Guest Post: Sarah Wieten

The recent article, “Some Social Scientists Are Tired of Asking for Permission” in the New York Times inspired a great deal of debate about the role of institutional research ethics board (IRB) oversight in social science, which some argue is in most cases unlikely to involve significant harm to participants.

While the role IRBs play in sociological research is being re-examined, the importance of IRB oversight for medical research was not similarly called into question. But what exactly does IRB oversight in medical research involve? Should these groups be content with assuring that patients and participants in medical research have provided informed consent? Or do they have wider duties? What is the relationship between methodologically rigorous science and ethical science?

The approval of research projects by IRBs is an integral part of the conduct of research in universities. IRBs ensure that all research follows key ethical guidelines and is pursued for good reason, and in doing so, they aim to keep patients and participants out of harm’s way. IRBs are important gatekeepers of institutional research, and serve as a check on the work of scientists, physicians, and others who are pursuing new knowledge.

We would assume then, that people serving on IRBs have a clear understanding of relevant research design. That way, they can check the research for ethical issues stemming from the methodology. They can also make sure that methodologically poor studies do not proceed, as this would be an unethical waste of resources (and would put participants at risk without a reasonable prospect of gaining reliable knowledge in exchange).

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For a few reasons, I’ve been thinking a bit over the last few months about professionalism and professional codes.  In fact, that’s the topic that’s attracted most of my attention here since… oooh, ages ago.  I find the idea of a code of professional ethics troubling in many ways, but also fascinating.  And one of the fascinating questions has to do with what they’re for.

They can’t be meant as a particularly useful tool for solving deep moral dilemmas: they’re much too blunt for that, often presuppose too much, and tend to bend to suit the law.  To think that because the relevant professional code enjoins x it follows that x is permissible or right smacks of a simple appeal to authority, and this flies in the face of what it is to be a moral agent in the first place.  But what a professional code of ethics may do is to provide a certain kind of Bolamesque legal defence: if your having done φ attracts a claim that it’s negligent or unreasonable or something like that, being able to point out that your professional body endorses φ-ing will help you out.  But professional ethics, and what counts as professional discipline, stretches way beyond that.  For example, instances of workplace bullying can be matters of great professional and ethical import, but it’s not at all obvious that the law should be involved.

There’s a range of reasons why someone’s behaviour might be of professional ethical concern.  Perhaps the most obvious is a concern for public protection.  If someone has been found to have behaved in a way that endangers third parties, then the profession may well want to intervene.  For example: if an HCP knew herself to be a carrier of a transmissible disease but did nothing about it, this would quite plausibly be a matter for professional concern, irrespective of what the law says, or whether anyone had been harmed.  The same would apply if we discovered that a surgeon was unable to function without a large brandy to settle his nerves.  But we’d want to make sure that the professional concern was for the right thing.  It would be inappropriate to sanction someone merely for being a carrier, or for being alcohol dependent.  (Along these lines, it seems defensible to me not to have suspended Martin Royle, a surgeon who falsified prescriptions in order to satisfy his addiction to painkillers.  It’s better to treat an addiction than to punish it.)

A second reason is for the sake of collegiality.  For example, there’s nothing illegal about being  a racist, and there probably shouldn’t be; but it is at the very best distasteful.  Imagine you discover that your colleague is an abiding racist.  It is not hard to see how this knowledge might have implications for your professional interactions – especially (but not only) if you’re a member of one of the groups to which your colleague has a demeaning attitude.  (Indeed, the same might be true if he had used to be a racist, but had changed his attitudes.  I suspect that that’s the sort of thing that might have a fairly long half-life.)  Now imagine that your colleague is a frequent attendee at rallies, held in support of racist policies, that are often associated with threatening behaviour: he doesn’t just dislike some people, but is visibly hostile to them.  That, it seems to me, might be a matter of professional concern, because it will predictably make the working environment much more difficult.  It would be harder to trust this colleague (again, especially but not only if you happen to be a member of one of the groups he hates).  That might be sufficient to raise worries about whether he’s a fit person to do the job in question.  Again, though, there’d have to be a proviso: there is a difference between one’s professional abilities and one’s personal attitudes, and between how one behaves in and out of work.  A surgeon is a surgeon for all that.  So there is a genuine problem here concerning what to do.  But a genuine problem means that there is a cause for concern.

(Indirectly, this second concern might have something to do with public safety, too.  A surgical team in which people are uncomfortable working along side each other may be one in which patient outcomes are affected.  But that would be a further matter, and would not have to collapse into the safety point.  Imagine that the profession is accountancy: it might still be that members of the group would simply be intolerably uncomfortable working alongside their racist colleague, although the audit will still be done perfectly well.  The same will apply in any profession.)

