The Ethics Blog

A blog from the Centre for Research Ethics & Bioethics (CRB)

Year: 2023 (Page 3 of 4)

Does the severity of an illness qualify the moral motivation to act?

18 April, 2023 / / 1 Comment

I have to admit that I had a little trouble cracking the code in the article which I will now try to summarize briefly. I hope that the title I have chosen is not already a misunderstanding. Moral philosophy is not easy, but the subject of the article is urgent so I still want to try.

Illness is generally perceived as something bad, as an evil. If we are to speak in terms of value, we can say that illness has negative value. Individual cases of illness usually create a moral motivation in us to mitigate the ill person’s negative condition. How strong this motivation is depends on several factors, but the severity of the disease is a relevant factor. The motivation to act typically increases with the severity of the disease.

This of course comes as no surprise. The motivation to alleviate a person’s cold is not very strong because a cold is not a severe condition. A runny nose is nothing to complain about. But in the face of more severe conditions such as blood poisoning, diabetes and cancer, the moral drive to act increases. “This condition is very severe” we say and feel that it is very important to act.

So what is the problem that motivates the article? If I am interpreting the authors correctly, the problem is that it is not so easy to convert this obvious use of language into a rule to follow. I recently bought a kettle that came with this warning: “Do not fill the kettle with an excessive amount of water.” The warning is, in a way, self-evident. Of course, you should not fill the kettle with an excessive amount of water! The motivation to pour should have stopped before the water level got excessively high. Even though the language is perfectly obvious, the rule is not as obvious, because when is the water level excessively high? When should we stop pouring?

The problem with the word “severity” is similar, or at least that is my interpretation. “Severity” is an obvious linguistic tool when we discuss illness and the need to do something about it. But at the same time, it is difficult to define the term as a description of when conditions are (more or less) severe and when it is (more or less) motivated to do something about them. Some philosophers have therefore criticized the use of “severity” in discussions about, for example, priority setting in healthcare. The situation would become somewhat paradoxical, since an obviously relevant concept would be excluded because it is unclear how it can be transformed into a description that can be followed as if it were a simple rule.

If I understand the article correctly, the authors want to defend the concept of severity by showing that severity qualifies our moral motivation to act when someone is ill. They do this by describing six other concepts that it is more generally accepted should qualify how morally important it is to do something about a condition, including the concepts of need and lack of well-being. None of the six concepts coincides completely with the concept of severity, but when we try to assess how they affect the need to act, we will often simultaneously assess the severity. And when we assess the severity of an illness, we will often at the same time assess how the illness affects well-being, for example.

The authors’ conclusion is that the concept of severity is a morally relevant concept that should be considered in future discussions, as severity qualifies the moral motivation to act. However, I may have misunderstood the reasoning, so if you want to be on the safe side, you can read the article here: Severity as a moral qualifier of malady.

I want to end the post with a personal side note: I am inclined to say that the philosophical difficulty in defining the concept of severity (when we talk about disease) is similar to the difficulty in defining the concept of excess (when we talk about water levels). What makes these concepts so useful is their great pliability. It is difficult to say what “severe disease” or “excessively high water level” is, because it depends on so much. Pliable words like these are like tracking dogs that sensitively move through the terrain in all possible relevant directions. But if we try to reconstruct the tracking dog’s sensitivity in general intellectual terms, without access to the dog’s sense of smell, experiences and instincts, we run into great difficulties.

Should these philosophical difficulties motivate us to get rid of the dog? Of course not! Just as we learn incredibly much from following a tracking dog, we learn incredibly much from following the words “severe disease,” even if the journey is arduous. This underlines the authors’ conclusion: severity should be considered a morally significant concept that continues to deserve our attention.

Pär Segerdahl

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Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Solberg, C.T., Barra, M., Sandman, L. et al. Severity as a moral qualifier of malady. BMC Medical Ethics 24, 25 (2023). https://doi.org/10.1186/s12910-023-00903-2

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The significance of the academic seminar

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11 April, 2023 / / 1 Comment

Ever since I was a doctoral student in philosophy, I have experienced the seminar, usually held once a week, as the heart of the academic environment. Why is the seminar so important?

