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

Author: Pär Segerdahl (Page 1 of 33)

To philosophize is to soar freely in uncertainty

What would happen if we more often put away our prestigious masks of knowledge and instead freed our sincerest questions? Not only in individual conversations, but also in public. How would our voices sound if we openly gave ourselves time to wait for clarity? What would philosophy sound like in a society that does not normally allow time for reflection? That is the question in this little post.

A long time ago, I heard a TV conversation with a few experts around the table. I do not remember what the conversation was about. That I still think about it, is due to one of the participants, Anna Christensen (1936-2001), Sweden’s first female professor of law. The deep sincerity in her way of speaking made a strong impression on me. If philosophy is born wherever people think for themselves, then I want to say that it was born in Anna Christensen, whose voice in my ears sounded heavenly free and independent. Perhaps it is no coincidence that this birth of free thinking occurred in a male labyrinth, which hardly gave a woman any leeway. Faced with the relentless walls of the labyrinth, there is no choice but to find freedom at the source: in oneself. The freedom of the powerful in the labyrinth cannot be compared to the freedom from the labyrinth. Anna Christensen’s voice was free in this greater sense. It came from the vastness outside.

That I remember the TV conversation is also due to the unexpected effect that Anna Christensen’s words had on the pleasant conversation between experts, under the competent leadership of the anchor man. The male experts enjoyed each other’s company. Everything they said was oriented towards the others. They resembled an academic men’s choir, who enjoyed singing their songs of knowledge a little more publicly than usual, in the spotlight. My impression was that Anna Christensen did not really orient herself towards the others or towards the songs they sang. She orientated herself towards the question, which she had probably thought about herself and which she now turned her attention to, while she heard the others relate to each other by alternately singing what they thought they knew about the predetermined theme. Once she got the opportunity to speak, time stopped. All the thought patterns that had kept the TV conversation going stopped. The whole 20th century stopped for a moment and someone started thinking for herself. The words were free from the mental patterns that governed the conversation. They came from a calmer place, from a simpler place, where we see more clearly because we do not stir up intellectual dust. When Anna Christensen had said what needed to be said, it became completely silent in the studio. How do you continue an easy studio conversation when someone has put an end to time itself?

To make the conversation flow again, to revive the 20th century, the anchor man had to say something expected, reconnect the conversation to familiar mental patterns, and stir up some intellectual dust to react to. What a relief that spread among the dumbfounded participants in the studio! At last they were back in the labyrinth, in the movement of time, where there were thought patterns to follow. This stopping and restarting of humanly organized time was repeated every time Anna Christensen spoke.

Anna Christensen may not have changed the 20th century, but she could halt its mechanical repetition of mental patterns within herself. She could stop and wait for clarity. What significance do pensive voices like hers have when they find their way into the present? I continue to soar in the uncertainty of that question, because no one can know what happens when someone dares to wonder and speak completely sincerely.

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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We challenge habits of thought

Dynamic consent: broad and specific at the same time

The challenge of finding an appropriate way to handle informed consent to biobank research is big and has often been discussed here on the Ethics Blog. Personal data and biological samples are collected and saved for a long time to be used in future research, for example, on how genes and the environment interact in various diseases. The informed consent to research is for natural reasons broad, because when collecting data and samples it is not yet possible to specify which future research studies the material will be used in.

An unusually clear and concise article on biobank research presents a committed approach to the possible ethical challenges regarding broad consent. The initial broad consent to research is combined with clearly specified strong governance and oversight mechanisms. The approach is characterized also by continuous communication with the research participants, through which they receive updated information that could not be given at the time of the original consent. This enables participants to stay specifically informed and make autonomous choices about their research participation through time.

The model is called dynamic consent. This form of consent can be viewed as broad and specific at the same time. The article describes experiences from a long-term biobank study in South Tyrol in Italy, the CHRIS study, where dynamic consent is implemented since 2011. The model is now used to initiate the first follow-up phase, where participants are contacted for further sampling and data collection in new studies.

