The Ethics Blog

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

Category: In the research debate (Page 1 of 35)

What do MS patients consider to be the most important features of treatment?

Nervous Tissue: Spinal Cord Motor Neuron. Photo by Bioscience Image Library by Fayette Reynolds.
17 June, 2025 / / 0 Comments

Multiple sclerosis (MS) is a chronic inflammatory disease that affects the nerves of the brain and spinal cord. Symptoms can vary between individuals and the progression of the disease is difficult to predict. Medications can slow the progression of the disease and relieve symptoms, but they do not cure the disease. Symptoms tend to come and go and need to be monitored so that the patient always receives appropriate treatment.

Because MS is a lifelong disease with symptoms that come and go, and that change throughout life, it is important to know which features of treatment are perceived by patients as particularly important. Such knowledge can help healthcare professionals, in consultation with patients, to better tailor treatment to the individual’s wishes and needs. Patient-centred care is probably particularly important for lifelong diseases such as MS, with unpredictable progression and changing symptoms.

So how can we know which features of treatment are considered most important by patients? Preference studies can be conducted. The approaches in such studies vary. Patients can be interviewed or they can complete surveys. Surveys can ask questions in different ways, for example, the task may be to rank alternatives. Sometimes preference studies resemble experiments in which participants are presented with a series of choice situations that are systematically varied.

A Swedish-Italian collaboration investigated what patients perceive as important features of the treatment by giving them a ranking task. MS patients at an Italian university hospital were asked to rank alternatives for five different features of the treatment, including treatment effect and intervention method. The treatment effect that was ranked highest was preserved cognitive function, and the intervention method that was valued highest was disease-modifying drugs. The patients were also asked to justify their answers.

The research team then evaluated the results of the ranking task. The options that the patients ranked highest were now identified as important features of the treatment. Here is the final list of important features of the treatment:

Physical activity

Cognitive training

Disease-modifying drugs

Emotional support

Treatment effects

Each feature has 3–4 alternatives: different types of physical activity, different types of cognitive training, and so on. This ranking study is a preliminary study for a future, more experimental-like preference study that will be based on the features in the list. The advantage of such a step-by-step work process is that you can ensure that you ask the right questions and include the relevant features when designing the experimental study.

The final results therefore remain to be seen, but the above features can be considered an important step along the way. You can read the article here: What matters to patients with multiple sclerosis? Identifying patient-relevant attributes using a ranking exercise with open-ended answers from an online survey in Italy.

Pär Segerdahl

Written by…

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

Bywall KS, Kihlbom U, Johansson JV, et al. What matters to patients with multiple sclerosis? Identifying patient-relevant attributes using a ranking exercise with open-ended answers from an online survey in Italy. BMJ Open 2025;15:e095552. doi: 10.1136/bmjopen-2024-095552

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Exploring preferences

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Are you a blissfully unaware author of an article you never wrote?

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3 June, 2025 / / 3 Comments

Every day, researchers receive a motley of offers from dubious journals to publish in them – for a fee. The fact that researchers do not accept these offers does not prevent them from one day discovering that they have become authors of an article that they never wrote.

This recently happened to four surprised colleagues of mine. Suddenly, they began to receive inquiries from other colleagues about a new article that they were supposed to have written. When they investigated the matter, they discovered that an article actually existed in published form, in their names, even though they had neither written it nor even dreamed of the study described in it. Since they had never submitted a manuscript, they were of course not in communication with the journal’s editorial staff: they received neither peer reviews nor proofs to read. Although the article they read with increasing astonishment seemed to report a study on children with cancer, a vulnerable group, the study lacked both ethical approval and funding, and the location of the study was not disclosed. When my puzzled and concerned colleagues contacted the journal about these oddities, they naturally received no response.

One may wonder how such publicist virgin births can occur. If we rule out the possibility that a deity has begun to communicate with humanity via new electronic forms of publishing, in the name of established researchers, perhaps we should focus on the question of who can profit from the miracles. Could it be a cheating researcher trying to improve their credentials by publishing a fraudulent study? Hardly, the cheater’s name is not included in the list of authors, so the publication would not be of any use in the CV. Or could it be the owners of the journal who are trying to make the journal look more legitimate by borrowing the names of established and credible researchers, so that more researchers will be tempted to accept the offers to publish in the journal – for a fee? With the help of AI, an article can easily be generated that reports research that no real researcher would even dream of. Such as a study on children with cancer without ethics approval and funding, conducted in an unknown location and published without the slightest contact with the journal.

