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Healthcare Ethics Consultants’ Place in the World of Health Care ‘Professionals’

17 May, 16 | by BMJ

Guest Post by Abraham Schwab

During a recent meeting at a local hospital, I was asked what role a good Healthcare Ethics Consultant should play.  I gave a more ambiguous answer than I would like.  I pointed out that Healthcare Ethics Consultants can help patients, providers, and administrators come to a common understanding of the values at play in a particular health care situation.  A Healthcare Ethics Consultant can also help them reach a decision that reflects the medical realities, the patient’s values, and, as appropriate, the families’ values.  But I also pointed out that the role of the Healthcare Ethics Consultant is determined by the particular institution’s needs.  One institution’s Healthcare Ethics Consult can look like another’s Family Care Conference or another’s Palliative Care Consult and so on.  In short, the Healthcare Ethics Consultant’s role and responsibilities is not neatly defined across institutional boundaries.

The American Society of Bioethics and Humanities (ASBH) Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants aims to “set out the core ethical responsibilities of individuals performing healthcare ethics consultation.”  If successful, it would provide guidance as clinical ethicists and others attempt to answer the question, “What is a Healthcare Ethics Consultant responsible for?”.  Looking over the ASBH’s code, however, it’s hard to imagine using it to provide a content-rich and clear answer.   As I argue in my paper, “The ASBH Code of Ethics and the Limits of Professional Healthcare Ethics Consultations”, the code falls short of its goal in two substantive ways.  First, the Code implicitly relies on the category “professional”, despite the fact that this category lacks clear definition.  Second, the code articulates only vaguely defined responsibilities.

The ASBH’s Code of Ethics is a short document – less than five pages – but invokes the word “professional” 14 times.  That the word is not defined in the code is of no surprise: the use of “professional” is common coin in health care fields.  And yet, the category “professional” is poorly defined.  As I argue, the best available definition is a formal one: professionals share a common commitment to something.  But that something remains undefined in general.  The concept of “profession” is a placeholder indicating that practitioners of a particular occupation have taken on certain additional obligations, and those obligations are specific to the profession in question.  When an occupation claims to be a “profession”, a necessary follow-up question is, “But what does that mean for your occupation?”  Ideally, the ASBH’s Code of Ethics would answer this question for Healthcare Ethics Consultants.

In this regard, the ASBH’s code falls far short.  Most of the broadly defined obligations could be the obligations of any occupation.  The obligations also include conceptual confusions, from conflating privacy and confidentiality to invoking the requirement that Healthcare Ethics Consultants should meet professional standards – the very standards that the Code itself should be providing.

Despite these shortcomings, I write to criticise the ASBH code, not to bury it.  Healthcare Ethics Consultants play important roles in the institutions in which they exist.  Help in defining their responsibilities is needed.  And so I also provide a suggestion for moving the ASBH code forward.  Specifically, the relationships between  “professionals” in health care has shifted.  The isolated responsibilities of the isolated physician have gone the way of the country doctor.  The work of health care “professionals” is now the work of a team and a system, and the responsibilities that attach to these “professionals” are team-based responsibilities.  Further defining the responsibilities of Healthcare Ethics Consultants will require a more comprehensive collaboration across disciplinary boundaries.

If the ASBH’s Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants is to help answer the question, “What role does a Healthcare Ethics Consultant play?”, it’s next iteration will have to provide more narrowly and clearly defined responsibilities.

Read the full paper here.

China’s Terrible Transplant Secret

9 May, 16 | by BMJ

Guest Post by Wendy Rogers
Earlier this year, a Malaysian politician, Datuk Bung Moktar Radin, travelled to China to receive a kidney transplant.  The details are scanty. There is no mention of the source of the kidney that the Malaysian MP received.  Reports of foreigners travelling to China for transplants rarely make the media, yet they may be an important link in trying to untangle the secrets of China’s secretive transplant system.

Back in the early to mid-2000s, Chinese hospitals brazenly advertised on the internet for foreign customers, offering kidney, liver and heart transplants with astonishingly short waiting times of 2-4 weeks.  In contrast, patients in countries like Australia, the UK, and the US typically wait years, with many dying before an organ becomes available.  Despite initial denials, Chinese officials eventually admitted that virtually all their organs were sourced from executed prisoners.  Using executed prisoners as organ donors is uniformly considered unethical because of concerns that prisoners may be manipulated or coerced rather than being genuine volunteers.  Voluntary donation is at the heart of most transplant programs world-wide, although there are exceptions.

