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Life and Death

Charlie Gard: An Ethical Analysis of a Legal non-Problem

11 Aug, 17 | by Iain Brassington

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment.  The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.  The High Court ruled against this on the 27th July.  Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

The way this case has played out has not been pretty.  Elements of the American media (this piece, which I’ve mentioned before, is one among many) and the political right wing used it to launch attacks on single-payer healthcare systems:

Nigel Farage weighed in, complaining about the state taking away parental rights:

From the left, Giles Fraser wrote that the case was being dealt with too rationally.  None of these claims is justified, and many left-leaning people have been surprised to find themselves in agreement with Melanie Phillips on this matter.

Legally, the case was very straightforward. more…

Charlie Gard and the Ethics Commentator

18 Jul, 17 | by miriamwood

Guest Post: Daniel Sokol

‘Best interest’ cases, such as the Charlie Gard case, are fundamentally about medical ethics, although they are determined by a single judge in a court of law.

At the hearing last week, there were at least 4 express references to medical ethics.

The first appeared in the hospital’s “position statement”, drafted by Leading Counsel, Katie Gollop QC:

As to the disagreements [between the parents and the hospital], one is a difference of opinion about the risks, benefits and ethics of providing our compound nucleoside treatment for Charlie after a time when his brain had become profoundly affected by his genetic disease.”

The second was a reference to the Hippocratic Oath: Counsel for the parents stated that the decision to offer the proposed experimental treatment would be consistent with the Hippocratic Oath.  I discuss this – and my current view on the case – in an article for the British Medical Journal.

The third was the mention by the parents’ barrister of a bioethicist, whose article was included in the family’s file of evidence to the Court.

The fourth was the decision to appoint a clinical ethicist to chair a Multidisciplinary Team meeting on Monday 17th July 2017.

It is no surprise, therefore, that ethicists have commented on the case.  As the court is not expected to make a decision until 25th July, and as we enter a quiet season for the media, many more commentaries will follow.


Guest Post: Withdrawing Life-Prolonging Treatment in the Patient’s Best Interests: The Implications of Briggs

14 Jul, 17 | by miriamwood

Guest Post: Jenny Kitzinger, Celia Kitzinger and Jakki Cowley

Paper:  When ‘Sanctity of Life’ and ‘Self-Determination’ clash

In a recent landmark judgment in the Court of Protection (Briggs v Briggs [2016] EWCOP 53), a judge authorised withdrawal of life-prolonging treatment from a minimally conscious patient with potential for further recovery.  Our article in the Journal of Medical Ethics addresses the implications of this judgment, highlighting its potential to strengthen compliance with the Mental Capacity Act 2005, and the delivery of person-centred care.

How this will work in practice is another question.

We have supported families (CK and JK) and represented patients (JC) in a series of cases – several of which have reached court – in which families sought treatment withdrawal and doctors refused.  We know many families who believe that their brain-injured relative would not want to receive on-going life-prolonging interventions. It usually takes years for families to come to this view and even longer to communicate it to doctors. Some health care professionals can be dismissive – or even hostile – when families speak up.   Even when doctors acknowledge that a patient will never regain consciousness, some have ethical objections to withdrawing treatment from a clinically stable patient.  It feels, they say, like ‘euthanasia’.


Is Hope a Virtue?

13 Jul, 17 | by Iain Brassington

It’s perfectly understandable that hope should have featured so prominently in the coverage of the Charlie Gard case; each proposal is presented as offering fresh hope, each reversal presented as dashing hopes.  In either case, hope is something presented as desirable.  A bit more deeply, hope is one of the Theological Virtues, and so anyone who has grown up in the West, irrespective of their doctrinal commitments, will come from a culture in which there’s an overwhelming sense of hope being something good.  For some, it may even be an unalloyed good – I’ll return to that in a moment.

Indeed, it’s hard to imagine a culture in which hope is not fairly straightforwardly desirable: in which, that is, hope’s desirability is the exception rather than the rule.

Hard, but not impossible.

Here’s Hesiod, telling the story of Pandora in Works and Days (from Dorothea Wender’s translation for Penguin):

Before this time men lived upon the earth
Apart from sorrow and painful work,
Free from disease, which lets the Death-gods in.
But now the woman opened up the cask,
And scattered pains and evils among men.
Inside the cask’s hard walls remained one thing,
Hope, only, which did not fly through the door.
The lid stopped her, but all the others flew,
Thousands of troubles, wandering the earth.
The earth is full of evils, and the sea.
Diseases come to visit men by day
And, uninvited, come again at night
Bringing their pains in silence, for they were
Deprived of speech by Zeus the Wise.  And so
There is no way to flee the mind of Zeus.