To alert scientific journals to this new challenge, one of my colleagues chose to publish a description of the group’s experience of becoming authors of an article they never wrote. You will find the description here – the author’s name is authentic and not just a generated “probable name”: Fraudulent Research Falsely Attributed to Credible Researchers—An Emerging Challenge for Journals?

Pär Segerdahl

Written by…

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

Godskesen, T. (2025), Fraudulent Research Falsely Attributed to Credible Researchers—An Emerging Challenge for Journals? Learned Publishing, 38: e2009. https://doi.org/10.1002/leap.2009

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Overweight increases the risk of cancer – but what good does the information do?

Scale & measuring tape. Photo by Pixabay: https://www.pexels.com/photo/blue-tape-measuring-on-clear-glass-square-weighing-scale-53404/
27 May, 2025 / / 1 Comment

Authorities and researchers have a responsibility to the public to disseminate information about risks identified through research. Dissemination of information and education are also an important part of public health efforts to influence norms about lifestyle habits and support individuals in making informed choices about their health.

Research has found links between overweight and at least 13 different types of cancer, including colorectal cancer and postmenopausal breast cancer. Preventing and treating obesity could therefore lead to fewer cancer cases in the future. The European Code Against Cancer presents 12 actions individuals can take to reduce their cancer risk. These include lifestyle changes, protection from certain chemicals, participation in vaccination and screening programs, and maintaining a healthy weight.

This type of information suggests that preventive measures can be controlled and influenced by the individual. It is the individual who is expected to act. However, perceptions that individuals have control over the causes of cancer can lead to stigmatization and blaming of cancer patients, as well as the belief that the disease is self-inflicted. Such harmful effects of health information have been observed in previous campaigns aimed at raising public awareness of the link between smoking and lung cancer. Overweight and obesity are already stigmatized conditions. People with overweight and obesity face discrimination in all sectors of society, including healthcare, which can have negative physical and psychological consequences. Therefore, when informing about overweight as a cancer risk factor, it is important to consider the risk of reinforcing the widespread stigmatization of people with overweight.

In a new interview study, I and three other researchers explore how people with overweight are affected by health information about the link between overweight and cancer. Participants highlighted several ethically important factors to consider when communicating this health risk, such as the risk of stigmatization, the distribution of responsibility for treatment and prevention, and the need for empathy. Participants perceived risk information about the link between overweight and cancer as personally important. It concerns their bodies and health. However, the information was burdensome to carry. It felt tough to be singled out as high-risk for cancer. This was partly because they found it difficult to act on the information, knowing how hard it is to lose weight: “No one is overweight by choice.” The information could therefore have counterproductive consequences such as anxiety and overeating. It could also reinforce feelings of failure and increase self-hatred. Many participants reported negative experiences from healthcare encounters where they felt judged and misunderstood. Moreover, adequate support for weight loss is often lacking. The information thus becomes meaningless, they argued, and was perceived as offensive and patronizing.

The study participants contributed several suggestions for improvement. They called for information that includes the complex causes of overweight and clear guidance on how to reduce cancer risk in various ways – not just through weight loss, but also through alternative methods. They also emphasized the importance of healthcare professionals showing empathy and offering person-centred care that considers the individual’s unique situation and needs. This includes concrete and feasible advice, as well as support for patients in their efforts to improve their health.

In our article, we emphasize that health communication often lacks both ethical considerations and clear objectives (beyond the obligation to be transparent). Public health interventions should, like clinical interventions, be based on ethical considerations and principles where the positive effects of the intervention are weighed against potential negative effects (or “side effects”). Sometimes, some harm may be acceptable if the benefit is sufficiently great. But currently, the benefit of information about the link between overweight and cancer appears minimal or non-existent, making negative consequences unacceptable. Our conclusion is that such risk information for people with overweight and obesity, if it is to promote health and avoid causing harm, should be empathetic, supportive, and based on an understanding of the complex causes of overweight. By acting responsibly and compassionately, healthcare professionals and researchers can help improve health outcomes for this target group.

If you want to read our interview study, you can find it here: Perceptions of cancer risk communication in individuals with overweight or obesity – a qualitative interview study.

Want to know more?

European Coalition for People living with Obesity

Different links between overweight and cancer risk – Uppsala University

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Åsa Grauman, researcher at the Centre for Research Ethics & Bioethics.