Violating this ethical principle by selling organs from executed prisoners to foreign (and Chinese) patients might seem enough to make China a pariah in the international transplant community.  But this is only one part of China’s terrible transplant secret. Reputable international investigators have gathered evidence that Chinese prisoners of conscience, mainly Falun Gong practitioners, Uyghurs, house Christians and Tibetans, are murdered for their organs.  Falun Gong practitioners, who make up the bulk of the millions of Chinese citizens in “re-education through labour (laojiao)” camps, are subject to medical tests to examine the health of their transplantable organs.  This process creates a living organ bank where foreign patients and wealthy Chinese citizens can be matched to potential donors, who are then killed on demand so that their organs can be transplanted. This reverse matching process guarantees a suitable organ within a very short waiting period. more…

Special Obligations: What Can Physicians Learn from Parenting?

6 May, 16 | by bearp

Guest post bJon Tilburt and Baruch Brody

Editor’s note: this post introduces a recent paper by the authors now in press at the Journal of Medical Ethics: “Doubly distributing special obligations: what professional practice can learn from parenting

Gaps between our ideals and our behavior are common. Sometimes what we say we believe and what we actually practice differ because we fail to live up to what we actually believe. Doctors who are disingenuous, selfish, corrupt, or duplicitous in their actions must own their failures to live up to their said ideals. Other times we use oversimplified language to describe a said ideal because the wording feels right even when that language is not strictly speaking accurate and never has been completely true in lived reality.

According to a traditional ethic of medicine, part of what makes medicine a profession is that doctors sign up for a greater level of service and self-effacing care to some people, namely our patients.  Taking care of my patients is my particular job.  If I consider someone my patient, that means something about what I owe them in terms of time, attention, and care.  I will stay late for my patient; I don’t have special obligations to all of the patients who show up at my institution or who live in my community; I have special obligations to my patients.

more…

Where to Publish and Not to Publish in Bioethics

5 May, 16 | by bearp

Guest Post by Stefan Eriksson & Gert Helgesson, Uppsala University

* Note: this is a cross-posting from The Ethics Blog, hosted by the Centre for Research Ethics & Bioethics (CRB) at Uppsala University. The link to the original article is here. Re-posted with permission of the authors.

Introduction

Allegedly, there are over 8,000 so-called predatory journals out there. Instead of supporting readers and science, these journals serve their own economic interests first and at best offer dubious merits for scholars. We believe that scholars working in any academic discipline have a professional interest and a responsibility to keep track of these journals. It is our job to warn the young or inexperienced of journals where a publication or editorship could be detrimental to their career. Even with the best of intent, researchers who publish in these journals inadvertently subject themselves to criticism. We have seen “predatory” publishing take off in a big way and noticed how colleagues start to turn up in the pages of some of these journals. This trend, referred to by some as the dark side of publishing, needs to be reversed.

more…

Patient Views about Consent, Confidentiality & Information-Sharing in Genetic Medicine.

29 Apr, 16 | by BMJ

Guest post by Sandi Dheensa, Angela Fenwick and Anneke Lucassen

Imagine you’re a clinician in genetic medicine.  For a while, you’ve been seeing Joe Bloggs, a patient with a mutation in a gene that’s caused a hereditary form of colon cancer.  As is your standard practice, you help Joe identify who in his family is also at risk and spend some time talking about how he’ll tell them.  The Bloggs’ are a large bunch: Joe has children, siblings, nieces, nephews, aunts, uncles, and cousins, all of whom might have the mutation.  Anyone who tests positive would be eligible for regular bowel screening, which – while not pleasant – makes it much more likely that any cancer will be caught at a  treatable stage.  Unfortunately, despite all this, you’ve reason to believe that Joe hasn’t told his relatives anything and now you’re unsure what to do.

What are your options?  You might say Joe’s confidentiality and autonomy are paramount: it’s up to him what he does, and, as his doctor, you’ve done your part by telling him the cancer is heritable.  Or you might argue that Joe’s family needs to know – but how  and when?  The GMC says you can share a patient’s personal information without consent if the benefit of doing so outweighs the risk: does the situation meet this criterion?  What if you share the information and Joe sues you for breaching his confidentiality?  But what if you don’t say anything and a relative develops a cancer that could’ve been prevented?  Won’t their trust in the health service be shaken if they knew you’d chosen not to share?  Indeed, the UK and Netherlands have recently seen cases where relatives  questioned the health service’s non-disclosure of relevant information.