Hesiod is ambiguous about hope here.  Was it placed in the cask by Zeus as a sort of remedy for all the other evils?  That’s the interpretation of the story to which I was exposed as a 10-year-old.  It’s plausibly quite a Christianised reading, with Hope as the consolation for the cares of the world, and a shield against despair.  That might have been how some contemporary Greeks took the story, too.  But there’s nothing in the text to indicate that it’s the correct interpretation; it does seem to be something we’d have to infer based on an assumption that Hope is good, and Hesiod offers no grounds for that assumption.  And there’d be puzzles left to solve for this interpretation to work.  Why would Zeus, intent on making humanity suffer, provide an antidote to suffering?  Well, maybe he had a change of heart.  But that seems implausible, since hope was sent with all the evils of the world.  A change of heart would be better expressed by not sending the evils – or not quite so many of them – in the first place.

Might Hope itself have been one of the evils sent by Zeus, then?  That’s be perplexing to a modern audience, but that counts for little; Hesiod was alive at roughly the same time as Homer, in the seventh or eighth century BC, so there’s plenty of time for all kinds of cultural contortions.  Maybe Hesiod’s audience was one in which hope had undesirable connotations.

But why should hope be seen as evil?  Well, Nietzsche has an answer to that in §71 of Human, all too Human: more…

Never Let an Ill Child Go to Waste

7 Jul, 17 | by Iain Brassington

The Charlie Gard saga is one about which I’ve been reluctant to say anything, not least because plenty of other people have said plenty elsewhere.  Sometimes they add heat, and sometimes they add light.

Beneath everything, the story is fairly simple: a small child is terribly ill; it is agreed by medical opinion that continued treatment is not only not in his best interests but would cause him positive harm; the courts have determined that the withdrawal of treatment is warranted.  One sympathises with his parents’ fight to keep treatment going – but it does not follow from that that their opinions should be determinative.  Indeed, the courts having decided that Charlie’s treatment should not be withdrawn immediately in order to allow his parents more time with him risks making the case about them, rather than about him.  If treatment is not medically warranted and actually is harmful, there may be something worrisome about continuing it anyway for the sake of his parents.  Their distress is not going to lessened by prolonging the child’s treatment, and even if it were, it is not the proper focus here.

So that’s my hot take on the story itself.  I don’t think it’s anything too radical.  Yet the coverage of the case has been, in places, something of a trainwreck.  Take, for example, this piece from the Chicago Tribune (with thanks to Charles Erin for the pointer).  It’s fascinating for just how much it manages to get wrong, and how mawkish it is, and for what it does with the story to such unpleasant ends.

Charlie’s parents, Connie Yates and Chris Gard, are fighting to bring their son to the U.S. for experimental treatment. They’ve raised $1.7 million on a crowdfunding website to do so.

But Charlie’s doctors, and the British courts, won’t let him go. Medical authorities argue that prolonging his life by keeping him on a ventilator could cause him pain. British authorities won’t even let the parents take him home to die.

Well, yes and no.  I mean, it’s true that Charlie won’t be travelling abroad for treatment, but the tone here is deeply misleading: it’s presented as a kind of custody battle, and it’s no such thing.  It’s about what’s in Charlie’s best interests.  “The authorities aren’t even letting him go home to die” is arguably a rather mendacious way of saying “Charlie really needs the kind of care that can’t be provided at home”.

The article continues: more…

No Pain, All Gain: The Case for Farming Organs in Brainless Humans

10 Jun, 17 | by Iain Brassington

Guest post by Ruth Stirton, University of Sussex (@RuthStirton) and David Lawrence, Newcastle University (@Biojammer)

It is widely acknowledged that there is a nationwide shortage of organs for transplantation purposes.  In 2016, 400 people died whilst on the organ waiting list.  Asking for donors is not working fast enough.  We should explore all avenues to alleviate this problem, which must include considering options that appear distasteful.  As the world gets safer, and fewer young people die in circumstances conducive to the donation of their organs, there is only so much that increased efficiency in collection (through improved procedures and storage) can do to increase the number of human organs available for transplantation. Xenotransplantation – the transplantation of animal organs into humans – gives us the possibility of saving lives that we would certainly lose otherwise.

