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

Author: Pär Segerdahl (Page 1 of 43)

Need for evidence on nursing in childhood cancer care?

Caring for children with cancer involves more than just medical cancer treatment. Nurses are responsible for a wide range of nursing tasks. They discuss the disease and treatment with children and parents, monitor children’s nutritional needs, give pain treatment, insert catheters, care for wounds and much more.

These nursing tasks are associated with varying degrees of uncertainty about how they are best performed and there may therefore be a need for more evidence. In a recent study, health care professionals at six childhood cancer centers in Sweden were asked about knowledge gaps that they perceived created uncertainty in their work. What questions does future nursing research need to investigate more closely?

The study identified approximately fifteen aspects of nursing that the staff considered required research efforts. They expressed uncertainty about aspects such as how best to talk to adolescents about fertility and sexuality, the benefits and disadvantages of tube feeding, how best to support children’s and families’ participation in care, or how pain assessment methods can be integrated more efficiently to ensure good pain relief. They also expressed uncertainty about children’s and adolescents’ body image and how it is affected by treatment effects on appearance, and uncertainty about the best diet in connection with cancer treatment.

Identifying areas where more research is needed is important. However, in the discussion of the results, the authors emphasize that evidence for many of the areas identified already exists. Of course, even more evidence may be needed. But it may also be that the research has not been effectively disseminated to nursing practice. The authors therefore emphasize the need to actually implement evidence in the form of guidelines and treatment protocols. They also emphasize that one way to increase awareness of existing evidence is to increase nurses’ involvement in research.

Read the article here: Research gaps in nursing status and interventions – A deductive qualitative analysis of healthcare professionals’ perspectives from Swedish childhood cancer care.

Pär Segerdahl

Written by…

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

Cecilia Bartholdson, Anna Pilström, Pernilla Pergert, Johanna Granhagen Jungner, Maria Olsson, “Research gaps in nursing status and interventions – A deductive qualitative analysis of healthcare professionals’ perspectives from Swedish childhood cancer care,” European Journal of Oncology Nursing, Volume 78, 2025, https://doi.org/10.1016/j.ejon.2025.102972

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When we ourselves contribute to the problem: a retrospective view of resignation syndrome

Humans are good at solving problems. But solutions also cause unforeseen problems. The latter problems can be more difficult to understand because they are so close to us: we do not see how we ourselves create them through our solutions. A person who feels that no one smiles at her may be unaware of how she herself never smiles but observes her surroundings with a demonstratively stern look, as if that could help: “Why should I smile when my so-called fellow human beings never do? They are the problem, not me!” In retrospect, we can more easily see and admit how we ourselves contributed to the problem by our way of solving it. But try to overview similar patterns while being part of them and actively considering everything from your perspective!

So-called resignation syndrome in refugee children, which affected more than 1,000 children during more than two decades, is now history. In a new article, Karl Sallin looks back at the rise and fall of the illness, which manifested itself as loss of physical and mental functions. The children who were affected could neither move nor communicate, but were bedridden and needed tube feeding. The prevailing problem analysis was that the condition was caused by trauma and stress, not least the stress of living under the threat of not getting a residency permit, and that the children’s defeatism took on these physical and mental expressions. In the search for an effective treatment, it was therefore assumed that the children needed security in order to recover: security in the form of closeness to the family and a residence permit. Therefore, the care of the children was handed over to the parents and residence permits began to be used as part of the treatment. The syndrome, which showed no signs of subsiding but, on the contrary, continued to engage and be discussed in the media, however, exhibited a strange pattern. The illness only affected refugee children in Sweden, and moreover children mainly from states in the former Yugoslavia and states in the former Soviet Union. If the problem analysis was correct, then refugee children in countries other than Sweden should also exhibit the symptoms, since they have experienced similar forms of trauma and stress. Nor should refugee children from states in the former Yugoslavia and Soviet Union be overrepresented.

Karl Sallin describes how the treatment of resignation syndrome changed over time. The change was partly related to the syndrome’s nation-bound pattern, partly to the discovery of some cases of child abuse and simulation. Although trauma and stress contributed to the symptoms, it became clearer over time that the syndrome was probably also related to other and more decisive factors. The asylum process was separated from treatment and a child protection focus meant that the child was often separated from the family. This proved effective, and what Karl Sallin calls a culture-bound endemic soon ebbed away.