Grauman, Å., Sundell, E., Nihlén Fahlquist, J., Hedström, M. Perceptions of cancer risk communication in individuals with overweight or obesity – a qualitative interview study. BMC Public Health 25, 1900 (2025). https://doi.org/10.1186/s12889-025-23056-w

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What influences pregnant women’s decisions about prenatal diagnosis?

Ultrasound monitor. Photo by Mart Production, Pexels.
20 May, 2025 / / 1 Comment

A large proportion of pregnant women in Sweden undergo prenatal diagnosis to assess the likelihood of chromosomal anomalies in the fetus. This initially involves a so-called CUB test, which combines ultrasound with a biochemical test. If the CUB test indicates a high probability of a chromosomal anomaly, further tests are offered. This can be a non-invasive NIPT test, which examines small parts of the fetus’s DNA that are found in a blood sample from the woman, or an invasive test which involves a slightly increased risk of miscarriage.

What influences pregnant women’s decisions about whether or not to undergo prenatal diagnosis? A study investigated the question by interviewing 24 pregnant women in an early stage of pregnancy. Most had not yet been informed by the midwife about prenatal diagnosis and their perceptions in the interviews were therefore probably not influenced by information from healthcare professionals. The study should be highly relevant to prenatal care and genetic counseling as it provides insights into what influences decision-making for pregnant women and deepens the understanding of what they perceive is at stake.

It is instructive to take part in the results and how the interviewees think about prenatal diagnosis. The pregnant women’s reasoning is based on their own experiences, perceptions and values. When they wonder about chromosomal anomalies, they do not wonder about genetics, but about what the anomalies can mean for the child and for themselves. What kind of life can the child have? And how are the conditions for one’s own professional and social life affected? Women who did not consider terminating the pregnancy in the event of a chromosomal anomaly still saw value in prenatal diagnosis, as the knowledge could make it possible to prepare for the birth of the child. Some saw the test as an opportunity to confirm the pregnancy and the health of the fetus, while some were concerned that the CUB test only indicates the probability of a chromosomal anomaly. If a woman can give birth to a completely healthy child despite the test indicating a high risk of anomaly, is it worth the anxiety that the risk assessment would create during pregnancy? Self-perceived risk also influenced the decision-making. Some stated that they would probably choose prenatal diagnosis if they were older, or if there had been a history of chromosomal anomalies in the family.

Furthermore, certain external factors influenced the women’s reasoning about prenatal diagnosis, such as the characteristics of the test. It was very clear that they preferred risk-free tests. Even women who were positive about prenatal diagnosis became hesitant if the testing procedure in question could increase the risk of miscarriage. The accuracy of the test was also important, as was the time between testing and receiving results. For women who could consider terminating their pregnancy in the event of a chromosomal anomaly, early prenatal diagnosis was important. Other people’s perceptions of prenatal diagnosis were another external factor that could influence the decision-making. Although some of the interviewees emphasized that decisions about their bodies were their own, the majority wanted the opportunity to discuss the decision about prenatal diagnosis with their partner. The interviews also revealed that the attitudes of the healthcare professionals influenced the decisions, for example whether the midwife presents prenatal diagnosis as something urgent or not. Finally, the way healthcare services are organized could also influence the decisions. The very fact that prenatal diagnosis is offered was perceived by some women as a recommendation. The fact that the CUB test is subsidized for pregnant women over a certain age meant that older women perceived it as more compelling to choose it, while younger pregnant women might not choose it even if they wanted to.

In addition to the fact that the interview study provides insights into how pregnant women think about prenatal diagnosis, the analysis of the interview material contributes to an overview of how multidimensional the decision-making is. So much is at stake, so many types of factors interact and influence the decisions. When pregnant women are informed about prenatal diagnosis, all of these factors should be taken into account in order to support the women’s decision-making. Healthcare professionals should also be aware that their attitudes and demeanor influence women’s decisions, and that decisions are influenced not only by what they say to the women but also by what they do not say, the authors conclude their article.

To see more results and read the authors’ discussion, you can find the article here: Factors influencing pregnant women’s decision to accept or decline prenatal screening and diagnosis – a qualitative study.

Pär Segerdahl

Written by…

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

Ternby, E., Axelsson, O., Ingvoldstad Malmgren, C. et al. Factors influencing pregnant women’s decision to accept or decline prenatal screening and diagnosis – a qualitative study. J Community Genet 15, 711–721 (2024). https://doi.org/10.1007/s12687-024-00746-3

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“Consentless measures” in somatic care: how do healthcare staff reason about them?