There are major scientific hurdles in the way of transplanting whole animal organs into humans, including significant potential problems with incompatibility and consequent rejection.  There is, however, useful similarity between human and pig cells, which means that using pigs as the source of organs is the most likely to be viable.  Assuming, for the moment, that we can solve the scientific challenges with doing so, the bigger issue is the question of whether we should engage in xenotransplantation.

A significant challenge to this practice is that it is probably unethical to use an animal in this way for the benefit of humans. more…

Law Changes and Slippery Slopes

13 Apr, 17 | by Iain Brassington

Apparently, there was a TV programme in Australia the other day in which a there was a discussion of assisted dying.  It got reported in The Guardian, largely on the basis that an 81-year-old audience member kept calling Margaret Somerville “darling” and then got mildly sweary.  I’ve only seen those clips from the programme that are linked in the Graun‘s report, so I’m not going to comment on the tone of the debate in particular.  Rather, I’m interested in one of the responses to the programme, from Xavier Symons, writing in The Conversation.

Symons takes the opportunity to unpick the idea of a slippery slope argument – in this case, the claim that allowing some forms of assisted dying will commit us to allowing… well, that’s open-ended, but it’s sufficient to say that it’d be terrible.  We’d want to avoid terrible things; therefore, the argument goes, we shouldn’t allow any of it.  This is well-worn stuff in the seminar room, but it’s a mode of argument that refuses to die.  Quite correctly, Symons points out that

there is a need for empirical evidence or sound inferential reasoning to support the claim that event B will necessarily (or probably) follow on from event A.  Without this evidence, the argument is invalid. I can’t just claim, for example, that the legalisation of medicinal marijuana leads to the legalisation of ice – I need to show some empirical or logical connection between the two.

So far, so standard.  (I’d say “unsound” rather than “invalid”, because the validity of an argument doesn’t depend on its evidence – or, at least, not in the same way; but that’s a small matter.)  He then makes another move, which is a bit more interesting:

But (and it’s a big but) there is such a thing as a good and valid slippery slope argument.  A good slippery slope argument demonstrates a causal or probable relationship between event A and B, such that event B can legitimately be expected to occur if event A is allowed to occur. […] There are, nevertheless, compelling empirical and logical slippery slope arguments available to defend more modest claims about the “normalisation” of assisted dying.

Is this correct? more…

Aid-in-Dying Laws and the Physician’s Duty to Inform

22 Mar, 17 | by miriamwood

Guest Post: Mara Buchbinder

Paper: Aid-in-dying laws and the physician’s duty to inform

Why do so many people assume that any clinical communication about aid-in-dying (AID, also known as assisted suicide), where it is legal, ought to be patient-initiated? Physician participants in my ongoing study tend to assume that physicians should wait for patients to initiate discussions of AID. The clinical ethics literature on communication about AID has reinforced this expectation by focusing on how to respond to patient requests. Consequently, bioethics has largely remained silent on whether there is a professional duty to inform terminally ill patients about AID laws and their clinical and legal requirements.

As a medical anthropologist, I pay attention to such gaps in professional discourse, as they often indicate ideas that are so taken for granted that they escape formal expression. In this case, bioethics’ silence on professional obligations to inform patients about AID suggests to me that initiating such a discussion is widely viewed as dangerous. But why? My recent article in the Journal of Medical Ethics began with this puzzling question.


Response to ‘A Matter of Life and Death: Controversy at the Interface Between Clinical and Legal Decision-Making in Prolonged Disorders of Consciousness’

3 Mar, 17 | by miriamwood

Guest Post: Julian Sheather, British Medical Association

Response to: A matter of life and death: controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness (also available as a blog summary)

The law has to work in generalities. The prohibitions it imposes and the liberties it describes are set for all of us, or for large classes of us. But we live – like we sicken and die – as individuals. Lynne Turner-Stokes gives a vivid account of an area of clinical practice where these truisms come into conflict. Practice Direction 9E (PD9E) doesn’t sound like much, a piece of dry-as-dust procedure for the Court of Protection, but it governs an area of keen moral concern: for our purposes, decisions relating to the withdrawing or withholding of clinically-assisted nutrition and hydration (CANH) from patients in a persistent vegetative state (PVS) or a minimally conscious state (MCS). According to PD9E, all such decisions should be bought before the Court of Protection.

