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

Category: In the profession (Page 2 of 5)

Ethics Council at Uppsala Region: Healthcare workers shouldn’t have to report undocumented patients

Last week, the Ethics Council in Region Uppsala sent a letter to the Ministry of Justice where the Council dissociates itself from a proposal in the Tidö Agreement, a political agreement between four parties in the Swedish Parliament. The part of the agreement that the Ethics Council dissociates itself from is a proposed obligation for healthcare professionals to report patients who are undocumented migrants to authorities.

The Ethics Council writes that such a duty would be in conflict with both international and national conventions and laws. It is also contrary to the ethics of all professions in healthcare and would entail a serious threat to patient safety. Healthcare workers have not signed up to enforce decisions on expulsion or refusal of entry. They are assigned to, and their expertise relates to, the assessment of patients’ needs and to provide the best available care with those needs as a starting point.

In a reflection on the Swedish healthcare legislation, the Ethics Council also writes that an obligation to report undocumented migrants is contrary to the principle of human dignity. The principle states that all human beings have equal value and the same right to care. This includes everyone, regardless of whether we have a right to stay in Sweden or not.

The Chair of the Ethics Council, Niklas Juth, today publishes a post in our Swedish language version of this blog which also contains the entire letter sent to the Ministry of Justice. If you read Swedish, you can find his blog post here: Etikrådet i Region Uppsala tar avstånd från förslaget om anmälningsplikt för vårdpersonal.

Pär Segerdahl

Written by…

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

We recommend readings

Ethical challenges when children with cancer are recruited for research

Cancer is a common cause of death among children, but improved treatments have significantly increased survival, especially in high-income countries. A prerequisite for this development is research.

When we think of a hospital, we think mainly of the care given to patients there. But care and research are largely developed together in the hospitals. Treatments given in the hospitals are tested in research carried out in the hospitals. This overlap of care and research in the same setting creates ethical challenges. Not least because it can be difficult to see and maintain the differences when, as I said, the activities overlap.

Kajsa Norbäck, PhD student at CRB, investigates in an interview study Swedish healthcare professionals’ perceptions and experiences of ethical challenges when children with cancer are recruited for research in the hospitals where they are patients. Research is needed for future childhood cancer care, but what are the challenges when approaching children with cancer and their parents with the question of research participation?

The interview material is rich and difficult to summarize in a blog post, but I want to highlight a few findings that particularly impressed me. I recommend those interested to take the time to read the entire article in peace and quiet. Interview studies provide a living direct contact with reality from the perspective of the interviewees. Kajsa Norbäck writes that interview studies give us informative examples of ethical challenges. Such examples are needed to give the ethical reflection concreteness and grounding in reality.

The interviewed healthcare professionals particularly emphasized the importance of establishing a trusting relationship with the family. Only when you have such a relationship does it make sense to discuss possible research participation. Personally, I cannot help but interpret it as meaning that the care relationship with patient and family must be established first. It is within the framework of the care relationship that possible research participation can be discussed in a trusting manner. But trust can also be a dilemma, the interviews show. The interviewees stated that many families had so much trust in healthcare and research that it could feel too easy and predictable to get consent for research participation. They also had the impression that parents could sometimes give consent to research out of fear of not having done everything they could to save the child, as if research was a last chance to get effective care.

The challenge of managing the overlap of care and research also extends to the professional role of the physician. Physicians have a care responsibility, but since the care they can offer rests on research, they also feel a research responsibility: they feel a responsibility to recruit research participants from among their patients. This dual responsibility can naturally create conflicts of interest, of which they give informative examples in the interviews.

In the middle of this force field of challenges we have the child, who may have difficulty making itself heard, perhaps because many of us have difficulty being a listener. Here is what one of the interviewees says: “We often talk about informing and I think that’s a strange word. I think the greatest competence is to listen.” There is a lot to listen to in Kajsa Norbäck’s interview study as well, more than I can reproduce in a blog post. Read her article here: Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences.

