The Ethics Blog

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

Tag: medical ethics

Mobile apps to check symptoms and get recommendations: what do users say?

5 March, 2024 / / 1 Comment

What will you do if you feel sick or discover a rash and wonder what it is? Is it something serious? If you do not immediately contact healthcare, a common first step is to search for information on the internet. But there are also applications for mobiles and online, where users can check their symptoms. A chatbot asks for information about the symptoms. The user then receives a list of possible causes as well as a recommendation, for example to see a doctor.

Because the interaction with the chatbot can bring to mind a visit to the doctor who makes a diagnosis and recommends action, these apps raise questions that may have more to do with these tempting associations than with reality. Will the apps in the future make visiting the doctor redundant and lead to the devaluing of medical professions? Or will they, on the contrary, cause more visits to healthcare because the apps often make such recommendations? Do they contribute to better diagnostic processes with fewer misdiagnoses, or do they, on the contrary, interfere with the procedure of making a diagnosis?

The questions are important, provided they are grounded in reality. Are they? What do users really expect from these symptom checker apps? What are their experiences as users of such digital aids? There are hardly any studies on this yet. German researchers therefore conducted an interview study with participants who themselves used apps to check their symptoms. What did they say when they were interviewed?

The participants’ experiences were not unequivocal but highly variable and sometimes contradictory. But there was agreement on one important point. Participants trusted their own and the doctor’s judgments more than they trusted the app. Although opinions differed on whether the app could be said to provide “diagnoses,” and regardless of whether or not the recommendations were followed, the information provided by the app was considered to be indicative only, not authoritative. The fear that these apps would replace healthcare professionals and contribute to a devaluation of medical professions is therefore not supported in the study. The interviewees did not consider the apps as a substitute for consulting healthcare. Many saw them rather as decision support before possible medical consultation.

Some participants used the apps to prepare for medical appointments. Others used them afterwards to reflect on the outcome of the visit. However, most wanted more collaboration with healthcare professionals about using the apps, and some used the apps because healthcare professionals recommended them. This has an interesting connection to a Swedish study that I recently blogged about, where the participants were patients with rheumatoid arthritis. Some participants in that study had prepared their visits to the doctor very carefully by using a similar app, where they kept logbook of their symptoms. They felt all the more disappointed when they experienced that the doctor showed no interest in their observations. Maybe better planning and collaboration between patient and healthcare is needed regarding the use of similar apps?

Interview studies can provide valuable support for ethical reasoning. By giving us insights into a reality that we otherwise risk simplifying in our thinking, they help us ask better questions and discuss them in a more nuanced way. That the results are varied and sometimes even contradictory is therefore not a weakness. On the contrary, we get a more faithful picture of a whole spectrum of experiences, which do not always correspond to our usually more one-sided expectations. The participants in the German study did not discuss algorithmic bias, which is otherwise a common theme in the ethical debate about AI. However, some were concerned that they themselves might accidentally lead the app astray by giving biased input that expressed their own assumptions about the symptoms. Read the study here: “That’s just Future Medicine” – a qualitative study on users’ experiences of symptom checker apps.

Another unexpected result of the interview study was that several participants discussed using these symptom checker apps not only for themselves, but also for friends, partners, children and parents. They raised their concerns about this, as they perceived health information from family and friends as private. They were also concerned about the responsibility they assumed by communicating the analyzes and recommendations produced by the app to others. The authors argue that this unexpected finding raises new questions about responsibility and that the debate about digital aids related to health and care should be more attentive to relational ethical issues.

Pär Segerdahl

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

Müller, R., Klemmt, M., Koch, R. et al. “That’s just Future Medicine” – a qualitative study on users’ experiences of symptom checker apps. BMC Med Ethics 25, 17 (2024). https://doi.org/10.1186/s12910-024-01011-5

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Medical ethics conference in Uppsala, 10–11 June 2024

19 December, 2023 / / 1 Comment

Since 2022, an annual conference in medical ethics is organized by Swedish universities. The first conference was organized by Lund University and the second by Karolinska Institutet. The next conference will be arranged on 10–11 June 2024 by us at the Centre for Research and Bioethics at Uppsala University. Conference names vary with the host university, our conference in June is thus named UMEC – Uppsala University Medical Ethics Conference.

