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Our Special Treatment of Patients in a Vegetative State is a Form of Cruel and Unusual Punishment

23 Sep, 16 | by miriamwood

by Professor Dominic Wilkinson, @Neonatalethics
Professor of Medical Ethics, Consultant Neonatologist

Our society has good reason to provide special treatment to people with severe brain injuries and their families.

But our current “special treatment” for a group of the most severely affected people with brain injuries leads to devastating, agonising, protracted and totally preventable suffering.

Consider the following cases:

Case 1. Sally has severe progressive dementia. She is no longer able to communicate, and does not recognize any of her family members. Sally had previously spoken with her family and told them that if she were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Sally’s doctor has been called to her nursing home because she has pneumonia. Although the infection could be treated with antibiotics, the doctor and family together decide not to. Sally dies a few days later.

Case 2. Sandra has suffered a severe head and spinal injury in a car accident. She has been in intensive care for several weeks, but there is no sign of improvement. Her brain scans show extensive damage, and it is likely that if she survives Sandra would be severely disabled. Sandra had previously spoken with her family and told them that if he were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Although Sandra could be kept alive for some time if treatment continues, the doctors and the family together decide to stop life support. Sandra dies a few minutes later.

Case 3. Susie suffered a severe brain injury months ago. She was left in a vegetative state. She has no response to those around her. Susie had previously spoken with her family and told them that if she were ever in such a state and not likely to improve, that she would not want to be kept alive artificially. Susie’s family wish to stop the artificial feeding that is keeping her alive, but her doctor explains that a decision would need to be made by the courts. There are long delays before and during the court application procedures. Four years after her brain injury, the court authorizes withdrawal of artificial feeding. Susie dies some days later.

These cases are fictional, though the last one (Susie) is based on a real case (Miss S), which went to the Court of Protection in England and Wales earlier this year. In the real case, a set of avoidable factors meant that decisions were delayed for more than three and a half years. An important paper, released today in the Journal of Medical Ethics, analyses the cause and consequences of the delays. The paper describes in vivid detail the distress and desperation of Miss S’s family.


Should Junior Doctors Still Strike?

20 Sep, 16 | by bearp

Guest Post by Adam James Roberts

In early July, the British Medical Association’s junior members voted by a 16-point margin to reject a new employment contract negotiated between the BMA’s leadership and the Government. The chair of the BMA’s junior doctors committee, Johann Malawana, stood down following the result, noting the “considerable anger and mistrust” doctors felt towards the Government and their concerns about what the contract would mean “for their working lives, their patients and the future delivery of care” in the National Health Service (the NHS).

The BMA pressed the Government to reopen negotiations and to reverse its decision to impose the contract unilaterally. Those appeals having been rebuffed, the BMA announced two months later a new programme of strikes, citing concerns about the impacts on part-time workers, “a majority of whom are women”; on those doctors who already work the greatest number of weekends, “typically in specialties where there is already a shortage” of staff; the contract’s implications for the ability of the NHS to “attract and keep enough doctors” into the future; and the lack of an answer as to how the Government would manage to staff and fund the extra weekend care which was so often drawn on to justify pushing that new contract through.

Earlier this year, Mark Toynbee and colleagues argued in the JME that the earlier rounds of strikes by British juniors were probably ethically permissible, noting that emergency care would continue to be available, that the maintenance of patient well-being was apparently a goal, and that the strikers felt they were treating industrial action as a last resort. In a later paper, I attempted to outline and apply an ethical framework drawing on Thomist ‘just war’ theories, reaching the same conclusion about the strikes as Toynbee did.

In this guest post, I attempt to update or supplement that literature, considering some of the more recent and popular arguments against the current rounds of strikes and whether any of them might be morally compelling. In particular, I look at the fact that the BMA’s junior leadership had described the rejected offer as “a good deal”; the argument that strikes are a disproportionate response to the remaining issues; the concerns voiced about the strikes by Britain’s General Medical Council; and the allegation that striking doctors are “playing politics”.


Is it Ethical to Pay Adolescents to Take HIV Treatment?

20 Sep, 16 | by miriamwood

Guest Post by Rebecca Hope, Nir Eyal, Justin Healy & Jacqueline Bhabha

Re: Paying for Antiretroviral Adherence: Is it Unethical When the Patient is an Adolescent?

