Friday, March 10, 2017

Conscientious objection, ethical problems in clinical research in public health emergencies, problems with ethics guidelines and other stuff

I know I know, I have not posted much since September last year. It's been an unusually busy time, professionally, so I must beg for your understanding that this blog has taken a backseat to other projects. I mostly want to alert you here to content I have published or that I have forthcoming. as well as the odd project that's going forward.

Let's start then with a heads-up on publications! I have done a lot of work on the issue of conscientious objection, mostly because I feared (I was right) it would be one of the tools in the armament of those determined to subvert the Canadian Supreme Court decision that decriminalised assisted dying. We have since discovered that buildings (hospitals) think they have conscience rights, even conscience rights that weigh heavier than the conscience rights of the doctors and other health care professionals working in them. Naturally, I am referring to Canada's legions of Catholic hospitals. Then there are health care professionals who think that saying 'I object on grounds of conscience' to the delivery of professional services that they are monopoly providers of, should kinda trigger all-out societal accommodation efforts, patients rights to service delivery be damned. I think both the hospitals as well as those doctors got it badly wrong, and I published a few papers designed to show why that is so.

Here's a paper in the Journal of Clinical Ethics, another one in the Journal of medical ethics, one in Bioethics [Open Access], a reply to various critics in the Journal of medical ethics and an Editorial in Bioethics, all on the conscientious objection issue.

I have also written a few other Editorials, on the ethics of access to unregistered medical interventions during infectious disease outbreaks, on baby boomers and assisted dying, and on the seemingly vacuous rhetoric of 'dignity' and 'vulnerability' that is liberally deployed in UNESCO's bioethics documents.

There are a few other papers in the production pipeline, one on treatment resistant depression and assisted dying is currently under review, and a piece on catastrophically ill patients right to access unregistered medical interventions, forthcoming in the Journal of Law, Medicine and Ethics.

I am currently busy organising an international workshop to be held at this lovely location in mid August, on recent revisions of the World Medical Associations Declaration of Helsinki and the Council for International Organisations of Medical Sciences research ethics guidelines. My own take on the CIOMS document was published in the Indian Journal of Medical Ethics.

Last week, in London, I spent a day with Ruth Chadwick, the other Editor of Bioethics, and our Editors at Wiley, to discuss how we will develop the journal to make it even more successful. Stay tuned for developments on that frontier. Oh, Ruth and I are also close to completing a new bioethics textbook that we are writing jointly. It's years late, which is probably inevitable when you have your plate full with research, teaching and other stuff, but we're close to completion of that project!

I also delivered on the teaching frontiers, creating a new first-year bioethics course for Queen's undergraduates. I have not taught undergraduates for oodles of years, so that was quite an experience. The teaching evaluations suggest that folks enjoyed it. But then, I would say that, wouldn't I?

Last but not least, in the end of March Ruth and I will be off to China to participate in a bioethics conference.

And that's a wrap.

Wednesday, September 14, 2016

Open Letter to Cancer Research Society

Dear Canadian Cancer Research Society,

I appreciate, like all charities, that you need to raise funds for your undoubtedly charitable and important work.

However, what an earth drove you to send me a big fundraising envelope that is filled with electronic garbage? So, you send me a pen, something apparently necessary to complete your fundraising form with financial details. Fair enough, though, I suspect that most people who have the funds to donate to you probably own a pen.

But you did not stop there, you also included an oversized electronic calculator, wrapped in plastic bubble to protect it. That's where the fun stops! N O B O D Y uses electronic calculators as stand-alone utilities. We have them in our smartphones, on our computers, even on our smart watches. Have you given any thought on the environmental impact of the electronic garbage that you sent out en masse to the unsuspecting public? I won't use it, most of us will have zero use for that piece of plastic and the toxic battery inside it.

I won't be donating a cent to you, because it is clear to me that you are wasting without much thinking oodles of $$ to fill thick envelopes with garbage that you then send to people like me with requests for donations. How stupid do you think we are?