We welcome researchers in medical ethics broadly conceived from Sweden as well as other countries, and oral presentations must be in English. If you would like to present your work at the conference, you are welcome to submit an abstract no later than March 31, 2024. We are interested in both normative approaches and empirical studies with normative relevance for issues in clinical ethics, public health ethics, research ethics and medical law.

We hope you want to attend the conference. You can find more information about the abstract and presentation as well as about the conference venue and travel options here: UMEC – Uppsala University Medical Ethics Conference.

Please note that the information is still incomplete and that more details will come as we get closer to the conference date.

Pär Segerdahl

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

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How should coercive care be regulated within somatic healthcare?

21 November, 2023 / / 1 Comment

Coercive measures against patients are regularly used in healthcare outside of psychiatry, for example in neurosurgical care. Examples of such measures are belting, boxing gloves, holding patients down, forced medication and hidden medication. It is mostly nurses who carry out these coercive measures. The most common motive for forcing patients is to protect them from harming themselves or others: patients may be confused or aggressive and try to pull out vital ports for intravenous drug administration or abuse staff, often without understanding what they are doing themselves. Because the staff act in a legal and moral gray zone, they often feel moral stress exercising coercion.

How can we regulate coercive care in a way that balances ethically relevant considerations about the measures, so that staff no longer have to act in a gray zone?

Different countries have chosen different paths to regulate coercive care within somatic healthcare. In Sweden, it is in principle illegal to use all forms of coercion without the support of compulsory psychiatric care. An overarching problem in the regulation of coercive care is to ensure that patients with reduced decision-making capacity receive the care they need and at the same time ensure that patients with a sufficient degree of decision-making capacity are not forced into care they do not want. In an article in the Journal of Medical Ethics, Amina Guenna Holmgren and I and two co-authors try to sort out these difficulties. Arguments about justice, trust in healthcare, minimizing harm and respect for autonomy are made for and against different national regulations. We conclude that a regulation that includes an assessment of the patients’ decision-making capacity and takes the patient’s best interests into account is preferable, in contrast to regulations based on psychiatric diagnoses or regulations where there are no legal possibilities to practice coercive care at all within somatic care.

If you want to take a closer look at our reasoning regarding the regulation of restraint in somatic healthcare and evaluate our proposal, you will find the article here: Restraint in somatic healthcare: how should it be regulated?

Niklas Juth

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Niklas Juth, Professor of Clinical Medical Ethics at the Centre for Research Ethics & Bioethics (CRB)

Guenna Holmgren A, von Vogelsang A, Lindblad A, Niklas Juth. Restraint in somatic healthcare: how should it be regulated? Journal of Medical Ethics. Published Online First: 18 October 2023. doi: 10.1136/jme-2023-109240

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

24 October, 2023 / / 0 Comments

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

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

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Does the severity of an illness qualify the moral motivation to act?

18 April, 2023 / / 1 Comment

I have to admit that I had a little trouble cracking the code in the article which I will now try to summarize briefly. I hope that the title I have chosen is not already a misunderstanding. Moral philosophy is not easy, but the subject of the article is urgent so I still want to try.

Illness is generally perceived as something bad, as an evil. If we are to speak in terms of value, we can say that illness has negative value. Individual cases of illness usually create a moral motivation in us to mitigate the ill person’s negative condition. How strong this motivation is depends on several factors, but the severity of the disease is a relevant factor. The motivation to act typically increases with the severity of the disease.

This of course comes as no surprise. The motivation to alleviate a person’s cold is not very strong because a cold is not a severe condition. A runny nose is nothing to complain about. But in the face of more severe conditions such as blood poisoning, diabetes and cancer, the moral drive to act increases. “This condition is very severe” we say and feel that it is very important to act.