If we are to stick to the etymology of the word, we should use a different image than that of the heart. The seminar is the nursery where seeds germinate and seedlings grow strong in a favourable environment, to then be planted out. That image fits well with doctoral education. The seminar is the place where doctoral students get training in presenting and discussing their scientific work. They get the opportunity to present their studies and texts and receive constructive criticism from senior researchers and from other doctoral students. In this way, their theses will be as brilliant as possible and they can practice the academic forms of giving and receiving constructive criticism, of defending their positions and changing their minds.

But there are also other seedlings in the academy than doctoral students and thesis drafts. Even senior researchers’ studies and texts are originally seedlings. Even these need to grow before they can be planted in scientific journals or at book publishers. The seminar never ceases to be a nursery. I dare say that the seminar is just as important for established researchers as it is for doctoral students.

The seminar is also the weekly event where something finally happens together with others. Academics often work in a certain solitude, especially when writing. Colleagues who may not have met since the last seminar reunite and continue the conversation in the familiar seminar room. Is the seminar like a recurring dance arrangement for lonely academics? Yes, the seminar probably also resembles an academic dance palace. In addition, sometimes you can invite presenters to the seminar, maybe even stars, then the event will be really brilliant.

The seminar is not least one of every academic institution’s most important places for discussion where colleagues meet regularly and learn to understand each other. Despite working from different theoretical, methodological and linguistic starting points. The academy is not homogenous, but is full of theories, methods and languages, even within the same discipline. If we do not meet every week and continue the conversation together, we soon become strangers who do not understand each other.

All these images reveal essential aspects of the academic seminar: the image of nursery as well as the image of the dance palace and the image of the place of discussion. Yet they do not reveal the significance of the seminar that I experience most strongly. I must return to the image of the heart, of the life-sustaining centre. I want to say that the seminar is the place where an academic subject becomes alive and real. The subject can be philosophy or literature, mathematics or neuroscience, law or economy. What can such strange subjects mean in the heart of a human being? At the seminar, living philosophers, literary scholars, mathematicians, lawyers or economists meet each other. At the seminar, they bring their academic subjects to life, for themselves and for younger researchers in the making. Each seminar pumps new reality into the subject, which would otherwise be pale and abstract. At the seminar you can see, hear and even smell what philosophy and other academic subjects really are. They never become more real than in the seminar.

I think we could go on forever looking for different meanings of the academic seminar.

Pär Segerdahl

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Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

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Ethical challenges when children with cancer are recruited for research

28 March, 2023 / / 1 Comment

Cancer is a common cause of death among children, but improved treatments have significantly increased survival, especially in high-income countries. A prerequisite for this development is research.

When we think of a hospital, we think mainly of the care given to patients there. But care and research are largely developed together in the hospitals. Treatments given in the hospitals are tested in research carried out in the hospitals. This overlap of care and research in the same setting creates ethical challenges. Not least because it can be difficult to see and maintain the differences when, as I said, the activities overlap.

Kajsa Norbäck, PhD student at CRB, investigates in an interview study Swedish healthcare professionals’ perceptions and experiences of ethical challenges when children with cancer are recruited for research in the hospitals where they are patients. Research is needed for future childhood cancer care, but what are the challenges when approaching children with cancer and their parents with the question of research participation?

The interview material is rich and difficult to summarize in a blog post, but I want to highlight a few findings that particularly impressed me. I recommend those interested to take the time to read the entire article in peace and quiet. Interview studies provide a living direct contact with reality from the perspective of the interviewees. Kajsa Norbäck writes that interview studies give us informative examples of ethical challenges. Such examples are needed to give the ethical reflection concreteness and grounding in reality.

The interviewed healthcare professionals particularly emphasized the importance of establishing a trusting relationship with the family. Only when you have such a relationship does it make sense to discuss possible research participation. Personally, I cannot help but interpret it as meaning that the care relationship with patient and family must be established first. It is within the framework of the care relationship that possible research participation can be discussed in a trusting manner. But trust can also be a dilemma, the interviews show. The interviewees stated that many families had so much trust in healthcare and research that it could feel too easy and predictable to get consent for research participation. They also had the impression that parents could sometimes give consent to research out of fear of not having done everything they could to save the child, as if research was a last chance to get effective care.

