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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…

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…

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…

Animals in US Laboratories: Who Counts, Who Matters?

21 Mar, 15 | by BMJ

Guest post by Alka Chandna

How many animals are experimented on in laboratories? It’s a simple question, the answer to which provides a basic parameter to help us wrap our heads around the increasingly controversial and ethically harrowing practice of locking animals in cages and conducting harmful procedures on them that are often scary, painful, and deadly. Yet ascertaining the answer in the United States – the world’s largest user of animals in experiments – is surprisingly difficult.

In the eyes of the US Animal Welfare Act (AWA) – the single federal law that governs the treatment of animals used in experimentation – not all animals are created equal. Mice, rats, and birds bred for experimentation, and all cold-blooded animals – estimated by industry to comprise more than 95 percent of all animals used – are all unscientifically and dumbfoundingly excluded from the AWA’s definition of “animal”. Orwell cheers from his grave while Darwin rolls in his.

Leaving aside the question of whether mice and rats should be categorized as vegetable or mineral, the exclusion of these animals from the AWA also results in a dearth of data on the most widely used species, as the only figures on animal use in US laboratories that are systematically collected, organized, and published by the government are on AWA-regulated species. more…

Autonomy and the Circumcision Wars

27 Feb, 15 | by Iain Brassington

Guest Post by Akim McMath

In December of last year, the Centers for Disease Control and Prevention (CDC) released its proposed new recommendations on male circumcision.  The verdict?  Circumcision provides major benefits with minimal risks.  These benefits accrue whether circumcision is performed in infancy or later on in life.  Circumcision may even help to stem the HIV epidemic in the United States.  Perhaps you should do something about that foreskin.

The resulting firestorm was swift, fierce, and predictable.  Critics of infant circumcision blasted the CDC, accusing it of trampling the child’s right to bodily integrity.  Defenders of circumcision fired back, extolling the prophylactic virtues of the procedure.  Subtle questions about autonomy were lost in the maelstrom.  Yet these questions lie at the heart of the conflict, as I suggest in a new article.

Let’s look more closely at the debate over circumcision and HIV.  Defenders of circumcision tout studies showing that circumcision reduces female-to-male sexual transmission of HIV.  Critics retort that there exists a more effective and less drastic means of achieving the same end – namely, condoms.  Perhaps, concede the defenders, but many men don’t use condoms consistently and effectively – hence the enduring problem of STIs.  That’s their choice! say the critics.  So? say the defenders.  And so on, ad infinitum.

The foregoing squabble is essentially a disagreement about autonomy. 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?

more…

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.

 

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