Tuesday, July 25, 2017

2017 Bioethics journals h5 / h5-median index

I suspect I could have had this easier, but be that as it may, I searched for bioethics/health care ethics/ medical ethics journals on google scholar to see how they fare in terms of citations over the last five years.

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 July 2017. 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

Nursing Ethics                                                                              34           44
Journal of Medical Ethics                                                             31          42
The American Journal of Bioethics                                              28           37
Journal of Law, Medicine and Ethics                                           27           40
Science and Engineering Ethics                                                        30           45
Bioethics                                                                                       25          31       
Neuroethics                                                                                   23           36
bmc medical ethics                                                                       23           32
Medicine, Health Care and Philosophy                                        20         25
Hastings Center Report                                                                19          32
American Journal of Bioethics Neuroscience                              18            28
Journal of Medicine and Philosophy                                            18          22
Journal of Empirical Research on Human Research Ethics         17          20
Health Care Analysis                                                                     16       22
Nursing Philosophy                                                                        15          29
Developing World Bioethics                                                          15          28
Journal of Bioethical Inquiry                                                           15          16
Theoretical Medicine and Bioethics                                               14          18

Public Health Ethics                                                                       13          22

Cambridge Quarterly of Healthcare Ethics                                     13          18
HEC Forum                                                                                     12          28
Kennedy Institute of Ethics Journal                                                12          19
Perspectives in Biology and Medicine                                                12        15
NanoEthics                                                                                     12          16
The Journal of Clinical Ethics                                                        12          16
Indian Journal of Medical Ethics                                                     11          18
American Journal of Bioethics Primary Research                           11           15
Journal of Medical Ethics and History of Medicine                          9              17
Narrative Inquiry in Bioethics                                                                8              13
International Journal of Feminist Approaches to Bioethics              8             11
Ethik in der Medizin                                                                         8              10
South African Journal of Bioethics and Law                                         8             9
Medical Ethics Journal                                                                     7              9
Yale Journal of Health Policy, Law, and Ethics                                    6             12
Monash Bioethics Review                                                                 6              8
Asian Bioethics Review                                                                   5             10
Christian Bioethics                                                                            5              6
Journal international de bioethique                                                         4              8
Ethics in Biology, Engineering and Medicine                                   4              6
European Journal of Bioethics                                                         4              4
National Catholic Bioethics Quarterly                                              3              5

*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 2012-2016 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

Thursday, July 06, 2017

Viewpoints: should euthanasia be available for people with existential suffering?

Here's a piece I have put together jointly with Xavier Symons for The Conversation.

Euthanasia debates often focus on people experiencing unbearable physiological or psychological suffering. But research suggests “loss of autonomy” is the primary reason for requesting euthanasia, even among patients with terminal cancer. There have also been suggestions existential suffering could be one of the main motivations behind such requests.
Existential suffering refers to an individual experiencing a lack of meaning or sense of purposelessness in life. Such sentiments bring feelings of weariness, numbness, futility, anxiety, hopelessness and loss of control, which may lead a dying patient to express a desire for death.
Some bioethicists argue it is inconsistent to allow euthanasia for terminal illness but not for existential suffering, as both are a source of profound pain and distress. While existential suffering usually tracks closely with catastrophic illness, it’s worth considering a situation in which there are no motivating medical reasons for a request for euthanasia or assisted suicide. Should a person be eligible purely on the basis they no longer wish to live?
A case in point: a largely healthy retired palliative care nurse in the UK who ended her life at an assisted suicide clinic in Switzerland. Should she have received medical aid in dying based on her carefully considered decision that she did not want to subject herself to the perceived awfulness of the ageing process?

The case against

Xavier Symons, Research Associate, University of Notre Dame Australia
Some may think people who request euthanasia do so because of excruciating and unremitting pain. The reality is almost always more complex. Literature on assisted dyingsuggests individuals who request euthanasia are typically suffering from a profound sense of purposelessness, loss of dignity, loss of control, and a shattered sense of self.
A 2011 study of Dutch patients who requested euthanasia indicated that “hopelessness” – the psychological and existential realisation one’s health situation will never improve – was the predominant motivation of patients who requested euthanasia.
And a recently published Canadian study of requests for medical assistance in dying stated “loss of autonomy was the primary reason” motivating patients to end their lives. Symptoms also included “the wish to avoid burdening others or losing dignity and the intolerability of not being able to enjoy one’s life”.
One option to address such requests is to establish a state apparatus to assist patients in ending their lives. An alternative, and one I would advocate, is to address deficiencies in health care infrastructure, and attempt to alleviate the unique suffering that drives patients to request euthanasia in the first place.

