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Life and Death

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.

more…

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?

more…

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.

Chappell on Midwives and Regulation

2 Feb, 17 | by Iain Brassington

Richard Yetter Chappell has drawn my attention to this – a blog post in which he bemoans the Nursing and Midwifery Council’s rules about indemnity insurance, and the effects that they’ll have on independent midwives.  (I’d never heard of independent midwives – but an IM – according to Independent Midwives UK – is “a fully qualified midwife who has chosen to work outside the NHS in a self-employed capacity”.)  In essence, what’s happened is that the NMC has ruled that the indemnity cover used by some IMs – around 80, nationwide, according to some reports – is inadequate; these 80 IMs (out of 41000!) are therefore barred from working.

I’ve got to admit that this seems like a bit of a storm in a teacup to me.  For sure, there may have been infelicities about the way that the NMC handled its decision.  That may well be unfortunate, but it may not be all that much to get excited about.  However, Chappell makes two particularly striking points.  The first is his opening claim, in which he refers to this as “a new low for harmful government over-regulation”.  Well, it’s not really government overregulation, is it?  It’s the NMC.  Governing bodies are not government.  And whether it’s overregulation at all is a moot point: we need more information about what the standard is by which we should assess any regulation.  That leads us to the second striking thing that Chappell says, to which I’ll return in a moment.  Whether it’s harmful is also a moot point.  I mean, it may be true – as he points out – that the decision will have an undesirable impact on the relationship between some women and their chosen midwife.  But that won’t tell us anything about whether the policy is desirable all told.  It’s certainly not enough to warrant calling it “unethical” – and to dub something unethical is not a moral argument.

The second striking thing is this: more…

The Importance of Disambiguating Questions about Consent and Refusal

2 Feb, 17 | by miriamwood

Guest Post: Rob Lawlor

Re: Cake or death? Ending confusions about asymmetries between consent and refusal

Imagine you have an adolescent patient who is in need of life saving treatment. You offer him the treatment, assuming that he would consent, but he refuses. As he is not yet a competent adult, you decide to treat him despite the fact that he wishes to refuse treatment.

Now consider the question: does it make sense to say that there is an asymmetry between consent and refusal?

If you are familiar with the term “asymmetry between consent and refusal”, the chances are that you will believe that you know what the question means and you are likely to have an opinion regarding the answer. And if you are like John Harris, you may also think that the answer is obvious and that any other answer would be “palpable nonsense”. However, if you are not familiar with the term or with the relevant literature, you may be far less confident that you even understand the question.

Despite their lack of familiarity with the question, I believe the latter group may have a better understanding of the issue than the first group. Why? Because these people are wondering, “What does this question mean?” My claim is that we would make more progress if more people took the time to ask this question. The phrase “the asymmetry between consent and refusal” allows us to capture the topic of a particular debate in a fairly succinct way, but I suggest that it obscures the ethical issues, rather than illuminating them.

more…

A Matter of Life and Death

10 Jan, 17 | by bearp

Guest Post by Professor Lynn Turner-Stokes

Re: A matter of life and death – controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness

In an article published in the JME, I highlight the confusion that exists amongst many clinicians, lawyers and members of the public about decisions with withdraw life-sustaining treatments from patients in permanent vegetative and minimally conscious states.

Recent improvements in acute care for patient who have suffered catastrophic brain injury undoubtedly save lives. However, some patients who would otherwise have died now survive but remain profoundly disabled. Many patients experience a brief period of unconsciousness (or ‘coma’) lasting a few days or weeks. However, an unfortunate few with very severe brain injury remain in a vegetative and minimally conscious state (VS/MCS) for many months – or in some cases permanently.

Unfortunately the lay press, and even much of the medical literature, tends to conflate VS/MCS with coma, but they are in fact very different. Coma is a state of ‘unrousable unresponsiveness’ from which the patient cannot be awakened. It rarely persists for more than a few days or weeks, as the large majority of patients will either die or start to regain consciousness. Patients in VS or MCS are awake, but have either very limited awareness of themselves and their environment (MCS), or none at all (VS). With supportive treatment, many will live in these states for a decade or more.

more…

A Hot Take on a Cold Body

21 Nov, 16 | by Iain Brassington

It’s good to see Nils’ post about the recent UK cryonics ruling getting shared around quite a bit – so it should.  I thought I’d throw in my own voice, too.