The article on dynamic consent in the CHRIS study is written by Roberta Biasiotto, Peter P. Pramstaller and Deborah Mascalzoni. In addition to describing their experiences of dynamic consent, they also respond to common objections to the model, for example, that participants would be burdened by constant requests for consent or that participants would have an unreasonable influence over research.

I would like to emphasize once again the clarity of the article, which shows great integrity and courage. The authors do not hide behind a facade of technical terminology and jargon, so that one must belong to a certain academic discipline to understand. They write broadly and specifically at the same time, I am inclined to say! This inspires confidence and indicates how sincerely one has approached the ethical challenges of involving and communicating with research participants in the CHRIS study.

Pär Segerdahl

Written by…

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

Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah. 2021. The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication. Part of BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, pp. 277-287. http://dx.doi.org/10.15168/2284-4503-786

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We care about communication

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

To change the changing human

Neuroscience contributes to human self-understanding, but it also raises concerns that it might change humanness, for example, through new neurotechnology that affects the brain so deeply that humans no longer are truly human, or no longer experience themselves as human. Patients who are treated with deep brain stimulation, for example, can state that they feel like robots.

What ethical and legal measures could such a development justify?

Arleen Salles, neuroethicist in the Human Brain Project, argues that the question is premature, since we have not clarified our concept of humanness. The matter is complicated by the fact that there are several concepts of human nature to be concerned about. If we believe that our humanness consists of certain unique abilities that distinguish humans from animals (such as morality), then we tend to dehumanize beings who we believe lack these abilities as “animal like.” If we believe that our humanity consists in certain abilities that distinguish humans from inanimate objects (such as emotions), then we tend to dehumanize beings who we believe lack these abilities as “mechanical.” It is probably in the latter sense that the patients above state that they do not feel human but rather as robots.

After a review of basic features of central philosophical concepts of human nature, Arleen Salles’ reflections take a surprising turn. She presents a concept of humanness that is based on the neuroscientific research that one worries could change our humanness! What is truly surprising is that this concept of humanness to some extent questions the question itself. The concept emphasizes the profound changeability of the human.

What does it mean to worry that neuroscience can change human nature, if human nature is largely characterized its ability to change?

If you follow the Ethics Blog and remember a post about Kathinka Evers’ idea of a neuroscientifically motivated responsibility for human nature, you are already familiar with the dynamic concept of human nature that Arleen Salles presents. In simple terms, it can be said to be a matter of complementing human genetic evolution with an “epigenetic” selective stabilization of synapses, which every human being undergoes during upbringing. These connections between brain cells are not inherited genetically but are selected in the living brain while it interacts with its environments. Language can be assumed to belong to the human abilities that largely develop epigenetically. I have proposed a similar understanding of language in collaboration with two ape language researchers.

Do not assume that this dynamic concept of human nature presupposes that humanness is unstable. As if the slightest gust of wind could disrupt human evolution and change human nature. On the contrary, the language we develop during upbringing probably contributes to stabilizing the many human traits that develop simultaneously. Language probably supports the transmission to new generations of the human forms of life where language has its uses.

Arleen Salles’ reflections are important contributions to the neuroethical discussion about human nature, the brain and neuroscience. In order to take ethical responsibility, we need to clarify our concepts, she emphasizes. We need to consider that humanness develops in three interconnected dimensions. It is about our genetics together with the selective stabilization of synapses in living brains in continuous interaction with social-cultural-linguistic environments. All at the same time!

Arleen Salles’ reflections are published as a chapter in a new anthology, Developments in Neuroethics and Bioethics (Elsevier). I am not sure if the publication will be open access, but hopefully you can find Arleen Salles’ contribution via this link: Humanness: some neuroethical reflections.

The chapter is recommended as an innovative contribution to the understanding of human nature and the question of whether neuroscience can change humanness. The question takes a surprising turn, which suggests we all together have an ongoing responsibility for our changing humanness.

Pär Segerdahl

Written by…

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

Arleen Salles (2021). Humanness: some neuroethical reflections. Developments in Neuroethics and Bioethics. https://doi.org/10.1016/bs.dnb.2021.03.002

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We think about bioethics

New dissertation on patient preferences in medical approvals

During the spring, several doctoral students at CRB successfully defended their dissertations. Karin Schölin Bywall defended her dissertation on May 12, 2021. The dissertation, like the two previous ones, reflects a trend in bioethics from theoretical investigations to empirical studies of people’s perceptions of bioethical issues.