In retrospect, the pattern of the syndrome can be more easily seen. It becomes clearer how a link between symptoms and residence permit, as well as colorful media stories about the disease, could not only encourage simulation, but also create strong disease expectations in refugee children and their families that actually caused life-threatening conditions. Think of the placebo and nocebo effects, where deep expectations cause recovery or disease. Karl Sallin therefore argues that even if cases of simulation were discovered, refugee children really became life-threateningly ill because of the way resignation syndrome was diagnosed, debated and treated in Sweden. Human expectations are not to be trifled with, but both the treatment of the syndrome and the media stories about it seem to have done so. Is the general pattern familiar?

Karl Sallin suggests that resignation syndrome requires a constructivist perspective on illness in order to be understandable, and that the label, diagnosis and treatment probably caused harm. To avoid similar events in the future, greater awareness is needed of how our ways of labeling, diagnosing, treating and narrating illness can also contribute to illness, he writes. Given medicine’s duty not to harm, such awareness is essential.

The article concludes with the suggestion that it would be reasonable to withdraw the resignation syndrome diagnosis now that it is no longer serves its purposes. Read the article here: Looking back at resignation syndrome: the rise and fall of a culture-bound endemic.

Pär Segerdahl

Written by…

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

Sallin, K. Looking back at resignation syndrome: the rise and fall of a culture-bound endemic. Philosophy Ethics and Humanities in Medicine 20, 41 (2025). https://doi.org/10.1186/s13010-025-00209-8

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We challenge habits of thought

Can we change by seeing our mistakes?

Perhaps I should start by mentioning that I am not an expert on Confucius but find him inspiring. This post just expresses that inspiration, nothing else.

Given how conflicts are constantly recreated, everywhere and in all areas, one might wonder if we can ever change by seeing our mistakes. We have mastered so much through new knowledge in various fields. Yet we are constantly drawn into new conflicts, despite our knowledge of the pattern. Historians have always followed intrigues, wars and conflicts particularly closely. We know everything we need to know.

Perhaps we can still sense how conflicts re-emerge despite knowledge of the pattern. For is not knowledge part of the pattern? Consider how we are engaged by documentaries about historical conflicts: how we are drawn into the oppositions they inform us about. Consider how skilled strategists have always found the study of conflicts particularly useful in their warfare against strategically identified enemies. And now we want to use this knowledge strategically in the fight against all conflicts! Of course, it is important to create a peaceful world on the basis of evidence, but perhaps the well-informed effort prevents us from seeing the pattern re-emerging? We dream of an enlightened struggle against all conflicts and immediately end up at war with ourselves. How are we ever going to learn from our mistakes if we do not see them when we actually make them? We are always too late. We never manage to catch ourselves in the act.

Perhaps I am repeating the pattern by writing another post about it?

Already 2,500 years ago, the Chinese thinker Confucius asked himself this question about how we can learn from our own mistakes (and from brilliant examples). He did this in a time that was possibly even more marked by conflict than our own. Surrounded by warring states, he suggested that true moral responsibility for ourselves requires that we humans think for ourselves; that we examine ourselves. One might assume that Confucius saw self-examination as an elementary human activity. He probably did, but at the same time he saw self-examination as a rarity among humans:

The Master said, “I suppose I should give up hope. I have yet to meet the man who, on seeing his own errors, is able to take himself to task inwardly.”

It is difficult for us humans to hold ourselves accountable; difficult to seek the root of our mistakes in ourselves. And surprisingly easy to find faults in others and hold them accountable! The will to fight all conflicts is an example. As if we could monitor everything around us but not see ourselves, we repeat the pattern we want to correct. How can we ever take moral responsibility for ourselves if we helplessly repeat what we want to free ourselves from?

If self-examination is to have the great importance that Confucius attributed to it, then “thinking for oneself” can hardly be a human activity along with others. A human activity repeats its pattern: to take oneself to task as a human being is to come into conflict with oneself. We would once again need to pause and examine ourselves to make room for real change. Self-examination must therefore transcend how we live and function as ordinary humans. To “think for ourselves” must be extraordinary, perhaps even more than human? At least, self-examination does not characterize how we usually think, speak and act in our interpersonal affairs.

