Guest Post by Kerry Gutridge* and A.M. Calladine

Imagine you are a doctor, nurse or teacher and someone in your care asks for a razor.  The person you look after wants to slice into their own skin and draw blood. They are compelled to hurt themselves.  They have an overwhelming urge to feel a momentary visceral sense of pain.  Would you provide them with a blade?  Is it ever right to enable people in your care to harm themselves?

At first glance such questions may appear shocking and seem likely to elicit a strong gut reaction. Surely it can’t be right for people in a position of authority, with a duty of care to be seen to apparently condone or provide a means for vulnerable people to engage in such self-destructive behaviour?

Yet recent media reports (such as this and this) suggest that such a choice has already been made.  Teachers at Unsted Park gave a “special needs” pupil sterile Bic safety blades so they could injure themselves in the privacy of the school bathroom.  According to reports, staff checked in on the pupil every two minutes.  After the pupil had finished cutting teachers cleaned and dressed their wounds.

The news story attracted a predictable sense of outrage.  Readers commenting on newspaper message boards found the school’s decision at best incomprehensible and often disgusting and immoral.  According to the top-rated comments on the Daily Mail website:

That’s Nuts!  What’s wrong with these people??!!!

And

Absolutely shocking, I am by far an expert in the field but that sounds ridiculous to me

Unfortunately such feelings of revulsion and disgust are not limited to the comment boards of the Mail.  One of the authors of this blog was told by another academic that their doctoral abstract on the subject of self-harm made them feel physically sick.

The news reports on the case at Unsted School are vague.  The nature and severity of the pupil’s injuries are unclear and the age of the pupil is put between seven and nineteen.  Without more detailed information it would be disingenuous to comment at length on this specific case.  The Unsted Park School policy of allowing the pupil to self-harm has since been abandoned after some of the teachers complained to the local authority.

It is not the first time that the issue of institutional enablement or allowance of self-harm has been subject to scrutiny. more…

I’m running a bit late with this, but the BMJ reported last week that Mohammed Al-Byati had been suspended from the medical register for 12 months for complicity in torture.  So far, the decision hasn’t been uploaded to the list of Fitness to Practise decisions, but the outline of the case is available here, on the “upcoming hearings” calendar:

The Panel will inquire into the allegation that between December 1992 and March 1994, Dr Al-Byati visited camps and prisons in his capacity as a doctor in Iraq.  It is alleged that during these visits and whilst administering treatment, Dr Al-Byati knew that some prisoners he treated had sustained injuries as a result of torture, and it was likely that the prisoners would be tortured again.  It is also alleged that as a consequence of Dr Al-Byati’s engagement in these events, he was complicit in acts of torture.

The BMJ report relates that

the panel decided not to end his career by erasing him from the medical register, after accepting that he played no part in the torture and had effectively no choice but to carry out orders.  He told the panel that he had been “terrified” of what would happen to him and his family if he did not do as he was told.   The panel’s chairman, Michael Whitehouse, said, “He was a junior doctor whose behaviour was being controlled by a dictatorial, totalitarian regime which used systematic, widespread, and extremely grave violations of human rights to control the population.  Dissent from orders was not tolerated.

There’s a couple of things that’re perplexing about this.

The first is that it’s not clear how close to the torture process Al-Byati actually was.  The FtP outline simply alleges that he knew the people he was treating had been tortured, and that they probably would be again.  The BMJ repeats this.  Al-Byati appears to have denied knowing it, but it’s not clear to me that it’d've mattered if he had known: treating someone in those circumstances doesn’t amount to endorsement of the torture.

I mean: imagine that you’re working in A&E and someone is admitted whom you suspect strongly (strongly enough for it to count as knowledge in the common-or-garden sense) to have been injured as a result of domestic violence.  You patch up the patient, who then goes home – to face, you suspect almost as strongly, more violence.  It’d be nuts to suppose that you could be criticised as complicit in or even supportive of that violence, though, or that there might be something problematic about treating the patient in the knowledge of what had happened and may happen again.  At most, you might be criticised for not contacting the police or social servives; but that’s a question of confidentiality, and of a totally different stripe – and, anyway, to whom would Al-Byati have reported his concerns?

The other thing that’s perplexing is that noone claims that Al-Byati had any real choice in the matter.  It doesn’t seem unreasonable for a twentysomething medic to agree to provide medical treatment to those who need it, especially when it’s at the request of the state and that state is Ba’athist Iraq.  Maybe he could have refused in principle – but in practice, that kind of refusal may well have been heroic, and it’s odd to criticise someone for not being sufficiently heroic.

In both cases, consider the alternative.  The alternative for the patient is not being treated.  The alternative for the doctor is… well, who can say?  I doubt that there was much scope for conscientious objection.  And remember that the complaint is not that he assisted in the torture, but that he knew about it.

