The Ethics Blog

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

Tag: care ethics

Existential conversations in palliative care

Sick man in bed. Photo by Kampus Production on Pexels.
25 March, 2025 / / 1 Comment

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

Female nurse resting on a sofa with her face towards the ceiling, and her eyes shut. Photo: Cedric Fauntleroy, from Pexels.
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

Four people sitting at a table, and a women in a black shirt sitting in front of a laptop. Photo: Cottonbro, from Pexels.
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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End-of-life care: ethical challenges experienced by critical care nurses

Hospital machine
11 June, 2024 / / 1 Comment

In an intensive care unit, seriously ill patients who need medical and technical support for central bodily functions, such as breathing and circulation, are monitored and treated. Usually it goes well, but not all patients survive, despite the advanced and specialized care. An intensive care unit can be a stressful environment for the patient, not least because of the technical equipment to which the patient is connected. When transitioning to end-of-life care, one therefore tries to create a calmer and more dignified environment for the patient, among other things by reducing the use of life-sustaining equipment and focusing on reducing pain and anxiety.

The transition to end-of-life care can create several ethically challenging situations for critical care nurses. What do these challenges look like in practice? The question is investigated in an interview study with nurses at intensive care units in a Swedish region. What did the interviewees say about the transition to end-of-life care?

A challenge that many interviewees mentioned was when life-sustaining treatment was continued at the initiative of the physician, despite the fact that the nurses saw no signs of improvement in the patient and judged that the probability of survival was very low. There was concern that the patient’s suffering was thus prolonged and that the patient was deprived of the right to a peaceful and dignified death. There was also concern that continued life-sustaining treatment could give relatives false hope that the patient would survive, and that this prevented the family from supporting the patient at the end of life. Other challenges had to do with the dosage of pain and anti-anxiety drugs. The nurses naturally sought a good effect, but at the same time were afraid that too high doses could harm the patient and risk hastening death. The critical care nurses also pointed out that family members could request higher doses for the patient, which increased the concern about the risk of possibly shortening the patient’s life.

Other challenges had to do with situations where the patient’s preferences are unknown, perhaps because the patient is unconscious. Another challenge that was mentioned is when conscious patients have preferences that conflict with the nurses’ professional judgments and values. A patient may request that life-sustaining treatment cease, while the assessment is that the patient’s life can be significantly extended by continued treatment. Additional challenging situations can arise when the family wants to protect the patient from information that death is imminent, which violates the patient’s right to information about diagnosis and prognosis.

Finally, various situations surrounding organ donation were mentioned as ethically challenging. For example, family members may oppose the patient’s decision to donate organs. It may also happen that the family does not understand that the patient suffered a total cerebral infarction, and believes that the patient died during the donation surgery.

The results provide a good insight into ethical challenges in end-of-life care that critical care nurses experience. Read the article here: Critical care nurses’ experiences of ethical challenges in end-of-life care.

Pär Segerdahl

Written by…

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

Palmryd L, Rejnö Å, Alvariza A, Godskesen T. Critical care nurses’ experiences of ethical challenges in end-of-life care. Nursing Ethics. 2024;0(0). doi:10.1177/09697330241252975

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Ethics needs empirical input

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Dignity in a nursing home when the body fails

Elderly person with a golden ring on their finger.
6 September, 2022 / / 1 Comment

The proportion of elderly people in the population is increasing and the tendency is to provide care for the elderly at home as long as possible. Nursing homes are therefore usually inhabited by the very weakest, with several concurrent illnesses and often in need of palliative care.

Living a dignified life in old age naturally becomes more difficult when the body and mind fail and you become increasingly dependent on others. As a nursing home resident, it can be close at hand to feel unworthy and a nuisance. And as staff, in stressful situations it can happen that you sometimes thoughtlessly treat the elderly in an undignified manner.

Preserving the dignity of the elderly is an important responsibility of nursing homes. But what does reality look like for the residents? How does the care provider take responsibility for dignified care? And is it reasonable to regard the residents as passive recipients of dignified care? Isn’t such a view in itself undignified?

These questions suggest that we need to look more closely at the reality of the elderly in a nursing home. Bodil Holmberg has done this together with Tove Godskesen, in a study published in the journal BMC Geriatrics. Participatory observations and interviews with residents and staff at a nursing home in Sweden provided rich material to analyse and reflect on.

As expected, it was found that the major threat to the residents’ dignity was precisely how the body fails at a faster rate. This created fear of becoming increasingly dependent on others as well as feelings of anguish, loneliness and meaninglessness. However, it was also found that the elderly themselves had a repertoire of ways to deal with their situation. Their self-knowledge enabled them to distinguish between what they could still do and what they had to accept. In addition, aging itself gave rise to new challenges to engage with. One of the residents proudly told how they had developed a way to pick up the grabbing tong when it had been dropped, by sliding deeper into the wheelchair to reach the floor. Teaching new staff how to carry out intricate medical procedures also gave rise to pride.

