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clinical ethics

Assisted Dying’s Conscience Claws

11 Sep, 15 | by Iain Brassington

Aaaaaaaand so the latest attempt to get assisted dying of some sort onto the statute books in the UK has bitten the dust.  I can’t say I’m surprised.  Watching the debate in the Commons – I didn’t watch it all, but I did watch a fair chunk of it – it was striking just how familiar the arguments produced by both sides were.  It’s hard to shake the feeling that, just as is the case with the journals, the public debate on assisted dying has become a war of attrition: noone has much new to say, and in the absence of that, it’s simply a matter of building up the numbers (or grinding down the opposition).  The Nos didn’t win today’s Parliamentary debate because of any dazzling insight; the Ayes didn’t lose it because their speakers were measurably less impressive than their opponents’.  If the law does change in the UK, I’d wager that it’ll be because of demographic brute force rather than intellectual fireworks.

(Every now and again I hear a rumour of someone having come up with a new approach to assisted dying debates… but every now and again I hear all kinds of rumours.  I live in hope/ fear: delete as applicable.)

Still, I think it’s worth spending a little time on one of the objections that’s been raised over the last couple of days to this Bill in particular; it’s an objection that was raised by Canon Peter Holliday, the Chief Executive of a hospice in Lichfield:

In an interview with the Church of England, Canon Holliday said: “If there is no possibility within the final legislation for hospices to opt out of being a part of what is effectively assisted suicide, then there is nervousness about where our funding might be found in the future. Would the public continue to support us and indeed would the NHS continue to give us grants under contract?”

Canon Holliday said the Assisted Dying Bill also contains no opt out for organisations opposed to assisted suicide in spite of high levels of opposition to a change in the law amongst palliative care doctors. Where hospices did permit assisted suicide the potential frictions amongst staff could be ‘enormous’ with possible difficulties in recruiting doctors willing to participate, he said.

“The National Health Service requires us, in our contracts, to comply with the requirements of the NHS. Now if the NHS is going to be required to offer assisted dying there is of course the possibility that it would require us or an organisation contracting with the NHS also to offer assisted dying. If we as an organisation were able, and at the moment under the terms of the bill there is no indication we would be able, but if we were able to say that assisted dying was not something that would happen on our premises, would that prejudice our funding from the NHS ?”

Is this worry well-founded? more…

Jeremy Hunt and Costs to the Taxpayer

2 Jul, 15 | by Iain Brassington

“Personal responsibility” is a strange phrase: while not as slippery as some, it can mean any number of things, and be put to use in any number of political contexts.  It was the title of the speech that the Health Secretary, Jeremy Hunt, gave yesterday.  In that, he spoke of three aspects to the concept.

First up, he talked about the need for personal responsibility for health – that while the NHS tops the leagues in a lot of respects, the UK as a whole is bad when it comes to “lifestyle illnesses”, particularly things derived from obesity and smoking.  I guess that telling us that that’s bad and we could look after ourselves better is something of a bromide; but slightly more jarring was the statement that

[t]hankfully people are starting to take more responsibility. Doctors report dramatic increases in the number of expert patients who Google their conditions and this can be challenging for doctors not used to being second-guessed. But it is to be warmly welcomed: the best person to manage a long-term condition is the person who has that long term condition. The best person to prevent a long term condition developing is not the doctor – it’s you.

This is worth noting for a few reasons: first, it’ll be interesting in the context of what I’m going to say in a couple of paragraphs’ time; but there’s a couple of other things worth noting.  While the final sentence may be fairly unobjectionable at first glance, the penultimate and antepenultimate ones seem much less obvious.  Management of long-term conditions may be best left to the patient in some cases; but in all?  That’s not nearly so obvious.  It’s particularly unlikely when Dr Google is the purported source of information.  Dr Google, after all, may send you to NHS Choices – but it may also send you to What Doctors Don’t Tell You*, or sites that are even more obviously written by and for what we may politely call aluminium milliners.  Sometimes, patients doing a bit of homework is a good thing.  But sometimes, they’ll just end up asking for colloidal silver therapy.  (What could possibly go wrong?)

I’ll come to the second theme in a moment; the third thing he talked about was taking responsibility for our families. more…

What should Investigators be Doing with Unexpected Findings in Brain Imaging Research?

22 Jun, 15 | by BMJ

Guest Post by Caitlin Cole

Incidental findings in brain imaging research are common. Investigators can discover these unexpected findings of potential medical significance in up to 70% of their research scans. However, there are no standards to guide investigators as to whether they should actively search for these findings or which, if any, they should return to research participants.