Something completely different therefore becomes important for Confucius, beyond the human: Heaven. In my opinion, Confucius’ Heaven should not be interpreted as a higher religious authority that superiors can refer to in order to assert their interests against subordinates. That would only be human. Heaven has no interests or opinions to guard: an image of openness. Unlike humans, Heaven has no pattern (although clouds may obscure this fact). It is only great, clear, brilliant and boundless. Although Confucius sometimes speaks of the “Decree of Heaven,” his Heaven is not eloquent and does not dictate messages. Perhaps it is its greatness that is commanding, its clarity that allows room for change? When his disciples want a specific message from the master that they can convey to others, the conversation can take this turn:

The Master said, “I am thinking of giving up speech.” Tzu-kung said, “If you did not speak, what would there be for us, your disciples, to transmit?” The Master said, “What does Heaven ever say? Yet there are the four seasons going round and there are the hundred things coming into being. What does Heaven ever say?”

Thinking for oneself does not produce any teachings that masters convey to disciples, and disciples to humanity. Self-examination occurs within each of us and is not an interpersonal affair. Not even reason is directed against all unreasonable people to establish the reasonable pattern. Thinking for ourselves is as modest as it is simple, because when we do not seek support for positions (not even from omniscient AI), we no longer repeat our patterns and can suddenly see them. We become clear as the sky, open to real change. This is an unexpected possibility that cannot be depicted in documentaries without recreating our tendencies: an inner revolution comparable to how the sky suddenly opens up. I am reminded of a remark that the philosopher Ludwig Wittgenstein wrote in his notebook:

That man will be revolutionary who can revolutionize himself.

Of course, we can learn from our mistakes. But hardly when we hold each other accountable by keeping ourselves informed about human mistakes; rather when we, for once, think for ourselves. To speak is to repeat oneself; in silence, change awaits.

Pär Segerdahl

Written by…

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

Confucius, The Analects, translated by D.C. Lau, Penguin Books, 1979.

Wittgenstein, Ludwig. Culture and Value, translated by Peter Winch. Chicago: The University of Chicago Press, 1980.

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Thinking about thinking

When nurses become researchers: ethical challenges in doctoral supervision

Nurses who choose to pursue a doctorate and conduct research in the nursing and health sciences contribute greatly to the development of healthcare: the dissertation projects are often collaborations with healthcare. However, doctoral education in the field contains challenges for both doctoral students and their supervisors. One challenge is that many combine research with part-time work in healthcare. It is difficult to combine two such important and demanding professions, especially if both the doctoral student and the supervisor do so.

To get a clearer picture of the challenges and possible strategies for dealing with them, a systematic literature review of English-language studies of challenges and strategies in nursing doctoral supervision was conducted. The literature review is authored by, among others, Tove Godskesen and Stefan Eriksson, and hopefully it can contribute to improved supervision of nurses who choose to become researchers.

One challenge described in the literature has to do with the transition from a professional life with clear tasks to research that is conducted to a greater extent independently. Doctoral students may be concerned about unclear and difficult-to-reach supervision; at the same time, supervisors may think that doctoral students have their own responsibility to seek support and feedback from them when necessary. Another challenge has already been indicated: supervisors working part-time in healthcare may have difficulty maintaining a consistent meeting schedule with their doctoral students to provide feedback. In addition, difficulties were reported when the proportion of doctoral students is high in relation to the number of potential supervisors. Another challenge has to do with the fact that doctoral students are not always prepared for academic tasks such as writing scientific texts and applying for grants. The doctoral students’ first study can therefore be particularly time-consuming to write and supervise.

Strategies for dealing with these challenges include, among other things, clear agreements from the beginning about what the doctoral student and supervisor can expect from each other. Perhaps in the form of written agreements and checklists. Education of doctoral students for various academic tasks and roles was also mentioned, such as training in grant writing, academic publishing and research methodology. However, supervisors also need education and training to function well in their roles towards their doctoral students. Another strategy reported in the literature was mentoring to initiate doctoral students into an academic environment.

In their discussion, the authors suggest, among other things, that the principles of bioethics (autonomy, beneficence, non-maleficence, justice) can be used as a framework for dealing with ethical challenges when supervising doctoral students in the nursing and health sciences. Ethically well-thought-out supervision is a foundation for successful doctoral education in the field, they write in their conclusion. Read the article here: Ethical Challenges and Strategies in Nursing Doctoral Supervision: A Systematic Mixed-Method Review.