So why apply sanction?  Here’s Michael Whitehouse, the panel chairman, quoted in the BMJ:

He said that the suspension, for the maximum period allowed, was necessary “to demonstrate clearly to him, the profession, and the public that even though his involvement as an accessory to torture was outside his control, such conduct is unacceptable.”

Ummm… Really?  The emphasis is mine, because this is a very, very odd thing to say.  Treating people for the effects of torture is not to be an accessory in any meaningful sense – especially if you didn’t have a realistic choice.  And the pour encourager les autres claim in this context stinks.  I mean, as a principle of justice, my inclination is to think that it’s iffy at best in any circumstance.  But it’s not really as if anyone needs to have it demonstrated that state-sponsored torture is a bad thing to begin with.  And if, mirabile dictu, someone does need to be reminded of that, it’s not clear that they’re going to be swayed by demonstrations of foot-stamping like this.

Note that this case seems to raise questions similar to those raised in respect of medical involvement in capital or corporal punishment.  However, it’s also significantly different from what I can tell.  For one thing, in regimes in which capital or corporal punishment is used and the presence of a medic is mandated as an integral part of that process (for example, if the law demands that a lethal injection be administered by a medical professional), it seems to me that it’d be conceivable that minimally decent doctors would refuse participation, thereby bringing the whole process to a halt.  One might even imagine doctors refusing to be involved as a means of bringing the process to a halt – though you could, alternatively, make a rule-of-law case to insist that medics ought not to aim to undermine valid laws from valid sources, and draw a distinction between conscientious objection that makes the execution of a sentence (and a prisoner) impossible as a side-effect, and more activistic attempts to exert moral pressure on a notionally unjust law.

Whatever.  There’s a debate to be had there, but it doesn’t really speak to this case, because Ba’athist Iraq was not a rule-of-law regime, and (perhaps more importantly) non-participation wouldn’t – on the face of it – have made any real difference, because from the way the story is reported, the presence of a medic like Al-Byati wasn’t a part of the process.  That is: even if Iraq had been a rule-of-law regime, there’s a difference between treating someone who has been tortured and may be tortured again, and treating that person as a part of the torture framework.  There’s no reason to believe that the law required that the torture be overseen by a medic: only that he happened to be the guy closest to hand when the prisoners needed patching up.  Had he not been there, it’s all-too-easy to believe that the torture would’ve happened anyway.

Maybe I’ve missed something about the case.  But from the way it’s reported, it seems possible that the decision has been at least partially determined by the idea that Al-Byati is contaminated by association with bad people.  Either that, or because of PR concerns about the public perception of the matter should the “news”paper to which I do not link get wind of it.

I think that there’s more to be said.  There must be, mustn’t there?

The Liverpool Care Pathway provides a rubric for managing the care of the terminally ill as they approach death.  A helpful pamphlet explaining what it is and what it does is available here.  Ideally, I’d quote the lot; but for the sake of efficiency, I’ll make do with an edited quotation:

What is the Liverpool Care Pathway (LCP)?

The LCP is a pathway/ document that outlines this best care, irrespective of your relative/ friend’s diagnosis or whether they are dying at home, in hospital, in a hospice or a care home.

Medication/ treatment

Medication will be reviewed and any medication that is not helpful at this time may be stopped and new medication may be prescribed so that if a symptom should occur there would be no delay in responding.

It may not be possible to give medication by mouth at this time, so medication may be given by injection or sometimes if needed, by a continuous infusion by a small pump called a Syringe Driver, which will be tailored to individual needs.

It may not be appropriate to continue some tests at this time; these may include blood tests or blood pressure and temperature monitoring.

The staff should talk to you about maintaining your relative’s/ friend’s comfort; this should include discussion regarding position in bed, use of a special mattress and regular mouth care. You may want to be involved in elements of care at this time.

Diminished need for food and drink

Initially, as weakness develops, the effort of eating and drinking may simply have become too much and at this time help with feeding might be appreciated.

Your relative/friend will be supported to take food and fluids by mouth for as long as possible.

When someone stops eating and drinking it can be hard to accept, even when we know they are dying. It may be a physical sign that they are not going to get better. Your relative/friend may neither want or need food and/or drink and decisions about the use of artificial fluids (a drip) will be made in the best interests of your relative/friends for this moment in time. This decision will be explained to you and reviewed regularly.

This can be paraphrased further: medically futile treatment may be withdrawn; the main criterion for administering drugs will be symptom alleviation rather than life extension; some testing may be discontinued; it’s possible that there’ll come a point when artificial nutrition and hydration are no longer in the patient’s best interest, and they might be withdrawn if and when that point is reached.

