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JME

Bridging the Education-action Gap: A Near-peer Case-based Undergraduate Ethics Teaching Programme

6 Feb, 17 | by miriamwood

Guest Post: Dr Selena Knight and Dr Wing May Kong

Paper: Bridging the education-action gap – a near-peer case-based undergraduate ethics teaching programme

Medical ethics and law is a compulsory part of the UK undergraduate medical school curriculum. By the time they qualify, new junior doctors will have been exposed to ethics teaching in lectures and seminars, through assessments, and during clinical placements. However, does this really prepare them for the ethical minefield they will encounter as doctors?

Following my own graduation from medical school I started as a foundation year doctor in a busy London teaching hospital. Despite having had more exposure to ethics and law teaching than most by having completed an intercalated BSc in the subject, I found as a new doctor that I was often encountering ethical dilemmas on the wards but felt surprisingly ill-equipped to deal with them. I was generally able to identify that I was facing an ethical dilemma, but frequently found myself stuck when coming up with a practical solution.

If I felt like this having had an additional year of studying ethics and law, how on earth were other new doctors coping? In fact, when questioning my peers about their experiences they described that they also encountered dilemmas, but either didn’t specifically identify them as ethical in nature (e.g. they described feeling uncomfortable or uneasy with a decision made or a particular situation but couldn’t pinpoint why) and frequently described being unable to do anything to improve the situation either because they didn’t know what to do or they didn’t feel confident to speak up/rock the boat e.g. if they experienced a consultant acting unprofessionally

It became clear that even if ethics teaching at medical school was providing sufficient knowledge to enable junior doctors to identify ethical dilemmas, it was failing to prepare them to actually deal with such issues in practice. My own experiences, together with those I heard from my peers, formed the inspiration for the teaching programme that was subsequently designed.

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The Importance of Disambiguating Questions about Consent and Refusal

2 Feb, 17 | by miriamwood

Guest Post: Rob Lawlor

Re: Cake or death? Ending confusions about asymmetries between consent and refusal

Imagine you have an adolescent patient who is in need of life saving treatment. You offer him the treatment, assuming that he would consent, but he refuses. As he is not yet a competent adult, you decide to treat him despite the fact that he wishes to refuse treatment.

Now consider the question: does it make sense to say that there is an asymmetry between consent and refusal?

If you are familiar with the term “asymmetry between consent and refusal”, the chances are that you will believe that you know what the question means and you are likely to have an opinion regarding the answer. And if you are like John Harris, you may also think that the answer is obvious and that any other answer would be “palpable nonsense”. However, if you are not familiar with the term or with the relevant literature, you may be far less confident that you even understand the question.

Despite their lack of familiarity with the question, I believe the latter group may have a better understanding of the issue than the first group. Why? Because these people are wondering, “What does this question mean?” My claim is that we would make more progress if more people took the time to ask this question. The phrase “the asymmetry between consent and refusal” allows us to capture the topic of a particular debate in a fairly succinct way, but I suggest that it obscures the ethical issues, rather than illuminating them.

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A Matter of Life and Death

10 Jan, 17 | by bearp

Guest Post by Professor Lynn Turner-Stokes

Re: A matter of life and death – controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness

In an article published in the JME, I highlight the confusion that exists amongst many clinicians, lawyers and members of the public about decisions with withdraw life-sustaining treatments from patients in permanent vegetative and minimally conscious states.

Recent improvements in acute care for patient who have suffered catastrophic brain injury undoubtedly save lives. However, some patients who would otherwise have died now survive but remain profoundly disabled. Many patients experience a brief period of unconsciousness (or ‘coma’) lasting a few days or weeks. However, an unfortunate few with very severe brain injury remain in a vegetative and minimally conscious state (VS/MCS) for many months – or in some cases permanently.

Unfortunately the lay press, and even much of the medical literature, tends to conflate VS/MCS with coma, but they are in fact very different. Coma is a state of ‘unrousable unresponsiveness’ from which the patient cannot be awakened. It rarely persists for more than a few days or weeks, as the large majority of patients will either die or start to regain consciousness. Patients in VS or MCS are awake, but have either very limited awareness of themselves and their environment (MCS), or none at all (VS). With supportive treatment, many will live in these states for a decade or more.

