Monday, March 16, 2020

COVID19 and the ethics of hospital triage decision-making

There is a lot of talk these days about the predicted coming wave of COVID19 patients needing ICU beds and ventilators in particular, and the inevitable need to prioritise in terms of access. Based on what I'm reading I am somewhat reassured that the right decision criteria will be deployed. Medicine, as always when it comes to the crunch, moves speedily from publicly professed deontological values and handwaving right to consequentialist, if not outright utilitarian, decision-making. That is a good thing. You want to use your limited available resource to maximise the number of life-years preserved. It'll mean, among many other things, that you need to prioritize looking after infected health care workers first (incidentally, that doesn't include clinical ethicists :). It'll also mean to remove people who would need long-term intensive care from beds that could otherwise be utilised by a larger number of patients with better odds of faster recovery. This will be a big challenge for health care professionals who put much store in the acts and omissions doctrine, thinking mistakenly that they're less responsible for the death of someone they omitted to admit to an ICU bed, even though they could have chosen to move a patient with worse odds out of that bed. You are responsible for the choices you make, an act of omission is still an act that you are morally responsible for. 

What makes this less straightforward in practice than it looks like is that what 'the odds' are will inevitably change over time, as health care professionals begin gathering information about what does and doesn't work. This is something we saw during the Ebola virus outbreak of 2014/15. Death rates were staggeringly high and went down considerably as a result of the experience and knowledge gained by the attending health care workers. A case in point, the limited currently available evidence suggests that the vast majority of people who get on ventilators die anyway (the two papers that I have seen peg the mortality rate between 86%-97%), so the current debate about lack of ventilators might be a lot of noise about nothing. I wouldn't be surprised, however, if that changed over time, so this is something that makes allocation decisions more difficult, as the decision-making needs to be continuously updated, based on the rapidly accumulating evidence. Now, while this may well lead to different practical decisions, the normative criteria used to evaluate that evidence should remain pretty stable.

The really important bit though is that hospitals, by now, should have transparent resource allocation decision frameworks in place. They should have communicated those to their staff and made clear that to them that those criteria are binding on everyone. They should also communicate those criteria to the public. Nothing breeds suspicion, conspiracy theories and panic better than non-transparent decision-making procedures in a time of crisis. People need to understand that there is not one rule for them and another one for others who are better connected, as it were. We are all in the same boat, really. 

Which takes me to my last point. This all strikes me as obvious. So I went (16 March 2020) to the COVID19 bits of the website of our local Kingston Health Science Centre (the new name for KGH/Hotel Dieu), to find out what their policies look like, and, to my surprise, there is no relevant information. There's invariably important information about restrictions, like how many visitors will be admitted, and it's all eminently sensible. However, the hospital communicates nothing about what will substantively drive its triage nurses' and clinicians' decision-making should the predicted wave of COVID19 hit the hospital, and you're unfortunate enough to end up there, as a patient. That is unacceptable. Patients and their loved ones have a right to know how life-and-death triage decisions will be made at the hospital where they or their loved ones will be admitted. Incidentally, if everyone knows the basis on which decisions will be made, patient expectations would be realistic from the outset, which can only help in such circumstances. 

Thursday, October 31, 2019

Nature Author's Oddball Piece on Bioethics

The journal Nature has published a lengthy Commentary piece by a UK based sociologist on Bioethics (the field, not the journal). It's part of a series of papers marking the journal's 150th anniversary. 

Sarah Franklin, the Commentary's author, apparently undertakes in her actual job research on reproductive sociology, as opposed to bioethics.Her Commentary describes aptly the rise of Bioethics as a consequence of funding generously offered to ELSI academics during the heydays of the Human Genome Project. Her take on bioethics is that we should do away with ethics in the context of biomedicine and replace it with freewheeling societal engagement, no doubt facilitated and led by sociologists like herself. She generally thinks that Bioethics began to wither once the HGP funding fell by the wayside. Franklin also thinks that 

