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The Art of Medicine

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.

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…

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…

The Challenge of Futile Treatment

29 Jul, 16 | by Iain Brassington

Guest Post by Lindy Willmott and Ben White

For decades, researchers from around the world have found evidence that doctors provide futile treatment to adult patients who are dying.  Some discussion of this topic has turned on matters of definition (see our recent contribution to this debate), with a broader concept of “perceived inappropriate treatment” being favoured by commentators more recently.  However, this debate skirts the fundamental issue: how can treatment that may prolong or increase patient suffering, waste scarce health care resources, and cause distress to health care workers still occur in hospitals around the world?  In other words, in these days of overworked doctors and underfunded healthcare systems, how is this still an issue?

Some research has tackled this although it has tended to focus on doctors operating in intensive care units and there has been very little research which looks at the reasons given by doctors from a range of specialties about why futile treatment is provided at the end of life.

Our study, undertaken by a team of interdisciplinary researchers, explored the perceptions on this topic of doctors, from a range of specialities, who are commonly involved with treatment at the end of life.  We interviewed 96 doctors at three hospitals in Queensland, Australia, from a range of specialities including intensive care, oncology, internal medicine, cardiology, geriatrics, surgery, and emergency.  Doctors reported that doctor-related and patient-related factors were the main drivers of futile treatment, although reasons relating to the institutional nature of hospitals were also important.

We found that doctor-related reasons were important in the provision of futile end-of-life care.  Many doctors reported attitudes of their colleagues that reflect a cultural aversion to death.  Doctors saw themselves as trained healers who viewed every death as a failure, and pursued a cure rather than appropriate palliative treatment for dying patients.  Doctors described wanting to help the patient and not give up hope that a treatment might provide some benefit.  They also said they wanted to satisfy patients, families, and medical professionals themselves that everything possible had been done, due to both emotional attachment to the patient and fear of the legal consequences of refusing demands for treatment.  They also admitted to providing families and patients with a smorgasbord of treatment options as a means of avoiding uncomfortable conversations about dying.  Doctors’ personalities, religious backgrounds, and their own experiences with death and dying were also said to contribute to the giving of futile treatment. more…

There’s Argument, and there’s Disputation.

7 Jun, 16 | by Iain Brassington

Very well, then: let’s allow that the quality of argument in bioethics – and clinical ethics in particular – is not of high quality.  What should be done about it?

That’s a hard question, though it’s predictable and wholly justifiable that it should be asked.  And, to be honest, I don’t know offhand.  I might have a few germs of ideas, but nothing that I’d be prepared to mention in public.  That doesn’t mean that I can’t look at other ideas, and test them out.  One such idea is mooted in this paper by Merrick et al: in essence, they propose a sort of debating competition.  They begin by explaining – with some plausibility – some of the factors that make it a bit hard to get full-blooded engagement with ethics in the medical curriculum:

As educators, we have observed additional challenges medical students face in their ethics education, which echo others’ experiences. First, because of the prodigious amount of information medical students are presented with during their first two years of training, they typically adopt a strategy of selectively reading assignments, attending large lectures, and participating in small group discussions.  In this context, ethics appears to be deprioritized, because, from the students’ perspective, it is both more demanding and less rewarding than other subjects.  Unlike other subjects, ethics requires students to reflect on their personal moral sensibilities in addition to understanding theory and becoming familiar with key topics and cases.  Yet, also unlike other courses, poor marks in ethics rarely cause academic failure, given the way performance in medical school curricula is typically evaluated.  Thus, ethics is both more demanding—because of the burdens of self-reflection—and less rewarding—because excellence in ethics does not contribute significantly to grades or test scores.

Second, medical students face challenges in how they individually conceptualize the value of ethics in the medical context.  Although many indicate that morality is important to them, they also suggest that it is a subject matter that relates to their personal, as opposed to professional, actions.  Instead, students often conflate the domains of institutional policy and health law (especially risk management and malpractice litigation) with medical ethics.  Although these domains are obviously also of essential concern for future physicians, they remain distinguishable from ethical issues likely to emerge in practice.  Consequently, rigorous and effective ethics education within the medical school context faces the challenge of distinguishing ethics from other aspects of professionalism.

Too often, ethics gets run alongside communication skills training (well, it’s all about getting informed consent, isn’t it?  Eh?  Eh?); and I’ve lost count of the number of times I’ve been asked to prepare multiple choice questions for ethics assessment.  (Standard answer: nope.  It’s got to be an essay of some sort, or it’s not worth doing.)

