The Ethics Blog

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

Category: In the profession (Page 1 of 7)

Do physicians have sufficient knowledge about genomic medicine?

DNA chain link. Photo: Warren Umoh, Unsplash.
27 January, 2026 / / 1 Comment

As patients, we are used to providing samples so that the physician can make a diagnosis and prognosis and choose treatment. But it is becoming more common for physicians to also order genomic tests in order to make the diagnosis, prognosis and treatment even more individualized. Even common diseases such as cardiovascular disease, diabetes and depression can become subject to this approach, where information about the patient’s DNA is obtained together with other samples.

As genomic medicine becomes more common, physicians in a variety of specialties need to know more about genetics and genomics. Do physicians who are not specialists in clinical genetics have sufficient knowledge to be able to order relevant tests, interpret test results and talk to patients? How do they prefer to work with genomic medicine? What support do they need and how do they want to learn more? These and other questions were investigated in a survey study aimed at Swedish specialist physicians in, among others, oncology, gynaecology and obstetrics, and general paediatrics; clinical geneticists were excluded.

The study suggests that Swedish physicians want to learn more about genomic medicine, that they are currently learning more, but that the level of knowledge may be low. The physicians in the study expressed a great need for support in matters related to genomic medicine. Although some physicians preferred to refer patients who could be considered for genomic medicine to regional genetics services, a majority preferred to manage the patients themselves, provided that they received good support. What they mainly wanted help with was choosing suitable tests and interpreting test results. The majority of the physicians reported that better knowledge of genomic medicine would change the way they work as physicians. They seemed to prefer to learn more about genomic medicine not through university courses, but through continuous education of various kinds.

In their discussion, the authors (including Joar Björk and Charlotta Ingvoldstad Malmgren) emphasize that physicians’ uncertainty about choosing suitable tests and interpreting test results is probably hampering the mainstreaming of genomic medicine today. Support and training should therefore focus particularly on these tasks. They also note that the physicians mainly requested support of a more technical nature and were less interested in learning more about ethics and communication with patients and families. They may believe that they can rely on their general competence as physicians in these areas, but genomic medicine presents physicians with particularly difficult ethical and communicative challenges, the authors point out. Genetic counselors may therefore have important functions in genomic medicine.

More specific results and the authors’ discussion can be found here: Self-assessed knowledge of genomic medicine among non-genetics physicians – results from a nationwide Swedish survey.

The authors conclude that Swedish physicians have already taken important steps towards making genomic medicine common, but that mainstreaming requires continuous educational efforts, support from regional genetics services and improved guidelines for how to collaborate.

Pär Segerdahl

Written by…

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

Björk, J., Friedman, M., Nisselle, A. et al. Self-assessed knowledge of genomic medicine among non-genetics physicians – results from a nationwide Swedish survey. Journal of Community Genetics 16, 669–677 (2025). https://doi.org/10.1007/s12687-025-00818-y

This post in Swedish

We have a clinical perspective

Need for evidence on nursing in childhood cancer care?

20 January, 2026 / / 1 Comment

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

This post in Swedish

We recommend readings

When nurses become researchers: ethical challenges in doctoral supervision

Nurse turned PhD student at Seminar, Photo by RU Recovery Ministries on Unsplash
25 November, 2025 / / 2 Comments

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

This post in Swedish

We recommend readings

Can counseling be unphilosophical?

Chairs. Image by Ron Lach from Pexels
28 October, 2025 / / 1 Comment

A fascinating paper by Fredrik Andersen, Rani Lill Anjum, and Elena Rocca, “Philosophical bias is the one bias that science cannot avoid,” reminds us of something fundamental, but often forgotten, about the nature of scientific inquiry. Every scientist, whether they realize it or not, operates with fundamental assumptions about causality, determinism, reductionism, and the nature of reality itself. These “philosophical biases” are, they write, unavoidable foundations that shape how we see, interpret, and engage with the world.

The authors show us, for instance, how molecular biologists and ecologists approached GM crop safety with entirely different philosophical frameworks. Molecular biologists focused on structural equivalence between GM and conventional crops, operating from an entity-based ontology where understanding parts leads to understanding wholes. Ecologists emphasized unpredictable environmental effects, working from a process-based ontology where relationships and emergence matter more than individual components. Both approaches were scientifically rigorous. Both produced valuable insights. Yet neither could claim philosophical neutrality.