I love the line in your letter where you ask that we please do not return your electronic garbage back to sender, instead begging that we please unload the trash you sent our way 'to a friend of relative who may enjoy it'. Who are you kidding?

Udo Schuklenk

Tuesday, August 16, 2016

Conscientious objection accommodation in medicine - a new look

I published in 2015 an Editorial in Bioethics where I took the stance that we have no good ethical reasons to accommodate conscientious objectors in medicine in liberal democracies. That Editorial led to a bit of a splash among religious activists who liberally make use of conscientious objection accommodation afforded to them in order to avoid providing professional services to patients. There has also been a more considered reply by Christopher Cowley that was published in Bioethics. Julian Savulescu, the Editor of the Journal of medical ethics was another target of Cowley's reply. Julian and I have finally got around to writing a reply to Cowley. It's forthcoming in Bioethics (as an Editor of the journal, I was, of course, not involved in the decision-making process on that manuscript). Look out for it, it's gone into production. The title of our paper: Doctors have no right to refuse medical assistance in dying, abortion or contraception.

The American Medical Association's Council on Ethical and Judicial Affairs produced a new opinion on conscientious objection. The Journal of Clinical Ethics organised a symposium with replies to that document. My paper titled Conscientious objection accommodation in medicine: Private ideological convictions must not trump professional obligations is scheduled for publication in that journal this fall. Check it out.

Last but not least, Ricardo Smalling and I had a lengthier review piece in the Journal of medical ethics on conscientious objection. Check it out here. You won't be surprised by its title, I suspect: Why medical professionals have no moral claim to conscientious objection accommodation in liberal democracies. The journal apparently received a couple of responses and so we're currently busy drafting a response to those.

The Journal of medical ethics as well as the Cambridge Quarterly of Health Care Ethics are currently in the process of putting out special issues dedicated to the conscientious objection problem. Look out for that forthcoming content.

Why is there this sudden flurry of publications and special journal issues on this subject matter? I think it has mostly to do with the fact that conscientious objectors make reliable service delivery ever more difficult with their accommodation demands. Court challenges are under way in Canada where Christian doctors demand to be accommodated in the country's coming medical aid in dying regime. They even refuse to transfer assistance-seeking eligible patients to colleagues who would provide the medical services that these patients would be entitled to receive. It cannot surprise, seeing such unprofessional conduct, that bioethicists the world all over have become interested in this issue again.

Let the arguments begin.

Wednesday, July 20, 2016

Is assisted dying the baby boomers’ last frontier?

It is truly remarkable how radically Western societies were remade by the baby boomer generation. They campaigned for the decriminalisation of abortion and succeeded in most liberal democracies. As Carole Levine rightly notes, ‘the women’s movement of the 1960s and 1970s was a frontline attack on (the) patriarchal and authoritarian model’ of decision-making in the medical profession.[1] Baby boomers also campaigned for the decriminalisation of same sex acts and eventually brought us marriage equality, even in a country as conservative as the United States. They campaigned for the decriminalisation of (soft) drugs and we are beginning to see increasing numbers of jurisdictions dabbling in the decriminalisation of at least cannabis. This, of course, is also partly due to the failure of the war against drugs. Restrictive drug legislation is reportedly responsible for about 5 billion people’s lack of end-of-life access to opioids across the globe.[2]

With baby boomers being anywhere between 52 and 70 years of age, invariably the end of life is coming into focus for an increasing number of people belonging to this generation. They would have seen parents and relatives suffering often terribly at the hands of a medical system that ignored their end-of-life choices in favour of life support at nearly all cost. Even today about 35% of patients who are at the end of the life receive non-beneficial medical care, including care that will result in a deterioration of their quality of life, such as, for instance, radiotherapy and dialysis.[3] Bioethicists have long proposed a patient focused approach to these kinds of challenges. Robert Veatch, for instance, noted that ‘the arrogance of the medical professional claiming that he or she (mostly ‘he’) had the authority to decide, even against a patient’s wishes, what was best for the patient was morally indefensible. Physicians were deciding not only that continued torturous life-support was in a dying person’s best interest, but that the physician’s ‘order’ justified continued infliction of that torture.  That ethic seemed so wrong, so contrary to any moral decency, that it was only natural to challenge it in the name of patient rights.’[4]