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Dissenting from care.data: an analysis of opt out forms

14 Nov, 16 | by miriamwood

Guest Post: Paraskevas Vezyridis

Article: Dissenting from Care.data: An Analysis of Opt-out Forms

In our article, which is part of a wider project examining the technical, social and ethical challenges of big data in primary care, we simply wanted to explore how varied opt out forms can be when there is no standardised form available. We took as our case study opt out forms from care.data; the highly controversial (scrapped in July 2016) programme of work by NHS England and the Health and Social Care Information Centre (HSCIC) to extract and link (in one central database) healthcare information from GP practices and other NHS and social care services for all sorts of administrative and research purposes. This was an important research question for us since wordings, available options and even design layouts could influence the decision of patients whether to allow the sharing of their GP record for the care.data programme.

While it relies on the individual’s inertia (and often lack of awareness) an opt out is usually considered a more practical and valid approach to consent when compared to an opt in, particularly for low risk, population level studies where highly representative samples are required. For care.data, two types of opt outs were possible: data would either not be extracted from GP records and/or shared outside of the HSCIC in any identifiable form. However, there was no standardised opt out form released, like with the Summary Care Records (SCR). GPs had to come up with their own forms to register patients’ dissent. We searched websites of GP practices to retrieve around 100 unique forms. We did not examine the information provided on GP practices’ websites. While there are around 8,000 GP practices in England, we believe that our sample was big enough to study any evident variability and make a point about the need to standardise these forms so that everyone, from GPs to patients, is on the same page.

What was striking for us was that, while the majority of these forms provided patients with the 2 types of objection, there were some forms that provided only one option (opt out from care.data altogether). There was also variability in other information provided: who was responsible for this programme (HSCIC and NHS England), what was it about and it was important for the NHS and researchers, where patients could have found more information, how data was to be protected, who could had access to this data and whether the programme had any support, for example, by a healthcare professional association.

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Randomised Placebo-Controlled Trials of Surgery: Ethical Analysis and Guidelines

25 Oct, 16 | by miriamwood

Guest Post by Karolina Wartolowska

Re: Randomised placebo-controlled trials of surgery: ethical analysis and guidelines [open access]

Surgical placebo-controlled randomised controlled trials are, in many ways, like placebo-controlled drug trials. Like in case of drug trials, sometimes, a placebo-controlled design is necessary so that the results are valid and unbiased. Placebo control is usually necessary when a surgical trial has only subjective outcomes. This is often the case, because many surgeries are done to relieve pain and improve function. Validating the efficacy of a surgery in a well-designed trial helps to improve clinical practice. If the procedure is ineffective it should be discontinued and less risky treatment should be used instead. It also demonstrates the need for new effective interventions. But if the surgery is effective the resources should be allocated to the better intervention. If efficacy of intervention is never tested, many patients may be exposed to risks associated with a surgery but do not get any real benefits.  They also do not get other treatment, which may provide similar benefits without the risks and costs associated with surgery.

Surgical placebo-controlled randomised controlled trials may be undertaken in an ethical way. Firstly, there needs to be “equipoise”. In other words, there should be uncertainty, lack of strong evidence and lack of agreement among the clinicians whether the investigated surgery is effective or whether it is better than conservative treatment.  If there is equipoise, there is no true “best treatment” which can be recommended to the patient. Secondly, there should be some preliminary evidence that the surgery works (form animal studies, open-label trials). There is no point undertaking a surgical trial if it fails to show any improvement in the surgical arm. Thirdly, the risks associated with a surgical trial should not be disregarded. To be justified, such trials should have high scientific and clinical value and a potential to change clinical practice. Moreover, the risks of harm in both trial arms should be as small as possible. This is particularly important in the placebo/sham arm. The placebo mimics the active surgery but it also omits the surgical element which is the key part of the active surgery. So some procedures necessary in the surgical arm, for example anticoagulants or antibiotics, may be avoided in the placebo arm or can be replaced with a saline injection.  Ideally, the placebo/sham procedure should benefit the patients, for example as a diagnostic procedure. And last but not least, it is important that there is an uncertainty about the treatment allocation but there is no actual deception. Patients should understand which procedures are or are not performed and what are the associated risks in each trial arm.

Surgery is inherently risky but it is important to know whether it is also effective and worth taking these risks.

The End is Not What it Seems – Feasibility of Conducting Prospective Research in Critically Ill, Dying Patients.