The research seminar does not seem to be mentioned in the literature, I personally note. Regularly participating in a research seminar is an important part of doctoral education and effectively initiates the doctoral student into an academic culture. The seminar enables, not least, feedback from other doctoral students and from senior researchers other than the supervisors. The fact that the group of doctoral students is large can actually be an advantage for the seminar. My experience is that the seminar becomes livelier with a larger proportion of doctoral students, who find it easier to make themselves heard.

Pär Segerdahl

Written by…

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

Godskesen, T., M. Grandahl, A. N. Hagen, and S. Eriksson. 2025. “Ethical Challenges and Strategies in Nursing Doctoral Supervision: A Systematic Mixed-Method Review.” Journal of Advanced Nursing 1–18. https://doi.org/10.1111/jan.70298

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Conditions for studies of medicine safety during breastfeeding

Reliable information on medicine safety during breastfeeding is lacking for many medications. In order to avoid the risk of harming the baby, mothers taking medication for various diseases may be advised by their doctor to discontinue the medication during breastfeeding (or the woman herself may choose to discontinue). Alternatively, the woman may be advised to continue the medication but refrain from breastfeeding. Both options are unfortunate. The mother needs the prescribed medication and breastfeeding has benefits for both the baby and the mother.

Why is there a lack of reliable information on medicine safety during breastfeeding? This is because breastfeeding mothers are usually excluded from clinical studies. Therefore, there is limited knowledge of the extent to which different drugs are transferred to the baby via breast milk. The lack of reliable safety information applies to both already approved and new drugs. However, since many mothers take medications while breastfeeding, it should be possible to establish lactation studies that systematically provide scientific evidence for better safety information. Which drugs can be used during breastfeeding?

A new article with Mats G. Hansson as lead author and Erica Sundell as one of the co-authors describes how, within the framework of current regulatory requirements, two breastfeeding studies have been started that can help solve the dilemma that breastfeeding mothers and their doctors often face. One study concerns a drug for diabetes, the other a drug for inflammation and rheumatic disorders. The studies are part of the European project ConcePTION, which will produce evidence on drug safety during pregnancy and breastfeeding. Breast milk samples from the mother and blood samples (plasma) from the mother and child are analyzed to measure how much of the drugs are transferred to the child during breastfeeding. The samples are stored in a biobank for future research, and the studies thus contribute to creating an infrastructure for lactation studies of medicine safety.

Recruitment of research participants and sample collection started in the spring of 2024 and will end at the turn of the year 2025/2026. The purpose of the article is to use the experiences from setting up the two studies as a template for initiating clinical lactation studies. What should be considered? What are the conditions for this type of research? The article concisely describes relevant conditions and procedures for informed consent, sampling, transport and storage of samples, and laboratory analysis. The article also discusses the different conditions for studies of already approved drugs and for new drugs.

The article is important reading for researchers and others who can in one way or another contribute to initiating studies for better information on medicine safety during breastfeeding. Because it so concisely describes the conditions for new studies, the article is also interesting as a concrete example of how problems can be solved by starting new research.

Read the article here: Setting up mother–infant pair lactation studies with biobanking for research according to regulatory requirements.

Pär Segerdahl

Written by…

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

Hansson M, Björkgren I, Svedenkrans J, et al. Setting up mother–infant pair lactation studies with biobanking for research according to regulatory requirements. British Journal of Clinical Pharmacology. 2025; 1-6. https://doi.org/10.1002/bcp.70201

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Part of international collaborations

Paediatric nurses’ experiences of not being able to provide the best possible care

Inadequate staffing, competing tasks and unexpected events can sometimes make it difficult to provide patients with the best possible care. This can be particularly stressful when caring for children with severe diseases. For a nurse, experiencing situations where you cannot provide children with cancer with the best possible care (which means more than just the best possible medical treatment) is an important cause of stress.

To provide a basis for better support for paediatric nurses, a research group interviewed 25 nurses at three Swedish paediatric oncology units. The aim of the interview study was to understand what the nurses experienced as particularly important in situations where they felt they had not been able to provide the best possible care, and how they handled the challenges.

