The Ethics Blog

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

Tag: qualitative research

Digitization of healthcare requires a national strategy to increase individuals’ ability to handle information digitally

Older lady with light hair and a pinstriped shirt sitting in front of a laptop. Photo by Shvets from Pexels.
22 October, 2024 / / 1 Comment

There is consensus that the digitization of healthcare can make it easier to keep in touch with healthcare and get information that supports individual decision-making about one’s own health. However, the ability to understand and use health information digitally varies. The promising digitization therefore risks creating unequal care and health.

In this context, one usually speaks of digital health literacy. The term refers to the ability to retrieve, understand and use health information digitally to maintain or improve one’s health. This ability varies not only between individuals, but also within the same individual. Illness can, for example, reduce the ability to use a computer or a smartphone to maintain contact with healthcare and to understand and manage health information digitally. Your digital health literacy is dependent on your health.

How do Swedish policy makers think about the need for strategies to increase digital health literacy in Sweden? An article with Karin Schölin Bywall as the main author examines the question. Material was collected during three recorded focus group discussions (or workshops) with a total of 10 participants. The study is part of a European project to increase digital health literacy in Europe. What did Swedish decision-makers think of the need for a national strategy?

The participants in the study said that the issue of digital health literacy was not as much on the agenda in Sweden as in many other countries in Europe and that governmental agencies have limited knowledge of the problem. Digital services in healthcare also usually require that you identify yourself digitally, but a large group of adults in Sweden lack e-identification. The need for a national strategy is therefore great.

Participants further discussed how digital health literacy manifests itself in individuals’ ability to find the right website and reliable information on the internet. People with lower digital health literacy may not be able to identify appropriate keywords or may have difficulty assessing the credibility of the information source. The problem is not lessened by the fact that algorithms control where we end up when we search for information. Often the algorithms make companies more visible than government organizations.

The policy makers in the study also identified specific groups that are at risk of digital exclusion (digital divide) and that need different types of support. Among others, they mentioned people with intellectual disabilities and young people who do not sufficiently master source criticism (even though they are skilled users of the internet and various apps). Specific measures to counteract the digital divide in healthcare were discussed, such as regular mailings with information about good websites, adaptation of website content for people with special needs, and teaching in source criticism. It was also emphasized that individuals may have different combinations of conditions that affect the ability to manage health information digitally in different ways, and that a strategy to increase digital health literacy must therefore be nuanced.

In summary, the study emphasizes that the need for a national strategy for increased digital health literacy is great. While digital technologies have huge potential to improve public health, they also risk reinforcing already existing inequalities, the authors conclude. Read the study here: Calling for allied efforts to strengthen digital health literacy in Sweden: perspectives of policy makers.

Something that struck me was that the policy makers in the study, as far as I could see, did not emphasize the growing group of elderly people in the population. Elderly people may have a particularly broad combination of conditions that affect digital health literacy in many different ways. In addition, the elderly’s ability to handle information digitally not only varies from day to day, but the ability can be expected to have an increasingly steady tendency to deteriorate. Probably at the same rate as the need to use the ability increases.

Pär Segerdahl

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

Bywall, K.S., Norgren, T., Avagnina, B. et al. Calling for allied efforts to strengthen digital health literacy in Sweden: perspectives of policy makers. BMC Public Health 24, 2666 (2024). https://doi.org/10.1186/s12889-024-20174-9

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Of course, but: ethics in palliative practice

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28 May, 2024 / / 1 Comment

What is obvious in principle may turn out to be less obvious in practice. That would be at least one possible interpretation of a new study on ethics in palliative care.

Palliative care is given to patients with life-threatening illnesses that cannot be cured. Although palliative care can sometimes contribute to extending life somewhat, the focus is on preventing and alleviating symptoms in the final stages of life. The patient can also receive support to deal with worries about death, as well as guidance on practical issues regarding finances and relationships with relatives.

As in all care, respect for the patient’s autonomy is central in palliative care. To the extent possible, the patient should be given the opportunity to participate in the medical decision-making and receive information that corresponds to the patient’s knowledge and wishes for information. This means that if a patient does not wish information about their health condition and future prospects, this should also be respected. How do palliative care professionals handle such a situation, where a patient does not want to know?