This complex ethical issue impacts many groups in brain imaging: participants and parents of child participants who may desire relevant health information, but alternatively may suffer from anxiety and financial burden; investigators who must ethically grant their participants autonomy, but who also may suffer from budget and personnel restrictions to manage the review and report of these findings; Institutional Review Board (IRB) members who must provide ethical oversight to imaging research and help mandate institutional standards; and health providers who must interface with their patients and assist with follow up care when necessary.

Our research study shows these groups share some ideas on the ethics of returning incidental findings – the researcher has an ethical responsibility or obligation to tell a subject that there’s something there, however they do it, but just inform the subject, even though it’s not part of the research” – yet also acknowledge the inherent risk in reporting medical research information. As one of our IRB members commented, I mean [in regards to withholding findings] one reason would be to protect the patient from doing something stupid about them.

When participants are asked about incidental findings, they consistently state that they want to receive all information pertinent to their health. Research participants want to make their own medical decisions and feel investigators have a responsibility to keep them informed.

However, it is clear from our research that participants do not always understand the difference between a brain scan for research purposes and a clinical scan. The incidental finding reports that they receive include personal health information, written in medical jargon, discovered during a clinical procedure that may have immediate or long term medical significance. Because of this crossover between conducting research and sharing health information, participants may overestimate the clinical utility of the reported research information. This is a challenge for investigators whose role is to conduct research, not to diagnose participants or offer findings with clinical certainty. Participant assumptions otherwise have the potential to cause downstream legal complications for the research institution.

It is necessary to understand the impact on all parties involved in the process of disclosing incidental findings to determine appropriate management policy. This challenging task should not be underestimated as these groups think differently about the balance between risk and benefit based on their role in this process, whether they be a research participant, a research investigator, an IRB member or a health provider. Overall there is an ethical demand to manage and report unexpected findings discovered in brain imaging research; finding a way to do this while minimizing negative impact for all involved is important.

Read the full paper here.

Re-Engineering Shared Decision-Making

22 May, 15 | by Iain Brassington

Guest post by Muriel R. Gillick

When physician-law-professor, Jay Katz, published The Silent World of Doctor and Patient in 1984, shortly after I completed my medical residency, I felt he was speaking directly to me.  He was telling me what kind of physician to be – not the old-school, paternalistic physician who told patients what treatment was best, but rather a physician who participated in shared decision-making.  For the next few decades, I aspired to cultivate patient autonomy by engaging my patients in deciding, with my input, how to approach their medical care.

There were substantial obstacles.  There were cognitive barriers to shared decision-making, as Twerksy and Kahneman brilliantly revealed: whether you spoke of a 60% success rate or a 40% failure rate seemed to matter, even though they were mathematically equivalent, as did the patient or doctor’s most recent experiences.  Then there was the problem of innumeracy, of patients lacking the tools needed to understand probabilities.  There was the challenge of limited health literacy, or inadequate knowledge of the vocabulary and concepts of health and disease.  And there were cultural biases, because patients of various ethnic backgrounds had a world view radically different from the physician’s biomedical model.  But each of those barriers could be surmounted with careful choice of words, better graphs, or cultural sensitivity.  I continued to strive to be a physician who practiced shared decision-making.

But more and more often, I found that patients wanted me to make a treatment recommendation.  It wasn’t that they didn’t want to be involved in the decision-making, or that they couldn’t understand medical jargon, or that they didn’t know what odds ratios were – although sometimes those were issues. The main issue was that the purpose of the prevailing model of shared decision-making was to figure out, when multiple treatment options existed, which one to choose.  It seemed to me that this focus on what was essentially a technical outcome was misplaced. more…

Is Age a Determinant Variable in Forgoing Treatment Decisions at the End of Life?

14 May, 15 | by BMJ

Guest post by Sandra Martins Pereira, Roeline Pasman and Bregje Onwuteaka-Philipsen

Decisions to forgo treatment are embedded in clinical, socio-cultural, philosophical, religious, legal and ethical contexts and beliefs, and they cannot be considered as representing good or poor quality care. Particularly for older people, it is sometimes argued that treatment is aggressive, and that there may be a tendency to continue or start treatments in situations where a shift to a focus on quality of life in light of a limited life expectancy might be preferred. Others argue that an attitude of ageism might prevent older people from receiving treatments and care from which they could benefit, thus resulting in some type of harm and compromising the ethical principles of beneficence and non-maleficence.