The most important concern for the nurses was to uphold the children’s best interests. One thing that could make this difficult was lack of time, but also disagreements about the child’s best interests could interfere with how the nurses wanted to care for the children. The researchers analyze the paediatric nurses’ handling of challenging situations as a juggling of compassion and competing demands. How do you handle a situation where someone is crying and needs comfort, while a chemotherapy machine somewhere in the ward is beeping and no colleagues are available? What do you do when the most urgent thing is not perceived as the most important?

In the analysis of how the nurses juggled compassion and competing demands, the researchers identified five strategies. One strategy was to prioritize: for example, forego less urgent tasks, such as providing emotional support. Another strategy was to shift up a gear: multitasking, working faster, skipping lunch. A third strategy was to settle for good enough: when you can’t provide the best possible care, you strive to at least provide good enough care. A fourth strategy was acquiescing in situations with different perceptions of the patient’s best interests: for example, continuing to treat a patient because the physician has decided so, even though one believes that prolonged treatment is futile. Regarding this strategy, the nurses requested better dialogue with physicians about difficult patient cases, in order to understand the decisions and prevent acquiescing. The fifth and final strategy was pulling together: to support each other and work as a team with a common goal. Often, there was no need to ask for support; colleagues could spontaneously show solidarity by, for example, staying after their work shifts to help.

In their conclusion, the authors write that adequate staffing, collegial support and good interprofessional communication can help nurses deal with challenges in the care of children with cancer. Read the article here: Juggling Compassion and Competing Demands: A Grounded Theory Study of Pediatric Nurses’ Experiences.

While reading, it may be worth keeping in mind that the study focuses only on situations where it was felt that the best possible care could not be given. The authors point out that the interviews overflowed with descriptions of excellent care and good communication, as well as how rewarding and joyful the work of a paediatric nurse can be.

Pär Segerdahl

Written by…

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

Ventovaara P, Af Sandeberg M, Blomgren K, Pergert P. Juggling Compassion and Competing Demands: A Grounded Theory Study of Pediatric Nurses’ Experiences. Journal of Pediatric Hematology/Oncology Nursing. 2025;42(3):76-84. doi:10.1177/27527530251342164

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Ethics needs empirical input

Interprofessional collaboration in hospital care of patients who self-harm

Patients who are treated in hospital for self-harm can sometimes arouse strong emotions in the staff. At the same time, the patients may be dissatisfied with their care, which sometimes involves restrictions and safety measures to prevent self-harm. In addition to such tensions between patients and staff, the healthcare staff is divided into different professions with their own roles and responsibilities. These professional groups may have different perspectives and thus conflicting opinions about what care individual patients should receive. In order for patients to receive good and cohesive care, good interprofessional collaboration is therefore required between, for example, nurses and psychiatrists.

A Swedish interview study examined how nurses and psychiatrists think about their responsibility and autonomy in relation to each other in different situations on the ward. In general, they considered themselves autonomous, they could take their professional responsibility without being influenced by other colleagues. Both groups agreed that psychiatrists had the ultimate responsibility for the patients’ care, and it emerged that the nurses saw themselves as the patients’ advocates. If decisions made by the psychiatrist went against the patient’s wishes, they saw it as their task to explain the patient’s views, even if they did not agree with them.

However, sometimes the scope for action could be affected by decisions made by colleagues. For example, one could experience that the scope for taking responsibility for a patient was reduced if colleagues had already isolated the patient. In other cases, one could experience that colleagues’ decisions increased one’s responsibility, for example if decisions based on ignorance about a patient risked leading to new self-harm that the nurses had to deal with.

An important theme in the interviews was how one could sometimes renunciate some of one’s professional autonomy in order to achieve interprofessional collaboration. The interviewees agreed that one ultimately had to stand united behind decisions and set aside one’s own agendas and opinions. Consensus was considered essential and was sought even if it meant reducing one’s own autonomy and power. Consensus was achieved through discussions in the team where participants humbly respected each other’s professional roles, knowledge and experiences.

In their conclusion, the authors emphasize that the study shows how nurses and psychiatrists are prepared to set aside hierarchies and their own autonomy in order to achieve collaboration and shared responsibility in the care of patients with self-harm. Since this has not been visible in previous studies, they suggest that attitudes and skills towards interprofessional collaboration may have improved. As this is essential for good cohesive care of patients, it is important to continue to support such attitudes and skills.