Taking a “joint account” view of confidentiality from the outset would’ve avoided these situations.  The joint account involves viewing genetic and personal information as distinct: the possible inheritance of cancer is common to the whole Bloggs family, but that Joe has stage III bowel cancer is personal.  If genetic information is confidential to the family, not just the tested patient, you’d have told Joe upfront, before even drawing his blood, that you’d look into sensitive and appropriate ways to let his relatives know the information if they might benefit from it.  Later down the line, when it materialised he hadn’t told his family, it would’ve been easier to negotiate what to do.

In our recent JME paper, we explored the views of people affected by hereditary cancer and other conditions regarding the distinction between genetic and personal information, the levels of confidentiality afforded respectively, and healthcare professionals’ roles and responsibilities toward their patients’ relatives.

In line with the joint account approach, our interviewees considered their signs, symptoms, and diagnoses as personal, but thought genetic risk was familial and that their relatives needed to know about it. more…

No to Conscientious Objection Accommodation in Health Care

22 Apr, 16 | by BMJ

Guest post by Udo Schuklenk

Canada is currently in the midst of a national debate about the scope of assisted dying regulations and policies.  It’s a result of a 2015 Supreme Court ruling that declared parts of the country’s Criminal Code null and void that criminalises assisted dying.  As you would expect, there is a lot of forth and back happening between proponents of a permissive regime (à la Belgium/ Netherlands), and those who would like a restrictive regime.  Another issue is being debated as well as litigated in the courts, the seemingly intractable question of conscientious objection accommodation.

In preparation for incoming provincial policies on assisted dying, the provinces’ statutory medical bodies, such as for instance the College of Physicians and Surgeons of Ontario, have stipulated that while doctors are not obliged to provide directly assistance in dying to eligible patients, they must transfer patents on to a colleague who they know will provide that service.  A similar stance has been taken in the recommendations issued by an expert advisory group appointed by the country’s provinces and territories, who are ultimately responsible for health care.  The same holds true for a report issued by a special joint parliamentary committee of the country’s national parliament.  Unsurprisingly, religious doctors’ groups, but not only religious doctors’ groups, are all fired up about this and have taken, for instance, the Ontario College to court to stop this policy from being implemented.  Their argument is that conscientious objectors among its members must not be forced to provide even this level of assistance if their conscience dictates otherwise.

It is likely that the compromise reached will entail an obligation on health care professionals to transfer patients on to a willing health care professional.  That will not satisfy the objectors, because if you really hold the view that assisting a competent patient who meets the criteria stipulated by the Supreme Court is tantamount to murder, this compromise would simply translate into you passing on your patient to someone who you know would ‘murder’ that patient.  It is also not satisfactory from the patient’s perspective, because they could – depending on where they live – be forced to travel great distances in order to meet the obliging health care professional.  That could well prevent some patients from access to an assisted death.

The question arises why we should accommodate conscientiously objecting health care professionals in the first place.  It is somewhat taken as a given in much of the medical ethics literature that conscientious objectors are deserving of some kind of accommodation.  Arguments often focus on what makes a conscientious objection deserving of accommodation, and on what reasonable limits should be imposed on conscientious objectors, as opposed to the question of whether conscientious objectors deserve accommodation at all.

In our paper we develop a more radical argument for the view that health care professionals have no moral claim to conscientious objection accommodation in liberal democracies.  We put forward a number of arguments to support that conclusion.  For starters, it is impossible to evaluate the truth of the authoritative documents that motivate particular consciences.  The courts in many jurisdictions that have had to deal with conscience related cases have conceded that much.  It turns out that we also actually cannot test whether someone’s conscience claims are actually true, in the sense that that person actually has those convictions.  It might just be a convenient cop-out, and yet we readily accommodate objectors at great inconvenience to patients and significant cost to health care systems.

Why should we accommodate privately held convictions that objecting professionals would like to prioritise over their professional obligations to patients?   That demand seems unprofessional in its own right.  The promise to serve the public good and the individual patient first goes right out of the window, there and then.  These professionals joined their profession voluntarily and they knew that the scope of professional practice and their obligations to patients wouldn’t be defined by them personally, and also that changes to scope would invariably occur over time.  The content of conscientious objections is by necessity arbitrary and encompasses any number of practical refusals to provide services.  No health care system should permit its monopoly service providers that sort of freedom when it comes to the delivery of the very same services that they voluntarily contracted to deliver.  Permitting such conscience accommodations ultimately subverts the very reasons for why society has professions in the first place.