The challenge of managing the overlap of care and research also extends to the professional role of the physician. Physicians have a care responsibility, but since the care they can offer rests on research, they also feel a research responsibility: they feel a responsibility to recruit research participants from among their patients. This dual responsibility can naturally create conflicts of interest, of which they give informative examples in the interviews.

In the middle of this force field of challenges we have the child, who may have difficulty making itself heard, perhaps because many of us have difficulty being a listener. Here is what one of the interviewees says: “We often talk about informing and I think that’s a strange word. I think the greatest competence is to listen.” There is a lot to listen to in Kajsa Norbäck’s interview study as well, more than I can reproduce in a blog post. Read her article here: Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Norbäck, K., Höglund, A.T., Godskesen, T. and Frygner-Holm, S. Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences. BMC Medical Ethics 24, 23 (2023). https://doi.org/10.1186/s12910-023-00901-4

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Ethics needs empirical input

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Science, science communication and language

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21 March, 2023 / / 2 Comments

All communications require a shared language and fruitful discussions rely on conceptual clarity and common terms. Different definitions and divergent nomenclatures is a challenge for science: across different disciplines, between professions and when engaging with different publics. The audience for science communications is diverse. Research questions and results need to be shared within the field, between fields, with policy makers and publics. To be effective, the language, style and channel should to be adapted to the audiences’ needs, values and expectations.

This is not just in public facing communications. A recent discussion in Neuron is addressing the semantics of “sentience” in scientific communication, starting from an article by Brett J Kagan et al. on how in vitro neurons learn and exhibit sentience when embodied in a simulated game world. The article was published in December 2022 and received a lot of attention: both positive media coverage and a mix of positive and negative reactions from the scientific community. In a response, Fuat Balci et al. express concerns about the key claim in the article: claims that the authors demonstrated that cortical neurons are able to (in vitro) self-organise and display intelligent and sentient behaviour in a simulated game-world. Balci et al. are (among other things) critical of the use of terms and concepts that they claim misrepresent the findings. They also claim that Kagan et al. are overselling the translational and societal relevance of their findings. In essence creating hype around their own research. They raise a discussion about the importance of scientific communication: media tends to relay information from abstracts and statements about the significance of the research, and the scientists themselves amplify these statements in interviews. They claim that overselling results has an impact on how we evaluate scientific credibility and reliability. 

Why does this happen? Balci et al. point to a paper by Jevin D. West and Carl T. Bergstrom, from 2021 on misinformation in and about science, suggesting that hype, hyperbole (using exaggeration as a figure of speech or rhetorical device) and publication bias might have to do with demands on different productivity metrics. According to West and Bergstrom, exaggeration in popular scientific writing isn’t just misinforming the public: it also misleads researchers. In turn leading to citation misdirection and citation bias. A related problem is predatory publishing, which has the potential to mislead those of us without the means to detect untrustworthy publishers. And to top it off, echo-chambers and filter bubbles help select and deselect information and amplify the messages they think you want to hear.

The discussion in Neuron has continued with a response by Brett J. Kagan et al., in a letter about scientific communication and the semantics of sentience. They start by stating that the use of language to describe specific phenomena is a contentious aspect of scientific discourse and that whether scientific communication is effective or not depends on the context where the language is used. And that in this case using the term “sentience” has a technical meaning in line with recent literature in theoretical biology and the free energy principle, where biotic self-organisation is defined as either active inference or sentient behaviour. 

They make an interesting point that takes us back to the beginning of this post, namely the challenges of multidisciplinary work. Advancing research in cross-disciplinary collaboration is often challenging in the beginning because of difficulties integrating across fields. But if the different nomenclatures and approaches are recognized as an opportunity to improve and innovate, there can be benefits.

Recently, another letter by Karen S. Rommelfanger, Khara M. Ramos and Arleen Salles added a layer of reflection on the conceptual conundrums for neuroscience. In their own field of neuroethics, calls for clear language and concepts in scientific practice and communication is nothing new. They have all argued that conceptual clarity can improve science, enhance our understanding and lead to a more nuanced and productive discussion about the ethical issues. In the letter, the authors raise an important point about science and society. If we really believe that scientific terminology can retain its technically defined meaning when we transfer words to contexts permeated by a variety of cultural assumptions and colloquial uses of those same terms, we run the risk of trivialising the social and ethical impact that the choice of scientific terminology can have. They ask whether it is responsible of scientists to consider peers as their only (relevant) audience, or if conceptual clarity in science might often require public engagement and a multidisciplinary conversation.