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6 May, 2025 / / 2 Comments

How do you handle a reluctant patient who may not want to take their medication or who protests against measures that are deemed to be beneficial to the patient, such as inserting a urinary catheter? Do you just give up because the patient does not consent?

Except in acute emergency situations, coercive somatic treatment is not permitted in Sweden. How do healthcare professionals ethically reflect on situations where the patient does not consent to an action that can be considered to benefit the patient and which is therefore attempted anyway? A new interview study with healthcare staff on medical wards at two Swedish hospitals examines the issue in terms of “consentless measures”: ways of getting a reluctant patient to comply with treatment, for example by persuading, coaxing, deceiving or using some form of physical power.

In the interviews, the participants had difficulty finding appropriate words to describe the measures that occurred daily on the wards. They distanced themselves from the word “coercion” and preferred to talk about persuading, coaxing and deceiving. They generally accepted the use of consentless measures. In many cases, the measures were seen as such an obvious part of daily work situations that the measures did not need to be justified, or were justified by being what was best for the patient. Staff who gave up too quickly were seen as uncommitted and unreliable. While trying to avoid coercion, one still did not want to give up measures that the patient was judged to need. More coercive-like measures were in some cases considered acceptable if milder and less coercive measures had first been tried.

Consentless measures were further described as an integral part of the work on the wards, as part of a ward culture where the overall goal is to carry out one’s tasks. Some participants appreciated the culture while others were critical, but all agreed that the ward culture tacitly condones consentless measures. Participants also said that there was a tendency to use such measures more often with older patients, who were perceived as easier to persuade than younger ones. Several participants saw this as ethically problematic. Finally, participants considered it unacceptable to use excessive physical power or to insist on treatments that are of no benefit to the patient.

In their discussion of the interview results, the authors, Joar Björk, Niklas Juth and Tove Godskesen, point out a number of possible ethical problems to be aware of. One of these has to do with the division of labor where physicians make decisions about measures that nurses must then carry out. This can create a conflict of loyalty for nurses. They work closely with patients, but at the same time they are loyal to the system and want to complete the tasks they are given, which can contribute to the acceptance of consentless measures. The ideal of “not giving up” probably needs to be further examined, as does the question of whether good nursing can sometimes hide ethical challenges under the nurse’s warmth, flexibility and communicative ability. Another issue to further examine is the tendency to use consentless measures on older patients to a greater extent than on younger patients. The authors suggest in their conclusion that a strong sense of duty to carry out care interventions and to “get the job done” may lead to healthcare staff taking patients’ autonomy and consent too lightly. Participants generally took non-consent more lightly than might be expected given established norms in medical ethics, they conclude.

You can read the article here: Ethical reflections of healthcare staff on ‘consentless measures’ in somatic care: A qualitative study.

Pär Segerdahl

Written by…

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

Björk J, Juth N, Godskesen T. Ethical reflections of healthcare staff on ‘consentless measures’ in somatic care: A qualitative study. Nursing Ethics. 2025;0(0). doi:10.1177/09697330251328649

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Can consumers contribute to more responsible antibiotic use?

29 April, 2025 / / 1 Comment

Most people are probably aware that antimicrobial resistance is one of the major threats to global health. When microorganisms develop resistance to antibiotics, more people become seriously ill from common infections and more people will die from them. It is like an arms race. By using antibiotics to defend ourselves against infections, we speed up the development of resistance. Since we need to be able to defend ourselves against infections, antibiotics must be used more responsibly so that the development of resistance is slowed down.

However, few of us are equally aware that food production also contributes significantly to the development of antimicrobial resistance. In animal husbandry around the world, large amounts of antibiotics are used to defend animals against infections. The development of resistance is accelerated to a large extent here, when the microorganisms that survive the antibiotics multiply and spread. In addition, antibiotics from animal husbandry can leek out and further accelerate the development of antimicrobial resistance in an antibiotic-contaminated environment. Greater responsibility is therefore required, not least in the food sector, for better animal husbandry with reduced antibiotic use.

Unfortunately, the actors involved do not seem to feel accountable for the accelerated development of antimicrobial resistance. There are so many actors in the food chain: policymakers in different areas, producers, retailers and consumers. When so many different actors have a common responsibility, it is easy for each actor to hold someone else responsible. A new article (with Mirko Ancillotti at CRB as one of the co-authors) discusses a possibility for how this standstill where no one feels accountable can be broken: by empowering consumers to exercise the power they actually have. They are not as passive as we think. On the contrary, through their purchasing decisions, and by communicating their choices in various ways, consumers can put pressure on other consumers as well as other actors in the food chain. They may demand more transparency and better animal husbandry that is not as dependent on antibiotics.