 

Udo Schuklenk tweets @schuklenk

Read the full paper here.

How We Feel about Human Cloning

7 Apr, 16 | by BMJ

Guest post by Joshua May

Suppose you desperately want a healthy child to build a family of your own.  As is increasingly common, however, you can’t do it naturally – whether from infertility, a genetic disease you don’t want to pass on, or a non-traditional relationship.  If you seek a genetic connection with the child, there are some limitations to the main alternatives: adoption, surrogacy, and in vitro fertilization.  You may yearn for more options.

How would you feel about cloning?  Take the nucleus of a cell from yourself or a loved one, then put it into an egg that will eventually develop into a baby that shares nearly all the genes of the donor cell.  The resulting baby will simply be a kind of ‘delayed twin’ of the donor.

Most people believe this is immoral.  There’s a bit more support for therapeutic uses that merely create new tissue, for example.  But, at least in the US and UK, people overwhelmingly condemn cloning for the purposes of creating new human lives.  In fact, a recent poll suggests there is little disagreement in America over this issue, where human cloning is among the most widely condemned topics (alongside polygamy and infidelity).

That’s what people think, but how do they feel?  Controversial bioethical issues often generate intense feelings.  Some bioethicists treat cloning in particular as a line in the sand that we mustn’t cross, for fear of sliding down a slippery slope to a dystopia.

Consider Leon Kass, who played a major role in public policy as chair of George W. Bush’s President’s Council on Bioethics.  Kass argues that there is wisdom in repugnance toward human cloning, allowing us to ‘intuit and feel, immediately and without argument, the violation of things that we rightfully hold dear’.  As opposed to mere unease or sadness, Kass and some others have argued that disgust is such a powerful and distinctive emotion that we should take it seriously as a moral guide when deliberating about ethical issues.

An empirical claim lurks.  Such bioethicists assume that people in general share their reaction of repugnance. Besides, if we can uncover the emotional reactions people tend to feel toward disputed moral issues, then we can better understand why they hold the beliefs they do.  Does the prospect of cloning humans make us sick?  Scared?  Sad?  Angry?  Excited?  At ease?

In my paper, I provide some initial evidence that people (at least in the States) feel primarily anxious and curious about human reproductive cloning.  These were the most frequently self-reported negative and positive emotions, not disgust, fear, sadness, anger, excitement, amusement, comfort, or joy. more…

Nurses Cannot be Good Catholics

31 Mar, 16 | by BMJ

Guest Post by John Olusegun Adenitire

It seems that if you are a nurse you cannot be a good Catholic.  Or, better: if you want to work as a nurse then you might have to give up some of your religious beliefs.  A relatively recent decision of the UK Supreme Court, the highest court in the country, seems to suggest so.  In a legal decision that made it into the general press (see here), the Supreme Court decided that two Catholic midwives could not refuse to undertake administrative and supervisory tasks connected to the provision of abortions.

To be sure, no one asked the nurses to directly assist in the provision of abortions.  The Abortion Act 1967 says that “No person shall be under any duty … to participate in any treatment authorised by this Act to which he has a conscientious objection.”  The Nurses argued that this provision of the Act should be understood widely.  Not only should they be allowed to refuse to directly assist in abortion services: they should also be entitled to refuse to undertake managerial and supervisory tasks if those were linked to abortion services.  The nurses’ employer was not impressed; neither was the Supreme Court which ruled that the possibility to conscientiously object only related to a ‘hands-on’ capacity in the provision of abortion services.

In a recent paper in the JME (available here) I have argued, albeit only indirectly, that this decision is only half-correct.  Nurses and other medical professionals have a human right to object to the provision of a wide range of services which they deem incompatible with their conscience.  I say that the decision of the Supreme Court is only half-correct because the Court explicitly avoided investigating the possibility of the nurses’ human right to conscientious objection.  Under the Human Rights Act, individuals have a right to freedom of conscience and religion.  That right may, in appropriate circumstances, entail the right for nurses to object to being involved in administrative and supervisory duties connected with abortion services.  If you ask me how the Supreme Court avoided having to consider the nurses’ human right to freedom of conscience and religion I couldn’t tell you.  I bet neither could any of the Law Dons at Oxford.