About 18 months ago, Imogen Jones and I wrote a paper musing on some of the ethical and legal dimensions of Christopher Priest’s The Prestige.  One dimension of this was a look at the legal status of the bodies produced as a result of the “magic” trick – in particular, the haziness of whether they were alive or dead; the law doesn’t have any space for a third state.  The paper was something of a jeu d’esprit, written to serve a particular function in a Festschrift for Margot Brazier.  If I say so myself, I think it’s a pretty good paper – but it’s also meant to be fun, and is clearly rather less serious than most ethico-legal scholarship (or anything else in the book, for that matter).

coldlazarus5

Not quite “Cold Lazarus”, but close enough…

So it’s a bit of a surprise to see relevantly similar themes popping up in the news.  If we’re freezing people in the hope of curing terminal illness in the future, what’s the status of the bodies in the meantime (especially if the death certificate has been signed)?  There’s a load of questions that we might want to ask before we get too carried away with embracing cryonics.

Right from the start, there’s a question about plausibility.  For the sake of what follows, I’m going to treat “freezing” as including the process of defrosting people successfully as well, unless the context makes it clear that I mean something else.  Now, that said, the (moral) reasons to freeze people rely on the plausibility of the technology.  If the technology is not plausible, we have no reason to make use of it.  It wouldn’t follow from that that using it’d be wrong – but since the default is not to act in that way, it’s positive reasons that we need, rather than negative ones.  Neither could we really rely on the thought that we could cryopreserve someone in the hope that the freezing-and-thawing process becomes more plausible in future, because we’d have no reason to think that we’d chosen the right version of the technology.  We can only cryopreserve a person once: what if we’ve chosen the wrong technique?  How would we choose the best from an indefinitely large number of what we can at best treat as currently-implausible ones?

So how plausible is it to put a body on ice, then revive it many years later?  It’s been pointed out by some that we currently do preserve embryos without apparent ill-effect, with the implication that there’s no reason in principle why more developed humans couldn’t be frozen successfully.  However, whole humans are a wee bit more complex than embryos; it’s not at all clear that we can extrapolate from balls of a few cells to entire humans.  Even the admittedly limited experimental evidence that it’s possible to freeze whole organs won’t show us that, since we’re systems of organs.  One can accept that an organ is a system, too; but all that means is that we’re systems of systems – so we’ve squared the complexity.  And, of course, the timescales being considered here are tiny compared with the kind of timescales envisaged in cryonic fantasies. more…

Justice Cryogenically Delayed is Justice Denied?

18 Nov, 16 | by BMJ

Guest Post by Nils Hoppe

Re JS (Disposal of Body) [2016] EWHC 2859 (Fam)

This unusual and sad case concerns a court application by a 14 year old girl, JS.  In 2015 she was diagnosed with a rare form of cancer which proved terminal and, at the time of her application, she was receiving palliative care as an in-patient at a hospital.  The other parties involved in the application were JS’s parents, who were acrimoniously divorced.  JS had no direct contact with her father after 2008.

Knowing that she would soon die, JS carried out online research into commercial cryogenic preservation techniques, defined in the judgment as “the freezing of a dead body in the hope that resuscitation and cure may be possible in the distant future”.  Such techniques are not uncontroversial, being regarded with scepticism by the majority of the medical and scientific community.  They are also not cheap: the judgment describes the costs associated with the basic cryopreservation package as being in the region of £37,000, or, as Mr Justice Peter Jackson put it, “about ten times as much as an average funeral”.