With treatment, a child with HIV in sub-Saharan Africa can expect to live a healthy life. Better access to HIV treatment is contributing to a global decline in HIV deaths and new infections. Yet in adolescents, the mortality rate is rising – it increased by 30% between 2005-2012 – and HIV is now the leading cause of death among African adolescents. Globally, one in three adolescents with HIV do not take adequate therapy to suppress the HIV virus.

When antiretroviral treatment is life-saving and free, why is adherence so hard for infected adolescents? YLabs, a non-profit that designs and tests solutions to improve the health of disadvantaged youth, began working with adolescents living with HIV in Rwanda and South Africa to understand what prevents them from taking their treatment. Some of our team were involved in that work. Adolescents with HIV are navigating important transitions in their relationships, sexuality, and socio-economic roles, whilst living with a highly stigmatised condition. Lack of social support, isolation, and low mood made it hard for teens to motivate themselves to take medicines regularly. Poverty also stood in the way of regular clinic attendance. Many interviewees were more concerned about their finances than their health: one sixteen year old Rwandan girl living with HIV said: “When I’m in class thinking about how to pay school fees, I think about stopping taking my medicine and starting to try to find money.”

In addition, adolescence is often a time of risk-taking and short-term thinking, contributing to unhealthy habits. Neurodevelopmental research suggests that areas of the brain stimulated by rewards reach peak activation in adolescence, and adolescents prefer immediate, small rewards over larger gains that come later. At the same time, the development of ‘self-control’ regions, which help us make wise, considered decisions, lags far behind–a perfect neurodevelopmental storm. For many adolescents, skipping tablet-taking today, when they feel well, might be favoured over staying healthy in five years’ time. We asked, could adolescents’ increased susceptibility to rewards make short-term financial rewards a useful tool to improve long-term healthy adherence habits?

Copyright: YLabs. Photographer: Majdi Osman.

The YBank membership card for adolescents participating in a pilot study of financial incentives

With Rwandan adolescents, YLabs designed YBank, a new approach to improve antiretroviral treatment adherence, currently being piloted in Rwanda with the Rwanda Biomedical Centre. The YBank program combines short and long-term financial incentives with peer support, access to banking and financial literacy training. But is it ethical to pay adolescents to take their medications?
Researchers from YLabs and from the Harvard TH Chan School of Public Health’s Department of Global Health and Population investigated whether it is ethical to incentivize teens to take antiretroviral therapy. Payment for antiretroviral and other medication adherence is an accepted practice for adults. Our JME paper examines three ethical concerns about incentivizing adolescents with HIV to take antiretrovirals that might be more serious for adolescents than for adults.


Letter from Iraq: Ethical Dilemmas in an Iraqi Burn Centre

17 Sep, 16 | by BMJ

Guest Post by Mustafa AL-Shamsi

Health requires a multidisciplinary approach.  In the absence of proper support, facilities and literate people, there is little that a physician can do to cure his patient regardless his proficiency.  The following is not a story; it comes from what I experienced when I was an intern at the burn unit.  I faced a lot of ethical rather than medical challenges.  Some I could cope with; others were not so easy.

I was an intern in Basra city, according to the internship curriculum.  My internship in the burn unit changed my outlook and made me aware of how fragile the health care system is in Iraq.  Being a doctor in the Iraqi health care system is tough; there are many challenges to stand against, but you have little to do because of a limited resources, poor training and supervision.  The most disturbing thing is you have little to do for your patient!  (Others have noted similar problems.)

I learned a lot of good-sounding terms like mercy and empathy during medical school, but is any of them is applicable in the burn unit?  There was too much sorrow and pain to deal with.  Human lives were placed on the shelf without care from authorities.  On my first few days I was upset by every burn patient; however, this made me feel sick and frustrated, and I began to project my emotion on my family, friends and patients.  I realised that I would not able to manage patients properly if I continued dealing with this situation from this position, so I developed a new strategy: apathy.

In the past, I always considered apathy to be a malaise; but in the burn unit it became my salvation. more…

Sharing Motherhood and Patriarchal Prejudices

10 Sep, 16 | by miriamwood

Guest Post by Ezio Di Nucci, University of Copenhagen

Re: IVF, Same Sex Couples and the Value of Biological Ties 

Reproductive technologies are increasingly enabling access to parenthood to people who previously could not procreate: these developments are changing concepts and practices within family relationships in interesting ways. Take the following example: in a particular form of IVF treatment, known by the acronym ROPA (Reception of Oocytes from Partner), lesbian couples can share motherhood with one partner providing the eggs while the other becomes pregnant.

