the UK.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The ethics of treatment for Charlie Gard: resources for students/media

by Dominic Wilkinson and Julian Savulescu

 

The case of Charlie Gard continues to attract intense public attention. It raises a number of challenging and important ethical questions.

The role of Practical Ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard, but agree on the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection.

We have collected together below some of the materials on the Charlie Gard case that we and others have written as well as some relevant resources from our earlier work. We will update this page as more material becomes available.

 

Legal material on the case

Blogs

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Burke and Wills: Why We Might All Fear the Judgment in Charlie Gard

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.

Donald’s wife, Melanie, is shattered. But she goes on the internet to see if anything can be done. She knows this is what Donald would want. She finds a world expert at a world class centre in Boston who has trialled a new treatment, X, on ten patients and has obtained significant results in one of them. She calls the expert and he tells her there is some chance of some improvement in her husband but it is low.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Video. Julian Savulescu argues in favour of an experimental treatment for Charlie Gard

We present these videos and selected ideas, wich give a short clear bioethics review of Charlie Gards’s case. Our Observatory fully agrees with his conclusions.
 Julian Savulescu (Uehiro Chair in Practical Ethics, Oxford), argues that Charlie Gard, who suffers from an extremely rare genetic condition called MDDS, should receive the proposed experimental treatment. According to Professor Savulescu, It’d be a reasonable price to pay for a chance of having a life that is worth living. However, there are limits to what babies like Charlie could be subjected to, and there should be a societal debate about what these limits should be, see here “Charlie Gard Legal Decision. Questionable on Secular Ethical Grounds”

In another article by Savulescu, titled “The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early”,  concluded:

Moral of the Story

This case might be a very good example of the detrimental consequences of the act-omission distinction. Because doctors and others are more reluctant to withdraw medical treatment than withholding treatment, often a trial of treatment is not commenced (because of a fear it will have to continue indefinitely). This has disastrous consequences in denying people a chance and also failing to gather more accurate information about prognosis. The best course of action, in this case, would have been to commence experimental treatment while Charlie was anyway being ventilated during various court processes.

There is an important lesson to be drawn. Where there is contention about an experimental treatment that is requested by a dying or severely ill patient (or their representative), it should be provided with a plan for active withdrawal.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Video. Julian Savulescu argues in favour of an experimental treatment for Charlie Gard

We present these videos and selected ideas, wich give a short clear bioethics review of Charlie Gards’s case. Our Observatory fully agrees with his conclusions.
 Julian Savulescu (Uehiro Chair in Practical Ethics, Oxford), argues that Charlie Gard, who suffers from an extremely rare genetic condition called MDDS, should receive the proposed experimental treatment. According to Professor Savulescu, It’d be a reasonable price to pay for a chance of having a life that is worth living. However, there are limits to what babies like Charlie could be subjected to, and there should be a societal debate about what these limits should be, see here “Charlie Gard Legal Decision. Questionable on Secular Ethical Grounds”

In another article by Savulescu, titled “The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early”,  concluded:

Moral of the Story

This case might be a very good example of the detrimental consequences of the act-omission distinction. Because doctors and others are more reluctant to withdraw medical treatment than withholding treatment, often a trial of treatment is not commenced (because of a fear it will have to continue indefinitely). This has disastrous consequences in denying people a chance and also failing to gather more accurate information about prognosis. The best course of action, in this case, would have been to commence experimental treatment while Charlie was anyway being ventilated during various court processes.

There is an important lesson to be drawn. Where there is contention about an experimental treatment that is requested by a dying or severely ill patient (or their representative), it should be provided with a plan for active withdrawal.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Press Statement: Gard Legal Decision Questionable on Secular Ethical Grounds

Julian Savulescu

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 me) 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.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

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 again 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.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

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.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

California’s Aid-In-Dying Law Turns 1, But Not All Doctors Have Adopted It

The organization reports that nearly 500 hospitals and health systems and more than 100 hospice organizations allow aid-in-dying to be offered to their patients and 80 percent of insurers statewide cover expenses related to it. The California law created a process for dying patients to ask their doctors for a lethal prescription that they can then take privately, at home

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Medical Futility and Religious Free Exercise

University of Utah law professor Teneille Brown has just posted a copy of “Medical Futility and Religious Free Exercise” recently published in First Amendment Law Review.


“A tragic scenario has become all too common in hospitals across the United States. Dying patients pray for medical miracles when their physicians think that continuing treatment would render no meaningful benefit. This situation is unfortunately referred to as ‘medical futility.’”


“In these cases, physicians, who are less likely than their patients to rely on God as a means of coping with major illness, are at an impasse. Their patients request everything be done so that they can have more time for God to intervene, but in the physician’s professional experience, everything will probably do nothing. What is the physician to do?”


“The conundrum is a modern one: medical technologies such as breathing machines and dialysis units can support human bodies almost indefinitely when many of our organs fail. But is there any limit on this technological imperative?”


“Every state and the U.S. Constitution recognize that a patient has the legal right to refuse unwanted treatment, even if it is life-sustaining. However, there is no corresponding constitutional right to demand specific treatments. Further, most states have passed so-called ‘medical futility statutes.’ These statutes make it explicit that physicians have immunity from negligence claims if a physician refuses to offer futile treatment, so long as particular statutory safeguards are met.”


“Even if there is no general legal entitlement to medical care and physicians may be immunized from negligence claims, can the invocation of a state’s medical futility statute violate free exercise under state RFRAs, or the U.S.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.