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Life and Death

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.

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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.

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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.

Victims, Vectors and Villains? Are Those Who Opt Out of Vaccination Morally Responsible for the Deaths of Others?

11 Oct, 16 | by miriamwood

Guest Post by Euzebiusz Jamrozik, Toby Handfield, Michael J Selgelid

Re: Victims, vectors and villains: are those who opt out of vaccination morally responsible for the deaths of others?

Who is responsible for the harms caused by an outbreak for vaccine preventable disease?

Are those who opt out of vaccination and transmit disease responsible for the resultant harms to others?

Suppose that health care systems make vaccines widely available and easily affordable–but some choose not to be vaccinated, resulting in an outbreak. If the outbreak only affected those who could have been safely and effectively vaccinated, but nonetheless opted out, then we might say that those who become infected consented to the risks involved and are thus responsible for their own illness. What should we think, however, about scenarios where harm occurs to those who cannot be safely or effectively vaccinated – e.g. vulnerable groups such as infants and the immunosuppressed? These groups are often at the highest risk of severe harm, and depend upon herd immunity (resulting from high vaccination rates) to protect them from vaccine-preventable infections. Members of such groups bear the burden of others’ freedom to opt out of vaccination, and this can cost them their lives. In 2015, for example, an immunosuppressed woman died in the United States during a measles outbreak made possible by a lapse in local vaccination rates[1].

Our recent article in the Journal of Medical Ethics argues that imposing risks of infection on others without good justification is morally blameworthy–and that individuals who opt out of vaccination are thus morally responsible for resultant harms to others. In defence of this thesis we address numerous important questions, and our answers may have significant implications for public health policy.

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We’re all Gonna Die… Eventually

6 Oct, 16 | by Iain Brassington

It might just be a product of the turnover of people with whom I have much professional contact, but I’ve not heard as much about human enhancement in the past couple of years as I had in, say, 2010.  In particular, there seems to be less being said about radical life extension.  Remember Aubrey de Grey and his “seven deadly things“?  The idea there was that senescence was attributable to seven basic processes; those basic processes are all perfectly scrutable and comprehensible biological mechanisms.  Therefore, the argument went, if we just put the time and effort into finding a way to slow, halt, or reverse them, we could slow, halt, or reverse aging.  Bingo.  Preventing senescence would also ensure maximum robustness, so accidents and illnesses would be less likely to kill us.  To all intents and purposes, we’d be immortal.  Some enterprising people of an actuarial mindset even had a go at predicting how long an immortal life would be.  Eventually, you’ll be hit by a bus.  But you might have centuries of life to live before that.

Dead easy.

I was always a bit suspicious of that.  The idea that death provides meaning to life is utterly unconvincing; but the idea that more life is always a good thing is unconvincing, too.  What are you going to do with it?  In essence, it’s one thing to feel miffed that one isn’t going to have the time and ability to do all the things that one wants to do: life is a necessary criterion for any good.  But that doesn’t mean that more life is worth having in its own right.  Centuries spent staring at a blank wall isn’t made any better by dint of being alive.

But a letter published this week in Nature suggests that there is an upper end to human lifespan after all.  In essence, the demographic data seem to suggest that there’s an upper limit to survivability.  That being the case, we should stop worrying about making people live longer and longer, and concentrate on what’s going on during the 125 years or so that Dong, Milholland and Vijg think is allotted to us. more…

Our Special Treatment of Patients in a Vegetative State is a Form of Cruel and Unusual Punishment

23 Sep, 16 | by miriamwood

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.

Consider the following cases:

Case 1. Sally has severe progressive dementia. She is no longer able to communicate, and does not recognize any of her family members. Sally had previously spoken with her family and told them that if she were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Sally’s doctor has been called to her nursing home because she has pneumonia. Although the infection could be treated with antibiotics, the doctor and family together decide not to. Sally dies a few days later.

Case 2. Sandra has suffered a severe head and spinal injury in a car accident. She has been in intensive care for several weeks, but there is no sign of improvement. Her brain scans show extensive damage, and it is likely that if she survives Sandra would be severely disabled. Sandra had previously spoken with her family and told them that if he were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Although Sandra could be kept alive for some time if treatment continues, the doctors and the family together decide to stop life support. Sandra dies a few minutes later.

Case 3. Susie suffered a severe brain injury months ago. She was left in a vegetative state. She has no response to those around her. Susie had previously spoken with her family and told them that if she were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Susie’s family wish to stop the artificial feeding that is keeping her alive, but her doctor explains that a decision would need to be made by the courts. There are long delays before and during the court application procedures. Four years after her brain injury, the court authorizes withdrawal of artificial feeding. Susie dies some days later.

These cases are fictional, though the last one (Susie) is based on a real case (Miss S), which went to the Court of Protection in England and Wales earlier this year. In the real case, a set of avoidable factors meant that decisions were delayed for more than three and a half years. An important paper, released today in the Journal of Medical Ethics, analyses the cause and consequences of the delays. The paper describes in vivid detail the distress and desperation of Miss S’s family.

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Letter from Iraq: Ethical Dilemmas in an Iraqi Burn Centre

17 Sep, 16 | by BMJ

Guest Post by Mustafa AL-Shamsi

Health requires a multidisciplinary approach.  In the absence of proper support, facilities and literate people, there is little that a physician can do to cure his patient regardless his proficiency.  The following is not a story; it comes from what I experienced when I was an intern at the burn unit.  I faced a lot of ethical rather than medical challenges.  Some I could cope with; others were not so easy.

I was an intern in Basra city, according to the internship curriculum.  My internship in the burn unit changed my outlook and made me aware of how fragile the health care system is in Iraq.  Being a doctor in the Iraqi health care system is tough; there are many challenges to stand against, but you have little to do because of a limited resources, poor training and supervision.  The most disturbing thing is you have little to do for your patient!  (Others have noted similar problems.)

I learned a lot of good-sounding terms like mercy and empathy during medical school, but is any of them is applicable in the burn unit?  There was too much sorrow and pain to deal with.  Human lives were placed on the shelf without care from authorities.  On my first few days I was upset by every burn patient; however, this made me feel sick and frustrated, and I began to project my emotion on my family, friends and patients.  I realised that I would not able to manage patients properly if I continued dealing with this situation from this position, so I developed a new strategy: apathy.

In the past, I always considered apathy to be a malaise; but in the burn unit it became my salvation. more…

Are Doctors Who Know the Law More Likely to Follow it?

17 Aug, 16 | by miriamwood

Guest Post by Ben White and Lindy Willmott, Australian Centre for Health Law Research

This was the question we considered in a recent JME article about the role of law in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. The short answer is ‘yes’. The longer answer is also ‘yes’ – although our results suggest that doctors may be acting in a way that complies with the law but not doing so because of the law.

Our article, which is part of a wider project, reports on survey results from 649 doctors from New South Wales and Victoria (Australia’s two most populous States). The doctors surveyed were from the seven specialties most likely to be making end-of-life decisions: emergency, geriatric, palliative, renal and respiratory medicine, medical oncology, and intensive care. We asked these doctors questions to determine their legal knowledge and we also asked them to respond to a scenario where following the law (by respecting an advance directive) conflicted with a more clinically oriented approach.

Compliance with the law was low with only 32% of doctors following the advance directive. Of interest was that doctors who knew the relevant law were more likely to comply with it and follow the advance directive than those doctors who did not know the law. Initially we thought that this could indicate that legal knowledge might lead to legal compliance. However, we then examined the reasons doctors gave for decision-making and also the factors they relied on to understand whether law was seen as important or not by doctors in their deliberations.

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