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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…

On Being a Hypocrite

1 Jul, 15 | by Iain Brassington

A piece appeared in The Atlantic a few days ago that aims to prick the perceived bubble of professional ethicists.  In fact, the headline is pretty hostile: THE HYPOCRISY OF PROFESSIONAL ETHICISTS.  Blimey.  The sub-headline doesn’t pull its punches either: “Even people who decide what’s right and wrong for a living don’t always behave well.”

I know that headlines are frequently not written by the person whose article they head, and so these won’t tell us much about the article – but, even so, I’m beginning to twitch.  Do I decide what’s right and wrong for a living?  I don’t think I do.  I possibly thought that that’s what an ethicist does when I was a fresher, or at school – but I’m not certain I did even then.  And even if I did, I discovered pretty quickly that it’s quite a bit more complicated than that.  For sure, I think about what’s right and wrong, and about what “right” and “wrong” mean; and I might even aspire to make the occasional discovery about right and wrong (or at least about how best to think about right and wrong).*  But as for deciding what is right and wrong?  Naaaah.

Anyway: to the substance of the piece, which – to be fair – is more moderate in tone, pointing out that “those who ponder big questions for a living don’t necessarily behave better, or think more clearly, than regular people do”.  That’s probably accurate enough, at least a good amount of the time.  I’d like to think that I’m thinking better about a particular problem than most people when I’m working on it; but I’m also thinking better about in that context than I would be at other times.  (Ask me about – say –  genetic privacy while I’m drafting a section of a paper on genetic privacy, and I’m your man.  Ask me while I’m making pastry… not so much.)  If we allow that I’m better at dealing with (a) specific moral question(s) while “on duty”, that won’t mean I’m not susceptible to the same intellectual shortcuts and fallacies as everyone else at least most of the rest of the time.  I’m probably almost as susceptible to them even when I am on duty.  I’d assume that the same applies to others in the profession, too.

The article does make great play of the apparent inconsistencies between what ethicists say and what they/ we do.  So there’s the finding about how many more say that eating meat is morally problematic than actually avoid it, and the chestnut about how ethics books are the ones most frequently stolen from libraries.**  At least there are decent sources cited – peer-reviewed papers like this one that are philosophically informed, to boot.

So: ethicists aren’t reliably better behaved than others.  I don’t think that should surprise us, though.  But, there’s a couple of questions into which we might still want to dig more deeply. more…

The Legal and Moral Significance of Implantation

23 Jun, 15 | by BMJ

Guest post by Sally Sheldon

We tend to talk about contraception and abortion as if they were two separate and readily distinguishable practices, the former preventing pregnancy and the latter ending it. This understanding has a very important effect in current British law, where a relatively permissive approach to the availability of contraception stands in stark contrast to the morally grounded, onerous criminal sanctions against abortion. Yet is the distinction between abortion and contraception really so clear cut?  How and why do we make it? And is the line that we have drawn between the two morally defensible?

As a matter of biological fact, the development of human life is not characterised by bright lines. As the eminent lawyer Glanville Williams once put it, “abstract human life does not ‘begin’; it just keeps going.” A seamless biological continuum exists through the production of sperm and egg, their joining together in a process of fertilisation, the gradual development of the new entity thus created throughout pregnancy, birth, subsequent growth, eventual death and ensuing decay of the body. Defining what happens along the way as an ‘embryo’, ‘fetus’, ‘person’, ‘adult’, or ‘corpse’ requires an attempt to draw lines on the basis of criteria selected as holding significance for legal or other purposes. How and where we draw such lines is a tricky business, involving careful moral reflection informed by medical fact.

The “regulatory cliff edge” between the relatively permissive regulation of contraception and the criminal prohibition of abortion relies on a line drawn on the basis of the biological event of implantation, where the fertilised egg physically attaches itself to the wall of the womb some six to twelve days after ovulation. Yet while enormous legal weight has been placed upon it, little consideration seems to have been given as to why implantation matters morally. The voluminous philosophical literature on the ethical status of the human embryo and foetus offers little support for the view that implantation is an important marker.

