The Ethics Blog

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

Category: In the profession (Page 1 of 6)

Mind the gap between ethics in principle and ethics in practice

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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

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

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

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

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“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

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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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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

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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.

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Ethics as an integral part of standard care

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25 February, 2025 / / 1 Comment

Healthcare professionals experience ethical dilemmas and ethically challenging situations on a daily basis. A child receiving important treatment may have difficulty sitting still. How should one think about physically restraining children in such situations? In order to provide good care, healthcare professionals may regularly need time and support to reflect on ethical dilemmas that may arise in their work.

Experiences from an attempt to introduce regular reflection on ethics cases are reported in an article with Pernilla Pergert as the main author. Staff in pediatric cancer care received training in conducting so-called ethics rounds, where healthcare professionals meet to discuss relevant ethics cases. The course participants were assigned to arrange ethics rounds at their respective workplaces both during and after the training. They were then interviewed about their experiences. Hopefully, the results can help others who are planning to introduce ethics rounds.

The experiences revolved around the challenge of positioning ethics in the workplace. How do you find time and space for regular ethical reflection in healthcare? Positioning ethics was not least about the status of ethics in a healthcare organization that prioritizes direct patient care. From such a perspective, ethics rounds may be seen as a luxury that does not really belong to the care work itself, even though ethical reflection is necessary for good care.

The interviewees also spoke about different strategies for positioning ethics. For example, it was considered important that several interested parties form alliances where they collaborate and share responsibility for introducing ethics rounds. This also helps ensure that several different professional groups can be included in the ethics rounds, such as physicians, nurses, social workers and psychologists. It was also considered important to talk about the ethics rounds and their benefits at staff meetings, as well as to identify relevant patient cases with ethical dilemmas that may create concern, uncertainty and conflicts in the care work. These ethical dilemmas do not have to be big and difficult, also more frequently occurring everyday ethical challenges need to be discussed. Finally, the importance of scheduling the ethics rounds at fixed times was emphasized.

The authors conclude that their study highlights the need to position ethics in healthcare so that staff can practice ethics as part of their care work. The study also exemplifies strategies for achieving this. A major challenge, the authors emphasize, is the polarization between care and ethics, as if ethics were somehow outside the actual care work. But if ethical dilemmas are part of everyday healthcare, then ethics should be seen as an integral part of standard care, the authors argue.

Read the article here: Positioning Ethics When Direct Patient Care is Prioritized: Experiences from Implementing Ethics Case Reflection Rounds in Childhood Cancer Care.

Pär Segerdahl

Written by…

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

Pergert, P., Molewijk, B. & Bartholdson, C. Positioning Ethics When Direct Patient Care is Prioritized: Experiences from Implementing Ethics Case Reflection Rounds in Childhood Cancer Care. HEC Forum (2024). https://doi.org/10.1007/s10730-024-09541-6

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The need for self-critical expertise in public policy making

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28 January, 2025 / / 1 Comment

Academics are often recruited as experts in committees tasked with developing guidelines for public services, such as healthcare. It is of course important that policy documents for public services are based on knowledge and understanding of the problems. At the same time, the role of an expert is far from self-evident, because the problems that need to be addressed are not purely academic and cannot be defined in the same way that researchers define their research questions. A competent academic who accepts the assignment as an expert therefore has reason to feel both confident and uncertain. It would be unfortunate otherwise. This also affects the expectations of those around them, not least the authority that commissions the experts to develop the guidelines. The expert should be given the opportunity to point out any ambiguities in the committee’s assignment and also to be uncertain about his or her role as an expert. Again, it would be unfortunate otherwise. But if the expert role is contradictory, if it contains both certainty and uncertainty, both knowledge and self-criticism, how are we to understand it?

A realistic starting point for discussing this question is an article in Politics & Policy, written by Erica Falkenström and Rebecca Selberg. They conducted an empirical case study of ethical problems related to the development of Swedish guidelines for intensive care during the COVID-19 pandemic: “National principles for prioritization in intensive care under extraordinary circumstances.” The expert group consisted of 11 men, all physicians or philosophers. The lack of diversity is obviously problematic. The professional group that most directly comes into contact with the organizational challenges in healthcare, nurses, mostly women, was not represented in the expert group. Nor did the expert group include any social scientists, who could have contributed knowledge about structural problems in Swedish healthcare even before the pandemic broke out, such as problems related to the fact that elderly care in Sweden is administered separately by the municipalities. Patients in municipal nursing homes were among the most severely affected groups during the pandemic. They were presented in the policy document as a frail group that should preferably be kept away from hospitals (where the most advanced medical care is provided), and instead be cared for on site in the nursing homes. A problematic aspect of this was that the group of elderly patients in municipal care did not have access to competent medical assessment of their individual ability to cope with intensive care, which could possibly be seen as discriminatory. This reduction in the number of patients requiring intensive care may in turn have given the regional authorities responsible for intensive care reason to claim that they had sufficient resources. Moreover, if one of the purposes of the guidelines was to reduce stress among healthcare staff, one might wonder what impact the guidelines had on the stress level of municipal employees in nursing homes.