On the face of it, given the seriousness of the decisions involved, court involvement looks like an important safeguard – these are, inevitably, life or death decisions on behalf of people who cannot determine their own interests. That its origins lie with Anthony Bland and one of the most important judgments in recent medico-legal history seems to confirm it. But there are some crucial distinctions. Anthony Bland was young. His brain damage was sudden onset – the result of asphyxiation. Unless CANH were withdrawn, he could live for many years. The lawfulness of withdrawing CANH in these circumstances was legally untested. The question before the courts was whether withdrawal could be distinguished from unlawful killing.

But disorders of consciousness are not solely the result of trauma in the otherwise healthy. As Lynne Turner-Stokes points out, many people can move into and through them as part of the ordinary process of dying. And the withdrawing – or withholding – of artificial nutrition and hydration can be a part of appropriate clinical management. And this is where PD9E can come under stress. As Turner-Stokes points out, states of disordered consciousness arise in clinical practice in many contexts, often unlinked to sudden-onset brain injury. If PD9E arose from the specifics of Bland, how do we distinguish between those cases that should go to court, and those that form part of ordinary clinical care?


How to Keep HIV Cure-Related Trials Ethical: The Benefit/Risk Ratio Challenge

20 Feb, 17 | by bearp

Guest Post by Nir Eyal

Re: Special Issue of the Journal of Medical Ethics on the ethics and challenges of an HIV cure

For most patients with HIV who have access to antiretroviral treatment and use it properly, that treatment works well. But the holy grail of HIV research remains finding a cure. Sometimes that means a literal, sterilizing cure that would remove HIV from the body. But increasingly the aim is to find a mere functional cure that would send HIV into sustained remission during which antiretrovirals would be unnecessary.

Early successes in cure-related research, most notably the apparent cure of ‘Berlin patient’ Timothy Brown, prompted the International AIDS Society and the US National Institutes of Health to declare cure-related research a high priority. Recent successes in animal models have re-kindled hopes, and cure-related research is ongoing.

But there is a catch. Many of the early-phase cure-related studies that are currently planned or under way carry risks that are either very high or hard to quantify. These risks come from toxicity (e.g., of stem cell transplantation in an immunocompromised population), necessary interruptions to antiretroviral treatment (either short ‘pauses’ or intentionally longer breaks), or invasive physical exams. They affect study subjects and, sometimes, third parties like sexual partners or foetuses.

While high or unknown risks are a mainstay of early-phase trials in areas like cancer research, cure study participants typically have a safe and efficacious alternative to those risks: remaining on antiretrovirals. Can we justify asking patients who are doing well on antiretrovirals to accept the risk and uncertainty of many HIV cure-related trials? If we cannot, we might need to give up on the hope of curing HIV, or of achieving controlled remission.

These ethical questions about HIV cure-related trials were first raised by an activist, then asked again and again. They also arise in human subject research beyond HIV cure-related studies: what should we do when it is hard to keep a socially-important study beneficial in prospect to study participants? Are we ever permitted to compromise the individual’s objective interests in the pursuit of collective goals? What are legitimate ways of pre-empting this dilemma? The entire February 2017 issue of Journal of Medical Ethics is dedicated to clarifying and trying to answer these questions.

After an introduction, the journal issue provides a background by leading HIV-cure related researchers Dan Kuritzkes and Kenneth Freedberg and Paul Sax, as well as myself, a philosopher. Articles by legally-trained bioethicists Rebecca Dresser and Seema Shah and philosopher Caspar Hare suggest ways to quantify and mitigate risks to participants of cure-related studies. Contributions by philosopher Lara Buchak, bioethicist and lawyer Emily Largent, and AIDS activist David Evans assess how much the potential benefits to study participants, ranging from the remote hope of being cured through financial incentives to the satisfaction of having helped others, can legitimately offset any remaining risks. Legally-trained bioethicist George Annas and philosopher Danielle Bromwich explore how much participants’ fully informed consent can count as ample protection in cure-related studies, and when that consent counts as full. Philosophers Dan Wikler, Nick Evans (with first author public health expert Regina Brown), Rahul Kumar, and Frances Kamm assess when, if ever, the potential public health benefits of research—e.g., finding a cure for HIV—can warrant placing individual study participants at high net risk. An afterword asks how these investigations should affect future directions in research ethics.

Many contributions agree that myriad ways exist to justify studies that, at least on the face of it, run counter to the best medical interests of candidate participants. Furthermore, one need not be a utilitarian to argue as much. Even so-called contractualist ethicists such as Rahul Kumar can justify such studies, provocative though they may be for current culture in clinical study oversight. That culture, these articles suggest, is hard to defend from a wide spectrum of ethical theories.


NOTE: This post will be cross-published at BMJ Opinion.

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