If you want to see all the results from the interview study and read the authors’ discussion about responsibility and autonomy in interprofessional collaboration, you can find the article here: Navigating consensus, interprofessional collaboration between nurses and psychiatrists in hospital care for patients with deliberate self-harm.

Pär Segerdahl

Written by…

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

Löfström, E. et al. (2025) ‘Navigating consensus, interprofessional collaboration between nurses and psychiatrists in hospital care for patients with deliberate self-harm’, Journal of Interprofessional Care, 39(3), pp. 479–486. doi: 10.1080/13561820.2025.2482691

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What is philosophical health and can it be mapped?

Philosophers such as Socrates and philosophical schools such as Stoicism have had a certain influence on psychology and psychotherapy, and thus also on human health. But if philosophy can support human health via psychology, can it not support health more directly, on its own? A growing trend today is to offer philosophical conversations as a form of philosophical practice that can support human health in existential dimensions. The trend to offer philosophical conversations is linked to a concept of health that is not only about physical and mental health, and which does not understand health as merely the absence of disease: philosophical health.

What does it mean to talk about philosophical health? Given all the health ideals that already affect self-esteem, should we now also be influenced by philosophical health ideals that make our lives feel hopelessly ill-conceived and pointless? No, on the contrary, the stress that human ideals and norms create can be an important topic to philosophize about, in peace and quiet. Instead of being burdened by more ideas about how we should live, instead of giving the appearance of fulfilling the ideals, we can freely examine this underlying stress: the daily feeling of being compelled to live the way we imagine we should. No wonder philosophical practice is a growing trend. Finally, we get time to think openly about what other trends usually make us hide: ourselves, when we do not identify with the trends, the norms and the ideals.

Philosophizing sounds heavy and demanding but can actually be the exact opposite. I have written an essay about how philosophical self-examination, in its best moments, can lighten the mind by unexpectedly illuminating our many tacit demands and expectations. Unfortunately, the essay is not published with open access, but here is the link: The Wisdom of Intellectual Asceticism.

A colleague at CRB, Luis de Miranda, has long worked with philosophical health both as a practitioner and researcher. He emphasizes that human health also includes existential dimensions such as harmony, meaning and purpose in life, and that in order to support wellbeing in these intimately universal dimensions, people also need opportunities to reflect on life. In a new article (written with six co-authors), he develops the concept in the form of a research tool that could map philosophical health: a philosophical health compass. The idea is that the compass will make it possible to study philosophical health in more quantitative ways, for example making comparisons between populations and assessing the effects of different forms of philosophical practice.

The compass consists of a questionnaire. Respondents are asked to consider statements about 6 existential dimensions of life, revolving around the body, the self, belonging, possibilities in life, purpose, and finally, their own philosophical reflection. Each dimension is explored through 8 statements. Respondents indicate on a 5-point scale how well the total of 48 statements apply to them.

I cannot judge how well the 48 statements are chosen, or how easy it is for people to take a position on them, but the statements are more concrete than you might think and it will be exciting to see what happens when the compass is put to the test. Will it be able to measure the wisdom of the crowd, can philosophically relevant differences and changes be mapped? If you want to take a closer look at the philosophical health compass, you can find the article here: The philosophical health compass: A new and comprehensive assessment tool for researching existential dimensions of wellbeing.

Luis de Miranda warns that the compass may risk not only supporting philosophical health, but also undermining it if the compass is interpreted as an ideal that determines the qualities that distinguish good philosophical health. Using the compass wisely requires great openness and sensitivity, he emphasizes. Yes, hopefully the compass will raise many philosophical questions about what philosophical health is, and how it can be studied. For what is the great openness and responsiveness that Luis de Miranda emphasizes, if not philosophical inquisitiveness itself?

Pär Segerdahl

Written by…

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

Pär Segerdahl; The Wisdom of Intellectual Asceticism. Common Knowledge 1 January 2025; 31 (1): 74–88. doi: https://doi.org/10.1215/0961754X-11580693

de Miranda, L., Ingvolstad Malmgren, C., Carroll, J. E., Gould, C. S., King, R., Funke, C., & Arslan, S. (2025). The philosophical health compass: A new and comprehensive assessment tool for researching existential dimensions of wellbeing. Methodological Innovations, 0(0). https://doi.org/10.1177/20597991251352420

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Thinking about thinking

What does precision medicine and AI mean for the relationship between doctor and patient?