It is not terribly surprising, with baby boomer finding themselves – perhaps to their greatest surprise - at the levers of power of the system that they rebelled against in the 1960s and 1970s, that the number of jurisdictions that have decriminalised assisted dying is steadily increasing. Many legislators and judges are baby boomers. Just like baby boomers fought hard for the right to live their life by their own lights, they were bound not to hand control over to others when it came to their own dying. Their own foreseeable demise has clearly focused minds in many a jurisdiction and highest court room. The debates about supposedly significant moral distinctions between active forms of assisted dying and letting die – never an ethically plausible distinction to begin with - seem to have quietly faded away in favour of respect for considered patient choice. Today’s debates focus on the potential for abuse affecting disabled people and vague others labelled ‘vulnerable’ by those campaigning against medical aid in dying. Where you stand on these questions is not that significant as they will be settled by empirical evidence that is accumulating rapidly in the increasing number of jurisdictions that are decriminalising medical aid in dying in different forms and shapes. As I write this the Canadian parliament voted in favor of legislation that would make euthanasia and assisted suicide available to competent terminally ill patients. The availability of legal access to euthanasia is a first in North America. The state of California passed assisted suicide legislation a few months ago. It came into effect in June 2016. Access to assisted suicide in California is limited to terminally ill patients. Similar efforts are underway in a number of other states in the USA. France decided, also in 2016, to introduce a terminal sedation regime for eligible patients. Step by step baby boomers successfully wrestle(d) away control over our dying from the medical profession and restrictive legislation.

The next frontier for our baby boomer legislators and judges, undoubtedly, will be the issue of scope, when it comes to assisted dying. Should it be patient choice, irreversibility of the disease condition and unbearable quality of life as decision-making criteria, or should impending death be added as another necessary condition. The former arguably gels with the ‘my life, my body, my choice’ attitude that drove most of the political campaigns that led to the societal changes mentioned earlier. Historians of bioethics will hopefully keep a watchful eye on these developments.

[1] C. Levine. Analyzing Pandora’s Box: The History of Bioethics. In: L.A. Eckenwiler, F.G. Cohn. 2007. The Ethics of Bioethics: Mapping the Moral Landscape. Johns Hopkins University Press: Baltimore, p. 7.
[2] Economist Intelligence Unit. 2010. The quality of death: Ranking end-of-life care across the globe. London. [Accessed 27 June 2016]
[3] M. Cardona-Morrell, J.C.H. Kim, R.M. Turner, M. Anstey, I.A. Mitchell, K. Hillman. Non-beneficial treatments in hospital at the end of life: a systematic review on extent of the problem. International Journal for Quality in Health Care 2016, 1–14 doi: 10.1093/intqhc/mzw060.
[4] R. Veatch. The Birth of Bioethics: Autobiographical Reflections of a Patient Person. Cambridge Quarterly of Healthcare Ethics 2002; 11: 344-352.

Monday, July 18, 2016

2016 Google Scholar Metrics for Bioethics journals

I'm afraid the list isn't quite complete as for some reason at least one well-known quality publication, the Kennedy Institute of Ethics Journal, just doesn't pop up. It's also the case that some journals that were covered in the past have disappeared from google's radar, even though they continue to exist. This info from google's media release might explain the inclusion and exclusion of particular journals: 'Publications with fewer than 100 articles in 2011-2015, or publications that received no citations over these years are not included.'

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

Usual CoI blurb applies. I co-edit two of the journals in this list. List up-dated July 2016.