An innovative approach in Karin Schölin Bywall’s dissertation is that she identifies a specific area of ​​application where the preference studies that are increasingly used in bioethics can be particularly beneficial. It is about patients’ influence on the process of medical approval. Patients already have such an influence, but their views are obtained somewhat informally, from a small number of invited patients. Karin Schölin Bywall explores the possibility of strengthening patients’ influence scientifically. Preference studies can give decision-makers an empirically more well-founded understanding of what patients actually prefer when they weigh efficacy against side effects and other drug properties.

If you want to know more about the possibility of using preference studies to scientifically strengthen patients’ influence in medical approvals, read Karin Schölin Bywall’s dissertation: Getting a Say: Bringing patients’ views on benefit-risk into medical approvals.

If you want a concise summary of the dissertation, read Anna Holm’s news item on our website: Bringing patients’ views into medical approvals.

Pär Segerdahl

Written by…

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

Schölin Bywall, K. (2021) Getting a Say: Bringing patients’ views on benefit-risk into medical approvals. [Dissertation]. Uppsala University.

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We want solid foundations

Can you be cloned?

Why can we feel metaphysical nausea at the thought of cloned humans? I guess it has to do with how we, without giving ourselves sufficient time to reflect, are captivated by a simple image of individuality and cloning. The image then controls our thinking. We may imagine that cloning consists in multiplying our unique individuality in the form of indistinguishable copies. We then feel dizzy at the unthinkable thought that our individual selves would be multiplied as copies all of which in some strange way are me, or cannot be distinguished from me.

In a contribution to a philosophical online magazine, Kathinka Evers diagnoses this metaphysical nausea about cloning. If you have the slightest tendency to worry that you may be multiplied as “identical copies” that cannot be distinguished from you, then give yourself the seven minutes it takes to read the text and free yourself from the ailment:

“I cannot be cloned: the identity of clones and what it tells us about the self.”

Of course, Kathinka Evers does not deny that cloning is possible or associated with risks of various kinds. She questions the premature image of cloning by giving us time to reflect on individual identity, without being captivated by the simple image.

We are disturbed by the thought that modern research in some strange way could do what should be unthinkable. When it becomes clear that what we are worried about is unthinkable, the dizziness disappears. In her enlightening diagnosis of our metaphysical nausea, Kathinka Evers combines philosophical reflection with illuminating facts about, among other things, genetics and personality development.

Give yourself the seven minutes it takes to get rid of metaphysical nausea about cloning!

Pär Segerdahl

Written by…

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

This post in Swedish

Thinking about thinking

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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We recommend readings

An unusually big question

Sometimes the intellectual claims on science are so big that they risk obscuring the actual research. This seems to happen not least when the claims are associated with some great prestigious question, such as the origin of life or the nature of consciousness. By emphasizing the big question, one often wants to show that modern science is better suited than older human traditions to answer the riddles of life. Better than philosophy, for example.

I think of this when I read a short article about such a riddle: “What is consciousness? Scientists are beginning to unravel a mystery that has long vexed philosophers.” The article by Christof Koch gives the impression that it is only a matter of time before science determines not only where in the brain consciousness arises (one already seems have a suspect), but also the specific neural mechanisms that give rise to – everything you have ever experienced. At least if one is to believe one of the fundamental theories about the matter.

Reading about the discoveries behind the identification of where in the brain consciousness arises is as exciting as reading a whodunit. It is obvious that important research is being done here on the effects that loss or stimulation of different parts of the brain can have on people’s experiences, mental abilities and personalities. The description of a new technology and mathematical algorithm for determining whether patients are conscious or not is also exciting and indicates that research is making fascinating progress, which can have important uses in healthcare. But when mathematical symbolism is used to suggest a possible fundamental explanation for everything you have ever experienced, the article becomes as difficult to understand as the most obscure philosophical text from times gone by.