As aging challenges a dignified life, older people thus develop self-knowledge and a whole repertoire of ways to maintain a dignified life. This is an essential observation that the authors make. It shows the importance of not considering nursing home residents as passive recipients of dignified care. If I understand the authors correctly, they suggest that we could instead think in terms of assisting older people when their bodies fail: assisting them in their own attempts to lead dignified lives.

Participatory observations and interviews can help us see reality more clearly. The method can clarify both the expected and the unexpected. Read the pertinent article here: Dignity in bodily care at the end of life in a nursing home: an ethnographic study

The authors also found examples of undignified treatment of the residents. In another article, also from this year, they discuss barriers and facilitators of ethical encounters at the end of life in a nursing home. Reference to the latter article can be found below.

Pär Segerdahl

Written by…

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

Holmberg, B., Godskesen, T. Dignity in bodily care at the end of life in a nursing home: an ethnographic study. BMC Geriatr 22, 593 (2022). https://doi.org/10.1186/s12877-022-03244-8

Holmberg, B., Godskesen, T. Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study. BMC Palliat Care 21, 134 (2022). https://doi.org/10.1186/s12904-022-01024-0

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Ethics needs empirical input

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We need to care about care ethics

hospital sign
7 December, 2021 / / 1 Comment

At some point in our lives, we will all need to be cared for. When that happens, it is of course crucial that the people who care for us have the medical competence and skills required to diagnose and treat us. But we also need professional care to be nursed back to health. Providing care requires both medical and ethical skills, for example when weighing risks against the benefits of treatment and when giving information or encouraging patients to follow advice and instructions. Patients also need to be given tools and space to exercise their autonomy when making decisions about their own treatment and care. As a researcher in care ethics, this is the kind of questions that I ponder: questions that matter to us throughout life. The one who brings us into this world will need care during pregnancy, birth and after delivering the baby. Newborns, premature babies and children that are injured during birth need to be cared for, together with their families. As a child, you might have an ear infection, or need patching up after falling off your bike. As adults, illness will visit us on several occasions, and being cared for at the end of life is of utmost importance. We often face difficult choices in relation to health, sickness and treatment and need support from health care professionals in order to make autonomous decisions. Care ethics encompasses all of these ethical dilemmas.

The ethical aspects of the encounter between the health care professional and the patient are at the centre of care ethics. This encounter is always asymmetrical. How can we make it a respectful encounter, given that professionals have more knowledge and patients are put in a dependent and exposed position? As individual patients in health care, we are not on home ground, while the health care professional is in a familiar work environment and practices their profession. This asymmetry places great ethical demands on how the meeting between patient and professional takes place. It is precisely in this encounter that the dilemmas of health care ethics arise. However, as a care ethics researcher, I also ask questions about how health care is organised and whether that enables good and ethically acceptable encounters.

Those who organise the health care system and the people providing care need to know something about what is best for the patient. To be able to offer concrete guidance on how to educate, budget, plan and perform care, the ethical dilemmas that arise in health care encounters need to be examined in a structured way. Care ethics offers both theoretical and empirical tools to do just that. The theoretical framework builds in part on traditional principle-based ethics, and in part on the ethics of care. In this tradition, nursing and care are seen as both value and practice. The practice includes moral values, but also gives rise to norms that can guide moral action by rejecting acts of violence and dominance towards other human beings. The ethics of care looks to the needs of the “concrete other.” It considers us as individuals in mutually dependent relationships with one another. It also ascribes emotions a moral value. But not just any emotions; mainly those that are connected to nursing and caring for others, for example compassion and empathy.

Over the years, the care ethics group at the Centre for Research Ethics and Bioethics (CRB) have worked with several different questions. Mona Petterson wrote her PhD thesis on how doctors and nurses view do-not-resuscitate orders. Amal Matar’s thesis covered ethical issues in relation to genetic screening before pregnancy, also known as preconception genetic screening. We have also worked with caregivers’ experiences of health care prioritization, how parents and children view vaccination ethics, and equal access to health care. Our approach to care ethics is rooted in clinical practice and our studies are mainly informed by empirical ethics, where ethical and philosophical reasoning is related to qualitative and quantitative empirical research. Our goal is to contribute concrete clinical guidance on how to manage the ethical dilemmas that health care is faced with. Given the fact that we are all born, and live and die, it is also a given that we all will require care at one point or another. In order to enable health care policy makers and administrators to make decisions that benefit patients, talking about ethics in terms of medical risk versus benefit is not enough. As patients, we are human beings in an asymmetrical relationship where we are dependent on the person offering us care. The ethical dilemmas that arise from that relationship matter for how we perceive the treatment and care we receive. They also affect the extent to which we can exercise our autonomy.

Anna T. Höglund

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Anna T. Höglund, who is Professor of Care Ethics and Gender Studies at Uppsala University’s Centre for Research Ethics & Bioethics.

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In dialogue with patients

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