Guest post by Daniel Sokol, barrister at 12 King’s Bench Walk / King’s College London.

Eight years after coming into force, the Mental Capacity Act 2005 has finally reached the scrutiny of the Supreme Court in Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67.

David James was a professional musician, and a family man.  He had three children, three grandchildren, and many friends.  In May 2012, he acquired an infection in hospital which resulted in his admission to the critical care unit.  He was put on a ventilator.  In the following months, his condition fluctuated.  At one point, his heart stopped and he required 6 minutes of CPR.  He later underwent a tracheostomy, and received artificial nutrition and hydration.  Two months after his admission in hospital, he lost the capacity to make decisions about his medical treatment.  In spite of this, Mr James was able to recognise his wife and son, to kiss them, to follow their movements with his eyes, and, on occasion, to smile.  His prospects of leaving the hospital were nonetheless slim.

In September 2012, the hospital sought a number of declarations from the Court of Protection, one of which was that it would be in Mr James’ best interests not to receive certain treatments, including CPR, in the event of his deterioration.  The family disagreed.  They felt he still enjoyed life and that, each time he contracted an infection, he managed to pull through.

The judge at first instance refused to make the declarations.  He did not consider the treatments to be futile or unduly burdensome.

The hospital trust appealed to the Court of Appeal.  By then, Mr James’s condition had deteriorated dramatically.  He was comatose, or semi-comatose, and completely ventilator-dependent.  The Court allowed the appeal and made the declarations.  On 31^st December 2012, Mr James suffered a cardiac arrest and died.

Mr James’s widow appealed to the Supreme Court. more…

Guest post by Morten Magelssen, Reidar Pedersen, and Reidun Førde

Read the full paper here.

A difficult case involving a patient in an intensive care unit is brought to a clinical ethics consultant.  The ethics consultant argues that intensive care is futile and should be withdrawn.  The clinicians are grateful for the advice, and, with the assent of the patient’s relatives, decide to withdraw intensive care accordingly.

Clinical ethics consultation – by committees or individual consultants – involves reflection upon ethically and medically challenging cases.  When reflection is carried out in a systematic manner, then ideally the ethically salient points are brought out and discussed in a comprehensive and unbiased way.

But what if the consultation itself introduces new biases and implicit value judgments?  We won’t take a stand on how often this in fact happens, but rather draw attention to how easily it may occur and the dangers involved.  In our JME article we identify six sources of bias – or conflicts of interest – in clinical ethics consultation. For instance, in the case above, the ethics consultant could be biased towards the interests of health-care professions, or towards the hospital’s interests in keeping costs down and maintaining an unblemished public image.  In general, we argue, the potential for harmful biases is greater when the consultation is performed by an individual consultant rather than by a committee.

The introduction of new, harmful biases through ethics consultation, a process intended to reduce biases, would be problematic (and somewhat ironic).  Especially considering that, in the eyes of clinicians, the conclusion and advice of ethics consultation may appear to bear a stamp of ”ethically approved”.

We are fundamentally optimistic about the positive role clinical ethics consultation can play in aiding clinicians in the management of ethically complex cases.  However, ensuring the quality of clinical ethics case deliberations is vital.  Although biases can never be completely eradicated, the identification of potentially significant biases is an important part of quality improvement.

Guest post by Daniel Sokol, KCL

For some time, I have been interested in the relationship between magic and medical ethics.  Five years ago, I gave a talk in Prague on how to use magic in medical ethics education.  More recently, I held a workshop on Magic for Anaesthetists, which touched on ethical issues in anaesthesia.  My latest ‘guest’ lecture is entitled Magic, Medicine and Medical Ethics and examines the ways in which the work of professional magicians can shed light on the art and ethics of medicine.

