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An Accidental Expert

9 Aug, 16 | by miriamwood

 

Guest Post: Derick Wade

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.

Free Labour and Quiet Doubts

1 Aug, 16 | by Iain Brassington

Those of us on the academic side of things will almost certainly recognise the situation: you’re sitting in your school’s Teaching & Learning committee, or a staff/student committee meeting, or something like that, and you hear the complaint from students that they should get more contact time.  Academics should spend more time teaching rather than simply doing their own research.  After all, they’re paying however-many thousand pounds for their education.

And you’ll’ve heard the standard rebuttals – and maybe even trotted them out yourself: that course fees cover not just teaching costs, but libraries, labs, buildings and so on; that university learning isn’t about hours in a classroom; that teaching and research are intertwined; that students benefit from being taught by the people who’re writing the papers they’re reading.  But I wonder if these standard responses miss something important.

Back in April, I was getting companionably smashed with some of my final-year students, and we were talking about what they were going to do when they’d graduated, and about possible careers.  One or two were interested in academia, and so a part of the conversation concerned what life’s like from my side of the fence.  Predictably, pay was one thing that interested them.  I mentioned that I’d made about £80 in total from the books I’ve written, spread over 10 years.
“And what do you get paid for a paper?”
I held back my bitter laughter, and explained how much you get paid for papers, and how much you get for peer-reviewing, and all the rest of it.  The students had had no idea that this stuff was expected of us, but not remunerated.  Why would they?  Indeed, isn’t it insane that we’re not paid?

I think that one gets an insight here into students’ complaints about academics’ priorities being wrong.  If they think that we get paid for publishing papers, then of course they’re going to think that we have an incentive to resist extra contact hours – and everything we tell them about extra contact hours being at best academically unnecessary, and likely as not counterproductive, will sound like so much bad faith.  After all, of course we’d tell them that a course only needs 30 hours of lectures rather than 60 if we could be earning extra money with those spare 30 hours.

What prompts all this is an article in the Chronicle of Higher Education.  It’s from 2012, but it’s started popping up in my social media timelines this morning, and Carl posted it on Fear and Loathing in Bioethics last night.  It makes a proposal: more…

The Challenge of Futile Treatment

29 Jul, 16 | by Iain Brassington

Guest Post by Lindy Willmott and Ben White

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

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

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

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

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.

JOB: Teaching Fellow, UCL (0.4 FTE)

15 Jul, 16 | by Iain Brassington

James Wilson has drawn my attention to this opportunity, which may be of interest to those working in public health ethics.

Further Particulars
This post is a Teaching Fellowship which, in the first instance, will start on 15 September 2016 and run until 14 September 2017.

The successful candidate will be expected primarily to provide teaching in Philosophy, Politics and Economics of Health at postgraduate and advanced undergraduate level and Global Justice and Heath at postgraduate and advanced undergraduate level.  This will involve teaching two courses per year, one in the Autumn term and one in the Spring term.  Some postgraduate supervision may also be required.

Each course requires two hours of teaching per week throughout the ten-week terms, plus course administration.  Courses for postgraduates and third year undergraduates involve a two hour seminar per week.  Although the overall content of the courses is fixed, the precise content will be up to the successful candidate.

As well as giving these lectures and seminars the Teaching Fellow will be expected to set and mark essay topics or examinations for their own courses, to supervise graduate teaching assistants, and to play a part in the normal duties of teaching and administration within the Department.

In Praise of Ambivalence: “Young” Feminism, Gender Identity, and Free Speech

13 Jul, 16 | by bearp

By Brian D. Earp (@briandavidearp)

* Note: this article was first published online at Quillette magazine.

Introduction

Alice Dreger, the historian of science, sex researcher, activist, and author of a much-discussed book of last year, has recently called attention to the loss of ambivalence as an acceptable attitude in contemporary politics and beyond. “Once upon a time,” she writes, “we were allowed to feel ambivalent about people. We were allowed to say, ‘I like what they did here, but that bit over there doesn’t thrill me so much.’ Those days are gone. Today the rule is that if someone—a scientist, a writer, a broadcaster, a politician—does one thing we don’t like, they’re dead to us.”