However, antimicrobial resistance is often discussed from a medical perspective, which makes it difficult for consumers to see how their choices in the store could affect the development of resistance. By changing this and empowering consumers to make more aware choices, they could exercise their power as consumers and influence all actors to take joint responsibility for the contribution of food production to antimicrobial resistance, the authors argue. The tendency to shift responsibility to someone else can be broken if consumers demand transparency and responsibility through their purchasing decisions. Policymakers, food producers, retailers and consumers are incentivized to work together to slow the development of antimicrobial resistance.

The article discusses the issue of accountability from a theoretical perspective that can motivate interventions and empirical studies. Read the article here: Antimicrobial resistance and the non-accountability effect on consumers’ behaviour.

Pär Segerdahl

Written by…

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

Nordvall, A-C., Ancillotti, M., Oljans, E., Nilsson, E. (2025). Antimicrobial resistance and the non-accountability effect on consumers’ behaviour. Social Responsibility Journal. DOI: 10.1108/SRJ-12-2023-0721

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Approaching future issues

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New insights into borderline personality disorder

Man in dark clothes walking alone on a hill beside the ocean. Photo: Polina Kuzovkova, from Unsplash.
1 April, 2025 / / 1 Comment

Individuals with borderline personality disorder (BPD) often suffer from strong emotions that change rapidly, from one extreme to another. They may fear abandonment and experience an inner emptiness. They may also behave impulsively and have suicidal thoughts or behaviors. BPD is often mis- or underdiagnosed and there is a tendency among clinicians to avoid the diagnosis.

Given the diagnostic complexity of BPD, it is important to establish a diagnosis. Recent therapeutic advances show that the disorder responds to treatment and that significant recovery is possible. Because mental health services prioritize major psychiatric disorders, such as psychotic disorders and mood disorders, individuals with BPD have significant unmet needs. The suicide rate for BPD is as high as 10%, mirroring that of schizophrenia, and the enduring impairments from the disorder are comparable to those of chronic mental illnesses.

Clinical decision-making regarding diagnosis can be challenging for healthcare professionals for several reasons and is surrounded by ethical challenges. Several studies have shown that stigmatization and negative attitudes regarding the diagnosis of BPD are still common. Healthcare professionals, including emergency room staff and multidisciplinary teams, have been surveyed. Results suggest that even specialized mental health professionals have more negative attitudes toward BPD patients than toward those with other diagnoses, such as depression. This is likely due to factors associated with the diagnosis itself, but it is also probably related to clinicians’ perceptions of BPD symptoms and their previous treatment experiences.

Stigmatization is also reinforced by research. Derogatory terms and attitudes regarding BPD are pervasive in academic work on the disorder. A particularly common example is the attribution of negative intentions to individuals with BPD, such as wearing provocative clothing to attract attention or seeking attention by choosing, for example, artistic careers. Yet, we are not aware of any empirical documentation suggesting that BPD is associated with clothing or with specific intentions regarding career choices.

Additionally, many healthcare professionals do not consider BPD to be a genuine diagnosis and believe it to be self-induced or self-diagnosed. Consequently, individuals with BPD are often not informed about their disorder or are told that they have another diagnosis, such as bipolar disorder, compromising the principle of transparent diagnosis and patient empowerment for informed and consensual care.

The diagnosis of personality disorder is sometimes used as a label for disliked individuals. This is hardly surprising, given that interpersonal relationship problems are the primary characteristic of these disorders. However, we cannot ignore the fact that personality issues are extremely common, and rejection based on perceived undesirability is not acceptable. We now have evidence from around the world that personality disorders occur in 6 to 12% of the population, with a much higher prevalence among psychiatric patients. Of course, these figures may prompt accusations of inappropriate medicalization of normal human variations, but this criticism must be questioned. Recent findings have shown that even relatively mild personality disorders are associated with greater psychopathology, higher use of health services, and higher costs compared to individuals without personality pathology, and this is an increasing trend.

In a new article, I challenge existing perspectives and discourses about the clinical reality of the disorder. I compared impulsivity, anxiety, hopelessness, suicidal tendencies and depression in BPD patients and the general population during the COVID-19 isolation in France. While all groups exhibited elevated levels of impulsivity and anxiety, statistically significant differences were found in the severity of hopelessness, suicidal ideation, anxiety, and depression. Specifically, individuals with BPD showed markedly higher levels of these symptoms compared to the general population sample. This suggests that BPD exhibits a distinct profile of chronic distress, exceeding the levels seen in general stress reactions or other disorders like depression or anxiety that are more recognized and accepted in society.