*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 2010-2014 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

                                                                                                    H5 index   H5 median

Journal of Medical Ethics                                                             29           42

Nursing Ethics                                                                              29           36

Science and Engineering Ethics                                                 26             36

The American Journal of Bioethics                                              26           36

Journal of Law, Medicine and Ethics                                           26           34

Neuroethics                                                                                   24           30

Bioethics                                                                                       22           31

Ethics                                                                                           20            35

bmc medical ethics                                                                       20           29

Hastings Center Report                                                                 19           29

American Journal of Bioethics Neuroscience                            19             28

Medicine, Health Care and Philosophy                                       17            22

Journal of Empirical Research on Human Research Ethics         16           18

Journal of Medicine and Philosophy                                            15           25

Nursing Philosophy                                                                        15          23

Perspectives in Biology and Medicine                                           13          15

Public Health Ethics                                                                       14           27

Developing World Bioethics                                                         14           20

Health Care Analysis                                                                     14          19

Journal of Bioethical Inquiry                                                           14           18

Theoretical Medicine and Bioethics                                               14           17

HEC Forum                                                                                     13           26

Cambridge Quarterly of Healthcare Ethics                                     13           20

The Journal of Clinical Ethics                                                        13           18

NanoEthics                                                                                     11           16

Indian Journal of Medical Ethics                                                     10           12

Asian Bioethics Review                                                                   8              18

International Journal of Feminist Approaches to Bioethics              8             15

Narrative Inquiry in Bioethics                                                           8              13

South African Journal of Bioethics and Law                                     8             10

Ethik in der Medizin                                                                         7              12

Clinical Ethics                                                                                   7            8  

Christian Bioethics                                                                            5              10

Yale Journal of Health Policy, Law, and Ethics                                5             8

Monash Bioethics Review                                                                 5              6

Journal international de bioethique                                                    4              7

National Catholic Bioethics Quarterly                                              4              4

Monday, June 13, 2016

AIDS and Medical Aid in Dying - are there lessons to be learned?

Canadians debate currently where to draw the line in the sand in terms of eligibility criteria for medical aid in dying. The federal government is determined to push thru a bill that is uncontroversially unconstitutional by limiting access to terminally ill patients.

Today the Globe and Mail (a paper that supports our government's restrictive approach to medical aid in dying) published an unusually thoughtful commentary by Konrad Yakabuski in support (you won't be surprised to hear) of said restrictive approach.

Yakabuski and I have something in common, something important. We both lived thru the early years of the HIV/AIDS epidemic, we both lost loved ones to the disease. Yakabuski mentions that his brother and several friends of his died of the ravages of AIDS, 'with dignity, the old-fashioned way'. Yakakuski's main point (a very reasonable point) is that eventually treatments for HIV infection came about that permit HIV infected individuals today to live basically healthy lives. If medical aid in dying would have been available to them, some HIV infected patients may have chosen to end their lives prematurely, however, if they had decided to stick it out, they might have been able to hang on for long enough to benefit from the life preserving drug regimes that exist today. He then makes the same claim about anti-depressants (arguably he is terribly mistaken on that frontier, but that's unimportant for the purpose of his broader point, it doesn't rely on him being right on that count).

Well, I'm a gay man who has seen very many of his friends succumb to HIV infection in the same years that Yakabuski writes about, and I disagree entirely with his argument and his policy recommendations. You won't be able to see this response in the Globe and Mail, unfortunately, because the paper has been reduced to a propaganda vehicle for a restrictive assisted dying regime.

There has been some debate both among medical ethics people, but certainly also among HIV infected people about medical aid in dying, in the 1980s. One leading bioethics journal, the Hastings Center Report, published many years back a piece by my friend, the late Michael Callen, entitled 'If I have AIDS, then let me die now.' Michael had, of course, no intention whatsoever, to die on AIDS. In fact, years after he published his commentary he wrote a book called Surviving AIDS. Eventually he succumbed to the disease, shortly before life-preserving treatment regimes came onto the market. I have lost far too many friends like Michael.

But I digress, let's return to Yakabuski's commentary. Why would educated AIDS activists, like Michael, have written a commentary for a mainstream medical ethics journal in which they argued that they should be able to receive medical aid in dying when they thought their time had come? Simply put, it was about self-determination. Something maligned by Canadian anti-choice activists as 'autonomy fundamentalism' (not Yakabuski's words!). It was a choice for Michael to make for himself, not for me, not for government, it was his call to make.