I’m going to suggest that this development leads to another kind of loss: the loss of our ability to work together, or better, learn from each other, despite intense disagreement over certain issues. Whether it’s because our opponent hails from a different political party, or voted differently on a key referendum, or thinks about economics or gun control or immigration or social values—or whatever—in a way we struggle to comprehend, our collective habit of shouting at each other with fingers stuffed in our ears has reached a breaking point.

It’s time to bring ambivalence back.

A Fatal Retraction

Given the state of politics these days, Dreger’s remarks could have been triggered by just about anything; but as it happens, she was reflecting on a controversial decision by the editors of Everyday Feminism, a popular online feminist magazine, to pull an essay of hers on sex education. The essay had earlier been published by Pacific Standard with the provocative title, “What If We Admitted to Children That Sex Is Primarily About Pleasure?”

The essay wasn’t the problem. In fact, the editors liked the essay: they had reached out to Dreger to ask her permission to republish it, which is how this whole episode began. Instead, the problem was some other, unrelated material that Dreger had published elsewhere—a kind of “guilt by association” with her own work.

This is how the editors explained their decision (key bits in bold):

What happened was that we decided to pull the article from circulation shortly after it went up. When we asked permission [to republish] it we weren’t aware of some of the articles you’ve published on trans issues and after a reader brought it to our attention [we] looked into them.

Trans issues means transgender issues. The editor went on:

We … realized that while we very much valued the information in the article on teaching children that sex is about pleasure, the views expressed in several of your other articles directly conflicts with the work we’re trying to do in Everyday Feminism. For that reason, we decided to pull the article.

If you aren’t familiar with Dreger’s work, you are probably wondering what she’s written about trans issues that the editors found so troubling—troubling enough to retract an unrelated essay. And if you are familiar with Dreger’s work, you are probably wondering even more. This is because Dreger is widely regarded as being a supporter of trans rights, as well as rights for intersex people, for gender non-conformers generally, and for other marginalized groups, all of which seems broadly consistent with the aims of Everyday Feminism.

Dreger’s support for sexual minorities is not idle. Instead, she has devoted the better part of her professional career to blowing up narrow-minded gender identity norms, against sometimes huge resistance, and to fighting oppressive attitudes about sex and gender within the more traditional corners of science and medicine. Her work on intersex ethics has been especially influential.

So what could be going on behind the curtain?

more…

Event: Courting Controversy?

3 Jul, 16 | by Iain Brassington

This might be of interest to some readers:

Courting Controversy?  Recent Developments in Health Care Law

21 July 2016

Chancellors Hotel, Chancellors Way, Moseley Road, Fallowfield, Manchester M14 6NN

This afternoon seminar examines some controversial recent developments in health care law and introduces two new books on law and medicine:

  • Margaret Brazier and Emma Cave Medicine, Patients and the Law (6th Edn) (Manchester UP, 2016)
  • Catherine Stanton and Hannah Quirk (eds), Criminalising Contagion: Legal and Ethical Challenges of Disease Transmission and the Criminal Law (Cambridge UP, 2016)

Participants will have the opportunity to discuss developments in the law and meet the authors and researchers from the Centre for Social Ethics and Policy (CSEP) informally.

Programme

13:30 – 14:00  Registration

14:00 – 14:30  Overview of recent developments (Margot Brazier and Emma Cave)

14:30 – 15:00  Protecting Vulnerable Patients (Emma Cave)

15:00 – 15:30  Criminalising Disease Transmission: Demands, Difficulties and Dangers (Hannah Quirk)

15:30  Tea

16:00 – 16:30  Patient Autonomy: Clinical Compulsion?  An Analysis of Montgomery and Doogan – Margot Brazier

16:30 – 17:00  Law Commission Recommendations on Deprivation of Liberty Safeguards – Neil Allen

17:00  Open Discussion

17:30  Reception

This event is free and offered by the CSEP and the School of Law, University of Manchester.  Registration, however, is required.  Please reserve your place here.  For more information, email maureen.barlow[at]manchester.ac.uk

CFA/ Registration: Postgraduate Bioethics, 2016

30 Jun, 16 | by Iain Brassington

“Oi, Iain,” says David.  “Could you put a shout out for the Postgraduate Ethics Conference?”