The authors identify ethical issues concerning three aspects of the work to develop the national guidelines: regarding the starting points, regarding the content of the document, and regarding the implementation of the guidelines. They also discuss an alternative political-philosophical way of approaching the role of being an expert, which could counteract the problems described in the case study. This alternative philosophical approach, “engaged political philosophy,” is contrasted with a more conventional philosophical expert role, which according to the alternative view overemphasizes the role of philosophy. Among other things, by letting philosophical theory define the problem without paying sufficient attention to the context. Instead, more open questions should be asked. Why did the problem become a public issue right now? What are the positions and what drives people apart? By starting from such open-ended questions about the context, the politically engaged philosopher can identify values ​​at stake, the facts of the current situation and its historical background, and possible contemporary alternatives. As well as including several different forms of relevant expertise. A broader understanding of the circumstances that created the problem can also help authorities and experts to understand when it would be better not to propose a new policy, the authors point out.

I personally think that the risk of experts overemphasizing the importance of their own forms of knowledge is possibly widespread and not unique to philosophy. An alternative approach to the role of being an expert probably requires openness to its basic contradiction: the expert both knows and does not know. No academic discipline can make exclusive claim to such self-critical awareness, although self-examination can be described as philosophical in a broad sense that takes us beyond academic boundaries.

I recommend the article in Politics & Policy as a fruitful case study for further research and reflection on challenges in the role of being an expert: Ethical Problems and the Role of Expertise in Health Policy: A Case Study of Public Policy Making in Sweden During COVID-19.

Pär Segerdahl

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

Falkenström, E. and Selberg, R. (2025), Ethical Problems and the Role of Expertise in Health Policy: A Case Study of Public Policy Making in Sweden During COVID-19. Politics & Policy, 53: e12646. https://doi.org/10.1111/polp.12646

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Do the goals of care reflect the elderly patient’s personal preferences?

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14 January, 2025 / / 1 Comment

Person-centered care is not only an ethical approach that values ​​the patient’s personal preferences and decision-making. It is also a concrete way to improve care and the patient’s quality of life. This is especially important when caring for elderly patients, who may have multiple chronic conditions and various functional limitations. This requires sensitivity to the patient’s description of their situation and joint planning to adapt care to the patient’s individual needs and wishes. The care plan should be documented in the patient’s medical record in the form of evaluable goals.

A new Swedish study investigated the presence of person-centered, evaluable goals in the care plans for patients at a geriatric psychiatric outpatient clinic. It was found that the goals documented in the patients’ medical records had a biomedical focus on the disease: on recovery or on reduced symptoms. Although the analysis of the medical records revealed that the patients themselves also expressed other needs, such as existential needs and the need for support in carrying out everyday activities they perceived were important for a better quality of life, these personal wishes were not reflected in the care plans in the form of evaluable goals.

A biomedical focus on disease treatment could also manifest itself in the form of decisions to reduce the prescription of addictive drugs, without the care plan indicating alternative measures or mentioning the effects that this medical goal could have on the patient.

The authors point out that the fact that the medical records nevertheless documented the patients’ personal wishes indicates that there was a certain degree of person-centered interaction with the patients. However, since the conversations did not result in documented goals of care, the person-centered process seems to have stopped halfway, the authors argue in their discussion of the results. The patients’ stories were included, but were not incorporated into the medical decision-making process and the planning of care.

An aim of the study was also to examine psychiatric care plans at the end of life. Although the proximity to death and the possibility of palliative care could be mentioned in the medical records, the goals were rarely changed from curative to palliative care. Moreover, neither the healthcare professionals nor the patients seemed to view psychiatric care as part of palliative care. On the contrary, they seemed to view palliative care as a reason to end psychiatric care. None of the few decisions to change the focus of care led in practice to any straightforward palliative approach.