The problem with timelines in this context is that we can never know whether, if at all, and when a successful treatment for a particular ailment comes onto the market. Yakabuski briefly mentions the horrible deterioration in health and quality of life HIV infected people in those days experienced. It was worse than that, they had seen friends and lovers wither away, they knew what was coming their way. It's all nice and well to describe this withering away as 'dignified and old-fashioned', but frankly, for many of these young people who died during those years there was nothing dignified about their dying, and no amount of hand-holding and caring would have made their disintegrating lives any more dignified. I am deeply troubled about the euphemisms Yakabuski deploys to describe what was actually happening in our community. I also have no doubt that that is how he subjectively experienced or remembers his brother's death. It is not an experience that is representative of how dying of HIV was experienced by many, if not most, of those who died in those years.

The question then, surely, is whether these patients were entitled to call it a day when they decided they had enough, or whether the state had any right (as the Liberal government's legislation proposes) to force them to stick around and deny them access to medical aid in dying on the ground that some drug might come about. My answer: Of course they were entitled to make those choices and see those choices respected and supported. That the state would think it has a role to play in forcing such patients to stick around no matter what, or commit suicide by some gruesome means, is just mind boggling.

HIV is different to depression, of course, in that it was actually an illness where death would have been reasonably foreseeable, so HIV patients arguably would have met the standard set out in the restrictive government draft legislation of bill C14.

I have published a year ago with Suzanne van de Vathorst a lengthy piece on treatment resistant depression and medical aid in dying. May be take a minute or two to read it. It's available here. The same link will also take you to published responses, including one or two making Yakabuski's case, as well as our considered response to those arguments. The article also supplies hard data on the actual large scale failure of available treatment modalities that Yakabuski glosses over in his piece. The argument here is the same as above, if a patient is competent at the time of decision-making and he or she does not consider their lives worth living, and available treatment options have been exhausted, we as a society have no right whatsoever to force such people to stick around in the hope that some treatment might come about during their lifetime. It's a decision only such patients can make for themselves. Whatever they decide, they deserve our support.

Thursday, June 09, 2016

State of Affairs: Canada's Medical Aid in Dying Legislation

I have explained on this blog (just see the entry below) how Canada's Liberal government's draft legislation aims to deprive Canadians who are not terminally ill, but who are eligible for medical aid in dying, of their Charter rights. A fairly large number of constitutional law experts, including the lead counsel in the Carter case that led to the Supreme Court judgment, warned the federal government that its legislation would be contested in the courts and would eventually be thrown out by the Supreme Court. Government apparently thought it could thumb its nose at the judgement by redefining clear Supreme Court of Canada criteria and pretending that black is kinda white. Since then two Canadian courts have heard cases where competent patients who are not terminally ill appealed to receive medical aid in dying. Government lawyers in both cases were sent packing and told in no uncertain terms that their insistence on the eligibility standards expressed in the draft legislation is unacceptable because these standards are unconstitutional

Yesterday the Canadian Senate weighed in and removed the terminal illness threshold the Liberals were so keen on, precisely because the majority of Senators realised that the legislation proposed by the federal government is unconstitutional. Our Justice Minister meanwhile insists that her (unconstitutional) 'balance' is just right, and waffles a bit about not further defined 'vulnerable' people that would be best 'protected' if her government's proposed restrictive regime was passed by the Senate. It's only mildly amusing that she deploys the same vacuous rhetoric here that the previous Conservative government deployed.

The question is why the Liberals would engage in that sort of thing. There are persistent rumours that there are a fairly large number of religious conservatives in the Liberal caucus who care more about their religious beliefs then about Canadians' constitutional rights. This in turn forced the Trudeau government to try to legislate hard-right on this issue, to the dismay of virtually every relevant legal expert in the country. What does surprise is that these folks seem to think that their personal beliefs somehow trump their obligation to legislate in line with our Charter of Rights and Freedoms and in line with the criteria the Supreme Court spelled out.