I realise that by appealing to human rights I am not necessarily making the nurses’ case any more deserving of sympathy that it already is(n’t). more…

The Curious Case of Informed Consent for Egg Donation

17 Mar, 16 | by BMJ

Guest Post by Alana Rose Cattapan

As Michael Dunn writes in a recent editorial for the JME, “no medical ethicist worth their salt would deny that consent is a foundational concept in contemporary medical ethics,” and it is an extraordinary understatement to say that much ink has been spilled on the topic. The spaces between consent in theory and in practice is the subject of Dunn’s editorial, where he describes the ways that scholarship about consent fails, at times, to account for the messiness of the real-life process.

Obtaining consent for egg donation is a particularly messy endeavour. We still know relatively little about the long term effects of egg donation, and donors are sometimes seen as secondary players while the recipient of the eggs – the woman carrying a pregnancy and having a child – is viewed as the primary patient. Like other corporeal donations – blood, organ, bone marrow – egg donation presents a curious case of medical treatment in which there are no physiological benefits to the donor. However, in the case of egg donation, the intervention occurs not to save a life, but rather to fulfil someone else’s desire to have a child.

In Canada, where laws prohibit payment and a grey market in paid donors has emerged, the complexities of obtaining informed consent for egg donation are particularly fraught. Donors that receive payment (are they really donors if they are paid?) have to navigate a system where they are seemingly engaged in something illegal and they may not feel empowered to demand the kind of treatment (including follow-up care) to which they are entitled.

Egg donation, then, must be held to a higher standard of consent than other forms of medical treatment, a position also endorsed by a range of experts including the Canadian Fertility and Andrology Society, and the Society of Obstetricians and Gynaecologists of Canada. In 1999, these organizations issued an ethics statement stating explicitly that given the sensitive nature of egg donation, “obtaining voluntary, uncoerced and informed, written consent is crucial to the clinical acceptability of oocyte transfer between women.”

My study of consent forms for egg donation in Canada, published in the JME, reveals some of the curiosities of obtaining consent in this strange in-between place of medicine and reproduction. more…

Autism, Mental Illness, Euthanasia and the WaPo

5 Mar, 16 | by Iain Brassington

There was a piece in the Washington Post the other day with a striking headline: Where the Prescription for Autism can be Death.

Normally, if we’re saying that the prescription for x is y, we mean to say that y is being suggested as a treatment for x.  Painkillers are the prescription for a bad back, a steroid cream the prescription for eczema, and so on.  Even if you find that phrasing a bit clunky, “prescription” implies the recommendation of a medical expert.  On that basis, the implication here is that somewhere in the world, doctors are seeing patients, diagnosing autism, and saying, “I wonder if the best thing would be to kill you”.  That would be uiruite a Big Deal.

The place in question is Holland.  But a quick look at the article shows – surprise, surprise – nothing of what’s hinted at in the headline.  Here’s the opening few sentences, edited slightly for formatting:

In early childhood, the Dutch psychiatric patient known as 2014-77 suffered neglect and abuse.  When he was about 10, doctors diagnosed him with autism.  For approximately two decades thereafter, he was in and out of treatment and made repeated suicide attempts.  He suffered terribly, doctors later observed, from his inability to form relationships: “He responded to matters in a spontaneous and intense, sometimes even extreme, way. This led to problems.”

A few years ago, 2014-77 asked a psychiatrist to end his life.  In the Netherlands, doctors may perform euthanasia — not only for terminal physical illness but also upon the “voluntary and well-considered” request of those suffering “unbearably” from incurable mental conditions.
The doctor declined, citing his belief that the case was treatable, as well as his own moral qualms.  But he did transmit the request to colleagues, as Dutch norms require.  They treated 2014-77 for one more year, determined his case was, indeed, hopeless and, in due course, administered a fatal dose of drugs.  Thus did a man in his 30s whose only diagnosis was autism become one of 110 people to be euthanized for mental disorders in the Netherlands between 2011 and 2014.

So, then, it’s a story about a man, who happened to be autistic, and who asked a psychiatrist for euthanasia.  After a little to-ing and fro-ing, that request was granted.  There is no reason to believe that this was a case of death being prescribed for autism.  It’s just that he happened to be autistic and to want to die, and a prescription for assistance was provided.  Phrasing is important.

Dutch law on assisted dying is famously liberal; in considering the permissibility of euthanasia for psychiatric as well as somatic illnesses, it is in the minority of the minority of jurisdictions that consider the permissibility of any euthanasia.  I have addressed the question of psychological suffering in relation to euthanasia elsewhere, and shan’t rehearse the details here; suffice it to say, I don’t see any reason in particular to think that mental illness and physical illness should be treated all that differently in principle: more…

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