Indeed I could.  The theme is “Bioethics in Theory: Bioethics in Practice”.  Details – including the call for abstracts (the deadline for which is the 8th July) and the registration form – are here.

IAB 2016: Graeme Didn’t Say “None”…

21 Jun, 16 | by Iain Brassington

Every two years, I write a little post-mortem of the IAB conference, mentioning particular high and low points.  But since I’ve heard near-blanket praise for this year’s Edinburgh fandango, there won’t be too many of the latter.  And everyone with whom I’ve been in contact since has been highly impressed; we’re all still on a bit of a high.

So what was particularly good?  Well, in general, I thought that the standard of argument in most of the papers was high: it’s nice to see really big ideas being grappled with.  Matthias Risse’s paper on IP, particularly in the context of making drugs available to the least well-off, was the keynote on Thursday morning, and was notable in this regard.  Risse was arguing that the current IP regime owes too much to Locke, and not enough to Grotius.  In other words, he made no bones about an appeal to 17th-century political philosophy.  A simple and undemanding rehearsal of principlism this was not.  I’d perhaps have liked to hear more about rights to the medicines in question, as a complement to the point about IP rights – after all, unless there’s a right to the medicines, many of the arguments about IP may be moot; but I’m sure that is, or at least could be, done elsewhere.

Similarly, Gillian Brock’s paper about the medical brain-drain left a few questions unanswered – the proposal that there be some kind of mandatory service for professionals from low-to-middle-income countries arguably places a burden on some people for the misfortune of not having been born in a wealthy part of the world, and leaves open questions about what the point of eduction is to begin with (national needs or personal flourishing?) – but was very good all the same.  I missed Catherine Belling’s “Going Under and Coming Round”, but everyone to whom I spoke was mightily impressed – Stephen Latham seemed genuinely lost for words about how good it was; and I also missed Alondra Nelson’s keynote on the social life of DNA, which seems also to have been warmly received.

Of the parallel sessions, one that particularly stands out is Tamara Kayali Browne’s paper on sex-selection; there’s a different-but-related paper by her currently available as a preview in the JME.

On the Arts and Bioethics theme, Adura Onashile’s HeLa was a thoughtful take on a familiar story, and generated a really interesting Q&A; Vishal Shah’s Vellum was a strange and wonderful thing.

The Early Career Researcher emphasis seems to have been a great success, too.

So were there any down points?

  • Well, there were fewer parallel sessions than there have been in previous iterations of the conference (or at least, so it felt); and that did give the thing a slightly different dynamic.  However, I can’t put my finger on exactly what the difference was, qualitatively speaking; and the fact that there’s a difference doesn’t mean that things should have been done otherwise.  With a lot of people having been offered posters rather than oral sessions (one of my submissions being among them), I think that it’s simply a different way of going about things, and I suspect that any quibbles will boil down to taste.  I don’t think that there’re real grounds for complaint.
  • I was a little saddened that I didn’t get to play my normal game of spot-the-bizarre-paper-that-somehow-got-accepted-with-hilarious-consequences, because there was no bizarre paper, as far as I could see.  (Hmmm.  Maybe that means that my symposium paper was the bizarre one.  Eeeep.)  So that’s a minor disappointment, I guess.  But being denied the opportunity of a good facepalm in the pub afterwards isn’t all that much of a hardship.
  • At the ceilidh, a frightening number of people seemed to be unable to count to eight.
  • I was in Edinburgh a fortnight ago, and it was gloriously sunny and warm.  During the IAB, it was cold and wet.  The word “dreich” shouldn’t be usable in June, but it was this time.  Yet it’d hardly be fair to complain about the IAB on that basis.  Besides, nasty weather reduces the incentive to skive and go for a walk up Arthur’s Seat.  Besides besides… it would have been a shame to miss any of the conference.  So who cares about the rain?

Which is as much as to say: no down points really.  Well – except for that one paper talking about assisted dying that relied on a picture of a child next to a headstone where an argument should have been.  You know who you are.

That aside, though, it was all preternaturally good stuff.

After the closing ceremony, I asked Graeme Laurie how many virgins he’d had to sacrifice in order to make sure that things went as well as they did.  He did not say “none”.  Make of that what you will.

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