So what to do?  The paper, as I’ve already said, suggests a quasi-competitive debating competition, in which teams of students are given a problem, and a limited time to make a case in response to that problem.  An opposing team then has a limited amount of time to place a counterargument.  Then they swap roles, so the counterarguing team gets to make the argument, and the previous arguers now become counter-arguers.  Judges can ask questions, and assign a score.  “The basic aim of the MEB curriculum,” the authors say,

is to help students learn how to produce and present an argument for an ethical position in response to a realistic clinical situation.

Hmmmmm.

Every now and again I get asked to help judge debating competitions – sometimes for academic institutions, sometimes for non-University bodies, sometimes for others (*cough* Instituteofideas *cough*).  I used to be happy to help out.  But I’m not so sure now. more…

Patient Views about Consent, Confidentiality & Information-Sharing in Genetic Medicine.

29 Apr, 16 | by BMJ

Guest post by Sandi Dheensa, Angela Fenwick and Anneke Lucassen

Imagine you’re a clinician in genetic medicine.  For a while, you’ve been seeing Joe Bloggs, a patient with a mutation in a gene that’s caused a hereditary form of colon cancer.  As is your standard practice, you help Joe identify who in his family is also at risk and spend some time talking about how he’ll tell them.  The Bloggs’ are a large bunch: Joe has children, siblings, nieces, nephews, aunts, uncles, and cousins, all of whom might have the mutation.  Anyone who tests positive would be eligible for regular bowel screening, which – while not pleasant – makes it much more likely that any cancer will be caught at a  treatable stage.  Unfortunately, despite all this, you’ve reason to believe that Joe hasn’t told his relatives anything and now you’re unsure what to do.

What are your options?  You might say Joe’s confidentiality and autonomy are paramount: it’s up to him what he does, and, as his doctor, you’ve done your part by telling him the cancer is heritable.  Or you might argue that Joe’s family needs to know – but how  and when?  The GMC says you can share a patient’s personal information without consent if the benefit of doing so outweighs the risk: does the situation meet this criterion?  What if you share the information and Joe sues you for breaching his confidentiality?  But what if you don’t say anything and a relative develops a cancer that could’ve been prevented?  Won’t their trust in the health service be shaken if they knew you’d chosen not to share?  Indeed, the UK and Netherlands have recently seen cases where relatives  questioned the health service’s non-disclosure of relevant information.

Taking a “joint account” view of confidentiality from the outset would’ve avoided these situations.  The joint account involves viewing genetic and personal information as distinct: the possible inheritance of cancer is common to the whole Bloggs family, but that Joe has stage III bowel cancer is personal.  If genetic information is confidential to the family, not just the tested patient, you’d have told Joe upfront, before even drawing his blood, that you’d look into sensitive and appropriate ways to let his relatives know the information if they might benefit from it.  Later down the line, when it materialised he hadn’t told his family, it would’ve been easier to negotiate what to do.

In our recent JME paper, we explored the views of people affected by hereditary cancer and other conditions regarding the distinction between genetic and personal information, the levels of confidentiality afforded respectively, and healthcare professionals’ roles and responsibilities toward their patients’ relatives.

In line with the joint account approach, our interviewees considered their signs, symptoms, and diagnoses as personal, but thought genetic risk was familial and that their relatives needed to know about it. more…

How We Feel about Human Cloning

7 Apr, 16 | by BMJ

Guest post by Joshua May

Suppose you desperately want a healthy child to build a family of your own.  As is increasingly common, however, you can’t do it naturally – whether from infertility, a genetic disease you don’t want to pass on, or a non-traditional relationship.  If you seek a genetic connection with the child, there are some limitations to the main alternatives: adoption, surrogacy, and in vitro fertilization.  You may yearn for more options.

How would you feel about cloning?  Take the nucleus of a cell from yourself or a loved one, then put it into an egg that will eventually develop into a baby that shares nearly all the genes of the donor cell.  The resulting baby will simply be a kind of ‘delayed twin’ of the donor.

Most people believe this is immoral.  There’s a bit more support for therapeutic uses that merely create new tissue, for example.  But, at least in the US and UK, people overwhelmingly condemn cloning for the purposes of creating new human lives.  In fact, a recent poll suggests there is little disagreement in America over this issue, where human cloning is among the most widely condemned topics (alongside polygamy and infidelity).