The question is investigated in an interview study by Joar Björk, who is a clinical ethicist and physician in palliative home care. He conducted six focus group interviews with staff in palliative care in Sweden, a total of 33 participants. Each interview began with an outline of an ethically challenging patient case. A man with disseminated prostate cancer is treated by a palliative care team. He has previously reiterated that it is important for him to gain complete knowledge of the illness and how his death may look. Because the team had to deal with many physical symptoms, they have not yet had time to answer his questions. When they finally get time to talk to him, he suddenly says that he does not want more information and that the issue should not be raised again. He gives no reason for his changed position, but nothing else seems to have changed and he seems to be in his right mind.

What did the interviewees say about the made-up case? The initial reaction was that it goes without saying that the patient has the right not to be informed. If a patient does not want information, then you must not impose the information on him, but must “meet the patient where he is.” But the interviewees still began to wonder about the context. Why did the man suddenly change his mind? Although the case description states that the man is competent to make decisions, this began to be doubted. Or could someone close to him have influenced him? What at first seemed obvious later appeared to be problematic.

The interviewees emphasized that in a case like this one must dig deeper and investigate whether it is really true that the patient does not want to be informed. Maybe he said that he does not want to know to appear brave, or to protect loved ones from disappointing information? Preferences can also change over time. Suddenly you do not want what you just wanted, or thought you wanted. Palliative care is a process, it was emphasized in the interviews. Thanks to the fact that the care team has continuous contact with the patient, it was felt that one could carefully probe what he really wants at regular intervals.

Other values were also at stake for the interviewees, which could further contribute to undermining what at first seemed obvious. For example, that the patient has the right to a dignified, peaceful and good death. If he is uninformed that he has a very short time left to live, he cannot prepare for death, say goodbye to loved ones, or finish certain practical tasks. It may also be more difficult to plan and provide good care to an uninformed patient, and it may feel dishonest to know something important but not tell the person concerned. The interviewees also considered the consequences for relatives of the patient’s reluctance to be informed.

The main result of the study is that the care teams found it difficult to handle a situation where a patient suddenly changes his mind and does not want to be informed. Should they not have experienced these difficulties? Should they accept what at first seemed self-evident in principle, namely that the patient has the right not to know? The interviewees themselves emphasized that care is a process, a gradually unfolding relationship, and that it is important to be flexible and continuously probe the changing will of the patient. Perhaps, after all, it is not so difficult to deal with the case in practice, even if it is not as simple as it first appeared?

The interviewees seemed unhappy about the patient’s decision, but at the same time seemed to feel that there were ways forward and that time worked in their favor. In the end, the patient probably wants to know, after all, they seemed to think. Should they not have had such an attitude towards the patient’s decision?

Read the author’s interesting discussion of the study results here: “It is very hard to just accept this” – a qualitative study of palliative care teams’ ethical reasoning when patients do not want information.

Pär Segerdahl

Written by…

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

Björk, J. “It is very hard to just accept this” – a qualitative study of palliative care teams’ ethical reasoning when patients do not want information. BMC Palliative Care 23, 91 (2024). https://doi.org/10.1186/s12904-024-01412-8

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Precision medicine algorithms and personal encounters

12 September, 2023 / / 1 Comment

The characters in Franz Kafka’s novels go astray in the corridors of bureaucracy. Impersonal officials handle never-defined cases as if they were robots controlled by algorithms as obscure as they are relentless. Judgments are passed without the convicted receiving any comprehensible information about possible charges.

Please excuse this dramatic introduction, which, in a perhaps slightly extreme way, is only intended to highlight a point in an article about precision medicine. Namely, the importance of placing the methods of precision medicine within the framework of the meeting between patient and physician: the importance of “personalizing” precision medicine.

Precision medicine is the name for methods to optimize disease management on the basis of the patient’s individual genetic profile. A bit like in a dating app that is meant to identify the best potential partner for you. Algorithms are used to calculate how patients with different genetic variants are likely to respond to drug treatments for some disease. There are advantages to this. The most effective and safe treatment for the patient in question can be identified. It also means that you can avoid treatments from which a patient with a certain genetic profile has very serious side effects. Or from which the patient is unlikely to get any positive effect, but would only suffer the side effects.

Together with several co-authors, Åsa Grauman at CRB recently published an interview study on precision medicine. Patients with a form of blood cancer (AML) in Finland, Italy and Germany were interviewed about how they viewed precision medicine, and about their preferences for being involved in this new way of making treatment decisions. Something I found interesting was that several (not all) participants wanted and valued information, but not for the purpose of making decisions. They wanted information to prepare themselves mentally, to know what to expect and to understand why different measures were being taken. They wanted information to be able to make the transition to being patients, I would like to say.