'The stereotype of bureaucratic, box-ticking ethical compliance is no longer fit for purpose in a world of CRISPR twins, synthetic neurons and self-driving cars. Bioethics evolves, as does any other branch of knowledge. The post-millennial trend has been to become more global, less canonical and more reflexive. The field no longer relies on philosophically derived mandates codified into textbook formulas. Instead, it functions as a dashboard of pragmatic instruments, and is less expert-driven, more interdisciplinary, less multipurpose and more bespoke. In the wake of the ‘turn to dialogue’ in science, bioethics often looks more like public engagement — and vice versa.'
This truly amounts to a lovely mix of half-truths and nonsense. What she describes as box-ticking ethical compliance still has its place, of course, in the context of, for instance research clinical trials involving human participants (just check the binding national regulatory framework in your country for that). These documents were written by multidisciplinary teams of ethicists, lawyers, clinicians and patient representatives. Quelle surprise. Bioethicists offered here ethical analysis, input, background papers etc, but they never were the ones who single-handedly could have taken credit for such documents. In that sense, the field never relied on philosophically derived mandates codified into textbook format. I wonder whether Franklin ever had a look into bioethics textbooks. I rather doubt it. 
Franklin is mistaken when she claims that the field is less expert driven. Of course it is expert and expertise driven, even when it comes to AI in medicine (as I write this, significant funding for research precisely in the area of ethics and AI in medicine is made available in pretty much every Western country that I can think of!). It has always been a multidisciplinary field, but a field of multidisciplinary expertise nonetheless. 
An entirely different question, that she conflates with bioethical analysis, is how biopolicy ought to be developed in a democratic society. Bioethicists have never claimed that they ought to have the last word on it. That's not how democracy works. Invariably, on controversial subjects, there would be public consultations by policy makers, and in addition to expert analysis by bioethicists, and others, public opinions would be sought and engaged before eventually a parliament would take a vote on a controversial issue. Incidentally, that is even true with regard to court judgments. The Canadian Supreme Court in its decision on assisted dying took into account both ethical and legal arguments as well as empirical information on Canadians' views on the subject. Again, quelle surprise
What is mostly off-base about Franklin's take on bioethics is that she sees apparently no room for ethical analysis and expertise on matters biopolicy when we could have the freewheeling societal dialogue instead that she prefers. Clearly there is no contradiction in having both. The former should hopefully fruitfully inform the latter. 
Unsurprisingly, conservative commentators like the US based creationist 'think tank' Discovery Institute's Wesley Smith claimed that Nature  declared 'Bioethics is Obsolete'. Of course, Nature didn't declare that. A sociologist with no apparent expertise in bioethical analysis declared that in a commentary in the journal. Franklin, of course, has a minor conflict of interest here, depending - as she does - on research funding opportunities also accessed by bioethicists. Wouldn't it be convenient if bioethicists would just step aside for 'one of the world's leading experts on the social aspects of reproductive and genetic technologies, IVF, cloning, embryo research, and stem cells', as she describes herself on her departmental website? Probably, but that's not how that works in the real world. 
I do think that the kind of research Franklin undertakes is valuable. What's odd is that she seems to believe that it is the only thing that there ought to be, certainly bioethics should get out of her way. Editing two mainstream journals in our field, I have little to go by other than article downloads. Readership for bioethics peer reviewed expert content has never been greater. Submissions of papers to the journals have never been higher. None of these are signs of a field in decay. 
Incidentally, a good way to compare the academic relevance and impact of a leading bioethicist vs Franklin is probably citations. So, I checked on google scholar how Sarah Franklin (Cambridge) fares compares to Julian Savulescu (Oxford). 
2017 - 593 ;  2018 - 668 ; 2019 - 503
2017 - 1695 ; 2018 - 2000 ; 2019 - 1750
Why am I thinking that there might just be a little life left in Bioethics?
The funniest thing about Franklin's attack on Bioethics, and Smith's full-throated support of her agenda, is that we see again feminism and conservative anti-choice activism finding common cause. It's not for the first time, it won't be the last time. Let's hope Franklin enjoys her new-found companions. 

Friday, October 04, 2019

Undertaking ethical psychiatric research in the global south’s prayer camps – is that even possible?


