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“Top of the Lake” may Sink as a Procedural, but Look Beneath the Surface

10 Oct, 17 | by Iain Brassington

A couple of weeks ago, BioNews invited me to review Top of the Lake; but since it’s relevant to the kinds of things that appear in the JME, I thought I’d repost it here.

There’s a moment in the final episode of this second series of Jane Campion’s Top of the Lake where Nicole Kidman’s character Julia reminds Elizabeth Moss’s character Robin, a policewoman and our protagonist, that she, Julia, is the ‘real mother’ of Mary (Alice Englert), the troubled and endangered young woman at the centre of the drama. Mary is adopted: Julia raised her, whereas Robin merely gestated her. An argument about exactly what it means to be a mother is not only important in the relationship between Robin and Julia: it is key to the main plot of the drama.

A body has been found washed up on a Sydney beach, and is discovered to be that of a Thai woman working in one of Sydney’s legal brothels. The dead woman was pregnant when she died, but the baby is not genetically related to her; episode 2 ends with Robin’s realisation that the dead woman was acting as a surrogate. What follows is a story that weaves together the rather murky worlds of the legalised sex trade and commercial surrogacy, which is illegal under New South Wales law.

Now, it’s worth interjecting at this stage with the observation that, if there’s one thing we learn from Top of the Lake, it’s that Australian police have some very sloppy procedures and conflict-of-interest regulations. Gwendoline Christie plays Miranda, with whom Robin is partnered in the investigation; Miranda is not only having an affair with her boss, but is also trying to have a baby by surrogacy with him. Police officers investigating a case that straddles the boundary between legal and illegal surrogacy, at the behest of a commanding officer with whom they are trying to start a family by means of a legally-iffy service? Is there no oversight here? At the same time, via Puss, the none-more-sleazy pimp played by David Dencik, who has something to do with the illegal surrogacy racket and with whom Mary is besotted, the story is also very personal for Robin – just as in the first series. Again: should she really be working on this case?

Admittedly, the implausibilities of this series (or what one hopes are implausibilities, for the sake of policing standards in Australia) ought not to detain us too long. For there are deep and troubling questions that the series raises. more…

Special Issue Call for Papers: Medical Ethics and Treatment Decisions Following Charlie Gard

26 Sep, 17 | by miriamwood

The court case between Charlie Gard’s parents and his Great Ormond Street Hospital medical team attracted international media attention, public protest, and comments from the Pope and US President Trump. Charlie was born with a rare genetic disease, for which there is currently no cure. Charlie’s parents found and crowdfunded for experimental treatment in the US. But his Great Ormond Street doctors argued that his condition had reached a point where such treatment was futile and not in Charlie’s best interests. The case was concluded in July during its second High Court appearance, and Charlie died on July 28, 2017 following withdrawal of treatment. 

At the heart of the disagreement were differing judgements not about medicine, but about medical ethics. The treating UK Doctors, and the US Doctor, Prof Hirano, both agreed that Charlie was unlikely to benefit from Hirano’s treatment. But they differed on whether the uncertain treatment would be in Charlie’s best interests, and whether Charlie’s parents’ wishes should be respected. 

What chance of life is worth taking? How much suffering should be imposed on the patient for that chance? How should we act when there is uncertainty about medical facts such as chances of success or the level of suffering? Should the expected level of ongoing disability if the treatment is successful play a part in such decisions? How much weight should be given to the wishes of parents? What is the appropriate normative threshold for overruling parents’ wishes. Then there are questions about the process itself. How should disputes about treatment be resolved? Is there a better way to make such decisions? Some further questions raised are listed in ‘Hard Lessons: Learning from the Charlie Gard Case‘ 

Submissions engaging with ethical questions raised by the Charlie Gard case (including, but not limited to those listed above) and their implications for future disputes are invited for publication in this special issue. Submitted papers should be up to 3500 words and should be submitted before the deadline of 20th December. Please select the Special Issue “Medical Ethics Following Charlie Gard” when you make the submission. 

