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Critical Care

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

by Dominic Wilkinson and Julian Savulescu

 

The case of Charlie Gard has reached its sad conclusion. However, it 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. (*Updated 10/11/17)Read More »The ethics of treatment for Charlie Gard: resources for students/media

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.Read More »The sad case of Charlie Gard and the rights *and wrongs* of experimental treatment

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

RCJ-2

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.Read More »Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

Damages and communitarianism

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. Read More »Damages and communitarianism

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.

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

#IminworkJeremy – the ethics of 24/7 consultant cover

By Dominic Wilkinson @Neonatalethics

 

At the bedside of a critically ill infant at 5am this morning I was tempted to tweet the latest meme, adding my voice to a chorus of NHS clinicians over the weekend. Last week, in a speech to the King’s fund, Health Minister Jeremy Hunt launched a drive towards 7 day NHS. In particular, he focused on consultant contracts, proposing that newly qualified hospital doctors will be required to work weekends as a condition of employment.

Read More »#IminworkJeremy – the ethics of 24/7 consultant cover

Relaxed about dying?

“Now we must wait, wait. These hours…. The gurgling starts again — but how slowly a man dies! …By noon I am groping on the outer limits of reason. …every gasp lays my heart bare.” Erich Maria Remarque, All Quiet on the Western Front

In Remarque’s novel, the agony of the German soldier, witnessing the slow death of an enemy combatant, is heightened by his own guilt (the narrator had stabbed another soldier in self defense). However, his powerful evocation of distress (and guilt) at witnessing a slow dying is very close to the expressed concerns of parents and clinicians who are watching the death of a child.

Read More »Relaxed about dying?

“Please randomize me – but don’t tell my family that you did”

Last week various newspapers (see here and here) reported on a planned research study of adrenaline for patients suffering a cardiac arrest outside hospital. The PARAMEDIC 2 trial (full protocol here) involves ambulance officers randomly giving patients either the traditional resuscitation drug adrenaline, or a salt-water solution (placebo). The trial has been strongly criticized by Ruth and Lindsay Stirton, writing in the Journal of Medical Ethics.

There are two main controversial elements to the trial design. The first involves the lack of consent for involvement in the trial, the second involves the researchers’ plan not to inform families of patients who died that their loved one had been in a research trial.

Read More »“Please randomize me – but don’t tell my family that you did”

Do Not Attempt Resuscitation orders: should you discuss with the patient?

The Court of Appeal has stated that a statement in a capacitous patient’s medical notes that resuscitation should not be attempted (a ‘Do Not Attempt Resuscitation’ Order – DNAR), should usually only be inserted after consultation with the patient: see R (Tracey) v Cambridge University Hospitals NHS Foundation Trust and others [2014] EWCA Civ 822 (17 June 2014).

The facts have been widely aired in the media: see, for example, here.

Mrs. Tracey had terminal lung cancer. Her clinicians indicated in the notes that no attempts at resuscitation should be made. Her family found out about this, and were outraged, saying that the DNAR order should not have been made without consultation with Mrs. Tracey. Their quarrel was not with the medical appropriateness of the determination that resuscitation would not be in Mrs. Tracey’s best interests, but with the procedure  – the failure to consult.  This, they said, violated Mrs. Tracey’s rights under Article 8 of the ECHR.

The Resuscitation Council, intervening, said that a requirement to consult with the patient would interfere with clinicians’ ability to deliver individual and compassionate care. A patient might, for instance, be very distressed by a discussion about a possible DNAR order.

The outcome can be briefly stated:

  • Mrs. Tracey’s Article 8 rights were engaged by recording the DNAR in the notes. This followed from, inter alia, Pretty v UK (2002) 35 EHRR 1.
  • Her Article 8(1) rights were violated by failing to involve her in the process
  • Article 8(2) required the policy adopted by a Trust in relation to DNAR orders to be sufficiently clear and accessible: see Purdy v DPP [2009] UKHL 45; [2010] 1 AC 345.
  • The absence of a mandatory national DNAR policy was not a violation of Article 8. Local policies would, if properly formulated, satisfy the demands of Article 8(2)
  • The concerns of the Resuscitation Council were real, but could be met by an important caveat: there should be consultation with the patient unless the clinician ‘thinks that the patient will be distressed by being consulted and that distress might cause the patient harm.’Read More »Do Not Attempt Resuscitation orders: should you discuss with the patient?