One could also suggest that the choice to opt for terms like “sentience” and “intelligence” as a technical characterisation of how cortical neurons function in a simulated in-vitro game-world, could be considered to be questionable also from the point of view of scientific development. If we agree that neuroscience can shed light on sentience and intelligence, we also have to admit that at as of yet, we don’t know exactly how it will illuminate these capacities. And perhaps that means it is too early to bind very specific technical meaning to terms that have both colloquial and cultural meaning, and which neuroscience can illuminate in as yet unknown ways?

You may wonder why an ethics blog writer dares to express views on scientific terminology. The point I am trying to make is that we all use language, but we also produce language. Everyday. Together. In almost everything we do. This means that words like sentience and intelligence belong to us all. We have a shared responsibility for how we use them. The decision to give these common words technical meaning has consequences for how people will understand neuroscience when the words find their way back out of the technical context. But there can also be consequences for science when the words find their way in, as in the case under discussion. Because the boundaries between science and society might not be so clearly distinguishable as one might think.

Josepine Fernow

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Josepine Fernow, science communications project manager and coordinator at the Centre for Research Ethics & Bioethics, develops communications strategy for European research projects

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Digital biomarkers to test new drugs for mental health

14 March, 2023 / / 1 Comment

Somewhat simplified, we usually understand biomarkers as substances in the body that can be detected, for example, through blood or urine tests, and that indicate a biological state, such as cancers or diabetes. Biomarkers can be used to make a diagnosis, predict disease risks and to monitor an ongoing treatment.

Nowadays, people also talk about digital biomarkers. To get an idea of what it is all about, think of the smartphone applications that can record movement patterns, heart rate and more. The new digital biomarkers are measurable physiological or behavioural data that are collected in a similar way and where the measuring equipment is usually portable or placed in the body. This data can be followed in real time to monitor the patient’s health status and recovery, without the need for the patient to make repeated hospital visits. However, the question of how these digital data can be understood as biomarkers does not seem completely clear.

Some concurrently published articles in the journal Frontiers in Psychiatry discuss the possibility of using digital biomarkers to test the safety and efficacy of new drugs in mental health. For this to work, these new ways of collecting data and monitoring changes in real time must of course also work safely and effectively. They must moreover satisfy ethical and legal demands on data protection and oversight. The articles discuss these and other challenges. In one article, for example, the question of how we should understand “bio” when we go from traditional biomarkers to digital ones is discussed. Another paper presents results from an attempt to use a digital biomarker to predict cognitive function.

In the editorial introducing the articles, Deborah Mascalzoni, among others, emphasizes that the use of digital biomarkers still lacks a satisfactory regulated context and that issues of data protection and risks of discrimination when data of this kind are collected must be addressed. You can find the editorial here: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators. There you will also find a link to all articles.

Pär Segerdahl

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Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Johanna Maria Catharina Blom, Cristina Benatti, Deborah Mascalzoni, Fabio Tascedda and Luca Pani. Editorial: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators. Frontiers in Psychiatry, 2023. https://doi.org/10.3389/fpsyt.2022.1107037

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Philosophers in democratic conversations about ethics, research and society

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7 March, 2023 / / 1 Comment

Philosophers have an ambiguous position in the knowledge society which could support democratic conversations where truth and openness are united. On the one hand, philosophers are driven by a strong desire for the truth. They ask questions more often than they give answers, and they do not give answers until they have thoroughly explored the questions and judged that they can establish the truth, to speak a little pompously. On the other hand, philosophers cannot communicate their conclusions to society with the same authority that empirical scientists can communicate their findings. Philosophical reasoning, however rigorous it may appear to be, does not function as scientific evidence. It would be doubtful if a philosopher said, “A very clear reasoning which I recently carried out shows that…,” and expected people to accept the conclusion, as we expect people to accept the results of empirical studies.

Despite their strong desire to find the truth, philosophers can thus rarely “inform” about the truths they believe they have found, but must exercise restraint and present these truths as proposals, and then appeal to their interlocutors to judge the proposal for themselves. That is, to think for themselves. The desire to communicate one’s philosophical conclusions to others thus results in conversations on more or less equal terms, where more or less clear reasoning is developed together during the course of the conversation. The philosopher’s ambiguous position in the knowledge society can here act as a catalyst for conversations where the aspiration to think correctly, and the will to think freely, support each other.