Using Best Interests Meetings for People in a Prolonged Disorder of Consciousness to Improve Clinical and Ethical Management

26 Sep, 17 | by miriamwood

Guest Post: Derick T Wade
Article: 
Using best interests meetings for people in a prolonged disorder of consciousness to improve clinical and ethical management

One year ago I wrote the first of two articles on improving the management of people with a prolonged disorder of consciousness. That article was the result of about 18 months writing and re-writing. Now, 12 months later, the sequel promised has arrived. The year has been marked by a continuing tussle between different interested parties over both the making Best Interests decisions and then the execution of the decision. These problems arise because the Practice Direction 9E put out by the Official Solicitor suggested that decisions in all cases of vegetative state and minimally conscious state should come to Court. The harmful consequences have been extensively documented, not least in this journal.

My main arguments have been:

  • It is not possible to be 100% certain about the clinical diagnosis (of level of awareness) or prognosis, and this was the focus of my first paper;
  • Therefore all decisions should be on the basis of Best Interests, as outlined in the Mental Capacity Act 2005 and its accompanying Code of Practice.
  • The major adverse (and unintended) consequences of the Practice Direction needed to be ameliorated, through returning to the process outlined in the Mental Capacity Act.
  • This second article develops a clinical process that should improve care and management whilst re-assuring the many people who did not wish the situation to change – for a variety of reasons.

On July 18th 2017, the article was finished and accepted. Although I hoped it would help the process of changing clinical and legal practice, I felt the legal resistance and process was unlikely to see change in a few years.

On July 24th I and many other interested clinicians attended a meeting at the Ministry of Justice to talk about Practice Direction 9E. The meeting demonstrated several areas of legal inconsistency and clinical concerns. It also showed that some people did not think there was any problem, and were reluctant to allow any change. A working party was proposed, which I thought would delay change for some time; my only hope was that my article would provide a template for any suggested change in clinical practice.

Then, on 31 July 2017, the Court of Appeal (through Lady Justice King) gave a judgement in an appeal relating to the case of Paul Briggs. In that case the family had had to fund their application to the court, their application being concerned with enforcing the Best Interests process. Unfortunately (in my view) the Appeal Court did not agree that Legal Aid should be available to support families when healthcare teams appeared to be failing to apply the Best Interests process.

However there was a major silver lining. Paragraph 26 of Lady Justice King’s submission said:

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Organ Donation: Presumed Consent and Focusing on What Matters

25 Sep, 17 | by bearp

Guest Post by Rebecca Brown

Recent newspaper reports covered the story of Jemima Layzell, a 13 year old who died suddenly of a brain aneurysm in 2012. According to reports, shortly before Jemima died, the subject of organ donation had come up in discussions with her family, prompted by the death of a family friend in a car accident. As a result, Jemima’s family were confident she would have wanted her organs to be donated. Subsequently, Jemima’s kidneys, liver, lungs, pancreas, small bowel and heart were transplanted. This meant that a record eight people’s lives were saved, prolonged or dramatically enhanced as a consequence of Jemima’s and her family’s decision.

Decisions about organ donation are extremely difficult. Family members are approached about the prospect of donating their loved one’s organs at a time of extraordinary distress. Uncertainty about the wishes of the person who has died, along with confusion or scepticism about brain death criteria, religious or other spiritual beliefs about bodily integrity, fear about how donated organs will be used, and inability or unwillingness to engage with any form of decision-making can result in the refusal of family members to allow organs to be donated. In England, family members can prevent donation even when the individual has expressed a wish to donate her organs, for instance, by signing up to the organ donor register.

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Ethical Issues when Modelling Brain Disorders in Non-human Primates

22 Sep, 17 | by miriamwood

Guest Post: Carolyn Neuhaus, Ph.D.
Paper: Ethical issues when modelling brain disorders in non-human primates

In early 2016, Nature published a letter from a group of Chinese researchers reporting that they had created rhesus macaques with “autism-like” behaviours. The macaque was bred with a mutation in the MeCP2 gene. Overexpression of MeCP2 occurs in MeCP2 Duplication Syndrome, a disorder that shares many of its core symptoms with autism spectrum disorders. This would not be newsworthy, except that their macaques’ mutation was also heritable: at least some future offspring inherited the mutation, making it possible to create a sustainable colony of primates with the same mutation. The monkeys they created exhibited typical behaviors of humans with autism: increased stress response, repetitive behaviour, and less social interaction than their wild-type peers. This was interpreted as evidence that the genetically modified monkeys would provide a valuable model to study autism. The authors concluded, “These results indicate the feasibility and reliability of using genetically engineered non-human primates to study brain disorders.” Among those on the list: autism spectrum disorders, Alzheimer’s disease, bipolar disorder, and schizophrenia.