Pär Segerdahl

Written by…

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

Norbäck, K., Höglund, A.T., Godskesen, T. and Frygner-Holm, S. Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences. BMC Medical Ethics 24, 23 (2023). https://doi.org/10.1186/s12910-023-00901-4

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Ethics needs empirical input

The branding of psychotherapy and responsible practice

Clinical psychologists receive degrees from universities, training them to effectively apply psychotherapy programs in psychiatry settings. But after graduation, whose responsibility is it to train, or perhaps re-train, clinical psychologists to practice “proper” therapy? Is it the responsibility of the owner of a three-letter branded protocol, such as DBT (Dialectical Behavior Therapy), SFT (Schema Focused Therapy) or MBSR (Metacognition Based Stress Reduction)? Or is it the responsibility of the health care systems that provide treatment? Perhaps they should ensure that a psychologist’s training is regularly updated, as in most other clinical professions?

As a clinical psychologist myself, with experience from practice in France, I want to address some challenges that I have experienced and reflected upon as I have tried to develop my own way of practicing therapy.

Medical training updates are widely encouraged for psychiatrists via the counting of credits for attending certified courses or international conferences (Continuing Medical Education Points). However, when it comes to clinical psychologists, the psychiatrists’ side-kicks offering psychotherapy treatment, there is no such unified system. Psychotherapy is in essence social work, and the success depends on the relationship between the therapist and the patient. But in many countries, particularly in the English speaking world, there is a tendency to brand specific therapeutic programs, such as the commonly known cognitive behavioral therapy, CBT, or versions of it such as dialectic behavioral therapy, DBT. Being “branded” as a psychotherapist comes with the advantage of being recurrently involved in seminars, training and follow-ups on our practice. But as a therapist, you are offering more than a program, you are offering years of experience and training. It is neither practical nor possible to “label” every little piece of training that made your practice look the way it does now. Yet psychotherapists face an entire branding system, with names such as DBT (Dialectical Behavioral Therapy), TFT (Transference Focused Therapy), SFT (Schema Focused Therapy) and MIT (Metacognition and Insight Therapy). All these names give structure, labels to refer to, which help both patients and colleagues to identify what happens in the therapy. But at the same time we might be confusing everyone involved with a jargon of acronyms. Depending on the cultural context, even using the word “client” instead of “patient” can be seen as subversive. The very idea that psychotherapy could be branded may appear strange and unusual. Are we considering the values at stake? Might not branding shift focus, from values of care towards economic considerations (such as selling your brand)? On the surface, it looks reasonable and as an approach that supports a fair distribution of care.

As an author of a CBT protocol myself, using a much longer acronym, ECCCLORE, I have been forced to question the underlying dynamic of naming or branding a particular kind of psychotherapy.  Like most of the CBT protocols, the effectiveness is in the structure of the protocol. Although I wanted to protect that structure, I did not want to rule out potential changes or improvements, but to make the protocol open to practitioners’ own experiences of using it with their patients. Therefore, I always encourage my students and colleagues to integrate the protocol with their own experiences, strengths and discoveries along the way.

Why? Well, because in using a protocol to engage with people in the intimate setting that psychotherapy is, we must also examine our values as caregivers, always considering the ethical principles of non-malevolence, respect and justice. And just as you must find your way to practice any branded therapy, you must find your way to observe these ethical principles in your work.

I was not harming my patients with the ECCCLORE protocol, but I created something that requires training to apply. Otherwise, like any mechanically applied protocol, it could potentially harm patients. Can that risk be overcome by adding another branded sub-protocol? There are already names all over the place in the CBT world. We all use “branded skills” such as Beck’s Columns and Padesky’s Polygram, and they are free to use, but they are just names for very commonly used tools, which we must again learn to use in practice.