But there’s another factor, which is the status of the profession.  To what extent are professional ethics codes and bodies that judge professionalism in the business of protecting themselves and their high social status?  A couple of recent cases raises that question. more…

Julian Savulescu

Dominic Wilkinson’s Response

A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering.

His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.

“It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”

This is a profoundly difficult decision, and one in which all parties are acting out of care and compassion for the child. My comments are of course limited as I do not have access to all the relevant facts. However, it does raise an important question about the current basis of such decisions.

Ethics of Limitation of Life Prolonging Medical Treatment

In general, medicine has a presumption in favour of saving life, or prolonging life. There are three justifications for departing from this default. That is, there are 3 justifications for withholding or withdrawing life prolonging medical treatment:

1. the patient autonomously refuses it. (autonomy)
2. continued life is no longer in the patient’s interests (best interests)
3. the probability of the treatment prolonging life, or the quality of life, or the length of time the patient can surVive are too low to justify the cost of the attempt (distributive justice)

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Dominic Wilkinson

The speculation about Donald Trump’s mental health that was doing the rounds earlier in the year seems to have died down a bit.  That’s to be expected; like it or not, his Presidency is now part of normal life.  But I’ve been lagging in my blogging here, and so it’s only now that I’ve got a moment to mention in passing an op-ed article about Trump in the New Scientist that appeared just after I posted last on the topic.  (February.  I know, I know.)

It’s by Allen Frances, and it takes issue with what he calls “armchair diagnosis” of the president.  He’s right to say that there’s something disquieting about armchair diagnosis: “psychiatric diagnosis is already done far too casually and inaccurately in medical and mental health practice.  Armchair diagnosis further cheapens its currency.”  However, I do wonder whether we ought to pay some attention to whose armchair it is.  Often, it’s an armchair occupied by the genuinely ignorant, or the spiteful.  That’s the internet for you.  Accusing someone of being mentally ill or having a personality disorder on this account may be simply mistaken; or it may be intended as a jibe, the subtext of which is that there’s something shameful about having a mental health problem.  But not every armchair is the same: as Frances’ article admits, a letter with 35 signatories who work within the mental health field appeared in the New York Times.  That letter may be misguided, or ill-motivated.  But it is by people who, presumably, know a thing or two about the topic.  Their armchair is not my armchair.

But there’s something else about the piece that’s just nagging away at me.  I don’t know a heck of a lot about mental health, but (and maybe that’s why) there’s a passage in the article that strikes me as being just strange:

But the main [reason for opposing armchair psychiatry] is the inaccuracy of the narcissistic personality disorder (NPD) diagnosis: Trump may be a world-class narcissist, but this doesn’t make him mentally ill.

I wrote the criteria for NPD for the Diagnostic and Statistical Manual of Mental Disorders, which guides mental health diagnosis in the US and beyond. These require not only that the personality features be present, but also that they cause clinically significant distress and impairment. Trump appears to cause severe distress in others (rather than experiencing it himself) and has been richly rewarded (rather than punished) for his self-promoting and self-absorbed behaviours.

[…] We must avoid the frequent mistake of confusing mental illness with bad behaviour. Most people who lie, cheat and exploit others are not mentally ill, and most mentally ill people do not commit dishonourable acts.

There’s a few things that are a bit odd about this. more…

Guest Post: Christine Vincent and Zohar Lederman

Paper: Family presence during resuscitation: extending ethical norms from paediatrics to adults

Family Presence During Resuscitation is an important ethical issue for discussion within the medical community. Currently, family presence is more commonly accepted in paediatric cardiopulmonary resuscitation (CPR) than adult CPR. However, we argue that this fact is not morally justified and that the case for family presence during adult CPR is indeed morally stronger. In our paper we provide an ethical argument for accepting both family presence during adult CPR and pediatric CPR.

Arguments commonly used by ethicists and medical professionals to justify family presence during resuscitation (FPDR) in the emergency room revolve around scarce evidence of harm to patient outcome, strong evidence demonstrating benefits to relatives, and respect for patient’s wishes. However, we argue that these three main reasons all seem to be stronger in the case of adult patients than pediatric ones.

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Guest Post: Mara Buchbinder

Paper: Aid-in-dying laws and the physician’s duty to inform

Why do so many people assume that any clinical communication about aid-in-dying (AID, also known as assisted suicide), where it is legal, ought to be patient-initiated? Physician participants in my ongoing study tend to assume that physicians should wait for patients to initiate discussions of AID. The clinical ethics literature on communication about AID has reinforced this expectation by focusing on how to respond to patient requests. Consequently, bioethics has largely remained silent on whether there is a professional duty to inform terminally ill patients about AID laws and their clinical and legal requirements.