Psychiatrists associated with elite institutions in the global north teamed up with counterparts in Ghana with a view to determining what impact the use of gold standard of care drugs plus ‘faith healing’ protocols would have vs ‘faith healing’ only. The venue of their research was an evangelical prayer camp where the ‘faith healing’ protocol consisted in keeping many psychiatric patients in chains, making them pray and making them fast. [i]

[This man lived in a Prayer Camp – he is drinking from a dirty container which staff put water in for him to drink. He slept, ate, and defecated beside the tree where he was chained ((c) 2012 Nick Loomis/Human Rights Watch] 
Comprehensive Mental Health Bill Passed in Ghana has yet ... 
The randomised trial discovered that those patients who were subjected to mainstream drugs did better than those who received only ‘faith healing’. The results, ultimately, were not overwhelmingly positive for patients in either group, which may have had to do with the short duration of the trial and/or the lack of efficacy of some of the mainstream drugs used. There were some improvements in the group provided with drugs, but apparently that had no impact on the amount of time they spent chained to the floor in said ‘faith healing’ facility. 

Let me say at the outset that I do think the researchers went into this research project with the best of intentions, likely hoping they would be able to show that more patients would improve faster if they received mainstream psychiatric drugs when compared to ‘faith healing’ only. In turn that should have led to the unchaining of more such patients than if they were subjected to ‘faith healing’ only. It should have also impacted positively on what is offered to patients like them, going forward. They were clearly aware of the problems to do with undertaking a clinical research project ethically under the circumstances, ie psychiatric patients chained to the floor in a ‘faith healing’ facility. The objective of this Editorial is not to castigate them as irresponsible researchers exploiting a small group of chained-up psychiatric patients in Ghana.

Several ethical issues arose, based on their own reporting of their trial method and the difficult circumstances under which they proceeded with their trial. They claimed essentially that the trial participants were volunteers who had entered the prayer camp voluntarily and who had given voluntary first-person informed consent to trial participation.  A neutral observer can’t help but wonder, to what extent a psychiatric patient chained to the floor is truly able to give voluntary consent to anything. It turns out, by the researchers own (honest) reporting, there were some patients who were apparently unable to respond to their questions. Clearly those patients then were also unable to consent to trial participation, and yet, some of them were apparently enrolled regardless. One has reason to doubt that they entered the facility voluntarily. 

Given that a significant number of trial participants were reportedly illiterate, the information was read to them, and their consent (bar that of those deemed unable to provide first person informed consent) was then taken to be sufficiently informed. Apparently, nobody validated whether those patients had a reasonable understanding of the trial method and of their options vis a vis their participation. Apparently, when family ‘consent’ (aka authorisation) was sought this occurred often by phone. No paperwork existed that would have validated that authorisation. No record exists to evaluate the interactions between the researchers or their intermediaries and the people on the other end of the phone line, people they took to be family members. 

Of course, another issue is the existence of, effectively, a placebo arm (ie the ‘faith healing’ arm) when a gold standard of clinical care was provided as part of the trial (ie the active agent in the other arm). These issues have been litigated elsewhere, so I will not repeat those arguments on this occasion.

When I read about this trial I couldn’t help but wonder whether ethical research is possible under circumstances this academic situated in the global north considers barbaric. On the one hand, it’s a fact that in the global south many such prayer camp equivalents exist, and the care provided to – often impoverished – psychiatric patients is indefensible on professional grounds, and yet, that is also all there is. 

Anybody concerned about the well-being of psychiatric patients finding themselves in such facilities, voluntarily or by coercion, should be supportive of research aimed at improving their lot. And yet, there are obvious questions about the how-to in terms of how this research team went about recruiting trial participants. I have flagged some of those questions. The broader question is though, whether ethical research is possible in such contexts at all.

UDO SCHUKLENK

[This is a draft version of an Editorial that is going to be published in Developing World Bioethics 2019; 19(4)]

[i] Ofori-Atta, A, Attafuah, J, Jack, H, Baning, F, and R Rosenheck. 2018. Joining psychiatric care and faith healing in a prayer camp in Ghana: randomised trial. British Journal of Psychiatry 212: 34-41.