Of most significance to the court application was the fact that the proposed procedure required the cooperation of the hospital in which JS was a patient.  This concern was described in the following terms by the judge:

The body must be prepared within a very short time of death, ideally within minutes and at most within a few hours.  Arrangements then have to be made for it to be transported by a registered funeral director to the premises in the United States where it is to be stored.  These bridging arrangements are offered in the UK for payment by a voluntary non-profit organisation of cryonics enthusiasts, who are not medically trained.  Evidently, where the subject dies in hospital, the cooperation of the hospital is necessary if the body is to be prepared by the volunteers.  This situation gives rise to serious legal and ethical issues for the hospital trust, which has to act within the law and has duties to its other patients and to its staff. (at paragraph 12)

JS, described as bright, intelligent and articulate, decided that she wanted her body to be cryopreserved after her death.  Her mother supported this wish: her father did not initially, though his views changed.  By the time the matter went to court, JS’s father was prepared to agree to what she wanted, subject to certain conditions, including that he be permitted to see her body after her death (which was objectionable to JS), and that he not be financially liable for the cryopreservation process.

In these circumstances, Mr Justice Peter Jackson was asked to make an order permitting JS’s mother to make arrangements for the cryopreservation of JS’s body after her death and, conversely, preventing her father from intervening.  In doing so, he considered a range of legal and ethical issues.

The whole concept of halting decay after death in order to wait for a miracle cure is predicated on the potential for future scientific progress.  At the same time, it was clearly right for Mr Justice Peter Jackson to work on the basis of science as it stood at the time the matter came before him.  The cessation of the JS’s life is, in the current scientific context, irreversible and fulfils the criteria we use to diagnose death in a legally meaningful way.  The question of what is then done with her body is at this stage of secondary importance only.  She may request to be interred in a family tomb, be incinerated, or donate her body for scientific purposes.  In this case, she would like to be cryopreserved.  The court ought to only engage with this issue in detail if the proposed use of the body after death raises issues which touch on public morals, such as Lord Avebury’s memorable attempt to bequeath his body to Battersea Dogs’ Home, or Jeremy Bentham’s installation as an autoicon.  Her wish to place a very expensive bet on an unknown future technology becoming available is her business alone and may even be a fully acceptable, if unusual, desire with which a court ought not interfere.  Her bet also extends to that new technology permitting her successful resuscitation.  It extends to her mental faculties surviving the procedure so she can meaningfully engage with her surroundings post-resuscitation.  And it also extends to a cure having been found for the condition which caused her first ‘death’.

Any one of these bets is so risky as to be legitimately thought of as unlikely.  In sum, they are sufficiently unlikely to not raise a significant problem in the proceedings before Mr Justice Jackson: If he thought that her death was, on the balance of probabilities, reversible at a future point in time, would he be entitled to decide this issue on the basis that she is dead?  Most jurisdictions, including England and Wales, are clear that the death of the individual must be ‘irreversible’ to be normatively meaningful.  Where this is the case, what is done with the body afterwards is very much a matter for the concerned individual and her family.  There is only a reserve right for public institutions to intervene if the proposed use is deemed so inappropriate as to negate her right to decide what to do with her body after her own death.

Indeed, where the discussion at some point centres upon what the best interests of JS are it seems clear that it must be ever so slightly more in her interest to preserve an opportunity of resurrection, albeit enormously remote, than it is to be interred and decay irreversibly.  It seems clear that there is very little sensible argument which would allow the Court to deny her final wish.  The mere fact that we feel the promises made by the cryopreservation industry amount to a most grievous form of quackery is insufficient to justify an interference, just as we do not have to like or agree with the reasons why adherents to some religions used to refuse blood transfusions.

The Court was required to work on the basis of what is scientifically possible at this point in time, and be agnostic as to any future developments.  Mr Justice Jackson did so, and he did so with commendable sensitivity to the subject matter before him.  The decision is the right one to reach.  The theoretical question of what becomes of all those cryopreserved in facilities across the world if technology advances to the point where they can effectively be rescuscitated remains for another time.  But there is an exciting point here: unless the law is changed ex ante, cryopreservation companies will suddenly have custody of hundreds of comatose patients, rather than dead bodies – with all of the entailing legal and moral obligations.

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