The publication of these results was heralded by some as a great advance in neuroscience.  Leaders of the China Brain Initiative stated, “It is likely that, through more extensive use of macaque monkeys as an animal model, Chinese teams will obtain new insights into the neural mechanisms underlying higher cognitive functions and generate monkey models for brain disorders that could be used for developing new therapeutic treatment.” Walter Koroshetz, Director of the U.S. National Institute of Neurological Disorders and Stroke, has also called out the Chinese efforts to “develop nonhuman primate models of brain disease using the macaque, an old-world primate that may have more relevance for humans [than other animal models of brain disease].” The imperative to understand the brain and brain disorders, and discover new therapies so desperately needed by suffering patients, has been taken by some to justify, if not require, creating primate models of brain disorders.

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Revealing Recipient Details to Families of Potential Organ Donors

22 Sep, 17 | by miriamwood

Guest Post: David Shaw & Dale Gardiner
Paper: Increasing organ donation rates by revealing recipient details to families of potential donors

Families often don’t allow their deceased relatives to donate organs, even when the patient was a registered organ donor. Even when the donation process is explained sensitively by specialist nurses, families can focus much more on the potential stress caused by donation than on the potential benefits of donation. In our article we suggest that more emphasis should be placed on the potential benefits to recipients – and that this can be done by revealing information about recipients to families who are considering whether to allow donation to go ahead. This could help to overcome family’s ‘moral distance’ from the potential consequences of their actions.

In the UK, if a person is a registered organ donor, families have no right to ‘overule’ donation, and their agreement is not legally required. But while initial objections can sometimes be overcome, healthcare professionals will not persist with persuading families to agree where there is strong resistance. When a deceased patient was not a registered organ donor, it is up to the family to decide whether donation should go ahead. In both types of case, families are only told that donation could benefit patients in need of organs. We think that this is not enough. Families must be given enough information so they can understand the full consequences of their decision: that several patients might die if donation does not go ahead. To achieve this families should be told basic information about potential recipients.

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Does the Doctrine of Double Effect Apply to the Prescription of Barbiturates? Syme vs the Medical Board of Australia

22 Sep, 17 | by miriamwood

Guest Post: Xavier Symons
Paper: Does the doctrine of double effect apply to the prescription of barbiturates? Syme vs the Medical Board of Australia

My recently published article analyses the controversial Victorian Civil and Administrative Tribunal (VCAT) hearing Syme vs The Medical Board of Australia. In that hearing, Dr Rodney Syme, an Australian urologist and euthanasia advocate, was defending his practice of prescribing Nembutal to terminally ill patients. The Medical Board of Australia (MBA) had found that Syme’s behavior posed “a serious risk to persons” and placed a condition on Syme’s license that prevented him from engaging in medical care “that has the primary purpose of ending a person’s life”. Syme appealed the MBA decision, testifying to VCAT that he prescribed the drug with the intention of relieving their existential suffering and not to assist in suicide. Essentially, he argued that the Doctrine of Double Effect (DDE) could be applied to justify his actions.

The aim of my article is to debunk Syme’s claim. I argue that a close scrutiny of his actions reveals that, at the very least, he intended to give patients the option of suicide. Insofar as this is the case, DDE cannot be invoked as a justification.

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Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

15 Aug, 17 | by bearp

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media. This fact alone will make things rather complicated for the prosecution.

The defense team has already signaled that it will emphasize the “low-risk” aspect of the alleged cutting, claiming that it shouldn’t really count as mutilation. It is, after all, far less invasive than Jewish ritual male circumcision, which is legally allowed on minors in the US, no questions asked.