Wednesday, August 14, 2019

How we operate the review process at Developing World Bioethics

Developing World Bioethics branding bannerI had the great fortune of attending the World Congress of Bioethics in December 2018 in Bengaluru, India. Besides my participation in two panels, I also hosted – jointly with Brian Collins, our Editor at Wiley‐Blackwell, the publisher of Developing World Bioethics – a workshop on academic publishing. It was meant to give prospective authors an opportunity to ‘meet the Editor’ so to speak, to acquire insight in the academic publishing enterprise, and last but not least, to ask us pretty much any questions that they might have, in so far as they relate to the publication processes of the journal.
There seemed to be a number of misconceptions about how peer review operates generally, and vis a vis this journal in particular. For instance, concerns were raised that ‘big name’ authors, or at least senior academics, might receive preferential treatment, and the question was asked whether such academics’ names should be added as authors to submitted manuscripts in order to improve the manuscript's acceptance chances.

Let me say, at the most basic, this journal is bound by the International Council of Medical Journal Editors guidelines on authorship.1 I would strongly encourage you to look those up and ensure that you and your co‐authors all meet those criteria. In multi‐author submissions each of you would have to confirm that each of you individually meets those criteria. If you decide to add a name of someone as an author who does not meet those standards, then you and they would have to proactively lie to us during your submission process, because you would be asked what each of you contributed to the paper, and how each of you met the criteria set out in the mentioned guidelines on authorship. I would strongly discourage you from any deception in this context.

The journal's Managing Editor, Andy F. Visser, will then pass the received manuscript on to both of us, myself, and Debora Diniz, the Co‐Editors of the journal, asking us for a determination on whether the paper should be send out for external peer review or whether we should reject it outright. The policy at this journal is that both the Managing Editor as well as the journal's Co‐Editors are always aware of the author(s) identities.

The Co‐Editors of the journal make then a decision on whether or not a submitted paper is prima facie worthy of peer review. That means that we will ascertain whether the submitted paper is within the remit of the journal, whether the analysis seems coherent, and whether references follow academic standards. If we think the submitted paper does not meet those standards it will be rejected by us without further peer review.

Once we have decided that a manuscript is worthy of external review, each of us as Co‐Editors chooses their own preferred peer reviewer. We do this without consulting each other, mostly in order to avoid any undue influence on or from each other. Reviewers are typically chosen with a view to receiving quality feed‐back with regard to the specialist subject area of the paper in question. As Co‐Editors we might have specialist expertise in a number of areas within bioethics, but certainly we don't have that kind of expertise with regard to most papers submitted to this journal. That's one of the reasons for external review.

We communicate our choices back to the Managing Editor who then invites our chosen reviewers to review the manuscript in question. At that point in time the manuscript is anonymised, the reviewers have access to the article but all author identifying information is removed.

There are other models of peer review, so why have we chosen this model? We try to avoid influencing reviewers’ decisions by removing author identifying information. We know today that anything from an author's name (because it's linked to fame, notoriety, sex, ethnicity, religion, etc) to their academic affiliation can bias reviewers. We prefer our reviewers are not subjected to such information, irrelevant as it is when it comes to reviewing the quality of a particular submission. A graduate student's submission will be treated no different than a submission by the most influential bioethicist alive today. There are other reasons to do with the size of our comparably small field. For instance, a junior academic might be negatively affected if their weak submission was rejected by a reviewer who also happens to be on an appointments committee that decides on whether or not the author of the rejected paper should be shortlisted for a job interview.

Equally, when we receive the reviews and pass them on to the author(s) with our editorial decision, the reviewers’ names are stripped off the reviews. In order to facilitate frank reviews it is counterproductive for reviewers to know, for instance, that during the next conference that they will be attending there will be authors who are supremely frustrated that their reviews led to a rejection.
The system of peer review we operate ensures that reviewer biases are reduced as much as is feasible, and it protects reviewers’ ability to provide us as Co‐Editors with frank reviews. We do think that it also protects authors, especially authors whose content has been rejected, from having to face their reviewers in person during the next academic conference that they are attending. Then there is the risk that a rejected author tries to get even with a reviewer if – by chance – they happen to get invited to review the submission of a now‐author turned reviewer.