The ambiguous position of philosophy in the knowledge society is evident in medical ethics, because here philosophy is in dialogue with patients, healthcare professionals and medical researchers. In medical ethics, there are sometimes so-called “ethics rounds,” where an ethicist visits the hospital and discusses patient cases with the staff from ethical perspectives. The role of the ethicist or philosopher in these conversations is not to draw the correct ethical conclusions and then inform the staff of the morally right thing to do. By striving for truth and by asking questions, the philosopher rather supports the staff’s own ethical reasoning. Of course, one or another of the philosopher’s own conclusions can be expressed in the conversation, but as a suggestion and as an invitation to the staff to investigate for themselves whether it can be so. Often the most important thing is to identify the crucial issues. The philosopher’s ambiguous standing can in these contexts act as a catalyst for good conversations.

Another area where the ambiguous position of philosophy in the knowledge society is evident is in research communication of ethics research, like the one we do here at CRB. Ethicists sometimes conduct empirical studies of various kinds (surveys, interviews and experiments). They can then naturally expect people (the general public or relevant groups) to take the results to heart. But these empirical studies are usually done to shed light on some ethical difficulty and to draw ethical, normative conclusions on good grounds. Again, these conclusions can rarely be communicated as research findings, so the communicator also has to exercise restraint and present the conclusions as relevant proposals to continue thinking and talking about. Research communication becomes not only informative and explanatory, but also thoughtful. It appeals to people to think for themselves. Awareness of the ambiguous position of philosophy can thus support research communication that raises open questions, in addition to disseminating and explaining scientific findings.

Since political conclusions based on scientific studies seem to have a similar ambiguous status to ethical and philosophical conclusions, philosophy could also inspire wiser democratic conversations about how research should be implemented in society. This applies not least to controversial issues, which often polarize and encourage debaters to make strong claims to possess the best evidence and the most rigorous reasoning, which they believe justifies their positions. But such a truth authority on how we should live and organize society hardly exists, even if we strive for the truth. As soon as we talk to each other, we can only make suggestions and appeal to our interlocutors to judge the matter for themselves, just as we ourselves listen to our interlocutors’ objections, questions and suggestions.

Strong pursuit of truth requires great openness. When we philosophize, these aspects are at best united. In this way, philosophy could inspire democratic conversations where people actually talk to each other and seek the truth together. Not just make their voices heard.

Pär Segerdahl

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Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

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A new project will explore the prospect of artificial awareness

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28 February, 2023 / / 1 Comment

The neuroethics group at CRB has just started its work as part of a new European research project about artificial awareness. The project is called “Counterfactual Assessment and Valuation for Awareness Architecture” (CAVAA), and is funded for a duration of four years. The consortium is composed of 10 institutions, coordinated by the Radboud University in the Netherlands.

The goal of CAVAA is “to realize a theory of awareness instantiated as an integrated computational architecture…, to explain awareness in biological systems and engineer it in technological ones.” Different specific objectives derive from this general goal. First, CAVAA has a robust theoretical component: it relies on a strong theoretical framework. Conceptual reflection on awareness, including its definition and the identification of features that allow its attribution to either biological organisms or artificial systems, is an explicit task of the project. Second, CAVAA is interested in exploring the connection between awareness in biological organisms and its possible replication in artificial systems. The project thus gives much attention to the connection between neuroscience and AI. Third, against this background, CAVAA aims at replicating awareness in artificial settings. Importantly, the project also has a clear ethical responsibility, more specifically about anticipating the potential societal and ethical impact of aware artificial systems.

There are several reasons why a scientific project with a strong engineering and computer science component also has philosophers on board. We are asked to contribute to developing a strong and consistent theoretical account of awareness, including the conceptual conceivability and the technical feasibility of its artificial replication. This is not straightforward, not only because there are many content-related challenges, but also because there are logical traps to avoid. For instance, we should avoid the temptation to validate an empirical statement on the basis of our own theory: this would possibly be tautological or circular.

