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clinical ethics

A Matter of Life and Death

10 Jan, 17 | by bearp

Guest Post by Professor Lynn Turner-Stokes

Re: A matter of life and death – controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness

In an article published in the JME, I highlight the confusion that exists amongst many clinicians, lawyers and members of the public about decisions with withdraw life-sustaining treatments from patients in permanent vegetative and minimally conscious states.

Recent improvements in acute care for patient who have suffered catastrophic brain injury undoubtedly save lives. However, some patients who would otherwise have died now survive but remain profoundly disabled. Many patients experience a brief period of unconsciousness (or ‘coma’) lasting a few days or weeks. However, an unfortunate few with very severe brain injury remain in a vegetative and minimally conscious state (VS/MCS) for many months – or in some cases permanently.

Unfortunately the lay press, and even much of the medical literature, tends to conflate VS/MCS with coma, but they are in fact very different. Coma is a state of ‘unrousable unresponsiveness’ from which the patient cannot be awakened. It rarely persists for more than a few days or weeks, as the large majority of patients will either die or start to regain consciousness. Patients in VS or MCS are awake, but have either very limited awareness of themselves and their environment (MCS), or none at all (VS). With supportive treatment, many will live in these states for a decade or more.

more…

Professionalism, or Prying?

3 Jan, 17 | by Iain Brassington

“Professionalism” is a funny thing.  About this time last year, I was struggling to get a new course written for the coming semester; it was on professional ethics for lawyers.  A colleague made a comment along the lines that I must be spending a lot of time looking at the professional codes; I replied that I’d be spending almost none doing that; she looked baffled and wandered off, presumably convinced that I was joking.

I wasn’t joking.  I did look a little at the professional codes, but only as a jumping-off point.  My schtick was more like, “Here’s what the SRA says about client confidentiality; now let’s spend the remaining 98% of this lecture looking at why it might say that, and whether it ought to say something different”.

Yet, as I wrote the lectures, professionalism – not professional codes, but professionalism – did keep cropping up.  After all, if you’re going to talk about lawyers’ ethics, or doctors’ ethics, or engineers’ ethics, the implication has to be that there’s something quite specific that applies to each of those professions, otherwise it just collapses into… well, ethics; and it might be that there is a clear way to define who belongs to the profession, and a clear hierarchy, and that it is proper (or, at least, it may be proper) that there is some sort of pressure exerted by that hierarchy that shapes behaviour in a way that neither the law nor standard social norms do.  There are some things that are regulated by professional ethics that aren’t regulated by bog-standard ethics.  To return to the lawyers’ example, there might be certain things that are acceptable or even required from a lawyer that wouldn’t be in other cases, and other things that are unacceptable that are trivial outside the profession; and the same might apply to medics.  (In passing, I think that that might be one of the fault lines in academic medical ethics: those of us that come from a philosophical background understand “ethics” to mean one thing, and those of us who come from a medical or, in at least some cases, a social science background understand it to mean another.  We normally rub along fine, but sometimes we are talking at cross-purposes.)

A range of problems arises from that, though.  For example, though codes of ethics might attempt to codify what it is that’s demanded by professionals, they’re often rather vague, or presuppose a heck of a lot that’s actually rather important.  That can lead to situations in which it’s impossible to tell what’s required on the ground.  “Maintaining the reputation of the profession” is a concern of some of the professional codes I’ve seen, though quite what that means is anyone’s guess, since it might collapse to “doing whatever keeps the public on side, no matter how senseless”; and while that might maintain esteem in one sense, it does so only by undermining the concept of professional integrity.

A second problem comes from the need to know what things are properly within the “professional” remit, and what professional bodies have any business talking about.  The difficulty here is that “professionalism” implies living a kind of life; being a professional involves being a certain kind of person.  One doesn’t stop being a professional when the end-of-shift klaxon goes.  And yet there’re certain things that do have nothing to do with professional regulation: whether or not to be teetotal is not a professional matter, and a professional body that tried to involve itself in such decisions would be stepping over the line.  Still, where the line should be drawn may not be obvious.