Almost all participants were unfamiliar with precision medicine. When the interviewer described the concept to them, most of them felt that precision medicine made sense and they were hopeful that the methods could be useful in the future. For example, to avoid unnecessary treatments with severe side effects in patients with a certain genetic profile. But even if the participants had faith in the algorithms that may be used in precision medicine, they emphasized that the algorithms are only a tool for the physician. They said that the physician can see the human side of the patient and the disease, and that the physician should be able to go against the algorithm depending on factors in the patient other than those included in the algorithm. The algorithm must not replace the physician or run over the patient. Many participants thus seemed to hold the view that difficult treatment decisions can be left to the physician, if the physician has listened to both the algorithm and the patient. Participants also highlighted the problem of not fitting into the algorithm: being denied treatment because the algorithm does not consider one to be the right patient for the available treatment options.

In their discussion, the authors highlighted a particularly interesting aspect of the situation of making treatment decisions. Namely, that the patient can weigh benefits and risks differently than both the physician and the algorithm. Incorporating the patient’s own trade-offs is therefore fundamental, they write, for precision medicine to be considered personalized care. Read the thought-provoking interview study here: Personalizing precision medicine: Patients with AML perceptions about treatment decisions.

To summarize, one could say that patients need to meet not only their algorithmically optimized treatment. In order to understand and influence their situation as patients, they above all need to meet their physician. Even if the patients feel that the decisions are too difficult and are positive to the possibilities of precision medicine, they want to talk to the physician and they want their meeting to influence the decisions. Perhaps treatment in an important sense begins even before the treatment decision is made, when the patient first meets the physician and they begin to find their way together through the hospital corridors. Corresponding meaningful encounters were never experienced by the characters in Kafka’s novels.

Pär Segerdahl

Written by…

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

Åsa Grauman, Mika Kontro, Karl Haller, et al. Personalizing precision medicine: Patients with AML perceptions about treatment decisions. Patient Education and Counseling 115, 2023, https://doi.org/10.1016/j.pec.2023.107883

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In dialogue with patients

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The importance of ethical review in research with severely ill children

5 September, 2023 / / 1 Comment

Research ethics committees play an important role in safeguarding human beings in research. Respect for human dignity in research has not always been self-evident. The emergence of research ethics has taken place in the wake of ethical scandals and abuses in which society’s most vulnerable have been used and exploited in the name of science. I am thinking, for example, of the Nazis’ cruel medical experiments on children and other vulnerable people.

At a time when the role of ethical review is being vigorously debated in the media and the research community, it is important to do research on the significance of ethical review. In particular, we should explore the question how ethical review serves to protect those most vulnerable from being exploited in research.

In a recent study conducted by myself together with Anna T. Höglund, Sara Frygner-Holm and Tove Godskesen, we focus on ethical issues in research with ill children, who are often considered a particularly vulnerable group in research. We have interviewed members of the Swedish Ethical Review Authority about their perceptions of ethical issues in research applications involving ill children, for example children with cancer.

One thing that members really emphasized was how crucial it is that the researcher provides good, age-appropriate information to children when they invite them to research. Without good information, children are excluded from being involved in a meaningful way in decisions about research participation. Many of the members we interviewed were concerned that good information for children was often missing from research applications. This suggests that we as researchers may need to increase our efforts to really take children’s legal right to information and participation seriously and not leave the decisions about research participation to the parents alone. There might be a need for more practical guidance on how we can inform and ask children about research in an ethically sound and sustainable way.

Children’s active participation in decisions about research participation is ethically important, but so is of course also children’s right to be protected from various risks associated to research. Some populations of severely ill children are “heavily researched,” among them children with cancer. This is of course very good because it enables groundbreaking medical advances in childhood cancer care and treatment. But at the same time, we know that children and their parents can be particularly vulnerable when recruited to research, due to their challenging life situation. They are also very dependent on the healthcare system. For such reasons, the committee members in the study considered it essential that the children’s physical as well as mental health and integrity are sufficiently protected. This means that as a researcher, you should not only focus on medical risks, but also consider how the whole child is affected, both short and long term, by being part of your research project.

The members we interviewed felt they had an ethical responsibility to protect children from “bad research” – when severely ill children give of their precious time and energy, it is especially important that the research is of high scientific quality and answers research questions that are truly important, new and urgent. It has been controversial whether or not research ethics committees should assess the design and quality of research. However, as shortcomings in design and quality can significantly reduce the potential benefits of a project, such aspects should be assessed as part of the ethical review, so that ill children can be spared participation in research that is not likely to lead to new knowledge or medical advances.