In addition to this theoretical contribution, we will also collaborate in identifying indicators of awareness and benchmarks for validating the cognitive architecture that will be developed. Finally, we will collaborate in the ethical analysis concerning potential future scenarios related to artificial awareness, such as the possibility of developing artificial moral agents or the need to extend moral rights also to artificial systems.

In the end, there are several potential contributions that philosophy can provide to the scientific attempt to replicate biological awareness in artificial systems. Part of this possible collaboration is the fundamental and provoking question: why should we try to develop artificial awareness at all? What is the expected benefit, should we succeed? This is definitely an open question, with possible arguments for and against attempting such a grand accomplishment.

There is also another question of equal importance, which may justify the effort to identify the necessary and sufficient conditions for artificial systems to become aware, and how to recognize them as such. What if we will inadvertently create (or worse: have already created) forms of artificial awareness, but do not recognize this and treat them as if they were unaware? Such scenarios also confront us with serious ethical issues. So, regardless of our background beliefs about artificial awareness, it is worth investing in thinking about it.

Stay tuned to hear more from CAVAA!

Written by…

Michele Farisco, Postdoc Researcher at Centre for Research Ethics & Bioethics, working in the EU Flagship Human Brain Project.

Part of international collaborations

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Longer hospital stays can worsen self-injurious behaviour

21 February, 2023 / / 1 Comment

Can a hospital stay make the disease worse? It sounds paradoxical, but of course it can occur as a result of, for example, misdiagnosis and negligence, or of overtreatment. When it comes to psychiatric illnesses and ailments, which are often sensitive to the interaction with the environment, it can be difficult to see how the situation at the hospital affects the illness. Therefore, it is important to be attentive.

A new study by Antoinette Lundahl, carried out together with Gert Helgesson and Niklas Juth, draws attention to the problem in the care of patients who self-harm. They did a survey with healthcare staff at psychiatric clinics in Stockholm. The respondents answered questions about experiences of care longer than a week with this patient group. A majority of the respondents believed that it had detrimental effects on self-injurious behaviour if the patients stayed longer than a week in their ward. They also considered that the patients often stayed too long in the ward and that the reasons for the extended length of stay were in several cases non-medical.

How are we to understand this? How might hospitalization increase the risk of the behaviour to be treated? In the discussion part of the article, various possible explanations are suggested, for example conflicts on the ward or that patients spread self-injurious behaviours to each other. Another possible explanation is that the hospital stay is used by the patient to transfer responsibility for handling painful feelings and thoughts to others. Such avoidance strategies only have a short-term effect and increase the pain in the long term. The self-injurious behaviour can be reinforced as a way to get more care and attention. A kind of “care addiction” develops in the patient, you could say.

How should we understand the extended hospital stays? The respondents mentioned several non-medical reasons, such as uncertainty about the patient’s housing, or that patients who look fragile or are assertive influence the staff to extend the length of care. Another reason for extended care times was assumed to be doctors’ fear of being held responsible for suicide or attempted suicide after discharge, a fear which paradoxically could increase the risk.

Read Antoinette Lundahl’s article here: Hospital staff at most psychiatric clinics in Stockholm experience that patients who self-harm have too long hospital stays, with ensuing detrimental effects.

Then you can also read more about the respondents’ suggestions for improvements, such as giving patients clear care plans with fixed discharge dates, short treatment times (a few days), and information about what is expected of them during the hospital stay. Better collaboration with outpatient care was also recommended, as well as more non-medical treatments in inpatient care.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Antoinette Lundahl, Gert Helgesson & Niklas Juth (2022) Hospital staff at most psychiatric clinics in Stockholm experience that patients who self-harm have too long hospital stays, with ensuing detrimental effects, Nordic Journal of Psychiatry, 76:4, 287-294, DOI: 10.1080/08039488.2021.1965213

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What does it mean to prioritize patients according to severity?

14 February, 2023 / / 1 Comment

How should patients be prioritized in health care? In many countries’ regulations, the answer to this question is formulated in terms of severity: the more severe the illness of a patient is, the higher the patient should be prioritized. Although other things may matter for health care priorities, such as cost-effectiveness, severity should be at least one of the criteria. But what makes an illness more severe than another? How should we compare patients in terms of severity?

A recently launched research project tries to tackle these issues. The project is a collaboration between CRB and The National Centre for Priorities in Health in Sweden at Linköping University. The issue of morally sound priority setting in health care is increasingly important and pressing, not least because of the continuing development of new treatments. We can do more for patients today than ever before, but these treatments compete for the limited resources of health care.