The absence of the concept of palliative care, despite the fact that the patients were close to death when the studied goals of care were established, is surprising, according to the authors. Conversations about goals and hopes at the end of life should be self-evident in geriatric psychiatry, and in their discussion, the authors suggest concrete tools that are already available to support such conversations. Given the complex combination of conditions and the proximity to death, there are strong reasons to formulate care plans with an increased focus on improved quality of life and not just on restored mental health, the authors argue.

In their conclusion, the authors point out the need for more research on how person-centered care interacts with the planning of evaluable goals. They also point out the importance of a palliative approach in geriatric psychiatric care, where patients may suffer from multiple concurrent conditions as well as more or less severe and long-term mental disorders.

Read the article here: Psychiatric Goals of Care at the End of Life: A Qualitative Analysis of Medical Records at a Geriatric Psychiatric Outpatient Clinic.

Pär Segerdahl

Written by…

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

Kullenberg, Helena, Helgesson, Gert, Juth, Niklas, Lindblad, Anna, Psychiatric Goals of Care at the End of Life: A Qualitative Analysis of Medical Records at a Geriatric Psychiatric Outpatient Clinic, Journal of Aging Research, 2024, 2104985, 10 pages, 2024. https://doi.org/10.1155/jare/2104985

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AI is the answer! But what is the question?

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3 December, 2024 / / 1 Comment

Many projects are underway in Sweden regarding AI systems in healthcare. The testing of AI solutions is in full swing. But many systems do not seem to be implemented and used. Why? Often it is a matter of poor preparatory work. Without a carefully considered strategy and clear goals, we risk scaling up AI systems that cannot cope with the complexity of healthcare.

The atmosphere around many AI ​​ventures can almost be a little religious. You must not be negative or ask critical questions. Then you are quickly branded as a cynic who slows down development and does not understand the signs of the times. You almost have to blind yourself to potential pitfalls and speak and act like a true believer. Many justify the eager testing of AI by saying that we must dare to try and then see which solutions turn out to be successful. It is fascinating how willingly we apply AI to all sorts of tasks. But are we doing it the right way, or do we risk rushing on without giving ourselves time to think?

There are indeed economical and practical challenges in healthcare. It is not only about a lack of financial resources, but also about a lack of personnel and specialists. Before we can allow technologies like AI to become part of our everyday lives, we need to ask ourselves some important questions: What problems are we trying to solve? How do our solutions affect the people involved? We may also need to clarify whether the purpose of the AI ​​system is to almost take over an entire work task or rather to facilitate our work in certain well-defined respects. The development of AI products should also pay extra attention to socially created categories of ethnicity and gender to avoid reinforcing existing inequalities through biased data selection. Ethically well-considered AI implementations probably lead to better clinical outcomes and more efficient care. It is easy to make hasty decisions that soon turn out to be wrong: accuracy should always be a priority. It is better to think right and slow than fast and wrong. Clinical studies should be conducted even on seemingly not so advanced AI products. In radiology, this tradition is well established, but it is not as common in primary care. If a way of working is to be changed with the help of AI, one should evaluate what effects it can have.

We must therefore not neglect three things: We must first of all define the need for an AI solution. We must then consider that the AI ​​tool is not trained with biased data. Finally, we need to evaluate the AI ​​solution before implementing it.

With the rapid data collection that apps and digital tools allow today, it is important not to get carried away, but to carefully consider the ethics of designing and implementing AI. Unfortunately, the mantra has become: “If we have data, we should develop an AI.” And that mantra makes anyone who asks “Why?” seem suspicious. But the question must be asked. It does not hinder the development of AI solutions, but contributes to it. Careful ethical considerations improve the quality of the AI ​​product and strengthens the credibility of the implementation.

I therefore want to warn against being seduced by the idea of ​​AI solutions for all sorts of tasks. Before we say AI is the answer, we need to ask ourselves: What is the question? Only if we can define a real issue or challenge can we ensure that the technology becomes a helping hand instead of a burden. We do not want to periodically end up in the situation where we suddenly have to pull the emergency brake, as in a recent major Swedish investment in AI in healthcare, called Millennium. We must not get stuck in the mindset that everything can be done faster and easier with AI. We must also not be driven by the fear of falling behind if we do not immediately introduce AI. Only a carefully considered evaluation of the need and the design of an AI solution can ensure appropriate care that is also effective. To get correct answers quickly, we must first give ourselves time to think.

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Jennifer Viberg Johansson, who is an Associate Professor in Medical Ethics at the Centre for Research Ethics & Bioethics.