Further, while it might once have been suggested that implantation offers a conveniently timed moment for a necessary gear change between the appropriate regulation of contraception and abortion, this argument is difficult to sustain in the light of modern medical science. 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.

Prostitution, Harm, and Disability: Should Only People with Disabilities be Allowed to Pay for Sex?

17 Jun, 15 | by bearp

By Brian D. Earp

Introduction

Is prostitution harmful? And if it is harmful, should it be illegal to buy (or sell) sexual services? And if so, should there ever be any exceptions? What about for people with certain disabilities—say—who might find it difficult or even impossible to find a sexual partner if they weren’t allowed to exchange money for sex? Do people have a “right” to sexual fulfillment?

In a recent issue of the Journal of Medical Ethics, Frej Klem Thomsen[1] explores these and other controversial questions. His focus is on the issue of exceptions—specifically for those with certain disabilities. According to Thomsen, a person is “relevantly disabled” (for the sake of this discussion) if and only if:

(1) she has sexual needs, and desires to exercise her sexuality, and

(2) she has an anomalous physical or mental condition that, given her social circumstances, sufficiently limits her possibilities of exercising her sexuality, including fulfilling her sexual needs. (p. 455)

There is a lot to say here. First, in order to figure out the merits of making an exception to a general ban on prostitution (for people with disabilities or for anyone else), we have to start by deciding what to think about the advisability of such a ban in the first place. For, if we don’t think it’s a good idea to begin with (spoiler alert: this is my own view), then we can skip all the talk about making exemptions, and just argue against the ban.

But Thomsen doesn’t pursue that route. Instead, he wants to make a case for an exception. So, he has to try to convince his reader that a general prohibition makes at least some kind of moral and/or practical sense. How does he go about making this argument?

more…

The Moral Desirability of Early Fatherhood

5 Jun, 15 | by Iain Brassington

Guest Post by Kevin Smith

It is well known that the risk of disorders resulting from chromosomal abnormalities, such as Down’s syndrome, correlates with advancing maternal age.  Less widely known is the correlation between the age of fathers and an increased risk of a range of disorders in their resultant offspring, the most prominent of which are neuropsychiatric conditions including schizophrenia and autism.  This is the paternal age effect, the importance of which has recently become clear through a growing body of molecular genetic and epidemiological data.

The paternal age effect results from new mutations occurring in the stem cells from which sperm cells are derived, resulting in an accumulating mutational burden as the male ages.  Genetic abnormalities resulting from these paternal mutations are usually subtle at the molecular level (involving as little as a single nucleotide change), highly heterogeneous, and do not usually result in detectable foetal abnormalities.  Accordingly, the opportunity for prenatal detection of such cases is very limited.  (By contrast, the genetic abnormalities associated with maternal aging typically involve substantive chromosomal aberrations, comprise a relatively restricted range of commonly occurring forms, and frequently produce marked foetal defects; these features ensure that routine screening and testing reveals the majority of such cases prior to birth, permitting termination of affected foetuses.)  Additionally, and again in contrast to genetic aberrations associated with maternal age, paternal de novo mutations are transmitted through successive generations of males, with a concomitant intergenerational accumulation of genetic abnormalities.  Moreover, at least in Western societies, the average age of fatherhood is increasing markedly, a situation that will increase the burden of these mutations.  It follows that the age of potential fathers is of significant ethical importance.

My paper explores the ethical aspects of paternal age, in respect of both individual procreative decisions and societal responsibilities.  I argue inter alia that, somewhat contrary to the commonplace disapproval of young parents, early fatherhood is ethically desirable.  The most immediate practical means to achieve a reduction in paternal de novo mutations and associated genetic disorders would be the promotion of sperm banking amongst young males.