So what is the problem that motivates the article? If I am interpreting the authors correctly, the problem is that it is not so easy to convert this obvious use of language into a rule to follow. I recently bought a kettle that came with this warning: “Do not fill the kettle with an excessive amount of water.” The warning is, in a way, self-evident. Of course, you should not fill the kettle with an excessive amount of water! The motivation to pour should have stopped before the water level got excessively high. Even though the language is perfectly obvious, the rule is not as obvious, because when is the water level excessively high? When should we stop pouring?

The problem with the word “severity” is similar, or at least that is my interpretation. “Severity” is an obvious linguistic tool when we discuss illness and the need to do something about it. But at the same time, it is difficult to define the term as a description of when conditions are (more or less) severe and when it is (more or less) motivated to do something about them. Some philosophers have therefore criticized the use of “severity” in discussions about, for example, priority setting in healthcare. The situation would become somewhat paradoxical, since an obviously relevant concept would be excluded because it is unclear how it can be transformed into a description that can be followed as if it were a simple rule.

If I understand the article correctly, the authors want to defend the concept of severity by showing that severity qualifies our moral motivation to act when someone is ill. They do this by describing six other concepts that it is more generally accepted should qualify how morally important it is to do something about a condition, including the concepts of need and lack of well-being. None of the six concepts coincides completely with the concept of severity, but when we try to assess how they affect the need to act, we will often simultaneously assess the severity. And when we assess the severity of an illness, we will often at the same time assess how the illness affects well-being, for example.

The authors’ conclusion is that the concept of severity is a morally relevant concept that should be considered in future discussions, as severity qualifies the moral motivation to act. However, I may have misunderstood the reasoning, so if you want to be on the safe side, you can read the article here: Severity as a moral qualifier of malady.

I want to end the post with a personal side note: I am inclined to say that the philosophical difficulty in defining the concept of severity (when we talk about disease) is similar to the difficulty in defining the concept of excess (when we talk about water levels). What makes these concepts so useful is their great pliability. It is difficult to say what “severe disease” or “excessively high water level” is, because it depends on so much. Pliable words like these are like tracking dogs that sensitively move through the terrain in all possible relevant directions. But if we try to reconstruct the tracking dog’s sensitivity in general intellectual terms, without access to the dog’s sense of smell, experiences and instincts, we run into great difficulties.

Should these philosophical difficulties motivate us to get rid of the dog? Of course not! Just as we learn incredibly much from following a tracking dog, we learn incredibly much from following the words “severe disease,” even if the journey is arduous. This underlines the authors’ conclusion: severity should be considered a morally significant concept that continues to deserve our attention.

Pär Segerdahl

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

Solberg, C.T., Barra, M., Sandman, L. et al. Severity as a moral qualifier of malady. BMC Medical Ethics 24, 25 (2023). https://doi.org/10.1186/s12910-023-00903-2

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Ethical challenges when children with cancer are recruited for research

28 March, 2023 / / 1 Comment

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

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Philosophers in democratic conversations about ethics, research and society

Amphi theatre, Photo by elCarito on Unsplash
7 March, 2023 / / 1 Comment

Philosophers have an ambiguous position in the knowledge society which could support democratic conversations where truth and openness are united. On the one hand, philosophers are driven by a strong desire for the truth. They ask questions more often than they give answers, and they do not give answers until they have thoroughly explored the questions and judged that they can establish the truth, to speak a little pompously. On the other hand, philosophers cannot communicate their conclusions to society with the same authority that empirical scientists can communicate their findings. Philosophical reasoning, however rigorous it may appear to be, does not function as scientific evidence. It would be doubtful if a philosopher said, “A very clear reasoning which I recently carried out shows that…,” and expected people to accept the conclusion, as we expect people to accept the results of empirical studies.

Despite their strong desire to find the truth, philosophers can thus rarely “inform” about the truths they believe they have found, but must exercise restraint and present these truths as proposals, and then appeal to their interlocutors to judge the proposal for themselves. That is, to think for themselves. The desire to communicate one’s philosophical conclusions to others thus results in conversations on more or less equal terms, where more or less clear reasoning is developed together during the course of the conversation. The philosopher’s ambiguous position in the knowledge society can here act as a catalyst for conversations where the aspiration to think correctly, and the will to think freely, support each other.