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World Health Organization outlines guidelines for the use of genomic data

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26 November, 2024 / / 1 Comment

Human genomics has potential to improve the health of individuals and populations for generations to come. It also requires the collection, use and sharing of data from people all over the world. There is therefore an accompanying need for a globally fair distribution of genomic technology, data and results. As the databases and infrastructures will be in operation for a long time, ethical, legal, social and cultural issues need to be taken into account from the outset, considering the entire life cycle of the data.

To promote such an ethical, equitable and responsible use of genomic data, the World Health Organization (WHO) recently issued globally applicable guidelines for human genome data collection, access, use and sharing. The guidelines are formulated as 8 principles with associated practical recommendations. The principles were developed step by step, first through review of existing documents and virtual consultation with experts from different parts of the world, then through a workshop in Geneva where experts met on site. Finally, the draft was discussed through public consultations.

The purpose of the WHO document is to create globally applicable principles that can complement local legislation. This is to promote, among other things, social and cultural inclusiveness as well as justice in the use of human genome data.

Read the important document here: Guidance for human genome data collection, access, use and sharing.

Pär Segerdahl

Written by…

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

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Approaching future issues

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Nurses’ experiences of tube feeding under restraint for anorexia

Zoomed in picture of person in blue scrubs holding a chart, in front of a blue background. Photo: Cottonbro.
12 November, 2024 / / 1 Comment

The eating disorder anorexia (anorexia nervosa) is a mental disorder that can be life-threatening if it is not treated. It is characterized by fear of gaining weight: you starve yourself to lose weight and do not understand that being underweight is dangerous. Even if most recover, the disease is associated with increased mortality and the most severely ill may need to be hospitalized.

Hospital care can involve both psychotherapy and drug treatment, but not everyone wants or is able to participate in the treatment, which of course also involves eating. They may lack motivation to change or refuse to see that they need treatment. If the malnutrition becomes life-threatening, it may be necessary to decide on tube feeding as a compulsory measure. Liquid nutrition is then given via a thin tube that is inserted through one nostril and down into the stomach.

Tube-feeding an adult who does not want to eat is reasonably a challenge for the nurses who have to perform the procedure. What are their experiences of the measure like? One study investigated the issue by interviewing nurses at a Norwegian inpatient ward where adult patients with severe anorexia were cared for. What did the nurses have to say?

An important theme was that one strove to provide good care even during the coercive measure. It must be so good that the patient voluntarily wants to stay in the ward after tube feeding. For example, the measure is never taken until one has gradually tried to encourage the patient to eat, asked the patient about the situation and discussed whether to use the tube instead. If tube feeding becomes necessary, one still tries to give the patient options, one tries to respect the patient’s autonomy as much as possible, even if it is a coercive measure. The nurses also described difficulties in balancing kindness and firmness during the procedure, difficulties in combining the role of being a helper and being a controller.

Another theme was ethical concerns when the doctor decided on tube feeding even though the patient’s BMI was not so low that the condition was life-threatening. One nurse stated that she sometimes found such situations so problematic that she refused to take part in the procedure.

The third theme was concerns about calling in staff from another ward to help restrain the patient while the nurse performed the tube feeding. Some nurses were concerned about how this might be experienced by patients with a history of abuse. Others saw the tube feeding as a life-saving measure and experienced no ethical concerns. However, participants in the study emphasized that tube feeding affects the relationship with the patient and that restraint can disrupt the relationship. A nurse told how she once performed tube feeding on a patient she had never met before, and with whom she had therefore not established a relationship, and how this then prevented a good relationship with that patient.

If you want to read for yourself what the nurses said and how the authors discussed their findings, read the study here: Nurses’ experience of nasogastric tube feeding under restraint for Anorexia Nervosa in a psychiatric hospital.

Interview studies that capture human experience through the participants’ own stories often yield unexpectedly meaningful insights. Subtle details of human life that you would not otherwise have thought of appear in the interview material. One such insight from this study was how the nurses made great efforts so that tube feeding could be perceived as good care with respect for the patient’s autonomy and dignity, despite the fact that it is a coercive measure. It also became clear that there were tensions in the situation that the nurses had difficulty dealing with, such as first performing the coercive measure and then comforting the patient and re-establishing the relationship that had been disrupted. One of the conclusions in the article is therefore that even the nurses who perform tube feeding are vulnerable.

Pär Segerdahl

Written by…

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

Brinchmann, B.S., Ludvigsen, M.S. & Godskesen, T. Nurses’ experience of nasogastric tube feeding under restraint for Anorexia Nervosa in a psychiatric hospital. BMC Medical Ethics 25, 111 (2024). https://doi.org/10.1186/s12910-024-01108-x

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Ethics needs empirical input

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