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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.

Child Euthanasia: Should We Just not Talk about It?

12 May, 15 | by Iain Brassington

Guest Post by Luc Bovens

In 2014 Belgium passed a law that extends its euthanasia legislation to minors.  There were strong parliamentary majorities in favour of this law but nonetheless a scream of “Murderers!” was heard in the public galleries of the Chamber of Representatives.  What is the opposition like in Belgium?

Euthanasia for adults has been legal in Belgium since 2002.  Many opponents of this legislation, including the Catholic Church, abhor the decision to further extend this legislation to minors.  I do not engage with the legalisation of euthanasia in general.  What I am asking is whether, considering that euthanasia is legal, it is or is not reasonable to limit the legislation to adults only.  This is a separate moral question.  One may be an opponent of a particular practice, yet at the same time believe that, if the practice is legalised, then it would be wrong to restrict the legalisation to a particular subgroup.   (Likewise, one may be an opponent of, say, legislation permitting abortion, and yet, if abortion is legalised, oppose a restriction that would make it accessible to only certain sectors of society.)  I distinguish between two lines of opposition that focus on the extension of the euthanasia legislation to minors in the Belgian debate.

First, there is an Open Letter signed by (mostly) paediatricians and there are various arguments in the press against the extension of the legislation: We should never grant euthanasia requests to minors, because such decisions are too weighty for minors, minors are not capable of discernment, the pressure on minors is too great, minors are particularly sensitive to such pressure, and there is sufficient palliative care for minors.

more…

Guest Posts and Tumbleweed

12 May, 15 | by Iain Brassington

A quick editorial note: it’s been remarkably quiet here for a while.giphy

There’s no staggering reason for this: only that real life has got in the way of posting and also of getting guest posts published.  (I can’t speak for David, but I assume that the same goes for him.)

I think there’s about 4 or 5 guest spots waiting to come up; I’ll post them over the next few days.

How can journal editors fight bias in polarized scientific communities?

30 Apr, 15 | by bearp

By Brian D. Earp

In a recent issue of the Journal of Medical Ethics, Thomas Ploug and Søren Holm point out that scientific communities can sometimes get pretty polarized. This happens when two different groups of researchers consistently argue for (more or less) opposite positions on some hot-button empirical issue.

The examples they give are: debates over the merits of breast cancer screening and the advisability of prescribing statins to people at low risk of heart disease. Other examples come easily to mind. The one that pops into my head is the debate over the health benefits vs. risks of male circumcision—which I’ve covered in some detail here, here, here, here, and here.

When I first starting writing about this issue, I was pretty “polarized” myself. But I’ve tried to step back over the years to look for middle ground. Once you realize that your arguments are getting too one-sided, it’s hard to go on producing them without making some adjustments. At least, it is without losing credibility — and no small measure of self-respect.

This point will become important later on.

Nota bene! According to Ploug and Holm, disagreement is not the same as polarization. Instead, polarization only happens when researchers:

(1) Begin to self-identify as proponents of a particular position that needs to be strongly defended beyond what is supported by the data, and

(2) Begin to discount arguments and data that would normally be taken as important in a scientific debate.

But wait a minute. Isn’t there something peculiar about point number (1)?

On the one hand, it’s framed in terms of self-identification, so: “I see myself as a proponent of a particular position that needs to be strongly defended.” Ok, that much makes sense. But then it makes it sound like this position-defending has to go “beyond what is supported by the data.”

But who would self-identify as someone who makes inadequately supported arguments?

We might chalk this up to ambiguous phrasing. Maybe the authors mean that (in order for polarization to be diagnosed) researchers have to self-identify as “proponents of a particular position,” while the part about “beyond the data” is what an objective third-party would say about the researchers (even if that’s not what they would say about themselves). It’s hard to know for sure.

But the issue of self-identification is going to come up again in a minute, because I think it poses a big problem for Ploug and Holm’s ultimate proposal for how to combat polarization. To see why this is the case, though, I have to say a little bit more about what their overall suggestion is in the first place.

more…

My One Appearance in “Cosmo”…

28 Apr, 15 | by Iain Brassington

… and they go and screw it up.

A few weeks (months?) ago, I got a call from Cosmopolitan to ask if I’d talk about home-testing kits for genetics – stuff like what 23andMe offers.  We talked, and I like to think that I said something useful… and promptly forgot all about it, until just now, when the University of Manchester press office sent me a link to this: a story about HIV self-testing kits in the UK.