When the need to make a decision about treatment concerns an older person at the end of life, physicians need to reflect on the following questions: In this situation, for this person, what is the best course of action? Is this person capable of assessing the situation and making a decision about it adequately herself? What are the preferences of the person? Who needs to be involved in the decision-making process? What will be the consequences of starting or withholding this treatment?

Our study shows that decisions to forgo treatment preceded death in a substantial proportion of older people in the Netherlands, and more often than in younger groups. Also, it shows that compared to the younger age groups, in the older age group differences were more significant when deciding on withholding than on withdrawing a treatment. This is interesting because it suggests that Dutch physicians, especially those caring for older people, assume a palliative culture and approach, thus meeting the relatively more frequent preference older people have of receiving comfort care and not aggressive treatments aiming to prolong life. Moreover, it seems that decisions to forgo treatments among the ‘oldest old’ (i.e., older people aged 80 and above), when compared to the youngest age group, were made more frequently due to a wish of the patient, indicating consideration and respect for the patient’s wishes.

However, with regard to patient participation in decision making, we also saw that most of the patients, regardless of their age, did not discuss the forgoing treatment decision with the attending physician. As our findings indicate, this occurred mostly because the patient was not able to assess the situation and make a decision about it in an adequate manner. This result highlights the need to further implement strategies aiming at implementing advance care planning in practice and in an earlier stage of the disease trajectory.

Finally, based on our study, we cannot assume that any age-related differences in forgoing treatment decisions occur due to an attitude of ageism. On the contrary, our study suggests that care for older people in the Netherlands seems to be focused on providing palliative care, also suggesting a better acceptance that these patients are nearing death. This is particularly relevant for the discussion about the meaning of dying well in older ages, having an impact on older people’s experiences and end-of-life care.

Read the full paper here.

The Talking Cure Taboo

20 Apr, 15 | by Iain Brassington

Guest post by C Blease

Talking cures have never been so accessible.  Since 2007 the UK government has invested £300 million launching its Improved Access to Psychological Treatments scheme.  The goal is to train up to 4000 therapists in a particular branch of psychotherapy – cognitive behavioural therapy (CBT).  CBT is the most widely researched and most commonly used “talking therapy” in the world.  It is also on the rise: globally, a quarter of all practicing therapists use it.

The UK government’s decision to invest in CBT seems praiseworthy: as Bob Hoskins used to counsel in the old BT adverts, “It’s good to talk”.  It is certainly a sentiment shared by the British Association for Counselling and Psychotherapy (BACP) – which adopts the familiar tag line for its URL (

On the face of it, this seems like good advice.  Even a cursory look at the evidence base is encouraging.  Meta-analyses show that around 80 per cent of people who undergo psychotherapy for the treatment of depression are better off than those who receive no treatments.  They are also significantly less likely to relapse than those treated with antidepressants; some evidence even indicates that psychotherapy acts as a prophylactic, preventing future lapses into depression.  Given that the WHO estimates that depression will be the leading cause of disability in the world by 2020, the health benefits of psychotherapy carry enormous promise.  The potential relative healthcare costs of successfully treating (and preventing) depression with psychotherapy are significant too: in the UK depression incurs annual costs in lost earnings of £11 billion annually, and prescription rates for antidepressants are now at an all-time high.

Yet talking about talking cures is still taboo. more…

The Death of Sidaway: Values, Judgments and Informed Consent

15 Mar, 15 | by BMJ

Guest post by Kirsty Keywood (University of Manchester)

On 11th March Nadine Montgomery won her case before the UK Supreme Court to gain compensation for the failure of her obstetrician to warn her of risks associated with the vaginal delivery of a large infant – a risk which she would have averted by requesting a caesarean section.[1] Shortly after his birth, her son was diagnosed with cerebral palsy and a brachial plexus injury, resulting from the occlusion of the placenta during a “very stressful” vaginal delivery.

Nadine Montgomery had diabetes, which increased her chances of giving birth to a larger than average-sized baby. This, in conjunction with her small stature (she was 5 feet tall), indicated a risk that a natural delivery would bring with it a 9-10% chance of shoulder dystocia. Were dystocia to occur, attempts to dislodge the infant’s shoulders through mechanical manoeuvres would generate a risk of occlusion of the umbilical cord resulting in death or cerebral palsy of 0.1%. According to the obstetrician, Dr McLellan, the risk of shoulder dystocia did not merit specific mention in discussions with diabetic patients, because the risk of an adverse event associated with shoulder dystocia was very small indeed.

Mrs Montgomery’s case before the UK Supreme Court hinged on the question of the nature of the obstetrician’s duty to the patient. more…

Does Religion Deserve a Place in Secular Medicine?