To cut a long story short, we maintain a process of peer review where neither the reviewers nor the authors know each others’ identities. The main motive for this policy is to remove biases from the review process.

Wiley Blackwell has produced a fair number of useful tools2 that you can access if you wish to find out more about academic publishing generally, and peer review in particular.3

Also worth noting, this journal follows the procedures and policies laid out in a series of flowcharts produced by the Committee on Publication Ethics.4

Do keep in mind, Editors are human beings, much like you. Mistakes can happen. Nothing should stop you from communicating your concerns to us. We will always aim to deal promptly and transparently with your concerns.

1) http://www.icmje.org/recommendations/browse/roles‐and‐responsibilities/defining‐the‐role‐of‐authors‐and‐contributors.html
2) https://authorservices.wiley.com/author‐resources/index.html
3)  https://authorservices.wiley.com/author‐resources/Journal‐Authors/submission‐peer‐review/peer‐review.html  
4)  https://publicationethics.org/guidance/Flowcharts

2019 Google Scholar Metrics for Bioethics Journals

Quite possibly the below table will be displayed in odd ways on your screen. 

Usual CoI blurb applies. I co-edit two of the journals in this list. List up-dated August 2019. Any mistakes are my own, please alert me if you discover discrepancies between what I am reporting and what you're able to find on google scholar.


                                                                                                                           h5               h5-median

  1. Nursing Ethics                                                                              37          51 
  2. Science and Engineering Ethics                                                         36           52
  3. Journal of Medical Ethics                                                             34          44 
  4. The American Journal of Bioethics                                              31        39
  5. bmc medical ethics                                                                       30           43 
  6. Bioethics                                                                                       25         35 
  7. Hastings Center Report                                                                 24          35  
  8. Journal of Law, Medicine and Ethics                                                 23         37     
  9. Medicine, Health Care and Philosophy                                        23         35
  10. Neuroethics                                                                                   19         27
  11. Journal of Empirical Research on Human Research Ethics         19          26
  12. American Journal of Bioethics Neuroscience                              18            27
  13. Journal of Bioethical Inquiry                                                                     18        25
  14. Nursing Philosophy                                                                          18      22 
  15. Cambridge Quarterly of Healthcare Ethics                                            17          22 
  16. Journal of Medicine and Philosophy                                              16          22 
  17. Kennedy Institute of Ethics Journal                                                16          22
  18. Health Care Analysis                                                                     15       22
  19. Public Health Ethics                                                                                 15          19
  20. NanoEthics                                                                                               14         20 
  21. Theoretical Medicine and Bioethics                                                         14          18 
  22. Developing World Bioethics                                                                    13          17
  23. Journal of Medical Ethics and History of Medicine                           12         25 
  24. HEC Forum                                                                                       12         20
  25. American Journal of Bioethics Empirical Bioethics                                12          14 
  26. Indian Journal of Medical Ethics                                                     11       17
  27. The Journal of Clinical Ethics                                                        11          15
  28. Ethik in der Medizin                                                                         9           14
  29. Perspectives in Biology and Medicine                                                9        14
  30. Narrative Inquiry in Bioethics                                                                8              12
  31. International Journal of Feminist Approaches to Bioethics              8         11
  32. The New Bioethics                                                                           8            11
  33. Ethics, Medicine and Public Health                                                 7           10 
  34. South African Journal of Bioethics and Law                                         7            7
  35. Christian Bioethics                                                                            5          7
  36. Ethics and Medicine                                                                        5             6 
  37. Asian Bioethics Review                                                                   4           7
  38. JAHR - European Journal of Bioethics                                             4          5
  39. Journal international de bioethique                                                  4             5
  40. National Catholic Bioethics Quarterly                                              4             5
  41. Chinese Medical Ethics                                                                   2             2




*h5-index is the h-index for articles published in the last 5 complete years. It is the largest number h such that h articles published in 2014-2018 have at least h citations each
**h5-median for a publication is the median number of citations for the articles that make up its h5-index

COVID19 and the ethics of hospital triage decision-making

There is a lot of talk these days about the predicted coming wave of COVID19 patients needing ICU beds and ventilators in particular, and th...