When you dive into the specificity of “certified programs,” things start to become even more complicated. If I did not brand my project, anyone could use (or abuse) the ECCCLORE brand. For example, in France one needs to declare intellectual property in order to protect the project or research results from being stolen (as the research outcome is not considered the intellectual property of the researcher, as it is in Sweden). This means that anyone can use the name, even if it is unrelated to the CBT framework. But by acknowledging the creator’s intellectual property, it is possible for me to brand my own research protocol and evidence-based program, preventing misuse of the methods. But is it helping the replication and dissemination of the protocol? And if my ultimate goal is to offer the protocol to help as many patients as possible, is branding it the best solution?

I sensed an affinity between my own reflections and recent research that questioned the ethical guidelines for social justice work in psychology and outlined the need for social justice ethics. When I thought about branded CBT programs, I recognized ethical risks everywhere. If you pay a lot of money to be trained in Program A, you expect to be recognized as a Program A practitioner, and you expect to benefit from the specific expertise that you earned. Is it fair then to offer such services at premium prices? Or to refuse to have Program A training delivered to most of the clinical psychologists? Does it make the program more affordable and accessible to the patients in need of it? Is a society fair where most of the latest advances are not available to everyone, but only in private practice? Well, there are of course economic considerations, but on the clinical level it is not easy to sort out the pros and cons of these “acronymized” psychotherapies.

As a treatment developer, I do recognize that having a name to identify the program really helps. The social component of psychotherapy is known to be an important effectiveness factor. This was the case also for me. Avoiding any stigmatizing name of my therapeutic group, such as “Borderline Group,” was a move toward justice, respect and non-malevolence. I decided to create the acronym together with the first patient group, which helped create motivation and reflected the collaborative process. Because in therapy, it is the patients who have the most at stake. Along the way, I also had a chance to be trained in a manual-based psychotherapy, and I saw the advantages, as a clinician, to have a tribe supporting me as I entered their group. Branded evidence-based psychotherapies are organizing trainings and conferences, which offer many resources for their practitioners. They build up more and more specific results around subgroups of patients, and take responsibility for the full functioning of their practitioners.

Branded psychotherapies are probably here to stay, but I wanted to highlight some practical and ethical challenges that I have experienced and reflected upon as a treatment developer. Let me conclude with one final consideration about the future. In recent research on the effectiveness of personality disorder psychotherapy, the main factors were found to be the therapeutic attitude (active and collaborative) and the clarity of the protocol (the underlying theories). Future research may further investigate whether the branding of psychotherapies, which can be confusing, may also contribute to these factors.

Sylvia Martin

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

Sylvia Martin. (2022) Le programme ECCCLORE: Une nouvelle approche du trouble borderline. Deboeck Supérior.

In dialogue with patients

Dignity in a nursing home when the body fails

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

We need to care about care ethics

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

Written by…

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

Challenges in end-of-life care of people with severe dementia

In order to improve care, insight is needed into the challenges that one experiences in the daily care work. One way to gain insight is to conduct interview studies with healthcare staff. The analysis of the interviews can provide a well-founded perspective on the challenges, as they are experienced from within the practices.

In Sweden, people with severe dementia usually die in nursing homes. Compared to the specialised palliative care of cancer patients, the general care of people with severe dementia at the end of life is less advanced, with fewer opportunities to relieve pain and other ailments. To gain a clearer insight into the challenges, Emma Lundin and Tove Godskesen conducted an interview study with nurses in various nursing homes in Stockholm. They approached the profession that is largely responsible for relieving pain and other ailments in dying severely demented people.

The content of the interviews was thematically analysed as three types of challenges: communicative, relational and organisational. The communicative challenges have to do with the difficulty of assessing type of pain and pain level in people with severe dementia, as they often cannot understand and answer questions. Assessment becomes particularly difficult if the nurse does not already know the person with dementia and therefore cannot assess the difference between the person’s current and previous behaviour. Communication difficulties also make it difficult to find the right dose of pain medications. In addition, they make it difficult to assess whether the person’s behaviour expresses pain or rather anxiety, which may need other treatment.