All of this brings me to this blog post over on the BMJ blog, in which Niro Kumar considers doctors and dating apps. more…

Randomised Placebo-Controlled Trials of Surgery: Ethical Analysis and Guidelines

25 Oct, 16 | by miriamwood

Guest Post by Karolina Wartolowska

Re: Randomised placebo-controlled trials of surgery: ethical analysis and guidelines [open access]

Surgical placebo-controlled randomised controlled trials are, in many ways, like placebo-controlled drug trials. Like in case of drug trials, sometimes, a placebo-controlled design is necessary so that the results are valid and unbiased. Placebo control is usually necessary when a surgical trial has only subjective outcomes. This is often the case, because many surgeries are done to relieve pain and improve function. Validating the efficacy of a surgery in a well-designed trial helps to improve clinical practice. If the procedure is ineffective it should be discontinued and less risky treatment should be used instead. It also demonstrates the need for new effective interventions. But if the surgery is effective the resources should be allocated to the better intervention. If efficacy of intervention is never tested, many patients may be exposed to risks associated with a surgery but do not get any real benefits.  They also do not get other treatment, which may provide similar benefits without the risks and costs associated with surgery.

Surgical placebo-controlled randomised controlled trials may be undertaken in an ethical way. Firstly, there needs to be “equipoise”. In other words, there should be uncertainty, lack of strong evidence and lack of agreement among the clinicians whether the investigated surgery is effective or whether it is better than conservative treatment.  If there is equipoise, there is no true “best treatment” which can be recommended to the patient. Secondly, there should be some preliminary evidence that the surgery works (form animal studies, open-label trials). There is no point undertaking a surgical trial if it fails to show any improvement in the surgical arm. Thirdly, the risks associated with a surgical trial should not be disregarded. To be justified, such trials should have high scientific and clinical value and a potential to change clinical practice. Moreover, the risks of harm in both trial arms should be as small as possible. This is particularly important in the placebo/sham arm. The placebo mimics the active surgery but it also omits the surgical element which is the key part of the active surgery. So some procedures necessary in the surgical arm, for example anticoagulants or antibiotics, may be avoided in the placebo arm or can be replaced with a saline injection.  Ideally, the placebo/sham procedure should benefit the patients, for example as a diagnostic procedure. And last but not least, it is important that there is an uncertainty about the treatment allocation but there is no actual deception. Patients should understand which procedures are or are not performed and what are the associated risks in each trial arm.

Surgery is inherently risky but it is important to know whether it is also effective and worth taking these risks.

Natal Nativism

12 Oct, 16 | by Iain Brassington

Scene: the boardroom of a large NHS Trust, somewhere in England.

“And so that brings us neatly to the last item on the agenda: passport checks for pregnant women who want a checkup.  The thing is, you see, that it turns out that we’ve been providing obstetric care to some women who aren’t actually UK citizens.  And, clearly, that has to stop.”
“To stop?”
“Well, maybe not stop.  But you know what I mean.  We can’t go providing treatment to anyone who comes knocking at the door!  Why, we’d have a queue from here to Timbuktu, not to mention the cost!”
“Oh, quite.  No, I quite agree that we can’t be the world’s supplier of healthcare.”
“No.  So that’s settled, then.  No more obstetric services to women who can’t demonstrate their eligibility.”
“Hmmmm.”
“You don’t look convinced.  What’s the problem?  These women aren’t eligible.”
“Well, no.  But… well, look.  Remember when Dr Smith retired, and when Dr Jones got that transfer to work in the Inner Hebrides?”
“All too well.  Two great losses to the Trust.  What’s your point?”
“Well, I seem to remember that we pooled together to buy them nice leaving presents.”
“We did.  It was the least we could do.”
“I agree.  But, you see, the thing is, they weren’t actually entitled to them.  If you see what I mean.”
“I’m not sure I follow.”
“No.  Well, you see, the thing is, we bought them those presents, and gave them to them, because it’s the decent thing to do.  There’s no rule that says that we have to buy them.  They wouldn’t have been wronged if we hadn’t.”
“Yeeeeeeessssss…  I mean, no.  But yes.”
“But we gave them the presents anyway.  Because the rules set out what’s minimially decent.  Not an upper limit.”
“Yeeeeeesssss…”
“Well, you see, I was just wondering: might the same apply in other contexts?  Allowing for the obvious differences, of course.”
“You’re losing me again.”
“I thought I might be.  Well, you see, it’s like this.  We’ve been providing treatment to pregnant women without paying attention to whether they’re entitled by the strict letter of the law.  And that law specifies who is entitled to treatment.  But that doesn’t necessarily impose any exclusions.  You see, I wonder if by getting bogged down in the rules, we might… um…”
“Might what?”
“Well, you see, the thing is…”
“Go on…”
“Look: we might end up looking like utter shits.”