If science cannot escape philosophical presuppositions, what about counseling and psychotherapy? When a counselor sits with a client struggling with identity, purpose, or belonging, what is actually happening in that encounter? The moment guidance is offered, or even when certain questions are asked rather than others, something interesting occurs. But what exactly?

Consider five questions that might help us see what’s already present in counseling practice:

How do we understand what makes someone themselves? When a counselor helps a client explore their identity, are they working with a theory of personal continuity? When they encourage someone to “be true to yourself,” what assumptions about authenticity are at play? Even the counselor who focuses purely on behavioral techniques is making a statement about whether human flourishing can be addressed without engaging questions about what it means to exist as this particular person. Can we really separate therapeutic intervention from some implicit understanding of selfhood?

What are we assuming about the relationship between mind and body, symptom and meaning? A client arrives with anxiety. One practitioner might reach for cognitive restructuring techniques, another for somatic awareness practices, another for meaning-making conversations. Each choice reflects philosophical commitments about how mind and body relate, whether psychological and physical wellbeing can be separated, and what we’re actually addressing when we work with distress. But do these commitments disappear simply because they remain unspoken?

When we speak of human connection and belonging, what vision of relationship are we already inhabiting? Counselors regularly address questions of intimacy, community, and social bonds. In doing so, might they be operating with implicit theories about what constitutes genuine connection? When guiding someone toward “healthier relationships,” are we working with philosophical assumptions about autonomy and interdependence, about what humans fundamentally need from each other? Can therapeutic work with relationships remain neutral about what relationships fundamentally are?

What understanding of human possibility guides our sense of what can change? Every therapeutic approach carries assumptions about human agency and potential. When we help someone envision different futures, when we work with hope or despair, when we distinguish between realistic and unrealistic goals, aren’t we already operating with philosophical commitments about what enables or constrains human possibility? A therapist who insists that their work deals only with “what’s practicable” seems to be making a philosophical claim; that human existence can be adequately understood through purely pragmatic or practical categories.

How do questions of meaning, purpose, and value show up in therapeutic work, even when uninvited? A client asks not just “How can I feel less anxious?” but “Why do I feel my life lacks direction?” or “What makes any of this worthwhile?” These questions of meaning arise in therapeutic encounters even in approaches that don’t explicitly address them. When such questions surface, can a counselor respond without engaging philosophical dimensions? And if we attempt to redirect toward purely behavioral or emotional terrain, aren’t we implicitly suggesting that questions of meaning and purpose are separate from genuine wellbeing?

Just as scientists benefit from making their philosophical presuppositions explicit and debatable, might therapeutic practitioners benefit from acknowledging and refining the philosophical commitments that already shape their work?

Read the full paper: Philosophical bias is the one bias that science cannot avoid.

Written by…

Luis de Miranda, philosophical practitioner and associated researcher at the Center for Research Ethics and Bioethics at Uppsala University.

Andersen, F., Anjum, R. L., & Rocca, E. (2019). Philosophical bias is the one bias that science cannot avoid. eLife, 8, e44929. https://doi.org/10.7554/eLife.44929

We like challenging questions

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

Stuffed bunny nurse
14 October, 2025 / / 1 Comment

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

This post in Swedish

Ethics needs empirical input

Interprofessional collaboration in hospital care of patients who self-harm

Four people sitting at a table, and a women in a black shirt sitting in front of a laptop. Photo: Cottonbro, from Pexels.
30 September, 2025 / / 1 Comment

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

This post in Swedish

We recommend readings

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

DNA chain link. Photo: Warren Umoh, Unsplash.
9 September, 2025 / / 1 Comment

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

This post in Swedish

We have a clinical perspective

Mind the gap between ethics in principle and ethics in practice

train passing station, photo by Ingo Joseph on Pexels
2 September, 2025 / / 1 Comment

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.

This post in Swedish

We recommend readings

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

Zoomed in picture of person in blue scrubs holding a chart, in front of a blue background. Photo: Cottonbro.
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

This post in Swedish

Ethics needs empirical input

Existential conversations in palliative care

Sick man in bed. Photo by Kampus Production on Pexels.
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

This post in Swedish

We recommend readings

« Older posts