This blog is for those who teach medical ethics.  It explains how a magical effect can help convey ideas in a memorable and thought-provoking way.  I am grateful to Gerry Griffin, a fantastic card magician from the United States, for permission to use one of his effects.  I respectfully ask readers to keep the secret to themselves.

more…

Apologies for my long absence – moving to Australia turned out to take up quite a bit of time, and make it hard for me to access and write on the blog… Still now I am here and in far more practical role than my previous appointment (I’m now in a medical school rather than a philosophy department) I thought I might make a relatively practical post…

A medical treatment cascade is where one intervention leads to another and another and so on. Theses can occur in several contexts, for example with my first wife Kerry who had Cystic Fibrosis, she took morphine to aid her breathing. This had the side effect of causing her severe nausea for which she took another drug which itself had side effects of dizziness and lightheadedness for which she took another drug to counter act (ironically this other drug actually blocked the receptors that morphine works on rendering it useless as a treatment in the process, something we discovered only after a review of all her medication a year later). Likewise it can be the case that a routine scan picks up on something that wasn’t being searched for, and that this leads to an operation which itself has complications to remove something that may well be benign.

However perhaps the most well known treatment cascade is in regards to the delivery of children in hospital, which is commonly referred to by the natural birth movement as the cascade of interventions. (While I don’t intend to endorse everything the natural birth movement suggests – particular the more radical fringe who are in favour of unattended birthing – nonetheless, research seems to support the existence of this phenomena). The cascade here happens in part because of the psycho-social aspects of child birth (in particular that feeling comfortable, confident and relaxed contributes to smoother births) and in part because some interventions improve safety in some regards but simultaneously are likely to hinder progression of labour. The classic cascade of interventions in child birth goes like this.

In the early stages of labour you arrive at the hospital wanting a relatively natural birth in a safe environment. You are offered continuous fetal heart monitoring to determine whether the foetus is distressed at any time and thus whether the process needs to be hurried along, which you consent to because of course the safety of your child is paramount to you. This either involves having a belt strapped around your waist or involves having an electrode “attached” to the head of the infant – in either case this significantly limits the ability of the woman to move around, change position and be comfortable, making it likely to delay the progress of labour. So given that labour doesn’t appear to be progressing six hours later you are offered pictocin to induce labour and hurry things along. This works however one of the side effects of pictocin is significantly increased levels of pain, and while you had intended to not have pain killers, you reluctantly consent to an epidural after another 3 hours because it is simply too much for you. This has the effect of removing the pain, but also your ability to feel what is happening “down there”, so progress again stalls. Later exhausted after 36 hours of labour you consent to a caesarian section – with typically much higher risk of death and worse outcomes for both the mother and the child.

There isn’t much work on these treatment cascades in the ethics literature, but they seem to me to be of moral concern for three reasons: 1. they predictably lead to unwanted/worse outcomes for patients, 2. resource allocation, and 3. Informed consent.

I’m going to focus on informed consent but I will briefly describe the ethical issues in regards to the first two concerns. So firstly we might be concerned about reducing or minimising treatment cascades for patients because they are typically associated with worse or unintended outcomes. Now of course not all cascades are predictable, but where they are this gives us a reason to at least attempt to minimise them. Secondly treatment cascades are also problematic in terms of resource allocation, because typically they lead to sub-optimal outcomes (in the case of pregnancy C-section rates are far higher than they should be in most Western countries and this predictably leads to worse outcomes) and because each step along the cascade represents an investment of health care resources (another reason why we shouldn’t think about resource allocation as a series of one off cases) leading in the worst case (for example as happened with Kerry) a significant waste of resources where money is being expended for literally no patient benefit, since the various treatments simply cancel each other out.

The reason that treatment cascades are worrying in regards to informed consent is that while you consent to the first treatment, you do not consent (at that stage) to the further treatments it leads to. This is problematic because typically cascades present as emergency or urgent situations and hence the quality of consent can be quite low, with the patient feeling rail roaded into a particular decisions because the treatment is needed. This is particularly problematic when the risks of each intervention are progressively higher and more serious, since the initial decision seems so low risk that it may have been made relatively lightly without reflection on the possible consequences, but ultimately leads to a high risk decision.