The ambiguous position of philosophy in the knowledge society is evident in medical ethics, because here philosophy is in dialogue with patients, healthcare professionals and medical researchers. In medical ethics, there are sometimes so-called “ethics rounds,” where an ethicist visits the hospital and discusses patient cases with the staff from ethical perspectives. The role of the ethicist or philosopher in these conversations is not to draw the correct ethical conclusions and then inform the staff of the morally right thing to do. By striving for truth and by asking questions, the philosopher rather supports the staff’s own ethical reasoning. Of course, one or another of the philosopher’s own conclusions can be expressed in the conversation, but as a suggestion and as an invitation to the staff to investigate for themselves whether it can be so. Often the most important thing is to identify the crucial issues. The philosopher’s ambiguous standing can in these contexts act as a catalyst for good conversations.

Another area where the ambiguous position of philosophy in the knowledge society is evident is in research communication of ethics research, like the one we do here at CRB. Ethicists sometimes conduct empirical studies of various kinds (surveys, interviews and experiments). They can then naturally expect people (the general public or relevant groups) to take the results to heart. But these empirical studies are usually done to shed light on some ethical difficulty and to draw ethical, normative conclusions on good grounds. Again, these conclusions can rarely be communicated as research findings, so the communicator also has to exercise restraint and present the conclusions as relevant proposals to continue thinking and talking about. Research communication becomes not only informative and explanatory, but also thoughtful. It appeals to people to think for themselves. Awareness of the ambiguous position of philosophy can thus support research communication that raises open questions, in addition to disseminating and explaining scientific findings.

Since political conclusions based on scientific studies seem to have a similar ambiguous status to ethical and philosophical conclusions, philosophy could also inspire wiser democratic conversations about how research should be implemented in society. This applies not least to controversial issues, which often polarize and encourage debaters to make strong claims to possess the best evidence and the most rigorous reasoning, which they believe justifies their positions. But such a truth authority on how we should live and organize society hardly exists, even if we strive for the truth. As soon as we talk to each other, we can only make suggestions and appeal to our interlocutors to judge the matter for themselves, just as we ourselves listen to our interlocutors’ objections, questions and suggestions.

Strong pursuit of truth requires great openness. When we philosophize, these aspects are at best united. In this way, philosophy could inspire democratic conversations where people actually talk to each other and seek the truth together. Not just make their voices heard.

Pär Segerdahl

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

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Longer hospital stays can worsen self-injurious behaviour

21 February, 2023 / / 1 Comment

Can a hospital stay make the disease worse? It sounds paradoxical, but of course it can occur as a result of, for example, misdiagnosis and negligence, or of overtreatment. When it comes to psychiatric illnesses and ailments, which are often sensitive to the interaction with the environment, it can be difficult to see how the situation at the hospital affects the illness. Therefore, it is important to be attentive.

A new study by Antoinette Lundahl, carried out together with Gert Helgesson and Niklas Juth, draws attention to the problem in the care of patients who self-harm. They did a survey with healthcare staff at psychiatric clinics in Stockholm. The respondents answered questions about experiences of care longer than a week with this patient group. A majority of the respondents believed that it had detrimental effects on self-injurious behaviour if the patients stayed longer than a week in their ward. They also considered that the patients often stayed too long in the ward and that the reasons for the extended length of stay were in several cases non-medical.

How are we to understand this? How might hospitalization increase the risk of the behaviour to be treated? In the discussion part of the article, various possible explanations are suggested, for example conflicts on the ward or that patients spread self-injurious behaviours to each other. Another possible explanation is that the hospital stay is used by the patient to transfer responsibility for handling painful feelings and thoughts to others. Such avoidance strategies only have a short-term effect and increase the pain in the long term. The self-injurious behaviour can be reinforced as a way to get more care and attention. A kind of “care addiction” develops in the patient, you could say.