In a sense, all care strives to be tailored to the individual patient. But the technical possibilities to obtain large amounts of biological data from individuals have increased so significantly that today one is talking about a paradigm shift and a new way of working with disease: precision medicine. Instead of giving all patients with a certain type of cancer the same standard treatment, for example, it is possible to map unique genetic changes in individual patients and determine which of several alternative treatments is likely to work best on the individual patient’s tumor. Other types of individual biological data can also be produced to identify the right treatment for the patient and avoid unnecessary side effects.

Of course, AI will play an increasingly important role in precision medicine. It can help identify relevant patterns in the large amount of biological data and provide support for precision medicine decisions about the treatment of individual patients. But what can all this mean for the relationship between doctor and patient?

The question is examined in a research article in BMC Medical Informatics and Decision Making, with Mirko Ancillotti as main author. The researchers interviewed ten physicians from six European countries. All physicians worked with patients with colorectal cancer. In the interviews, the physicians highlighted, among other things, that although it is possible to compile large amounts of individual biological data, it is still difficult to tailor treatments for colorectal cancer because there are only a few therapies available. The physicians also discussed the difficulties of distinguishing between experimental and conventional treatments when testing new ways to treat colorectal cancer in precision medicine.

Furthermore, the physicians generally viewed AI as a valuable future partner in the care of patients with colorectal cancer. AI can compile large amounts of data from different sources and provide new insights, make actionable recommendations and support less experienced physicians, they said in the interviews. At the same time, issues of trust were evident in the interviews. For example, the physicians wondered how they can best rely on AI results when they do not know how the AI ​​system arrived at them. They also discussed responsibility. Most said that even when AI is used, the physicians and the team are responsible for the care decisions. However, they said that sometimes responsibility can be shared with AI developers and with those who decide on the use of AI in healthcare.

Finally, the physicians described challenges in communicating with patients. How do you explain the difference between experimental and conventional treatment in precision medicine? How do you explain how AI works and how it helps to tailor the patient’s treatment? How do you avoid hype and overconfidence in “new” treatments and how do you explain that precision medicine can also mean that that a patient is not offered a certain treatment?

If you would like to see more results and the authors’ discussion, you can find the article here: Exploring doctors’ perspectives on precision medicine and AI in colorectal cancer: opportunities and challenges for the doctor-patient relationship.

Some of the study’s conclusions are that good integration of AI and precision medicine requires clearer regulation and ethical guidelines, and that physicians need support to meet the challenge of explaining how AI is used to tailor patient treatment. It is also important that AI remains an auxiliary tool and not an independent decision-maker. Otherwise, patients’ trust can be eroded, as can physicians’ autonomy, the authors argue.

Pär Segerdahl

Written by…

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

Ancillotti, M., Grauman, Å., Veldwijk, J. et al. Exploring doctors’ perspectives on precision medicine and AI in colorectal cancer: opportunities and challenges for the doctor-patient relationship. BMC Med Inform Decis Mak 25, 283 (2025). https://doi.org/10.1186/s12911-025-03134-0

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We have a clinical perspective

Mind the gap between ethics in principle and ethics in practice

When ethical dilemmas are discussed using case descriptions or vignettes, we tend to imagine the cases as taken from reality. Of course, the vignettes are usually invented and the descriptions adapted to illustrate ethical principles, but when we discuss the cases, we tend to have the attitude that they are real. Or at least real possibilities: “What should we do if we encounter a case like this?”

Discussing ethical cases is an extremely good exercise in ethical reasoning and an important part of the education and training of healthcare professionals. But sometimes we may also need to keep in mind that these discussions are adapted exercises in the ethics gym, so to speak. Reality rarely delivers separate dilemmas that can be handled one by one. Often, life is rather a continuous flow of more or less clearly experienced challenges that change faster than we can describe them. We cannot always say what the problem situation actually looks like. Therefore, it may sometimes be wise not to decide or act immediately, but to wait for the situation to take a different and perhaps clearer form. And then the ethical problem may in practice have been partially resolved, or become more manageable, or become obsolete.