Read the full paper here.

Research Ethics: You’re Doing it Wrong!

1 Jun, 15 | by Iain Brassington

With any luck, the marking tsunami will have receded by the end of the week, and so I should be able to get back to blogging a bit more frequently soon.

In the meantime, I’ll fill some space by ripping off something from the “Feedback” page of the latest New Scientist:

The TV industry has […] yet another new mantra: “Not just more pixels, but better pixels”.  The marketeers’ problem is that few people can actually see the extra details in their newest, flashiest sets unless they sit very close or the screen is very, very bright.

A colleague found a demonstration unpleasant, especially when the image flashed, and wondered about the possible risk of this triggering photo-epilepsy or migraines.  One company said, yes, this was being looked into- but no, they could not identify the university doing the work.

Then in the tea break at a tech conference a senior engineer from a UK TV station confided the reason: “We are very aware of the risks and would love to do some real research.  But nobody dares to do it because it would involve tests that deliberately push subjects into epileptic fits, and might very possibly kill them.”

In other words: here’s an intuitively plausible risk associated with product p; we could test whether p is safe; but doing that test itself would be unsafe.  Were this a pharmaceutical trial, one would expect that things would stop there – or, at the very least, that things would move very slowly and carefully indeed.  (Maybe if the drug is highly beneficial, and can be used in highly controlled circumstances, it might be worth it.)

But with TVs… well, it looks like journalists have been invited to the product launch already.  My guess is that if the TV is found to be risky, it’d be quietly withdrawn ex post facto – which seems rather late in the day.

It is a bit strange that trials on a product aren’t being done not so much because of what they might reveal, as because even doing the test might be iffy.  Stranger yet that this is unlikely to make much of a dent in the marketing strategy.  Or, given the requirements of consumer capitalism, not all that strange after all: take your pick.

Sometimes, Big Pharma can seem like a model of probity.

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…

We should not Prevent Some Depressed People from Access to Assisted Dying

18 May, 15 | by BMJ

Guest post by Udo Schuklenk

We should not prevent some depressed people from access to assisted dying.

Deborah E Gray, whose depression is (according to her account) successfully managed today, describes vividly on her website the impact depression had on her.  She writes:

you don’t feel hopeful or happy about anything in your life.  You’re crying a lot for no apparent reason, either at nothing, or something that normally would be insignificant.  You feel like you’re moving (and thinking) in slow motion.  Getting up in the morning requires a lot of effort.  Carrying on a normal conversation is a struggle.  You can’t seem to express yourself.  You’re having trouble making simple decisions.  Your friends and family really irritate you.  You’re not sure if you still love your spouse/significant other.  Smiling feels stiff and awkward.  It’s like your smiling muscles are frozen.  It seems like there’s a glass wall between you and the rest of the world.  You’re forgetful, and it’s very difficult to concentrate on anything.  You’re anxious and worried a lot.  Everything seems hopeless.  You feel like you can’t do anything right.  You have recurring thoughts of death and/or suicidal impulses.  Suicide seems like a welcome relief.  Even on sunny days, it seems cloudy and gray.  You feel as though you’re drowning or suffocating.  Your senses seem dulled; food tastes bland and uninteresting, music doesn’t seem to affect you, you don’t bother smelling flowers anymore.

In many jurisdictions where the decriminalisation of assisted dying is debated, proponents of decriminalisation hasten to add that they would, of course, exclude patients that suffer from depression.  This may be a political move aimed at increasing the societal acceptability of assisted dying, but it is unjust towards patients suffering from treatment-resistant depression.  Many lay-people, and even doctors and nurses, fail to acknowledge the severe suffering that comes with depression.  Patients who suffer from long-term treatment resistant depression are not just ‘feeling a bit low’.  As the quotation above shows, these people really suffer existentially, and because their depression has proven to be untreatable (often over the course of decades) there is no relief for their suffering. 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.

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