None of this is particularly cheery; but death rarely is.  more…

A recent intercalating student of mine got in touch with this query the other day:

Total parenteral nutrition is given as a replacement for nutrition where the patient cannot or should not be digesting food: it is given intravenously so bypasses digestion.  Two patients have asked my current educational supervisor if the TPN solution is halal, and no-one, including the manufacturers, seems to know. There are various parts that are derived from animals but the manufacturers can’t say where from, even which animal seemingly.

The two relevant patients have been told the ‘don’t know’ answer and have agreed to continue taking the TPN but the team is now left wondering whether to tell all patients before they commence TPN that they do not know the origin of the products used and therefore the TPN cannot be guaranteed as halal, or indeed kosher either.

A pharmacist has also pointed out that beef gelatine is also used in many tablet coatings and this is generally never discussed with patients.

There is a suggestion in this paper that we should routinely be telling all patients about gelatine in tablets and IV infusions, which is definitely what my instinctual reaction agrees with.  The authors suggest that continuing not to do so would mean modern medicine “might be thought to be following the sort of self certain, paternalistic line that doctors were accused of decades ago in relation to Jehovah’s Witnesses”. I think that sums it up quite nicely!

Another interesting question comes from a legal point of view – of the regulations surrounding labelling of food products, which I think are increasingly strict, and the information provided by manufacturers about origins of medical products and then how much of that is communicated to patients.  (I think Margot Brazier might have mentioned this issue in our regulations seminar.)

Having chatted with the student in the pub since, we agree that, ethically at least, it’s a bit of a no-brainer: since it isn’t an imposition on anyone to warn that we can’t be sure of the origin of the treatment, there’s no harm in doing so – and, for the sake of preserving patients’ control over what goes into their bodies, we ought.

The legal question is potentially quite interesting here.  Going off on one a bit, could there be a negligence issue here – on the grounds that it’s reasonable to suppose that at least some patients might want to know the information, even if they don’t expressly say they would (because it never crosses their mind)?  Not to warn could be a serious omission here – and I’m wondering whether it might make a difference to consent.  I genuinely don’t know: were someone to make a case that they should have been warned and would not have consented had they known, would there be legal mileage in it?

Any thoughts, anyone?

There’s a great little article recently published in the BMJ about what it’s like to be the medic considering withdrawal of feeding from a neonate.

Survival is often much longer than most physicians think; reflecting on my previous patients, the median time from withdrawal of hydration to death was 10 days.

I had no idea it’d be that long.  I had no idea it’d be that long even for healthy adults who stopped drinking, let alone already-ill neonates.  (My scientifically-naïve intuition would have been that an adult body could stand up to more than an infant one.)

The fact is ethically neutral; and we need to be careful about skipping over the fact/ value boundary too easily.  But value claims bounce off, and are informed by, factual claims, and this is the sort of thing that might well be important when considering questions about withholding and withdrawing treatment, and about killing and letting die, and all the rest of it.

And, of course, the infant isn’t the only morally relevant actor in all this:

It is draining to be the most responsible physician. Everyone is looking to me to preside over and support this process. I am honest with the nurse when I say that it is getting more and more difficult to make my legs walk me on to this unit as the days elapse, that examining the baby is an indescribable mixture of compassion, revulsion, and pain.

I can see how that’d be.

Two apparently unrelated new and new-ish papers in the JME have caught my eye over the last few days.  One of them is this one: Salilah Saidun’s “Photographing Human Subjects in Biomedical Disciplines: An Islamic Perspective”.  We’ll come to the other in a little while.

There’s a couple of puzzling things about the paper.  One is that I’m not sure what the tone is supposed to be.

It could be a descriptive piece, along the lines of “Look, here’s what Muslims might think about medical photography, and if you’re going to take or use medical photographs, you might want to keep it in mind.”  Of course, it’s by no means certain that all Muslims think alike, or that if (mirabile dictu) they do, it has anything much to do with Islam – but we’ll put that to one side.  Similarly, the fact that some people do think this won’t tell us much about what practical implications there ought to be, beyond keeping it in mind.  It won’t tell us that we ought to adhere to those opinions.  Islamic rules might provide a reason to behave in a certain way; but there might be other reasons to behave in a certain other way - and they might sometimes be more compelling.  I’ll put that to one side, too, though.  As a descriptive paper, it might very well be the sort of thing that’s useful on the wards.

But a descriptive reading won’t explain the passages that appear to have a more normative dimension: more…

So the JME has – finally – published the paper by Brierley et al concerning withholding and withdrawal of futile treatment from children in the face of doctrinally-informed objections by the parents.  It’s taken a while, but it’s there now.