My own and similar studies suggest that there is a need for a critical reevaluation of the diagnostic methods for personality disorders such as BPD. There is growing concern that some healthcare professionals may underdiagnose personality disorders, possibly because such disorders are not perceived to be severe. This reluctance to diagnose, combined with inadequate training in diagnostic procedures, may contribute to a systemic failure to recognize and address the prevalence and impact of personality disorders. The healthcare system then risks perpetuating the misconception that diagnostic and communication challenges related to personality disorders are not significant.

Better diagnostic practices, coupled with more accurate case descriptions and better treatment planning, can ensure faster and more effective treatment. This would provide individuals with the opportunity for personal and clinical recovery. Furthermore, the process of communicating the diagnosis of BPD is fundamental to how people understand and interpret their diagnosis, which in turn can affect their hope for recovery and motivation to use healthcare services. In conclusion, there is room for significant improvement in how we approach personality disorders such as borderline personality disorder.

This post is written by…

Sylvia Martin

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

Sylvia Martin, Instability of the unstable, an observation of borderline personality disorder traits and impulsivity declaration during the pandemic, L’Encéphale, 2025, https://doi.org/10.1016/j.encep.2024.10.007

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Existential conversations in palliative care

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25 March, 2025 / / 2 Comments

In palliative care of seriously ill and dying patients, healthcare professionals deal not only with medical needs, but also with the existential needs of patients and their families. Although the palliative healthcare teams can receive support from professions that focus on existential conversations, it is the physicians and not least the nurses, care assistants, physiotherapists and occupational therapists who more continuously talk with patients about life, dying and death. Sometimes the conversations are planned in advance, but often they arise spontaneously in connection with the care interventions.

A Swedish interview study investigated experiences of spontaneous existential conversations with patients and their families within the healthcare professions that meet them daily: nurses, care assistants, physiotherapists and occupational therapists. They were asked questions about when existential conversations could arise and what influenced the quality of the conversations. They were also asked about how they talked to patients about their thoughts about death, how they reacted to patients’ existential questions, and how they reacted when relatives had difficulty accepting the situation.

The aim of the study was to create a structured overview of the experiences of the healthcare professionals, a model of what was considered important for existential conversations to arise and function well. Strategies used by the palliative teams were identified, as well as obstacles to meaningful existential conversations.

The main concern for the healthcare professionals was to establish a trusting relationship with patients and next of kin. Without such a relationship, no meaningful conversations about life, dying and death could arise. A core category that emerged from the interview material was to maintain presence: to be like a stable rock under all circumstances. In the meeting with patients and relatives, they stayed physically close and were calmly present during quiet moments. This low-key presence could spark conversations about the end of life, about memories, about support for quality of life, even in situations where patients and relatives were afraid or upset. By maintaining a calm presence, it was perceived that one became receptive to existential conversations.

The palliative teams tried to initiate conversations about death early. As soon as patients entered the ward, open-ended questions were asked about how they were feeling. The patients’ thoughts about the future, their hopes and fears were carefully probed. Here, the main thing is to listen attentively. Another strategy was to capture wishes and needs by talking about memories or informing about the diagnosis and how symptoms can be alleviated. The healthcare professionals must also guide relatives, who may be anxious, angry and frustrated. Here, it is important not to take any criticism and threats personally, to calmly acknowledge their concerns and inform about possible future scenarios. Relatives may also need information on how they can help care for the patient, as well as support to say goodbye peacefully when the patient has died. Something that also emerged in the interviews was the importance of maintaining one’s professional role in the team. For example, a physiotherapist must maintain focus on the task of getting patients, who may lack motivation, to get up and exercise. A strategy for dealing with similar difficulties was to seek support from others in the care team, to talk about challenges that one otherwise felt alone with.

Something that could hinder existential conversations was the fear of making mistakes: then one dares neither to ask nor to listen. Another obstacle could be anxious relatives: if relatives are frustrated and disagreeing, this can hinder existential conversations that help them say goodbye and let the patient die peacefully. A third obstacle was lack of time and feeling strained: sometimes the health care professionals have other work tasks and do not have time to stop and talk. And if relatives do not accept that the patient is dying, but demand that the patient be moved to receive effective hospital care, the tension can hinder existential conversations. Finally, lack of continuous training and education in conducting existential conversations was perceived as an obstacle, as was lack of support from colleagues and from the healthcare organization.