Visiting relatives can often help nurses interpret the behaviour of the person with dementia. However, they can also interfere with nurses’ work to relieve pain, since they can have different opinions about the use of, for example, morphine. Some relatives want to increase the dose to be sure that the person with dementia does not suffer from pain, while others are worried that morphine may cause death or create addiction.

The organisational challenges have to do in part with understaffing. The nurses do not have enough time to spend with the demented persons, who sometimes die alone, perhaps without optimal pain relief. Furthermore, there is often a lack of professional competence and experience at the nursing homes regarding palliative care for people with severe dementia: it is a difficult art.

The authors of the article argue that these challenges point to the need for specialist nurses who are trained in palliative care for people with dementia. They further ague that resources and strategies are needed to inform relatives about end-of-life care, and to involve them in decision-making where they can represent the relative. Relatives may need to be informed that increased morphine doses are probably not due to drug addiction. Rather, they are due to the fact that the need for pain relief increases as more and more complications arise near death. If the intention is to relieve symptoms at the end of life, you may end up in a situation where large doses of morphine need to be given to relieve pain, despite the risk to the patient.

If you want a deeper insight into the challenges, read the article in BMC Nursing: End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes.

Pär Segerdahl

Written by…

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

Lundin, E., Godskesen, T.E. End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes. BMC Nurs 20, 48 (2021). https://doi.org/10.1186/s12912-021-00566-7

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We like real-life ethics

When established treatments do not help

What should the healthcare team do when established treatments do not help the patient? Should one be allowed to test a so-called non-validated treatment on the patient, where efficacy and side effects have not yet been determined scientifically?

Gert Helgesson comments on this problem in Theoretical Medicine and Bioethics. His comment concerns suggestions from authors who in the same journal propose a specific restrictive policy. They argue that if you want to test a non-validated treatment, you should from the beginning plan this as a research project where the treatment is tested on several subjects. Only in this way do you get data that can form the basis for scientific conclusions about the treatment. Above all, the test will undergo ethical review, where the risks to the patient and the reasons for trying the treatment are carefully assessed.

Of course, it is important to be restrictive. At the same time, there are disadvantages with the specific proposal above. If the patient has a rare disease, for example, it can be difficult to gather enough patients to draw scientific conclusions from. Here it may be more reasonable to allow case reports and open storage of data, rather than requiring ethically approved clinical trials. Another problem is that clinical trials take place under conditions that differ from those of patient care. If the purpose is to treat an individual patient because established treatments do not work, then it becomes strange if the patient is included in a randomized study where the patient may end up in the control group which receives the standard treatment. A third problem is when the need for treatment is urgent and there is no time to approach an ethical review board and await their response. Moreover, is it reasonable that research ethical review boards make treatment decisions about individual patients?

Gert Helgesson is well aware of the complexity of the problem and the importance of being careful. Patients must not be used as if they were guinea pigs for clinicians who want to make quick, prestigious discoveries without undergoing proper research ethical review. At the same time, one can do a lot of good for patients by identifying new effective treatments when established treatments do not work. But who should make the decision to test a non-validated treatment if it is unreasonable to leave the decision to a research ethical board?

Gert Helgesson suggests that such decisions on non-validated treatments can reasonably be made by the head of the clinic, and that a procedure for such decisions at the clinic level should exist. For example, an advisory hospital board can be appointed, which supports discussions and decisions at the clinic level about new treatments. The fact that a treatment is non-validated does not mean that there are no empirical and theoretical reasons to believe that it might work. Making a careful assessment of these reasons is an important task in these discussions and decisions.