Wholly fictional, this, of course.  No such conversation took place.  On the other hand, as reported by the Beeb, here’s a document from St George’s University NHS Trust.  Skip to p80: more…

An Accidental Expert

9 Aug, 16 | by miriamwood

Guest Post by Derick Wade

Re: Back to the Beside: Making Clinical Decisions in Patients with Prolongued Unconsciousness

In 1994, not long after the Bland judgement, I was telephoned one day by the office of the Official Solicitor. “Was I familiar with the vegetative state, and if so would I be prepared to see two people for them?”  I could reasonably honestly answer that I was familiar with it – one sees people left unconscious long after brain injury in my line of work.  I did not claim expertise, and nor was I asked.  I said “yes, to both questions.” and was sent relevant guidelines, and instructions.  With practice I improved, and I wrote my first article on the matter with one of the Official Solicitors, published in the BMJ.  I also saw one case who was definitely not vegetative (and two very well know experts had said that she was); the case has been written up with a ten year follow-up (not by me).

In about 2000, having seen about fifteen or more cases for the Official Solicitor and various NHS hospitals, the next chance event occurred.  Talking one evening with my family about my work, my elder daughter asked me what I thought about the ethics of withdrawing food and fluid.  I replied something like “Well, I have never really thought about it.” which horrified her, and surprised me (though research suggests that actually I am quite normal in that regard, as doctors usually consider matters clinically, not ethically).  Anyway, I decided to research the issue and wrote another article, which was also published in the BMJ.  Interestingly despite making several provocative statements, I only received one letter about it.

more…

No Diagnosis for You, Matey!

5 Aug, 16 | by Iain Brassington

Here’s a little amusement for the weekend, from a friend who lives in the States:

I received a state of the arts cardio monitor, per a prescription from a cardiologist, to determine if I have an irregular heart beat.  All chrome and aluminium and clean and small with various electronic devices to transmit “information” to the company.  40 pages of instructions for the phone-like device.  At one point the book (and the device) instruct me (i.e., tell me, not ask me) to push YES regarding company’s use of my information for research.  I push NO.

Device will not allow diagnostic testing.

Call doctor.

Doctor upset I won’t allow use of info.

I didn’t care UNTIL they told me I can’t use this device UNLESS I consent to use of the information for research.  Now they are scrambling to ‘override’ the yes-only option, if possible.

I have to admit that, from a professional point of view, that’s kind of brilliant.  And I suppose that it is consent, in a Hobson’s choice kind of a way.

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…

Individualised and Personalised QALYs in Exceptional Treatment Decisions

28 Jul, 16 | by BMJ

Guest Post by Warwick Heale

When NICE decides whether to make a treatment available on the NHS it considers both clinical effectiveness and cost effectiveness.  Cost effectiveness is based on population-level QALY data, as is appropriate for a population-level policy.  However, this can cause problems for exceptional individual patients.

When a doctor wants to offer an individual patient a treatment that has been deemed by NICE not to be cost-effective, the doctor can make an Individual Funding Request (IFR) to NHS England or a Clinical Commissioning Group.  The doctor must convince the IFR Panel that the patient is exceptional and that it is worth spending the money on this patient, leaving less to be spent on others.  The Panel’s presumption, based on the population-level data, is that the treatment will not be cost effective, and this stacks the cards against the individual patient, however extreme the patient or their condition may be compared to the population average.

One solution to this might be to consider individualised cost or response (individualised QALYs) or personalised valuations of health states (personalised QALYs).  Applying these concepts might protect the patient from a treatment being refused even if he or she is markedly different from the population average.  In doing this, we would actually promote utility and effective use of resources which is one aim of the IFR process, but one which I think it fails to achieve as effectively as it might.