That’s what people think, but how do they feel?  Controversial bioethical issues often generate intense feelings.  Some bioethicists treat cloning in particular as a line in the sand that we mustn’t cross, for fear of sliding down a slippery slope to a dystopia.

Consider Leon Kass, who played a major role in public policy as chair of George W. Bush’s President’s Council on Bioethics.  Kass argues that there is wisdom in repugnance toward human cloning, allowing us to ‘intuit and feel, immediately and without argument, the violation of things that we rightfully hold dear’.  As opposed to mere unease or sadness, Kass and some others have argued that disgust is such a powerful and distinctive emotion that we should take it seriously as a moral guide when deliberating about ethical issues.

An empirical claim lurks.  Such bioethicists assume that people in general share their reaction of repugnance. Besides, if we can uncover the emotional reactions people tend to feel toward disputed moral issues, then we can better understand why they hold the beliefs they do.  Does the prospect of cloning humans make us sick?  Scared?  Sad?  Angry?  Excited?  At ease?

In my paper, I provide some initial evidence that people (at least in the States) feel primarily anxious and curious about human reproductive cloning.  These were the most frequently self-reported negative and positive emotions, not disgust, fear, sadness, anger, excitement, amusement, comfort, or joy. more…

Nurses Cannot be Good Catholics

31 Mar, 16 | by BMJ

Guest Post by John Olusegun Adenitire

It seems that if you are a nurse you cannot be a good Catholic.  Or, better: if you want to work as a nurse then you might have to give up some of your religious beliefs.  A relatively recent decision of the UK Supreme Court, the highest court in the country, seems to suggest so.  In a legal decision that made it into the general press (see here), the Supreme Court decided that two Catholic midwives could not refuse to undertake administrative and supervisory tasks connected to the provision of abortions.

To be sure, no one asked the nurses to directly assist in the provision of abortions.  The Abortion Act 1967 says that “No person shall be under any duty … to participate in any treatment authorised by this Act to which he has a conscientious objection.”  The Nurses argued that this provision of the Act should be understood widely.  Not only should they be allowed to refuse to directly assist in abortion services: they should also be entitled to refuse to undertake managerial and supervisory tasks if those were linked to abortion services.  The nurses’ employer was not impressed; neither was the Supreme Court which ruled that the possibility to conscientiously object only related to a ‘hands-on’ capacity in the provision of abortion services.

In a recent paper in the JME (available here) I have argued, albeit only indirectly, that this decision is only half-correct.  Nurses and other medical professionals have a human right to object to the provision of a wide range of services which they deem incompatible with their conscience.  I say that the decision of the Supreme Court is only half-correct because the Court explicitly avoided investigating the possibility of the nurses’ human right to conscientious objection.  Under the Human Rights Act, individuals have a right to freedom of conscience and religion.  That right may, in appropriate circumstances, entail the right for nurses to object to being involved in administrative and supervisory duties connected with abortion services.  If you ask me how the Supreme Court avoided having to consider the nurses’ human right to freedom of conscience and religion I couldn’t tell you.  I bet neither could any of the Law Dons at Oxford.

I realise that by appealing to human rights I am not necessarily making the nurses’ case any more deserving of sympathy that it already is(n’t). more…

Mature Content?

27 Feb, 16 | by Iain Brassington

There’s an aisle at the supermarket that has a sign above it that reads “ADULT CEREALS”.  Every time I see it, I snigger inwardly at the thought of sexually explicit cornflakes.  (Pornflakes.  You’re welcome.)  It’s not big, and it’s not clever: I know that.  But all these years living in south Manchester have taught me to grab whatever slivers of humour one can from life.

Anyway…  A friend’s FB feed this morning pointed me in the direction of this: a page on Boredpanda showing some of the best entries to the 2016 Birth Photography competition.  (Yeah: I know.  I had no idea, either.)

I guess that birth photography is a bit of a niche field.  The one that won “Best in Category: Labour” is, for my money, a brilliant picture.  Some of the compositions are astonishingly good – but then, come to think of it, childbirth isn’t exactly a surprise, so I suppose that if you’re going to invite someone to photograph it, they’re going to have plenty of time to make sure that the lighting is right.

A second thought that the pictures raise is this: no matter how much people bang on about the miracle of birth… well, nope.  Look at the labour picture again.  I can’t begin to express how glad I am that that’s never going to happen to me; and I’m even more convinced than I was that I don’t want to play any part in inflicting that on another person.

But my overriding response is something in the realm of astonishment that some of the pictures are blanked out as having “mature content”.

I mean… really? more…

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