So what can be done?

First and most obviously we can resist ending up in cascades in the first place – this is particularly the case when the initial intervention which leads to the cascade is of minimal medical value – in the case of routine continuous fetal monitoring for example outcomes are no better than that of traditional methods of monitoring the child’s heart rate intermittently – via either listening with a pinard stethoscope or via doppler – while they may improve outcomes when there is reason to already be concerned, as a routine measure they decrease rather than improve outcomes. The main benefits are managerial – a smaller team can manage more women using continuous fetal monitoring because they don’t need to be present regularly to check heart rates – but that doesn’t seem an overwhelming reason for recommending what is arguably a worse standard of care. But of course not all interventions that lead to cascades are of this nature. In these cases I’m inclined to think it would be better practice if the risk of the cascade was flagged up front for the patient, so that the initial consent contains some awareness of the possible risks down the track. While this will still be non-ideal in terms of informed consent, it is at least better.

Having asked out loud whether anyone could explain a couple of odd FtP decisions, I got this from Nathan Emmerich, offering sociological pop at an answer… 

Iain wondered if anyone could explain the morality that underlies a couple of recent Fitness to Practise decisions made by the GMC.  Well, more accurately he wondered if anyone could explain the “public perception” or “public confidence” aspect of the GMC’s Fitness to Practice guidelines.  Never one to shirk a challenge, I thought I would give it a go…

The first thing to note is that one has to change, or perhaps expand, the terms of the debate.  As a discipline applied philosophical bioethics tends to focus on “ethics”, “ethical reasoning” and codified rules over what I (and some others) would call “morality”.  For our present purposes the starkest way to express the idea is by appeal to the historical morality of the UK medical profession, which used to be based on the idea of the British gentleman of a certain class and standing (and, obviously, race and gender).

This morality was uncodified – it had no explicit ethics.  Indeed, more than this, it was held to be uncodifiable both in principle and as a matter of morality.  It was thought it would be wrong to codify gentlemanly (medical) morality as to do so would open the way to, first, individuals who merely followed rules rather than being the correct sort of persons or having the right character.  Second, it would lead to people who did not have the right character or standing attempting to second-guess the decisions of medical professionals or gentlemen.  Such a thing was, of course, intolerable.

There is no denying that there was a lot wrong with this ‘moral culture’, and a range of factors has been influential in the modification of medical morality from this historical position to the one we have today.  However, “medical morality” has vanished completely, indeed, it is impossible for it to do so: the medical profession (indeed any profession or cultural group) has some underlying moral ethos.  Some cultures, like modern medicine, may also have explicitly stated ethical codes and guidelines that may be more or less in line with the underlying moral culture.  Nevertheless the moral culture itself is not obviated by these codes.  Indeed it underpins the existence and application of any such formally stated ethics.

The problem here is that no rule contains the principles of for its own application.   more…

***UPDATE: Important codicil at the end***

Back in March, I posted something about what I took to be a slightly odd Fitness to Practise decision by the GMC in respect of one Mohammed Al-Byati.  Via the BMJ, here’s another case that seems a bit strange:

A doctor who abducted her six year old daughter from her estranged husband nearly two years ago and took her to Pakistan has been struck off by a panel of the Medical Practitioners Tribunal Service (MPTS).

[...]

The MPTS panel, sitting in Manchester, acknowledged that Dar’s conduct did not relate to her medical practice.  But panel chairman Michael Whitehouse said that misconduct could also involve conduct “of a morally culpable or otherwise disgraceful kind,” which could prejudice the reputation of the profession.

The emphasis is mine, though it’s the stuff about the “reputation of the profession” that intrigues me.  If Dar has breached a court order, or is a kidnapping suspect, then fine – but that’s a matter for the courts.  She perhaps wouldn’t be able to practice if found guilty and imprisoned, but that’s a different matter.  It’s not obviously the GMC’s business.

Now, sometimes a profession might have an interest in disciplining people who misuse their association with it.  more…

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?