Does that sound irresponsible? Judging by two texts that I want to recommend today, responsible healthcare professionals may, on the contrary, experience a friction between ethics in principle and ethics in practice, and that it would be unethical not to take this seriously. The first text is an essay by Joar Björk (who is both an ethicist and a palliative care physician). In the journal Palliative Care and Social Practice, he discusses a fictional patient case. A man with disseminated prostate cancer is cared for by a palliative care team. In the vignette, the man has previously expressed that he wants complete knowledge of his situation and what his death might look like. But when the team has time to talk to him, he suddenly changes his mind and says that he does not want to know anything, and that the issue should not be raised again. How to act now?

According to Joar Björk, the principle-based ethical standard recommendation here would probably be the following. Respect for the patient’s autonomy requires that the team not try to carry out the conversation. Only if there is good reason to believe that a conversation can have great medical benefit can one consider trying to inform the patient in some way.

Note that the principle-based recommendation treats the situation that has arisen as a separate case: as a ready-made vignette that cannot be changed. But in practice, palliative teams care for their patients continuously for a long time: so much is constantly changing. Of course, they are aware that they cannot impose information on patients who state that they do not want it, as it violates the principle of autonomy. But in practice, the unexpected situation is an unclear ethical challenge for the care team. What really happened, why did he change his mind? Does the man suddenly refuse to accept his situation and the proximity of death? Maybe the team should cautiously try to talk more to him rather than less? How can the team plan the man’s care – maybe soon a hospital bed will be needed in his home – if they are not allowed to talk to him about his situation? As palliative care teams develop good listening and communication skills, the situation may very well soon look different. Everything changes!

Joar Björk’s reflections give the reader an idea of ​​how ethical challenges in practice take on different forms than in the vignettes that are so important in ethics teaching and training. How does he deal with the gap between ethics in principle and ethics in practice? As I understand him, Joar Björk does not advocate any definite view on how to proceed. But he is trying to formulate what he calls a palliative care ethos, which could provide better ethical guidance in cases such as the one just described. Several authors working in palliative care have attempted to formulate aspects of such a care ethos. In his essay, Joar Björk summarizes their efforts in 11 points. What previously sounded passive and irresponsible – to wait and see – appears in Joar Björk’s list in the form of words of wisdom such as “Everything changes” and “Adaptation and improvisation.”

Can healthcare professionals then find better ethical guidance in such practical attitudes than in well-established bioethical principles? Joar Björk tentatively discusses how the 11 points taken together could provide guidance that is more sensitive to the practical contexts of palliative care. I myself wonder, however – but I do not know – whether it would not be wise to allow the gap between ethics in principle and ethics in practice to be as wide as it is. The 11 points probably have their origin in an ethical care practice that already functions as the points describe it. The practice works that way without healthcare professionals using the points as some kind of soft guidance. Joar Björk thus describes a palliative care ethics in practice; a description that can help us think more clearly about the differences between the two forms of ethics. Reflecting on the 11 points can, for example, make healthcare professionals more aware of the specifics of their practice, so that they do not wrongly blame themselves if they do not always relate to situations that arise as if they were separate cases that illustrate ethical principles.

Perhaps it is impudent of me to suggest this possibility in a blog post that recommends reading, but Joar Björk’s reflections are so thought-provoking that I cannot help it. Read his essay here: Ethical reflection: The palliative care ethos and patients who refuse information.

You will certainly find Joar Björk’s reflections interesting. Therefore, I would like to mention a new book that also reflects on the gap between ethics in principle and ethics in practice. The book is written by Stephen Scher and Kaisa Kozlowska and is published with open access. You can find it here: Revitalizing Health Care Ethics. The Clinician’s Voice.

So, I think it is difficult to see clearly the difference between ethics in principle and ethics in practice. We tend to transfer characteristics from one to the other, and become dissatisfied when it does not work. The book by Scher and Kozlowska therefore uses the warning “Mind the gap” to draw attention to the difference. If we mind the gap between the platform and the train – if we do not imagine the train as an overly mobile platform, and the platform as an overly stationary train – then perhaps the two forms of ethics can accept and find better support in each other. More often than we think, we are dissatisfied for the simple reason that we fail to keep different things apart.

Pär Segerdahl

Written by…

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

Björk J. Ethical reflection: The palliative care ethos and patients who refuse information. Palliative Care and Social Practice. 2025;19. doi:10.1177/26323524251355287

Stephen Scher, Kasia Kozlowska. 2025. Revitalizing Health Care Ethics. The Clinician’s Voice. Palgrave Macmillan Cham.

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