As a medical anthropologist, I pay attention to such gaps in professional discourse, as they often indicate ideas that are so taken for granted that they escape formal expression. In this case, bioethics’ silence on professional obligations to inform patients about AID suggests to me that initiating such a discussion is widely viewed as dangerous. But why? My recent article in the Journal of Medical Ethics began with this puzzling question.

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Guest Post: Patrick Sullivan

Response: Hanna Pickard and Steve Pearce, Balancing costs and benefits: a clinical perspective does not support a harm minimization approach for self-injury outside of community settings

BBC news recently reported on the approval of plans for facilities to support self-injection rooms to allow drug users to inject safely under supervision in Glasgow. Needless to say the initiative is  controversial and as yet is  only approved in principle. The plan would involve addicts consuming their own drugs and in some cases being provided with medical-grade heroin. The move aims to address the problems caused by an estimated 500 or so users who inject on Glasgow’s streets. This initiative again brings into the public eye the issue of harm minimisation.

The concept of harm minimisation has been widely applied in a number of areas such as drug misuse where needle exchange programmes are the obvious example. The basic idea is that where we are unable to stop people engaging in dangerous activities we may sometimes have to settle for the fact that the best outcome possible is that the harm associated with the activity can be reduced. Many day-to-day activities are associated with harm reduction; seat belts on cars, motorcycle helmets, safety measures to reduce risks in extreme sports, advice on safe drinking levels. People will drive, ride motorbikes, engage in dangerous sporting activity and drink alcohol. If they do these things then it is important that they are done safely. Basically this is what harm minimisation is about.

A controversial application of these ideas has been in the area of self-injury. The fundamental idea is that people are allowed to harm themselves safely in the short term, whilst longer-term change is facilitated through access to psychological support. In my recent paper  ‘Should health care professionals be allowed to do harm? The case of self-injury’, I revisit the ethical issues associated with using harm minimisation to support people who self injure. This idea is controversial and counter intuitive given the health care professionals obligation to do no harm.  I challenge this perspective, suggesting that many clinical interventions do in fact involve harm. For example anyone who has experienced surgery or even dental treatment will acknowledge this fact quite readily.

Now it is important to be clear that I am not supporting the routine use of this approach in clinical practice. There is a place, in my view, for paternalism and the ethical case can be made in a number of scenarios. For example the prevention of suicide in people with a psychotic depression. Furthermore, I do not underestimate the risks associated with implementation in a mental health care inpatient setting. I do, however, believe it provides an alternative perspective that could be adopted with some people who self injure.

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Guest Post: Hanna Pickard and Steve Pearce

Responding to: Harm may sometimes be a good thing? Patrick Sullivan

Sullivan’s emphasis on the importance of supporting autonomy and independence among vulnerable people who self-injure is fundamental to good clinical practice. This is why some forms of harm minimization, such as encouraging reflection, responsibility, safe cutting and where appropriate self-aftercare, are uncontroversial and already widely practiced within community settings. The situation is different, however, with respect to both secure and non-secure inpatient settings. It is also different when we consider the other forms of harm minimization that Sullivan advocates, namely, the provision of self-harming instruments on wards alongside education about anatomy.

In secure (forensic) inpatient settings, it is neither practical nor ethical to provide implements that can be used as weapons to any patient, for any reason. This would be to severely compromise staff and patient safety.

In non-secure inpatient settings, patients are likely to be detained under the Mental Health Act. This raises the question of the grounds of detention. Typically, patients who self-injure are detained because they are judged to be currently at risk of life-endangering or life-changing injury. As Sullivan notes, it is not clinically or ethically appropriate to provide patients with the means to self-injure when they are in this state of mind. This means that the relevant inpatient population for which a harm minimization approach could even be considered is relatively small: those who have a standing pattern of self-injury and who are detained on non-secure units for reasons other than acute self-injury.

Sullivan suggests that the long-term benefits of facilitating self-injury for such patients may outweigh the costs. He notes that self-injury functions as a way of coping with psychological distress – which restrictions of liberty can heighten – and suggests that harm minimization may improve therapeutic relationships with staff and outcomes for patients over time. However, the potential benefits of a harm minimization approach to a particular patient must be weighed – in clinical and ethical decision-making in a non-secure inpatient setting – not only against the potential costs to that patient but also against the potential costs to staff and other patients. Consider these in reverse order.