The purpose of the project is to make the vague and contested notion of severity more normatively robust and precise by investigating moral issues related to severity. If the concept of severity is to provide valid reasons for prioritization, we must first examine what we should mean by the concept in the context of disease and health care. For instance, there are different ideas about why severity should matter in health care priorities. One idea is that being more severely ill means being worse off than others and that this inequality is something bad. Another idea is that we have stronger reasons to help people the worse off they are, that is, some idea about the moral weight of evil. These different ideas have different implications for which patients to treat first.

There are also different notions about what features of a patient or illness makes that patient more severely ill. It could be quality of life, functioning, existential suffering, or length of life. A common intuition is that an illness with a prognosis of one year survival is more severe when it affects a 20-year old person than an 80-year old person, but that there is no difference in severity when the same illness affects people only ten years apart, say a 40-year old compared to a 50-year old. Together with Borgar Jølstad, I have investigated if this intuition holds up for closer scrutiny. Our conclusion is that it is doubtful. Read our article here: Age and Illness Severity: A Case of Irrelevant Utilities?

The project also looks into economic and legal issues. One economic issue is how different notions of severity affect the total health we can get out of the health care system with a limited budget. Legally, the issue is to what extent different notions of severity are compatible with existing regulations.

This was just a brief presentation of the new project. More posts on specific issues will come when we publish our studies in journals. Hopefully we can soon propose some well-argued answers on how to prioritize patients according to severity. If you want to know more about our basic perspective on some of the issues that will be investigated further, you can read this article: Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda.

Niklas Juth

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Niklas Juth, Professor of Clinical Medical Ethics at the Centre for Research Ethics & Bioethics (CRB)

Jølstad, B., & Juth, N. (2022). Age and Illness Severity: A Case of Irrelevant Utilities? Utilitas, 34(2), 209-224. doi:10.1017/S0953820822000024

Barra, M., Broqvist, M., Gustavsson, E. et al. Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda. Health Care Analysis 28, 25–44 (2020). https://doi.org/10.1007/s10728-019-00371-z

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The branding of psychotherapy and responsible practice

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7 February, 2023 / / 2 Comments

Clinical psychologists receive degrees from universities, training them to effectively apply psychotherapy programs in psychiatry settings. But after graduation, whose responsibility is it to train, or perhaps re-train, clinical psychologists to practice “proper” therapy? Is it the responsibility of the owner of a three-letter branded protocol, such as DBT (Dialectical Behavior Therapy), SFT (Schema Focused Therapy) or MBSR (Metacognition Based Stress Reduction)? Or is it the responsibility of the health care systems that provide treatment? Perhaps they should ensure that a psychologist’s training is regularly updated, as in most other clinical professions?

As a clinical psychologist myself, with experience from practice in France, I want to address some challenges that I have experienced and reflected upon as I have tried to develop my own way of practicing therapy.

Medical training updates are widely encouraged for psychiatrists via the counting of credits for attending certified courses or international conferences (Continuing Medical Education Points). However, when it comes to clinical psychologists, the psychiatrists’ side-kicks offering psychotherapy treatment, there is no such unified system. Psychotherapy is in essence social work, and the success depends on the relationship between the therapist and the patient. But in many countries, particularly in the English speaking world, there is a tendency to brand specific therapeutic programs, such as the commonly known cognitive behavioral therapy, CBT, or versions of it such as dialectic behavioral therapy, DBT. Being “branded” as a psychotherapist comes with the advantage of being recurrently involved in seminars, training and follow-ups on our practice. But as a therapist, you are offering more than a program, you are offering years of experience and training. It is neither practical nor possible to “label” every little piece of training that made your practice look the way it does now. Yet psychotherapists face an entire branding system, with names such as DBT (Dialectical Behavioral Therapy), TFT (Transference Focused Therapy), SFT (Schema Focused Therapy) and MIT (Metacognition and Insight Therapy). All these names give structure, labels to refer to, which help both patients and colleagues to identify what happens in the therapy. But at the same time we might be confusing everyone involved with a jargon of acronyms. Depending on the cultural context, even using the word “client” instead of “patient” can be seen as subversive. The very idea that psychotherapy could be branded may appear strange and unusual. Are we considering the values at stake? Might not branding shift focus, from values of care towards economic considerations (such as selling your brand)? On the surface, it looks reasonable and as an approach that supports a fair distribution of care.