Since even representatives of science sometimes make philosophical claims, namely, when they want to answer prestigious riddles, it is perhaps wiser to be open to philosophy than to compete with it. Philosophy is not just about speculating about big questions. Philosophy is also about humbly clarifying the questions, which otherwise tend to grow beyond all reasonable limits. Such openness to philosophy flourishes in the Human Brain Project, where some of my philosophical colleagues at CRB collaborate with neuroscientists to conceptually clarify questions about consciousness and the brain.

Something I myself wondered about when reading the scientifically exciting but at the same time philosophically ambitious article, is the idea that consciousness is everything we experience: “It is the tune stuck in your head, the sweetness of chocolate mousse, the throbbing pain of a toothache, the fierce love for your child and the bitter knowledge that eventually all feelings will end.” What does it mean to take such an all-encompassing claim seriously? What is not consciousness? If everything we can experience is consciousness, from the taste of chocolate mousse to the sight of the stars in the sky and our human bodies with their various organs, where is the objective reality to which science wants to relate consciousness? Is it in consciousness?

If consciousness is our inevitable vantage point, if everything we experience as real is consciousness, it becomes unclear how we can treat consciousness as an objective phenomenon in the world along with the body and other objects. Of course, I am not talking here about actual scientific research about the brain and consciousness, but about the limitless intellectual claim that scientists sooner or later will discover the neural mechanisms that give rise to everything we can ever experience.

Pär Segerdahl

Written by…

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

Christof Koch, What Is Consciousness? Scientists are beginning to unravel a mystery that has long vexed philosophers, Nature 557, S8-S12 (2018) https://doi.org/10.1038/d41586-018-05097-x

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We transgress disciplinary borders

Fact resistance and human dissatisfaction with reality

What exactly is fact resistance? It is often defined as a tendency not to be influenced by facts that contradict our own beliefs. Or as a tendency to hold beliefs even though there is no evidence for them. To make fact resistance more humanly comprehensible, I would like to draw attention to a common way of expressing questions, which may remind us of how often we resist reality.

Have you noticed that many why-questions do not express any sincere wonder? We ask the questions to express our dissatisfaction with reality. Why does it always have to rain on Midsummer’s Eve? Why do I always have to choose the queue that takes the longest? Already in the question, reality is blamed. Already in the question, we resist reality. There must be something fundamentally wrong with the Swedish weather! I have to be an idiot who always chooses the wrong queue!

Fact resistance is probably a deeper human tendency than just a lack of criticism of one’s sources. It is an aspect of our human dissatisfaction with existence. Our why-questions rebel against the universe itself, if I may express myself dramatically. When we ask these questions, we do not expect any clear and reassuring answers, but rather answers that confirm the madness of the world. If I remember correctly, the pessimist Arthur Schopenhauer, who only saw misery everywhere, said that the world is so permeated by misery that only the world itself can be held responsible for the misery. The world must be fundamentally misconstrued. He described the misconstruction of the world in a great philosophical system, which was praised by pessimists around the world.

Imagine what happens when our why-questions are no longer about the midsummer weather or something equally trivial, but about phenomena that frighten and upset many at the same time. Like COVID-19 and pandemic measures. Many dubious claims will be spread as if they were certain, since already the questions are certain that something must be fundamentally wrong. I believe that fact resistance becomes more comprehensible if we see how humanly instinctively we rebel against reality.

Is not this common resistance pattern aroused even when we want to fight fact resistance? “Why do people spread so many obvious lies on social media? There must be something fundamentally wrong here, massive training efforts are needed!” Fact resistance is so close to us that even our concept of the pattern tends to get stuck in the pattern.

The amazing thing is that when we see the pattern in ourselves, fact resistance becomes more comprehensible as a fact and therefore easier to acknowledge without outbursts of upset why-questions. We see the pattern in a reconciling light. The fantastic thing, then, is that when we become forgiving, we no longer react against fact resistance. We are out of the game, free from our own fact resistance. Only then can we handle fact resistance wisely, without recreating it in our opposition to it.

Pär Segerdahl

Written by…

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

This post in Swedish

We challenge habits of thought

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

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