Based on this discrepancy, if attorneys for the Bohra can show a gendered or religious double standard in existing law, the ramifications will be not be small. Either male circumcision will have to be restricted in some way, or “minor” forms of FGM permitted. The outcome either way will be explosive.

I will dig into the male-female comparison—and explore its legal implications—later on. But the law will not actually be my main focus. Instead, what I’ll suggest in this piece is that the question of health consequences, whether positive or negative, should not exhaust the ethical analysis of these procedures.

There is more to “good” and “bad” than healthy versus unhealthy.

In fact, as the Bohra case will show, there are serious, even dangerous downsides to medicalizing moral reasoning – and to moralizing medical research. On both counts, I argue, at least when it comes to childhood genital cutting, apparently biased policies from the WHO are making things a great deal worse.

* * *

“The tendency today is to roll over and ‘scientify’ everything,” says Julian Savulescu, a philosopher at the University of Oxford. He goes on: “Evidence will tell us what to do, people believe.” But people are getting it wrong. When you reduce your ethical analysis to benefit-risk ratios, you miss important questions of value.

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Charlie Gard: An Ethical Analysis of a Legal Non-Problem

11 Aug, 17 | by Iain Brassington

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment.  The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.  The High Court ruled against this on the 27th July.  Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

The way this case has played out has not been pretty.  Elements of the American media (this piece, which I’ve mentioned before, is one among many) and the political right wing used it to launch attacks on single-payer healthcare systems:

Nigel Farage weighed in, complaining about the state taking away parental rights:

From the left, Giles Fraser wrote that the case was being dealt with too rationally.  None of these claims is justified, and many left-leaning people have been surprised to find themselves in agreement with Melanie Phillips on this matter.

Legally, the case was very straightforward. more…

The ‘Weird’ First Fortnight of the Foetus: Implications for the Abortion Debate

10 Aug, 17 | by miriamwood

Guest Post: William Simkulet
Paper: The Cursed Lamp: The Problem of Spontaneous Abortion

For many people, the moral status of abortion stands or falls whether or not a human fetus is morally comparable to you or I; whether its death is a significant loss.  Many people believe human fetuses have a right to life from conception, and thus conclude that there is good reason to think induced abortion is seriously morally wrong.  Judith Jarvis Thomson challenges this belief, constructing a scenario where she believes it is morally acceptable to end the life of a person because although he has a right to life, his right to life does not give him a right to use your body.  Her example should be familiar:

Violinist:  You wake up in the hospital, surgically attached to a violinist.  Your doctor explains that last night the Society of Music Lovers kidnapped the two of you and performed the surgery.  The violinist has a serious condition that will result in his death soon unless he remains attached to your kidneys for the next 9 months (you alone are biologically compatible).

The violinist has a right to life, and surely you are free to let him remain attached to your body to save his life.  It would be a great kindness for you to do so, but Thomson says that the violinist’s right to life does not give him the right to use your body.  Anti-abortion theories that focus on the moral status of the fetus neglect to show why the fetus’s moral status – its argued for right to life – would give it a right to use the woman’s body.

The violinist case is supposed to be a counterexample to the claim that a right to life gives one a right to your body.  However, it is easy to misread the case as an analogy for pregnancy.  John T. Wilcox, I think, does something like this, and raises a rather important criticism – the violinist example is weird, he contends, while pregnancy is “the opposite of weird.” The thrust of this argument is that we should not trust our intuitions about Violinist, but we should trust our intuitions about pregnancy; and many people have the intuition that human abortion is a serious moral loss because fetuses are persons from conception.

But pregnancy – especially early pregnancy – is weird.  Most of us are not intimately familiar with the nuances of fertilization and fetal development.  If we were, we would recognize that within the first two weeks of pregnancy, the fetus is under constant danger – danger, that parents and anti-abortion theorists alike seem to neglect.  Approximately half of all human fetuses are spontaneously aborted within the first two weeks of pregnancy. During these first two weeks of pregnancy, a fetus’s cells are totipotent, such that each one can separate to form a full human being – creating identical twins, resulting in the loss of one unique person and creating two different “replacement” fetuses.  Furthermore, two or more fetuses can chimera, ceasing to exist and creating a single, distinct organism.

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