The essence of the paper’s claim is pretty simply put: if parental preferences run contrary to the medical best interests of the child, then we shouldn’t be too hesitant when it comes to discounting those preferences.  Or, as the paper’s conclusion has it:

Traditional mechanisms for resolution of end-of life disagreements based upon local cultural, secular or religious values [are] not infrequently unsuccessful.  Protracted dialogue [is] often unable to resolve these differences, while the child [is] subject to pain and discomfort from invasive ventilation, suctioning and multiple injections.  We suggest it is time to reconsider current ethical and legal structures and facilitate rapid default access to courts in such situations when the best interests of the child are compromised in expectation of the miraculous. [Emphasis mine - IB]

And this, it seems to me, seems fairly straightforward – albeit quite a limited claim about legal process.

Granted, there is a couple of niggles that one might have with the paper.  For example, the authors concede that those parents most likely to object to decisions to end treatment are those from African Evangelical churches.  But since members of those churches are more likely to be immigrants, or from other less privileged parts of the community, I wonder whether it’s religion that’s the main signifier here: it might equally well be class.  Or it might be other things.  (Mark Sheehan makes a similar point – that religion may be a red herring – in his commentary on the paper.)  Either way, what counts is a fairly straightforward question about what we should do when it comes to deciding best interests in life-and-death situations.  (Steve Clarke offers suggestions about what to do in his commentary.)

I wonder whether the appeal to torture and the Human Rights Act might be a bit of overkill in at least some cases, too.

But a bigger worry might have to with a paradox of publicity.  more…

From Ralf Jox (Munich)

Call for Abstracts: “Clinical ethics: bridging clinical medicine and ethics”.

The Ninth International Conference on Clinical Ethics Consultation (ICCEC) 2013 will take place in Munich, Germany.

The conference’s intention is to strengthen the bridge between clinical medicine and ethics by providing a forum for the exchange of experience and discussions between clinicians, ethicists and ethics consultants.  In particular, the conference will feature
“role model consultations” based on real clinical cases from intensive care, dementia care, and oncology.  In addition, plenary sessions will focus on the needs for
ethics consultation from the perspective of clinicians and connect them to the experience of ethics consultants.  Ample time will also be provided for free oral or poster contributions based on an abstract competition.

All colleagues interested in ethics and medicine from all over the world are invited to
make the ICCEC 2013 a lively experience and a forum for fruitful exchange and helpful information.

The Scientific and Advisory Committees have identified the following four topic areas of interest: more…

Remember a little while ago there was a rash of proposals in the US that’d force women to see a sonogram of the foetus, or to listen to detailed descriptions of it, before having an abortion?

Yeah: them.  Well, via Ophelia, here’s an account of what really happens.

Halfway through my pregnancy, I learned that my baby was ill. Profoundly so. [...] “I’m worried about your baby’s head shape,” she said.  “I want you to see a specialist—now.”

[... B]efore I’d even known I was pregnant, a molecular flaw had determined that our son’s brain, spine and legs wouldn’t develop correctly.  If he were to make it to term—something our doctor couldn’t guarantee—he’d need a lifetime of medical care.  From the moment he was born, my doctor told us, our son would suffer greatly.

So, softly, haltingly, my husband asked about termination.  The doctor shot me a glance that said: Are you okay to hear this now?  I nodded, clenched my fists and focused on the cowboy boots beneath her scrubs.

She started with an apology[...]

That’s not a good start, is it?  An expression of sympathy, maybe.  But an apology?  It’s as if she knows that things are about to get worse.  And they are. more…

There’s a flurry of papers on conscientious objection in the latest JME: Giles Birchley argues, taking his cue from Arendt, that conscientious objection has a place in medicine here; Sophie Strickland’s paper on medical students’ attitude to conscientious objection (which I mentioned in July) is here; and Morten Magelssen wonders when conscientious objection should be accepted here.

All this is coincident with the recent passing of the “Protection of Life” Bill by the American House of Representatives.  This also has a significant clause about conscientious objection: I’ll come to that  in a little while.

Magelssen claims that conscience is important for integrity, and there is a social interest in protecting integrity.  His position is that objections should be accepted if

1. Providing health care would seriously damage the health professional’s moral integrity by (a) constituting a serious violation (b) of a deeply held conviction.

2. The objection has a plausible moral or religious rationale

3. The treatment is not considered an essential part of the health professional’s work

4. The burdens to the patient are acceptably small ((a) The patient’s condition is not life-threatening; (b) Refusal does not lead to the patient not getting the treatment, or to unacceptable delay or expenses (c) Measures have been taken to reduce the burdens to the patient)

5. The burdens to colleagues and healthcare institutions are acceptably small

As elaboration, he claims that ”[a]n objection does not have a plausible rationale if it is based on erroneous factual premises”.  more…