26 Feb, 15 | by bearp

By Brian D. Earp

The latest issue of the Journal of Medical Ethics is out, and in it, Professor Nigel Biggar—an Oxford theologian—argues that “religion” should have a place in secular medicine (click here for a link to the article).

Some people will feel a shiver go down their spines—and not only the non-religious. After all, different religions require different things, and sometimes they come to opposite conclusions. So whose religion, exactly, does Professor Biggar have in mind, and what kind of “place” is he trying to make a case for?


Physicians and Euthanasia: What about Psychiatric Illness, Dementia and Weltschmerz?

18 Feb, 15 | by BMJ

Guest Post by Eva Bolt

In the Netherlands, requests for euthanasia are not uncommon. A physician who grants a request for euthanasia in the Netherlands is not prosecuted if the criteria for due care (described in the Euthanasia Act) are met. An example of one of these criteria is the presence of unbearable suffering without prospect of improvement. Almost all physicians in the Netherlands can conceive of situations in which they would perform euthanasia. However, each request for euthanasia calls for careful deliberation. When confronted with a request, a physician needs to judge the situation from two perspectives. The first is the legal perspective; would this case meet the criteria for due care? To judge this, a physician can fall back on the description of the Euthanasia Act and receives help from a consulting physician. The second perspective is personal; how does the physician feel about performing euthanasia in this situation? Is it in line with his personal values?

Our study shows that cause of the patient’s suffering is one of the aspects that influence the physician’s decision on euthanasia. This is interesting, because the Dutch euthanasia act does not make a distinction between different diseases. In case of suffering with a clear physical cause like cancer, most physicians can conceive of performing euthanasia. However, there are also people who request for euthanasia without suffering from a severe physical cause. In these cases, there are not many physicians who would consider complying with this request. As a consequence, people suffering from a psychiatric disease and early stage dementia with a euthanasia wish will rarely find a physician who would grant their euthanasia request. The same is true for people who are tired of living but who do not suffer from a severe physical disease. Also, most physicians will not consider following advanced euthanasia directives asking for euthanasia in case of advanced dementia.

Concluding, while most Dutch physicians can conceive of granting requests for euthanasia from patients suffering from cancer or other severe physical diseases, this is not the case in patients suffering from psychiatric disease, dementia or being tired of living. This distinction is partly related to the criteria for due care. For instance, some physicians describe that it is impossible to determine the presence of unbearable suffering in a patient with advanced dementia. Other explanations for the distinction are not related to the criteria for due care. For instance, it is understandable that physicians do not agree with performing euthanasia in a patient with advanced dementia who does not fully understand what is happening, even if the patient has a clear advanced euthanasia directive.

Each physician needs to form his or her own standpoint on euthanasia, based on legal boundaries and personal values. We would advise people with a future wish for euthanasia to discuss this wish with their physician in time, and we would advise physicians to be clear about their standpoint on the matter. This can help to prevent disagreement and disappointment.

Read the full paper here.


Growing a Kidney Inside a Pig Using your own DNA: The Ethics of ‘Chimera Organs’

6 Nov, 14 | by Iain Brassington

Guest post by David Shaw

Imagine that you’re in dire need of a new kidney. You’re near the top of the waiting list, but time is running out and you might not be lucky enough to receive a new organ from a deceased or living donor. But another option is now available: scientists could take some of your skin cells, and from them derive stem cells that can then be added to a pig embryo. Once that embryo is implanted and carried to term, the resulting pig will have a kidney that is a perfect genetic match to you, and the organ can be transplanted into your body within a few months without fear of immune rejection. Would you prefer to take the risk of waiting for an organ donated by a human, which would require you to take immunosuppressant drugs for the rest of your life? Or would you rather receive a “chimera organ”?

This scenario might seem far-fetched, but it is quite likely to be a clinical reality within a decade or so. Scientists have already used the same technique to grow rat organs inside mice, and it has also been shown to work in different types of pig. Although clinical trials in humans have not yet taken place, using these techniques to create human organs inside animals could solve the current organ scarcity problem by increasing supply of organs, saving thousands of lives each year in Europe alone. As illustrated in the example, organs created in this way could be tailored to the individual patient’s DNA, allowing transplantation without the risk of immune rejection. However, the prospect of growing organs of human origin within (non-human) animals raises several ethical issues, which we explore in our paper.

Although chimera organs are ‘personalised’ and unlikely to be rejected, one of the major concerns about using organs transplanted from animals is the risk of ‘zoonosis’ – the possibility that an animal virus might be transmitted along with the organ, resulting in a new disease that could cause a pandemic. more…

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