14 Oct, 16 | by miriamwood

Guest Post by Amanda Van Beinum

Re: Feasibility of conducting prospective observational research on critically ill, dying patients in the intensive care unit

Collecting information about how people die in the intensive care unit is important. Observations about what happens during the processes of withdrawal of life sustaining therapies (removal of breathing machines and drugs used to maintain blood pressure) can be used to improve the care of dying patients. This information can also be used to improve processes of organ donation. But when the Determination of Death Practices in Intensive Care Units (DDePICT) research group first proposed to start collecting prospective data on dying and recently dead patients, a common response from other clinical researchers was, “You’re going to do what?” The research community did not believe that prospective research using an informed consent model would be possible in patients dying after withdrawal of life sustaining therapies in the intensive care unit.

While the clinical research community supported the “big picture” idea behind conducting this research, they were skeptical about our prospective research design and our intent to obtain full informed consent from all families prior to the patient’s death. Some also felt that we would have a hard time obtaining institutional ethics board approval or would encounter barriers from research coordinators uncomfortable with approaching families for consent at a difficult and emotional time in the patient’s care. However, the DDePICt group was persistent, and succeeded in their efforts to design the first prospective, observational pilot study in Canada of patients dying in the intensive care unit after withdrawal of life sustaining therapies. As part of the study design, the DDePICt pilot study collected data for an ethics sub-study to investigate how these anticipated challenges were overcome. The ethics sub-study sought an answer to the question; can we conduct ethical, prospective, observational research on a critically ill and imminently dying population in the intensive care unit?

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A Eulogy for the UK Donation Ethics Committee

13 Oct, 16 | by miriamwood

Guest Post by David Shaw

Re: The untimely death of the UK Donation Ethics Committee

Most people I know want to donate their organs after they die. Why wouldn’t they? If you have to die, you might as well do your best to save several other lives once you’re gone. But organ donation is a more ethically complex topic than many people realise. From Spring 2014 until April this year I was a member of the UK Donation Ethics Committee (UKDEC), which advised NHS Blood and Transplant and the various UK health departments on the ethics of organ donation and transplantation. The committee included doctors, lawyers, nurses, ethicists like me, and ‘lay’ members – ordinary members of the public. In my JME article, I discuss the committee’s work and why it came to an end.

UKDEC dealt with a wide variety of topics. We advised the Welsh Government on the ethical implications of a switch to ‘deemed consent’ to organ donation in Wales, undertook an analysis of the role of the family in donation, and engaged with ethnic minorities and religious groups to facilitate discourse about donation. Most of all, our work was important because we provided practical ethical guidance to healthcare professionals who were often unsure about the ethics and sometimes the legality of new developments in organ donation. Every year new technologies emerge that can enable donation where it was previously impossible, or which can improve the viability of donated organs. Sometimes doctors would approach UKDEC for our advice on their protocols that wished to make use of these new innovations. One of UKDEC’s final publications was a discussion paper concerning so-called “elective ventilation”, where a patient is placed onto on life support not because it will physically benefit him or her, but in order to facilitate organ donation.

But perhaps the most important contribution UKDEC made concerned organ donation after circulatory death (DCD). Nowadays, over 40% of UK donations involve DCD. But until around a decade ago, almost all organ donation in the UK took place after neurological determination of death – in other words, you had to be “brain-dead” before your organs could be donated and transplanted into recipients. In contrast, DCD involves organ donation after a patient’s heart has stopped beating. This might sound relatively straightforward, but in fact many doctors and nurses objected to DCD because of concerns about the potential reversibility of death, the burden on families and perceived conflicts of interest. Indeed, with the use of new technologies, heart donation after circulatory death is even possible, which might seem paradoxical.

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Victims, Vectors and Villains? Are Those Who Opt Out of Vaccination Morally Responsible for the Deaths of Others?

11 Oct, 16 | by miriamwood

Guest Post by Euzebiusz Jamrozik, Toby Handfield, Michael J Selgelid

Re: Victims, vectors and villains: are those who opt out of vaccination morally responsible for the deaths of others?

Who is responsible for the harms caused by an outbreak for vaccine preventable disease?

Are those who opt out of vaccination and transmit disease responsible for the resultant harms to others?