Hopefully, the article can motivate educational efforts within palliative care for those professions that manage the existential needs of patients and relatives on a daily basis. You can find the article here: Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study.

Pär Segerdahl

Written by…

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

Lagerin, A., Melin-Johansson, C., Holmberg, B. et al. Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study. BMC Palliative Care 24, 47 (2025). https://doi.org/10.1186/s12904-025-01681-x

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Nurses’ experiences of dehumanization

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11 March, 2025 / / 1 Comment

Many healthcare professionals who work in nursing report that they experience a sense of dehumanization in their work. Although this is an increasingly recognized problem, it is still unclear how it manifests itself in practice and should be addressed. Previous studies indicate that the experience of dehumanization is often linked to excessive workload, lack of institutional support, and growing bureaucratization of medical care. As healthcare becomes more standardized and protocol-driven, nurses find themselves constrained by rigid structures that limit their ability to provide personalized and compassionate care. Over time, these conditions contribute to professional exhaustion, a loss of meaning in work, and in some cases, institutional mistreatment that is not intentional but arises as a byproduct of a dysfunctional organization of work.

The ethical implications of this phenomenon are significant. Respecting the dignity of both healthcare professionals and patients is fundamental to medical ethics, but this principle is increasingly challenged by current working conditions. The erosion of humanity in nurse-patient interactions not only affects the emotional well-being of nurses but also impacts the quality of care itself. Studies have shown that depersonalization in healthcare settings is associated with higher rates of medical errors. Furthermore, institutions bear a collective responsibility to ensure ethical working conditions, providing nurses with the necessary resources and support to maintain both their professional integrity and personal well-being.

Dehumanization of care is one of the topics of Marie-Charlotte Mollet’s soon-to-be completed dissertation at Paris Nanterre University. In one of her most recent studies, 263 French nurses, working in a variety of healthcare settings (public, private, nursing homes), were surveyed regarding factors related to their working conditions. They answered questionnaires about their workload, emotional demands, and organizational dehumanization. They also answered questions about their mental states, psychological flexibility, psychological distress, stress, and burnout. They moreover provided sociodemographic data on age, seniority, and gender.

In the analysis of the data, gender was found to be a relevant factor, raising new questions about dehumanization. For example, a significant difference between men and women was observed regarding dehumanization of patients: male nurses dehumanize patients more than female nurses do. This difference was measured by having study participants answer questions about “depersonalization” in a psychological assessment instrument for burnout (Maslach Burnout Inventory). Marie-Charlotte Mollet’s work thus suggests that dehumanization in healthcare needs to be examined through a gendered lens. For example, several studies have demonstrated that female nurses often face different expectations than their male counterparts, especially when it comes to emotional labor. Female nurses are more often expected to show empathy and provide emotional support, which places an additional burden on them and increases their vulnerability to burnout.

Addressing challenges related to dehumanization requires serious rethinking of the ethical and institutional frameworks of healthcare. Systemic reforms are necessary to uphold humanistic values and ethical standards in medical practice and to ensure that nurses are not merely treated as functional units within an overburdened system. Empirically informed reflection on equity, recognition, and gender in nursing is crucial to fostering a more sustainable and just profession; one where both patients and nurses are treated with the dignity they deserve. It is in the context of this need for well-founded reflection on the working conditions of nursing that this study and similar research efforts should be understood and considered: for the nurses’ own sake but also for the well-being of the patients and the quality of the care they receive.

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Sylvia Martin

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

Marie-Charlotte Mollet, PhD student at Paris Nanterre University.

Ethics needs empirical input

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Why does science ask the question of artificial consciousness?

Two little girls facing each other. One of them is smiling and dancing, the other one has an old TV screen on her head. Photo: Ryunosuke Kikuno, from Unsplash.
4 March, 2025 / / 1 Comment

The possibility of conscious AI is increasingly perceived as a legitimate and important scientific question. This interest has arisen after a long history of scientific doubts about the possibility of consciousness not only in other animals, but sometimes even in humans. The very concept of consciousness was for a period considered scientifically suspect. But now the question of conscious AI is being raised within science.