IVF-with-ROPA is, on the face of it, good news: two people can share the delight of parenthood and create a new family. More precisely, a couple that would have been previously relying on egg donation or surrogacy can do everything by themselves (obviously apart from the sperm donor), thereby being, in an important sense, empowered through technology.

Additionally, IVF-with-ROPA allows such couples to redistribute parenthood in ways that may turn out to be important both for the health of the relationship and from the point of view of justice, as both women can, through IVF-with-ROPA, claim to be biological mothers (the one through gestation, the other through genetics). IVF-with-ROPA, then, on top of fulfilling a very human wish, has the potential to empower women in at least two important ways: by granting (a more) independent access to motherhood and by promising a more equal relationship.



26 Aug, 16 | by Iain Brassington

Jumping to the defence of pharmaceutical companies over their pricing policies isn’t fashionable – and a lot of the time, it’s not going to end prettily.  But it’s perfectly coherent to think that the profit motive is one of the motors of innovation, and that it’s part of the quid pro quo for spending money on drugs that may do nothing; in fine, that the profit motive may actually be a necessary part of getting the good stuff we want.  To an economist, the phrase “normal profit” means the minimum profit necessary to keep a firm going – where average revenue equals average total cost.  But if that was all that was on offer, there’d be no incentive to enter a market in the first place: if you’re (on average) in the same place as you were before entering the market, why bother?  So it’s reasonable to think that there ought to be some level of supernormal profits.  They help ensure we get a world that’s better tomorrow than it was yesterday.

On this account, the problem is not with making a supernormal profit – oh, all right then: what in everyday English we’d simply call a profit – but with gouging and/ or profiteering.  The question that needs to be addressed is one of what level of profit, and what kind of return on investment, is reasonable.  In some sectors of the economy, it may be quite high.  For example, if I can manufacture a luxury good for which people are willing to pay through the nose, and make a stonking great profit from it… well, all hail me.  In other sectors, this will not be the case.

The determinants of the level of acceptability will depend on all kinds of factor.  It’s a complicated question, and it may defy satisfactory answers from time to time.  All the same: one doesn’t have to be able to say that or why x is good in order to be able to say that y stinks.  The story about EpiPen pricing that’s emerged over the last week or so is one such case.

Here’s the story: EpiPens deliver a dose of adrenaline, and are therefore very useful in cases of allergic reaction.  Adrenaline is not expensive, but delivering it via a syringe is cumbersome; EpiPens make it much simpler.  Mylan Pharmaceuticals obtained the rights to the device in 2007; since then, the price has risen by somewhere between 400 and 500% in the US (different sources offer different amounts; but a pack of two EpiPens costs about $415 in the US, and about $85 in France).  That’s bad enough on the face of it, though Mylan CEO Heather Bresch does apparently have a defence, as Fortune explains: more…

Making Humans Morally Better Won’t Fix the Problems of Climate Change

25 Aug, 16 | by miriamwood

Guest Post by Bob Simpson, Monash University

Re: Climate Change, Cooperation and Moral Bioenhancement

The Intergovernmental Panel on Climate Change has repeatedly said that greenhouse gas emissions increase the likelihood of severe and irreversible harm for people and ecosystems. And in his State of the Union address in 2015, Barack Obama emphasised these problems, saying that climate change poses the greatest threat to humanity’s future. We’ve come to expect pronouncements like these. Political leaders and transnational policy institutions both have an important role to play in implementing the measures needed to address threats from climate change – measures like international economic agreements, energy sector reform, and technological research.

By contrast, we wouldn’t expect advocates of biotechnological human enhancement to be proposing solutions to climate change. What does human enhancement have to do with oceanic warming or greenhouse gas emissions? According to people like Ingmar Persson and Julian Savulescu, who advocate “moral bio-enhancement”, these things are in fact related. They say that we should be finding ways to use biotechnological interventions to make people more trusting and altruistic towards strangers, and hence more willing to make personal sacrifices – like, say, dramatically reducing their carbon footprint – in order to cooperate in global policies aimed at mitigating the impact of climate change.


What is a Moral Epigenetic Responsibility?