As an author of a CBT protocol myself, using a much longer acronym, ECCCLORE, I have been forced to question the underlying dynamic of naming or branding a particular kind of psychotherapy.  Like most of the CBT protocols, the effectiveness is in the structure of the protocol. Although I wanted to protect that structure, I did not want to rule out potential changes or improvements, but to make the protocol open to practitioners’ own experiences of using it with their patients. Therefore, I always encourage my students and colleagues to integrate the protocol with their own experiences, strengths and discoveries along the way.

Why? Well, because in using a protocol to engage with people in the intimate setting that psychotherapy is, we must also examine our values as caregivers, always considering the ethical principles of non-malevolence, respect and justice. And just as you must find your way to practice any branded therapy, you must find your way to observe these ethical principles in your work.

I was not harming my patients with the ECCCLORE protocol, but I created something that requires training to apply. Otherwise, like any mechanically applied protocol, it could potentially harm patients. Can that risk be overcome by adding another branded sub-protocol? There are already names all over the place in the CBT world. We all use “branded skills” such as Beck’s Columns and Padesky’s Polygram, and they are free to use, but they are just names for very commonly used tools, which we must again learn to use in practice.

When you dive into the specificity of “certified programs,” things start to become even more complicated. If I did not brand my project, anyone could use (or abuse) the ECCCLORE brand. For example, in France one needs to declare intellectual property in order to protect the project or research results from being stolen (as the research outcome is not considered the intellectual property of the researcher, as it is in Sweden). This means that anyone can use the name, even if it is unrelated to the CBT framework. But by acknowledging the creator’s intellectual property, it is possible for me to brand my own research protocol and evidence-based program, preventing misuse of the methods. But is it helping the replication and dissemination of the protocol? And if my ultimate goal is to offer the protocol to help as many patients as possible, is branding it the best solution?

I sensed an affinity between my own reflections and recent research that questioned the ethical guidelines for social justice work in psychology and outlined the need for social justice ethics. When I thought about branded CBT programs, I recognized ethical risks everywhere. If you pay a lot of money to be trained in Program A, you expect to be recognized as a Program A practitioner, and you expect to benefit from the specific expertise that you earned. Is it fair then to offer such services at premium prices? Or to refuse to have Program A training delivered to most of the clinical psychologists? Does it make the program more affordable and accessible to the patients in need of it? Is a society fair where most of the latest advances are not available to everyone, but only in private practice? Well, there are of course economic considerations, but on the clinical level it is not easy to sort out the pros and cons of these “acronymized” psychotherapies.

As a treatment developer, I do recognize that having a name to identify the program really helps. The social component of psychotherapy is known to be an important effectiveness factor. This was the case also for me. Avoiding any stigmatizing name of my therapeutic group, such as “Borderline Group,” was a move toward justice, respect and non-malevolence. I decided to create the acronym together with the first patient group, which helped create motivation and reflected the collaborative process. Because in therapy, it is the patients who have the most at stake. Along the way, I also had a chance to be trained in a manual-based psychotherapy, and I saw the advantages, as a clinician, to have a tribe supporting me as I entered their group. Branded evidence-based psychotherapies are organizing trainings and conferences, which offer many resources for their practitioners. They build up more and more specific results around subgroups of patients, and take responsibility for the full functioning of their practitioners.

Branded psychotherapies are probably here to stay, but I wanted to highlight some practical and ethical challenges that I have experienced and reflected upon as a treatment developer. Let me conclude with one final consideration about the future. In recent research on the effectiveness of personality disorder psychotherapy, the main factors were found to be the therapeutic attitude (active and collaborative) and the clarity of the protocol (the underlying theories). Future research may further investigate whether the branding of psychotherapies, which can be confusing, may also contribute to these factors.

Sylvia Martin

Sylvia Martin, Clinical Psychologist and Senior Researcher at the Centre for Research Ethics & Bioethics (CRB)

Sylvia Martin. (2022) Le programme ECCCLORE: Une nouvelle approche du trouble borderline. Deboeck Supérior.

In dialogue with patients

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