How should we understand the extended hospital stays? The respondents mentioned several non-medical reasons, such as uncertainty about the patient’s housing, or that patients who look fragile or are assertive influence the staff to extend the length of care. Another reason for extended care times was assumed to be doctors’ fear of being held responsible for suicide or attempted suicide after discharge, a fear which paradoxically could increase the risk.

Read Antoinette Lundahl’s article here: Hospital staff at most psychiatric clinics in Stockholm experience that patients who self-harm have too long hospital stays, with ensuing detrimental effects.

Then you can also read more about the respondents’ suggestions for improvements, such as giving patients clear care plans with fixed discharge dates, short treatment times (a few days), and information about what is expected of them during the hospital stay. Better collaboration with outpatient care was also recommended, as well as more non-medical treatments in inpatient care.

Pär Segerdahl

Written by…

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

Antoinette Lundahl, Gert Helgesson & Niklas Juth (2022) Hospital staff at most psychiatric clinics in Stockholm experience that patients who self-harm have too long hospital stays, with ensuing detrimental effects, Nordic Journal of Psychiatry, 76:4, 287-294, DOI: 10.1080/08039488.2021.1965213

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What does it mean to prioritize patients according to severity?

14 February, 2023 / / 1 Comment

How should patients be prioritized in health care? In many countries’ regulations, the answer to this question is formulated in terms of severity: the more severe the illness of a patient is, the higher the patient should be prioritized. Although other things may matter for health care priorities, such as cost-effectiveness, severity should be at least one of the criteria. But what makes an illness more severe than another? How should we compare patients in terms of severity?

A recently launched research project tries to tackle these issues. The project is a collaboration between CRB and The National Centre for Priorities in Health in Sweden at Linköping University. The issue of morally sound priority setting in health care is increasingly important and pressing, not least because of the continuing development of new treatments. We can do more for patients today than ever before, but these treatments compete for the limited resources of health care.

The purpose of the project is to make the vague and contested notion of severity more normatively robust and precise by investigating moral issues related to severity. If the concept of severity is to provide valid reasons for prioritization, we must first examine what we should mean by the concept in the context of disease and health care. For instance, there are different ideas about why severity should matter in health care priorities. One idea is that being more severely ill means being worse off than others and that this inequality is something bad. Another idea is that we have stronger reasons to help people the worse off they are, that is, some idea about the moral weight of evil. These different ideas have different implications for which patients to treat first.

There are also different notions about what features of a patient or illness makes that patient more severely ill. It could be quality of life, functioning, existential suffering, or length of life. A common intuition is that an illness with a prognosis of one year survival is more severe when it affects a 20-year old person than an 80-year old person, but that there is no difference in severity when the same illness affects people only ten years apart, say a 40-year old compared to a 50-year old. Together with Borgar Jølstad, I have investigated if this intuition holds up for closer scrutiny. Our conclusion is that it is doubtful. Read our article here: Age and Illness Severity: A Case of Irrelevant Utilities?

The project also looks into economic and legal issues. One economic issue is how different notions of severity affect the total health we can get out of the health care system with a limited budget. Legally, the issue is to what extent different notions of severity are compatible with existing regulations.

This was just a brief presentation of the new project. More posts on specific issues will come when we publish our studies in journals. Hopefully we can soon propose some well-argued answers on how to prioritize patients according to severity. If you want to know more about our basic perspective on some of the issues that will be investigated further, you can read this article: Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda.

Niklas Juth

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Niklas Juth, Professor of Clinical Medical Ethics at the Centre for Research Ethics & Bioethics (CRB)

Jølstad, B., & Juth, N. (2022). Age and Illness Severity: A Case of Irrelevant Utilities? Utilitas, 34(2), 209-224. doi:10.1017/S0953820822000024

Barra, M., Broqvist, M., Gustavsson, E. et al. Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda. Health Care Analysis 28, 25–44 (2020). https://doi.org/10.1007/s10728-019-00371-z

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We want solid foundations

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