I hope I have done justice to Gert Helgesson’s balanced discussion of a complex question: What is a reasonable framework for new non-validated treatments? In some last-resort cases where the need for care is urgent, for example, or the disease is rare, decisions about non-validated treatments should be clinical rather than research ethical, concludes Gert Helgesson. The patient must, of course, consent and a careful assessment must be made of the available knowledge about the treatment.

Pär Segerdahl

Written by…

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

Helgesson, G. What is a reasonable framework for new non-validated treatments?. Theor Med Bioeth 41, 239–245 (2020). https://doi.org/10.1007/s11017-020-09537-6

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Patient integrity at the end of life

When we talk about patient integrity, we often talk about the patients’ medical records and the handling of their personal data. But patient integrity is not just about how information about patients is handled, but also about how the patients themselves are treated. For example, can they tell about their problems without everyone in the waiting room hearing them?

This more real aspect of patient integrity is perhaps extra challenging in an intensive care unit. Here, patients can be more or less sedated and connected to life-sustaining equipment. The patients are extremely vulnerable, in some cases dying. It can be difficult to see the human being for all the medical devices. Protecting the integrity of these patients is a challenge, not least for the nurses, who have close contact with them around the clock (and with the relatives). How do nurses perceive and manage the integrity of patients who end their lives in an intensive care unit?

This important question is examined in an article in the journal Annals of Intensive Care, written by Lena Palmryd, Åsa Rejnö and Tove Godskesen. They conducted an interview study with nurses in four intensive care units in Sweden. Many of the nurses had difficulty defining integrity and explaining what the concept means in the care of dying patients. This is not surprising. Not even the philosopher Socrates would have succeeded in defining integrity. However, the nurses used other words that emphasised respect for the patient and patient-centred attitudes, such as being listening and sensitive to the patient. They also tried to describe good care.

When I read the article, I was struck by how ethically central concepts, such as integrity and autonomy, often obscure reality and paralyse us. Just when we need to see clearly and act wisely. When the authors of the article analyse the interviews with the nurses, they use five categories instead, which in my opinion speak more clearly than the overall concept of integrity does:

  1. Seeing the unique individual
  2. Being sensitive to the patient’s vulnerability
  3. Observing the patient’s physical and mental sphere
  4. Taking into account the patient’s religion and culture
  5. Being respectful during patient encounters

How transparent to reality these words are! They let us see what it is about. Of course, it is not wrong to talk about integrity and it is no coincidence that these categories emerged in the analysis of the conversations with the nurses about integrity. However, sometimes it is perhaps better to refrain from ethically central concepts, because such concepts often hide more than they reveal.

The presentation of the interviews under these five headings, with well-chosen quotes from the conversations, is even more clarifying. This shows the value of qualitative research. In interview studies, reality is revealed through people’s own words. Strangely enough, such words can help us to see reality more clearly than the technical concepts that the specialists in the field consider to be the core of the matter. Under heading (2), for example, a nurse tells of a patient who suffered from hallucinations, and who became anxious when people showed up that the patient did not recognize. One evening, the doctors came in with 15 people from the staff, to provide staff with a report at the patient’s bedside: “So I also drove them all out; it’s forbidden, 15 people can’t stand there, for the sake of the patient.” These words are as clarifying as the action itself is.

I do not think that the nurse who drove out the crowd for the sake of the patient thought that she was doing it “to protect the patient’s integrity.” Ethically weighty concepts can divert our attention, as if they were of greater importance than the actual human being. Talking about patient integrity can, oddly enough, make us blind to the patient.

Perhaps that is why many of Socrates’ conversations about concepts end in silence instead of in definitions. Should we define silence as an ethical concept? Should we arrange training where we have the opportunity to talk more about silence? The instinct to control reality by making concepts of it diverts attention from reality.

Read the qualitative study of patients’ integrity at the end of life, which draws attention to what it really is about.