Consideration of personalised QALYs also offers a justification for offering a Jehovah’s Witness a more costly alternative to blood transfusion, on the basis that this would actually maximise the utility we gain from our limited resources – in contradiction to the more obvious view that this would compromise utility.  Furthermore, in doing this we don’t need to give any special status to religious considerations – the Jehovah’s Witness, the patient of a different faith and the atheist should all be subject to the same principles of personalised QALYs.  Personalised QALYs also allow us to think about patient choice alongside utility rather than as independent principles.

Read the full paper here.

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…

Writers Whose Expertise is Deplorably Low

4 Jun, 16 | by Iain Brassington

Something popped up on my twitter feed the other day: this document from Oxford’s philosophy department.  (I’m not sure quite what it is.  Brochure?  In-house magazine?  Dunno.  It doesn’t really matter, though.)  In it, there’s a striking passage from Jeff McMahan’s piece on practical ethics:

Even though what is variously referred to as ‘practical ethics’ or ‘applied ethics’ is now universally recognized as a legitimate area of philosophy, it is still regarded by some philosophers as a ghetto within the broader 
area of moral philosophy.  This view is in one way warranted, as there is much work in such sub-domains of practical ethics as bioethics and business ethics that is done by writers whose expertise is in medicine, health policy, business, or some area other than moral philosophy, and whose standards of rigour in moral argument
are deplorably low.  These writers also tend
 to have only a superficial understanding of normative ethics.  Yet reasoning in practical ethics cannot be competently done without sustained engagement with theoretical issues
in normative ethics.  Indeed, Derek Parfit believes that normative and practical ethics are so closely interconnected that it is potentially misleading even to distinguish between them.  In his view, the only significant distinction is between ethics and metaethics, and even that distinction is not sharp.  [emphasis mine]

It’s a common complaint among medical ethicists who come from a philosophical background that non-philosophers are (a) not as good at philosophy, (b) doing medical ethics wrong, (c) taking over.  All right: there’s an element of hyperbole in my description of that complaint, but the general picture is probably recognisable.  And I don’t doubt that there’ll be philosophers grumbling along those lines at the IAB in Edinburgh in a couple of weeks.  There’s a good chance that I’ll be among them.

There’s a lot going on in McMahan’s piece, and his basic claim is, I suppose, open to a claim that, being a philosopher, he would say that, wouldn’t he?  But even if that claim is warranted, it doesn’t follow that it’s false.  And it probably isn’t false.  There is some very low-quality argument throughout bioethics (and, from what I remember from my time teaching it, business ethics) – more particularly, in the medical ethics branch of bioethics, and more particularly still, in the clinical ethics sub-branch.  Obviously, I’m not going to pick out any examples here, but many of us could point to papers that have been simply not very good, because the standard of philosophy was low, without too much difficulty.  Often, these are papers we’ve peer-reviewed, and that haven’t seen the light of day.  But sometimes they do get published, and sometimes they get given at conferences.  I’ve known people who make a point of trying to find the worst papers on offer at a given conference, just for the devilry.

It doesn’t take too much work to come up with the common problems: a tendency to leap to normative conclusions based on the findings of surveys, or empirical or sociological work; value-laden language allowing conclusions to be smuggled into the premises of arguments; appeals to vague and – at best – contentious terms like dignity or professionalism; appeals to nostrums about informed consent; cultural difference used as an ill-fitting mask for special pleading; moral theories being chosen according to whether they generate the desired conclusion; and so on.  Within our field, my guess is that appeals to professional or legal guidelines as the solutions to moral problems is a common fallacy.  Not so long ago, Julian noted that

[t]he moralists appear to be winning.  They slavishly appeal to codes, such as the Declaration of Helsinki.  Such documents are useful and represent the distillation of the views of reasonable people.  Still, they do not represent the final word and in many cases are philosophically naïve.

Bluntly: yes, the WMA or the BMA or the law or whatever might say that you ought to do x; and that gives a reason to to x inasmuch as that one has a reason to obey the law and so on.  But it’s unlikely that it’s a sufficient reason; it remains open to us always to ask what those institutions should say.  Suppose they changed their minds and insisted tomorrow that we should do the opposite of x: would we just shrug and get on with the business of undoing what we did today?

And yet…  The complaint about poor argument is not straightforward, for a couple of reasons. more…

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