23 Aug, 16 | by miriamwood

Guest Post by Charles Dupras & Vardit Ravitsky

Re: The Ambiguous Nature of Epigenetic Responsibility

Epigenetics is a recent yet promising field of scientific research. It explores the influence of the biochemical environment (food, toxic pollutants) and the social environment (stress, child abuse, socio-economic status) on the expression of genes, i.e. on whether and how they will switch ‘on’ or ‘off’. Epigenetic modifications can have a significant impact on health and disease later in life. Most surprisingly, it was suggested that some epigenetic variants (or ‘epi-mutations’) acquired during one’s life could be transmitted to offspring, thus having long-term effects on the health of future generations.

Epigenetics is increasingly capturing the attention of social scientists and ethicists, because it brings attention to the importance of environmental exposure for the developing foetus and child as a risk factor for common diseases such as cardiovascular, diabetes, obesity, allergies and cancers. Scholars such as Hannah Landecker, Mark Rothstein and Maurizio Meloni have argued that epigenetics may be used to promote various arguments in ongoing debates on environmental and social justice, as well as intergenerational equity. Some even suggested that epigenetics could lead to novel ways of thinking about moral responsibilities for health.

Is it fair that disadvantaged populations are exposed to an inequitable share of harmful environments – such as polluted areas – that are epigenetically-detrimental to their health? Who should be held responsible for protecting children and future generations from epigenetic harm induced by their environments? Should we hold the parents accountable for detrimental epigenetic impact of their behavior on their children? And how should we manage the possible risks of stigmatization and discrimination of people that we consider blameworthy of inflicting epigenetic harm on others? These sensitive questions call for a nuanced investigation of the impact epigenetics can have on our understanding of moral responsibility.


Are Doctors Who Know the Law More Likely to Follow it?

17 Aug, 16 | by miriamwood

Guest Post by Ben White and Lindy Willmott, Australian Centre for Health Law Research

This was the question we considered in a recent JME article about the role of law in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. The short answer is ‘yes’. The longer answer is also ‘yes’ – although our results suggest that doctors may be acting in a way that complies with the law but not doing so because of the law.

Our article, which is part of a wider project, reports on survey results from 649 doctors from New South Wales and Victoria (Australia’s two most populous States). The doctors surveyed were from the seven specialties most likely to be making end-of-life decisions: emergency, geriatric, palliative, renal and respiratory medicine, medical oncology, and intensive care. We asked these doctors questions to determine their legal knowledge and we also asked them to respond to a scenario where following the law (by respecting an advance directive) conflicted with a more clinically oriented approach.

Compliance with the law was low with only 32% of doctors following the advance directive. Of interest was that doctors who knew the relevant law were more likely to comply with it and follow the advance directive than those doctors who did not know the law. Initially we thought that this could indicate that legal knowledge might lead to legal compliance. However, we then examined the reasons doctors gave for decision-making and also the factors they relied on to understand whether law was seen as important or not by doctors in their deliberations.


An Accidental Expert

9 Aug, 16 | by miriamwood

Guest Post by Derick Wade

Re: Back to the Beside: Making Clinical Decisions in Patients with Prolongued Unconsciousness

In 1994, not long after the Bland judgement, I was telephoned one day by the office of the Official Solicitor. “Was I familiar with the vegetative state, and if so would I be prepared to see two people for them?”  I could reasonably honestly answer that I was familiar with it – one sees people left unconscious long after brain injury in my line of work.  I did not claim expertise, and nor was I asked.  I said “yes, to both questions.” and was sent relevant guidelines, and instructions.  With practice I improved, and I wrote my first article on the matter with one of the Official Solicitors, published in the BMJ.  I also saw one case who was definitely not vegetative (and two very well know experts had said that she was); the case has been written up with a ten year follow-up (not by me).

In about 2000, having seen about fifteen or more cases for the Official Solicitor and various NHS hospitals, the next chance event occurred.  Talking one evening with my family about my work, my elder daughter asked me what I thought about the ethics of withdrawing food and fluid.  I replied something like “Well, I have never really thought about it.” which horrified her, and surprised me (though research suggests that actually I am quite normal in that regard, as doctors usually consider matters clinically, not ethically).  Anyway, I decided to research the issue and wrote another article, which was also published in the BMJ.  Interestingly despite making several provocative statements, I only received one letter about it.


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