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. & Godskesen, T.E. Integrity at end of life in the intensive care unit: a qualitative study of nurses’ views. Ann. Intensive Care 11, 23 (2021). https://doi.org/10.1186/s13613-021-00802-y

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We like real-life ethics

Ethical frameworks for research

The word ethical framework evokes the idea of ​​something rigid and separating, like the fence around the garden. The research that emerges within the framework is dynamic and constantly new. However, to ensure safety, it is placed in an ethical framework that sets clear boundaries for what researchers are allowed to do in their work.

That this is an oversimplified picture is clear after reading an inventive discussion of ethical frameworks in neuroscientific research projects, such as the Human Brain Project. The article is written by Arleen Salles and Michele Farisco at CRB and is published in AJOB Neuroscience.

The article questions not only the image of ethical frameworks as static boundaries for dynamic research activities. Inspired by ideas within so-called responsible research and innovation (RRI), the image that research can be separated from ethics and society is also questioned.

Researchers tend to regard research as their own concern. However, there are tendencies towards increasing collaboration not only across disciplinary boundaries, but also with stakeholders such as patients, industry and various forms of extra-scientific expertise. These tendencies make research an increasingly dispersed, common concern. Not only in retrospect in the form of applications, which presupposes that the research effort can be separated, but already when research is initiated, planned and carried out.

This could sound threatening, as if foreign powers were influencing the free search for truth. Nevertheless, there may also be something hopeful in the development. To see the hopeful aspect, however, we need to free ourselves from the image of ethical frameworks as static boundaries, separate from dynamic research.

With examples from the Human Brain Project, Arleen Salles and Michele Farisco try to show how ethical challenges in neuroscience projects cannot always be controlled in advance, through declared principles, values ​​and guidelines. Even ethical work is dynamic and requires living intelligent attention. The authors also try to show how ethical attention reaches all he way into the neuroscientific issues, concepts and working conditions.

When research on the human brain is not aware of its own cultural and societal conditions, but takes them for granted, it may mean that relevant questions are not asked and that research results do not always have the validity that one assumes they have.

We thus have good reasons to see ethical and societal reflections as living parts of neuroscience, rather than as rigid frameworks around it.

Pär Segerdahl

Written by…

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

Arleen Salles & Michele Farisco (2020) Of Ethical Frameworks and Neuroethics in Big Neuroscience Projects: A View from the HBP, AJOB Neuroscience, 11:3, 167-175, DOI: 10.1080/21507740.2020.1778116

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We like real-life ethics

Working online during the pandemic: recommendations from the Human Brain Project

The covid-19 pandemic forced many of us to work online from home. The change contained surprises, both positive and negative. We learned that it is possible to have digital staff meetings, seminars and coffee breaks, and that working from home can sometimes mean less interference than working in the office. We also discovered how much better the office chair and desk are, how difficult it is to try to be professional online from an untidy home, and that working from home often means more interference than working in the office!

The European Human Brain Project (HBP) has extensive experience of collaborating digitally, with regular online meetings. This is how they worked long before the pandemic struck, since the project is a collaboration between more than 100 partner institutions in almost 20 countries, also outside Europe. As part of the project’s investment in responsible research and innovation, special efforts are now being made to digitally include everyone, when so much of the work has moved to the internet.

In the Journal of Responsible Technology, Karin Grasenick and Manuel Guerrero from HBP formulate recommendations based on experiences from the project. Their recommendations concern four areas: How do we facilitate social and family life? How do we reduce stress and anxiety? How do we handle career stages, roles and responsibilities? How do we support team spirit and virtual cooperation?

Read the concise article! You will recognize your work situation and be inspired by the suggestions. Even after the pandemic, online collaboration will occur.

Pär Segerdahl

Written by…

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

Karin Grasenick,  Manuel Guerrero, Responsible Research and Innovation& Digital Inclusiveness during Covid-19 Crisis in the Human Brain Project (HBP), Journal of Responsi-ble Technology(2020), doi: https://doi.org/10.1016/j.jrt.2020.06.001

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