It’s a piece that quotes me.  It quotes me from that interview I did about genetic – genetic! – tests:

Iain Brassington, Healthcare Ethics professor at the University of Manchester told Cosmo Body:

“People invest a lot in genetic information and it could have a serious psychological impact. Someone could feel anxious, distraught, even suicidal if they find out they are carrying a gene associated with particular diseases.”

Can you see the problem here?

Apart from the fact that I’m not, and am unlikely soon to be, a Professor, I mean?

OK: for clarity’s sake (and just in case there are any Cosmo readers who’ve drifted here): genetic tests and HIV tests are VERY DIFFERENT THINGS, and raise CORRESPONDINGLY DIFFERENT PROBLEMS.  I don’t think that HIV is a genetic condition.  Only idiots think that.  Some of the problems with one might well be problems with the other.  But we can’t leap between the two so easily.  I don’t know what I think about home HIV tests; I’ve not thought about them much, and noone’s asked me to have an opionion on them yet.  THIS QUOTATION MAKES ME LOOK LIKE AN IDIOT.

Also, they put words in my mouth.  I can’t remember what I said, but I doubt it’d’ve been anything as fatuous as “Someone could feel anxious, distraught, even suicidal if they find out they are carrying a gene associated with particular diseases.”  That’s simply not the kind of thing I say.

Yes, I’m posting here shamelessly, because I don’t want that particular piece to appear if people Google me without some kind of balancing act.  And I’m posting a screengrab just below the fold for posterity’s sake, just in case Cosmo deletes the page.

more…

Animal Liberation: Sacrificing the Good on the Altar of the Perfect?

24 Apr, 15 | by Iain Brassington

For my money, one of the best papers at the nonhuman animal ethics conference at Birmingham a couple of weeks ago was Steve Cooke’s.*  He was looking at the justifications for direct action in the name of disrupting research on animals, and presented the case – reasonably convincingly – that the main arguments against the permissibility of such direct action simply don’t work.  For him, there’s a decent analogy between rescuing animals from laboratories and rescuing drowning children from ponds: in both cases, if you can do so, you should, subject to the normal constraints about reasonable costs.  The question then becomes one of what is a reasonable cost.  He added to this that the mere illegality of such disruption mightn’t tip the balance away from action.  After all, if a law is unjust (he claims), it’s hard to see how that alone would make an all-else-being-equal permissible action impermissible.  What the law allows to be done to animals in labs is unjust, and so it doesn’t make much sense to say that breaking the law per se is wrong.

Now, I’m paraphrasing the argument, and ignoring a lot of background jurisprudential debate about obligations to follow the law.  (There are those who think that there’s a prima facie obligation to obey the law qua law; but I think that any reasonable version of that account will have a cutoff somewhere should the law be sufficiently unjust.)  But for my purposes, I don’t think that that matters.

It’s also worth noting that, at least formally, Cooke’s argument might be able to accommodate at least some animal research.  If you can claim that a given piece of research is, all things considered, justifiable, then direct action to disrupt it might not have the same moral backing.  Cooke thinks that little, if any, animal research is justified – but, again, that’s another, higher-order, argument.

One consideration in that further argument may be whether you think that there’s a duty to carry out (at least certain kinds of) research. more…

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 (www.itsgoodtotalk.org.uk).

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…

Incentives, Penalties, and Vaccination.

13 Apr, 15 | by Iain Brassington

This popped up on my FB feed yesterday: a proposal from the Australian government that certain child welfare payments should be withheld from parents who refuse to vaccinate their kids based on “conscientious objection”.

Parents who do not vaccinate their children will lose welfare payments of up to $2100 per child under a federal government policy set to be announced before the May budget.

Under changes that could save more than $50 million a year, Social Services Minister Scott Morrison is preparing to scrap a “conscientious objection” provision which allows anti-vaccination parents to still claim welfare benefits including childcare assistance and Family Tax Benefit A.

Fairfax Media understands the Family Tax Benefit A is worth up to $2100 per child.

What to make of the idea?

Well, I think that certain things can be taken more or less as read.  The first is that vaccination is a good thing, and is quite possibly a prima facie duty.  The second is that governments may, and perhaps must, encourage vaccination.  So it looks as though an argument in defence of the idea could be valid.  Measures to increase levels of vaccination are desirable; this is a measure that (if it works) would increase levels of vaccination; therefore this is desirable.  We’d have to do a bit of work to see whether the argument actually does work – formal validity won’t guarantee that – but in the meantime, the policy may be justified on the basis that it’s reasonable to believe that it would work.

But that is not, of course, the whole story.  Effectiveness is a necessary condition for a policy being justified, but it ain’t sufficient.  It’s likely that there’s more to say. more…

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