Spiritual or existential care can help someone who feels their life has lost meaning. from shutterstock.com

New approaches to end of life care, such as spiritual or existential care, engage at a deep level with the complexity of the suffering of patients with terminal illness. And, as has been stressed by several commentators, there is a need to improve access to palliative care in poorer regions, and provide optimal symptom management for patients wishing to die at home.
We could hypothesise about various situations where a person might request euthanasia without having a medical condition. Someone might wish to hasten their death because they are tired of life or afraid of ageing or death.
These cases are interesting insofar as they are not motivated by an underlying pathology. Yet there is much reason for concern.
Sanctioning euthanasia for the tired of life veers too close to a government endorsement of suicide. Where the state has a significant stake in suicide prevention, sanctioned euthanasia for existential suffering is not only counterproductive, it’s dangerous. Fundamentally, we would erode any meaningful difference between cases of suicide we regard as acceptable, and those we see as regrettable and befitting state intervention.
We might regard it as regrettable that an educated, wealthy 30-year-old takes their own life due to an existential crisis. Yet it is difficult to say how this is different in morally relevant respects from a 75-year-old who feels their life is complete and is undergoing an existential crisis.

The case for

Udo Schuklenk, Professor and Ontario Research Chair in Bioethics, Queen’s University, Canada
This discussion is mostly hypothetical. There seem to be few, if any, real-world cases where a competent person’s request for an assisted death is not motivated by an irreversible clinical condition that has rendered their lives not worth living in their considered judgement.
For instance, in the Netherlands, most people who ask for euthanasia and who are not suffering from a catastrophic illness, typically experience a terrible quality of life that is caused by an accumulation of usually age-related ailments. These involve anything from incontinence to deafness, blindness, lack of mobility and the like.
We do not give up on life for trivial reasons. Just think of the many refugees who – on a daily basis – are willing to risk their lives to escape an existence they do not consider worth living. Ending their lives is not typically on top of their to-do list.

Think of the many refugees who risk their lives to escape an existence they do not consider worth living. Ending their lives is not on top of their to-do list.ZEIN AL-RIFAI/EPA

The case of the anti-choice activists – who deny there is ever a justifiable reason for euthanasia – has been intellectually and politically defeated. None of the jurisdictions that have decriminalised assisted dying have reversed course, and more jurisdictions are bound to make this end-of-life choice available.
Public support remains strong in each permissive jurisdiction, particularly so in Belgium and the Netherlands where the majority of citizens support the existing laws.
Inevitably the question of scope must be addressed: who ought to be eligible to ask for and receive assistance in dying? If a competent person wishes to see their life ended for non-medical reasons, and asks for assistance to do so, I think a just society ought to oblige him or her if the following conditions are met:
  1. the person has decisional capacity (is of “sound mind”)
  2. the decision is reached voluntarily (without coercion)
  3. no reasonable means are available, that are acceptable to the person, that would render their lives worth living again in their own best judgement
  4. based on everything we know, the condition that motivated their request is irreversible.
The view that medicine is a profession aimed only at maintaining life, regardless of a patient’s quality of life, is dying its own death. If a clinical, psychological or other professional intervention does not benefit a patient to such an extent that they consider their continuing existence worthwhile, by definition that is not a beneficial intervention.
Equally, if an intervention, at a burden acceptable to the person, renders in their considered judgement their lives worth living again, they will not ask for an assisted death.
In most corners of the world people have fought hard to increase their individual freedoms to live their lives by their own values. A significant state interest is harmed if the state wishes to infringe on such autonomy rights.

Xavier Symons
It is true the health system, and indeed the state, should respect patient autonomy. Yet in practice we often put other considerations ahead of concerns like autonomy. Patients may not receive the treatments they request for a variety of reasons, like they may be prohibitively expensive, have a negligible chance of success, or no medical justification.
I believe if it is harmful to the interests of the state to legalise euthanasia for patients without a terminal illness, then the state has a right to refuse.
Significantly more research needs to be conducted on the social impacts of euthanasia, and physician assisted suicide, for patients without a medical condition. In this case, we have no “Oregon model” – an assisted suicide regime seen by many as an example of a safe and well-regulated system – to confirm or assuage our concerns. Jurisdictions such as Oregon only allow assisted suicide for patients with a terminal illness.

Udo Schuklenk
I echo Xavier’s plea to improve health care in order to improve our quality of life, and, as a likely corollary of this, to reduce the number of requests for medical aid in dying. However, even in the best of all possible health care worlds, unless unbearable suffering itself has been eliminated, some patients will ask for an assisted death. No amount of “dignity therapy” rhetoric and references to small-scale studies changes that fact of the matter.
Xavier correctly mentions some reasons for doctors justifiably not providing certain patient-requested medical care. They are all based in different ways on harm-to-others justifications such as resource allocation rationales, or are futility-related (arguably also a case of harm-to-others given the reality of limited health care resources). This reasoning is not applicable to the case under consideration given the self-regarding nature of the request.
Xavier is correct that the state would be under no obligation to legalise euthanasia for not catastrophically ill patients if that was significantly harmful to the interests of the state. However, there is no evidence that the availability of euthanasia is harmful to state interests.
The original Conversation piece can be found here.

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. http://graphics.eiu.com/upload/eb/qualityofdeath.pdf [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.