Ethical review is governed by laws and regulations. Some members were concerned that the ethical review system risks becoming too one-sidedly focused on legal compliance and formalities, giving ethical reflection to little space. Ethical review of research involving severely ill children undoubtedly places high demands not only on legal competence, but also on clinical and ethical competence, good teamwork and personal qualities such as accuracy and responsibility. Moreover, the emergence of new advanced technologies in research and healthcare constantly presents research ethics committees with new complex ethical issues to ponder and address. Thankfully, philosophy and its ethical principles offer invaluable tools!

So, what is the role and significance of ethical review in research with ill children? As our study suggests, ethical review and research ethics committees have, among other things, a crucial role in monitoring and promoting children’s right to information, participation and protection from harm and risks in research. These are urgent tasks, both from a children’s rights perspective and a research ethics perspective. If you want to know more about our results and read our discussion of the findings, you can find the study here: Research ethics committee members’ perspectives on paediatric research: a qualitative interview study.

Children’s perspectives have not been represented in research ethics to any great extent and more knowledge is therefore needed regarding children’s own experiences of research participation. Therefore, in an upcoming study, we will now interview children with cancer and their parents about how they experienced being asked to participate in research. 

Kajsa Norberg Wieslander

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Kajsa Norberg Wieslander, PhD student at the Centre for Research Ethics & Bioethics, is exploring ethical and clinical aspects of recruiting children with cancer to research studies.

Norberg Wieslander, K., Höglund, A. T., Frygner-Holm, S., & Godskesen, T. (2023). Research ethics committee members’ perspectives on paediatric research: a qualitative interview study. Research Ethics, 0(0). https://doi.org/10.1177/17470161231179663

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Attitudes, norms and values ​​that can influence antibiotic resistance

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11 October, 2022 / / 1 Comment

Human use of antibiotics creates an evolutionary pressure that drives the development of antibiotic-resistant bacteria. If antibiotics lose their effectiveness, simple infections can become life-threatening and it becomes more difficult to treat infections in hospitals in connection with surgical interventions or other treatments. We should therefore reduce the use of antibiotics and use them more wisely.

Greece is at the top among European countries when it comes to antibiotics consumption. Nevertheless, studies have shown that Greeks are aware of the connection between the overuse of antibiotics and antibiotic resistance. It is not as surprising as it may sound. Other research shows that information alone is not enough to change people’s behaviour.

Since ignorance about the problem cannot explain the overuse of antibiotics in Greece, other factors should be investigated. In an article in BMC Public Health, Dimitrios Papadimou, Erik Malmqvist and Mirko Ancillotti present an interview study (focus groups) in which other possible explanations were examined, such as attitudes, norms and values ​​among Greeks.

The Greek participants saw overconsumption of antibiotics as an entrenched habit in Greece. It is easy to get access to antibiotics, they are often used without a doctor’s prescription, sometimes even as a precaution. In addition, doctors frequently prescribe antibiotics as a reliable remedy, participants said. Although critical of this Greek pattern of antibiotic consumption, participants considered it morally questionable to restrict individual access to potentially beneficial antibiotic treatments in the name of the greater good. Nor did they want to place the responsibility for handling antibiotic resistance on the individual. The whole of society must take responsibility, it was argued, perhaps above all government actors, healthcare staff and food producers. Finally, participants expressed doubts about the possibility of effectively managing antibiotic resistance in Greece.

There certainly seem to be more factors than limited awareness of the problem behind the overuse of antibiotics in Greece (and in other countries). If you would like more details and discussion, read the study here: Socio-cultural determinants of antibiotic resistance: a qualitative study of Greeks’ attitudes, perceptions and values

Hopefully, the study motivates future quantitative investigations of attitudes, norms and values, with more participants. Changing the use of antibiotics is probably like changing the course of a huge ship. Simply being aware of the necessary change is not enough.

Pär Segerdahl

Written by…

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

Papadimou, D., Malmqvist, E. & Ancillotti, M. Socio-cultural determinants of antibiotic resistance: a qualitative study of Greeks’ attitudes, perceptions and values. BMC Public Health 22, 1439 (2022). https://doi.org/10.1186/s12889-022-13855-w

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Approaching future issues

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

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15 June, 2021 / / 1 Comment

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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Patient integrity at the end of life

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23 March, 2021 / / 1 Comment

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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