With respect to costs to other patients, it is well-established that self-injury can be contagious. Patients who are admitted onto a ward without a history of self-injury may learn to self-injure if they see other patients doing it – this risk may be especially pronounced if self-injury is part of a therapeutic engagement with staff – and patients with a history of self-injury may learn new means. Specialist inpatient units, including one at which SP worked in the 1990s, which have employed a harm minimization approach in the past have had difficulties with patients adopting techniques from one another and self-injury escalating. Put bluntly, witnessing or even just hearing about self-injury increases the chance that people try it themselves. The impact on other patients of facilitated self-injury on wards needs to be factored into any assessment of costs and benefits.

With respect to the costs to staff, it is of course accepted that clinical work requires managing the psychological burden of treating challenging patients like those who self-injure. But facilitating self-injury through the provision of implements in non-secure inpatient settings would significantly increase this burden. Risk assessment is not an exact science and mistakes will occur – especially, perhaps, in the current NHS context where wards are both overpopulated and understaffed. If staff provide implements to people to self-injure in inpatient settings, they not only bear the psychological cost of knowing they have facilitated – and in that sense sanctioned – the process of self-injury. There will also be occasions where patients accidentally or deliberately kill themselves. Staff will then be in a position of having provided the means to this devastating outcome. Obviously by far the most important cost in such a situation is to patients. But the psychological burden of working with this risk – let alone dealing with its actual occurrence – and its potential impact on staff stress levels and burn-out will not be negligible, and again needs to be taken into account.

Finally, consider the potential costs to patients themselves. We do not deny that it is extremely difficult for patients who have a standing pattern of using self-injury as a way of coping with psychological distress to have it curtailed. No doubt, care would be improved by better awareness and attention to the impact this has on detained patients. But people self-injure not only to manage psychological distress. Self-injury is also a communication to others as well as linked to low self-esteem, negative core beliefs, and emotions like shame and self-hatred. It can both express and reinforce a person’s deeply held belief that they are bad, worthless, and deserving of punishment. This is part of its meaning. The impact of staff facilitating self-injury within a therapeutic relationship risks fuelling this mindset by implicitly sanctioning it. This risk might be mitigated in contexts where staff are highly trained and skilled in offering complex psychological interventions with vulnerable patients – as well as expertly supported and supervised – but, again, this is not a realistic expectation on today’s NHS wards.  Long-term self-injury is correlated with suicide. This is one reason why so much effort is made to address it across all mental health settings. Correlation is not causation, and we must acknowledge that mechanisms are as yet unknown, but it is natural to speculate that one reason is that self-injury maintains a negative self-concept –a known risk factor for suicide.

Indeed, even something as seemingly innocuous as education about anatomy carries risks that Sullivan does not acknowledge. In this respect, it is noteworthy that the medically trained population has higher suicide completion rates than the general population. Sullivan seems to presume that teaching someone about, for example, the important structures in the wrist, will enable them to cut with less risk. But we cannot assume knowledge is benign: rather than being used to self-injure more safely, it can, instead, be used to enable people to cut more dangerously and effectively.

The abstract principles of harm minimization are laudable, but from a clinical and practical ethical perspective, the devil is in the details. Apart from uncontroversial measures already practiced in community settings, we do not believe that – for self-injuring patients themselves, let alone when we factor in the potential impact on other patients and staff – the balance between costs and benefits tips in its favour.

Guest Post: Dr Selena Knight and Dr Wing May Kong

Paper: Bridging the education-action gap – a near-peer case-based undergraduate ethics teaching programme

Medical ethics and law is a compulsory part of the UK undergraduate medical school curriculum. By the time they qualify, new junior doctors will have been exposed to ethics teaching in lectures and seminars, through assessments, and during clinical placements. However, does this really prepare them for the ethical minefield they will encounter as doctors?

Following my own graduation from medical school I started as a foundation year doctor in a busy London teaching hospital. Despite having had more exposure to ethics and law teaching than most by having completed an intercalated BSc in the subject, I found as a new doctor that I was often encountering ethical dilemmas on the wards but felt surprisingly ill-equipped to deal with them. I was generally able to identify that I was facing an ethical dilemma, but frequently found myself stuck when coming up with a practical solution.

If I felt like this having had an additional year of studying ethics and law, how on earth were other new doctors coping? In fact, when questioning my peers about their experiences they described that they also encountered dilemmas, but either didn’t specifically identify them as ethical in nature (e.g. they described feeling uncomfortable or uneasy with a decision made or a particular situation but couldn’t pinpoint why) and frequently described being unable to do anything to improve the situation either because they didn’t know what to do or they didn’t feel confident to speak up/rock the boat e.g. if they experienced a consultant acting unprofessionally

It became clear that even if ethics teaching at medical school was providing sufficient knowledge to enable junior doctors to identify ethical dilemmas, it was failing to prepare them to actually deal with such issues in practice. My own experiences, together with those I heard from my peers, formed the inspiration for the teaching programme that was subsequently designed.

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