For anyone interested in how such a mind-boggling question can be answered philosophically and scientifically, I would like to recommend an interesting AI-philosophical exchange of views in the French journal Intellectica. The exchange (which is in English) revolves around an article by two philosophers, Jonathan Birch and Kristin Andrews, who for several years have discussed consciousness not only among mammals, but also among birds, fish, cephalopods, crustaceans, reptiles, amphibians and insects. The two philosophers carefully distinguish between psychological questions about what might make us emotionally attracted to believe that an AI system is conscious, and logical questions about what philosophically and scientifically can count as evidence for conscious AI. It is to this logical perspective that they want to contribute. How can we determine whether an artificial system is truly conscious; not just be seduced into believing it because the system emotionally convincingly mirrors the behavior of subjectively experiencing humans? Their basic idea is that we should first study consciousness in a wide range of animal species beyond mammals. Partly because the human brain is too different from (today’s) artificial systems to serve as a suitable reference point, but above all because such a broad comparison can help us identify the essential features of consciousness: features that could be used as markers for consciousness in artificial systems. The two philosophers’ proposal is thus that by starting from different forms of animal consciousness, we can better understand how we should philosophically and scientifically seek evidence for or against conscious AI.

One of my colleagues at CRB, Kathinka Evers, also a philosopher, comments on the article. She appreciates Birch and Andrews’ discussion as philosophically clarifying and sees the proposal to approach the question of conscious AI by studying forms of consciousness in a wide range of animal species as well argued. However, she believes that a number of issues require more attention. Among other things, she asks whether the transition from carbon- to silicon-based substrates does not require more attention than Birch and Andrews give it.

Birch and Andrews propose a thought experiment in which a robot rat behaves exactly like a real rat. It passes the same cognitive and behavioral tests. They further assume that the rat brain is accurately depicted in the robot, neuron for neuron. In such a case, they argue, it would be inconsistent not to accept the same pain markers that apply to the rat for the robot as well. The cases are similar, they argue, the transition from carbon to silicon does not provide sufficient reason to doubt that the robot rat can feel pain when it exhibits the same features that mark pain in the real rat. But the cases are not similar, Kathinka Evers points out, because the real rat, unlike the robot, is alive. If life is essential for consciousness, then it is not inconsistent to doubt that the robot can feel pain even in this thought experiment. Someone could of course associate life with consciousness and argue that a robot rat that exhibits the essential features of consciousness must also be considered alive. But if the purpose is to identify what can logically serve as evidence for conscious AI, the problem remains, says Kathinka Evers, because we then need to clarify how the relationship between life and consciousness should be investigated and how the concepts should be defined.

Kathinka Evers thus suggests several questions of relevance to what can logically be considered evidence for conscious AI. But she also asks a more fundamental question, which can be sensed throughout her commentary. She asks why the question of artificial consciousness is even being raised in science today. As mentioned, one of Birch and Andrews’ aims was to avoid the answer being influenced by psychological tendencies to interpret an AI that convincingly reflects human emotions as if it were conscious. But Kathinka Evers asks, as I read her, whether this logical purpose may not come too late. Is not the question already a temptation? AI is trained on human-generated data to reflect human behavior, she points out. Are we perhaps seeking philosophical and scientific evidence regarding a question that seems significant simply because we have a psychological tendency to identify with our digital mirror images? For a question to be considered scientific and worth funding, some kind of initial empirical support is usually required, but there is no evidence whatsoever for the possibility of consciousness in non-living entities such as AI systems. The question of whether an AI can be conscious has no more empirical support than the question of whether volcanoes can experience their eruptions, Kathinka Evers points out. There is a great risk that we will scientifically try to answer a question that lacks scientific basis. No matter how carefully we seek the longed-for answer, the question itself seems imprudent.

I am reminded of the myth of Narcissus. After a long history of rejecting the love of others (the consciousness of others), he finally fell in love with his own (digital) reflection, tried hopelessly to hug it, and was then tormented by an eternal longing for the image. Are you there? Will the reflection respond? An AI will certainly generate a response that speaks to our human emotions.

Pär Segerdahl

Written by…

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

Birch Jonathan, Andrews Kristin (2024/2). To Understand AI Sentience, First Understand it in Animals. In Gefen Alexandre & Huneman Philippe (Eds), Philosophies of AI: thinking and writing with LLMs, Intellectica, 81, pp. 213-226.

Evers Kathinka (2024/2). To understand sentience in AI first understand it in animals. Commentary to Jonathan Birch and Kristin Andrews. In Gefen Alexandre & Huneman Philippe (Eds), Philosophies of AI: thinking and writing with LLMs, Intellectica, 81, pp. 229-232.

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