Suppose that health care systems make vaccines widely available and easily affordable–but some choose not to be vaccinated, resulting in an outbreak. If the outbreak only affected those who could have been safely and effectively vaccinated, but nonetheless opted out, then we might say that those who become infected consented to the risks involved and are thus responsible for their own illness. What should we think, however, about scenarios where harm occurs to those who cannot be safely or effectively vaccinated – e.g. vulnerable groups such as infants and the immunosuppressed? These groups are often at the highest risk of severe harm, and depend upon herd immunity (resulting from high vaccination rates) to protect them from vaccine-preventable infections. Members of such groups bear the burden of others’ freedom to opt out of vaccination, and this can cost them their lives. In 2015, for example, an immunosuppressed woman died in the United States during a measles outbreak made possible by a lapse in local vaccination rates[1].

Our recent article in the Journal of Medical Ethics argues that imposing risks of infection on others without good justification is morally blameworthy–and that individuals who opt out of vaccination are thus morally responsible for resultant harms to others. In defence of this thesis we address numerous important questions, and our answers may have significant implications for public health policy.

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Amoral Enhancement

10 Oct, 16 | by miriamwood

Guest Post by Saskia Verkiel

Re: Amoral Enhancement

A reply to Douglas’ reply to Harris’ reply to Douglas regarding the issue of freedom in cases of biomedical moral enhancement

Wouldn’t it be awesome if we could just swallow a pill and become better people?

With many aspects of life, growing numbers of people are embracing biomedical interventions to improve physical or cognitive performance and endurance, whether indicated for those purposes or not. Think doping in sports. Think Ritalin in college. Think beta blockers in stage performers. Think modafinil in pilots and surgeons who have to be alert for long stretches of time.

The funny thing is that when it comes to moral enhancement, we tend to think more in terms of its application to others, who are ‘obviously’ not such good people. Swindlers. Rapists. Basically all kinds of performers of crime.

Thomas Douglas was the first to write an analysis specifying when certain kinds of biomedical moral enhancement would be permissible, in 2008, and he realised that it’s important to make this distinction of whom we want the enhancement for. He focused on voluntarily enhancing the self. It’s a jolly nice read.

This paper triggered a cascade of replies.

To be fair, seeing the replies fly back and forth in this debate is not unlike watching a ballgame, albeit more enlightening (or so I think). Compare with Monty Python’s Philosophers’ Football. There’s team “Let’s put it in the drinking water!” (roughly: Oxford) and there’s team “Hold it, hold it…” (captained by John Harris and including yours truly).

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Further Clarity on Co-operation and Morality

4 Oct, 16 | by miriamwood

Guest Post by David S. Oderberg, University of Reading

Re: Further clarity on co-operation and morality

The 2014 US Supreme Court decision in Burwell v. Hobby Lobby was a landmark case on freedom of religion and conscience in the USA. The so-called ‘contraceptive mandate’ of the Affordable Care Act (aka Obamacare) requires employers to provide health insurance cover for contraception used by their employees. The Green family (Evangelical Christian), owners of the Hobby Lobby chain of arts and crafts stores, challenged the mandate as they objected to providing cover for at least those methods of contraception that are abortifacient. They were joined by the Hahn family (Mennonite Christian), owners of a furniture company.

The case wound up at the Supreme Court, where the majority, led by Alito J, agreed with the plaintiffs. Under the Religious Freedom Restoration Act 1993, the plaintiffs were ‘substantially burdened’ in their exercise of religious freedom. They sincerely believed that by providing insurance cover that violated their religious and moral beliefs, they would be complicit in sinful behaviour. Violation of the RFRA, the court decided, meant the plaintiffs were entitled to an ‘accommodation’ or ‘opt-out’ of the contraceptive mandate.

The case is remarkable for a number of reasons. Conscientious objection is not new to the courts, particularly as regards service in war. Nor is Hobby Lobby unusual for recognising that a legal person such as a corporation can have its freedom of religion violated in virtue of what its owners/executives are required to do by law. After all, the contraceptive mandate already exempted churches and other purely religious bodies. In the present case, however, the plaintiff corporations were not religious in nature: it was their owners/executives who claimed a corporate exemption based on their personal religious and ethical beliefs. The judgment thus radically extends the potential scope for religious freedom litigation under RFRA, something that will occupy the courts for many years to come.

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