Tag: patient-doctor relationship (Page 1 of 4)

Does knowing the patient make a moral difference?

Sick man in bed. Photo by Kampus Production on Pexels.

27 August, 2024 / Pär Segerdahl / 2 Comments

Several ethical concepts and principles govern how patients should be treated in healthcare. For example, healthcare professionals should respect patients’ autonomy. Moreover, they should act in the patients’ best interest and avoid actions that can cause harm. Patients must also be treated fairly. However, exactly how such ethical concepts and principles should be applied can vary in different situations.

A new article examines whether the application may depend on whether the healthcare personnel know the patient (in the sense of having knowledge about the patient). Some healthcare situations are characterized by the fact that the patient is unknown to the personnel: they have never met the patient before. Other situations are characterized by familiarity: the personnel have had continuous contact with the patient for a long time. In the latter situations, the personnel know the patient’s personality, living conditions, preferences and needs. Does such familiarity with the patient make any difference to how patients should be treated ethically by the healthcare staff, ask the authors of the article, Joar Björk and Anna Hirsch.

It may be tempting to reply that knowing the patient should not be allowed to play any role, that it follows from the principle of justice that familiarity should not be allowed to make any difference. Of course, the principle of justice places limits on the importance of familiarity with the patient. But in healthcare there is still this difference between situations marked by unfamiliarity and situations marked by familiarity. Consider the difference between screening and palliative home care. Should not this difference sometimes make a moral difference?

Presumably familiarity can sometimes make a moral difference, the authors argue. They give examples of how, not least, autonomy can take different forms depending on whether the situation is characterized by familiarity or unfamiliarity. Take the question of when and how patients should be allowed to delegate their decision-making to the healthcare personnel. If the personnel do not know the patient at all, it seems to be at odds with autonomy to take over the patient’s decision-making, even if the patient wishes it. However, if the personnel are well acquainted with the patient, it may be more consistent with autonomy to take over parts of the decision-making, if the patient so wishes. The authors provide additional examples. Suppose a patient has asked not to be informed prior to treatment, but the staff know the patient well and know that a certain part of the information could make this particular patient want to change certain decisions about the treatment. Would it then not be ethically correct to give the patient at least that part of the information and problematic not to do so? Or suppose a patient begins to change their preferences back and forth. If the patient is unfamiliar to the staff, it may be correct to always let the most recent preference apply. (One may not even be aware that the patient had other preferences before.) If, on the other hand, the patient is well known, the staff may have to take into account both past and present preferences and make a more global assessment of the changes and of autonomy.

The authors also exemplify how the application of other moral concepts and principles can take different forms, depending on whether the relationship with the patient is characterized by familiarity or unfamiliarity. Even the principle of justice could in some cases take different form, depending on whether the personnel know the patient or not, they suggest. If you want to see a possible example of this, read the article here: An “ethics of strangers”? On knowing the patient in clinical ethics.

The authors finally argue that care decisions regarding autonomy, justice and acting in the best interest of the patient are probably made with greater precision if the personnel know the patient well. They argue that healthcare professionals therefore should strive to get to know their patients. They also argue that healthcare systems where a greater proportion of the staff know a greater proportion of the patients are preferable from an ethical point of view, for example systems that promote therapeutic continuity.

Written by…

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

Björk, J., Hirsch, A. An “ethics of strangers”? On knowing the patient in clinical ethics. Med Health Care and Philosophy 27, 389–397 (2024). https://doi.org/10.1007/s11019-024-10213-y

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We have a clinical perspective

Women on AI-assisted mammography

Radiologist looking at X-rays, Photo by National Cancer Institute on Unsplash

12 March, 2024 / Pär Segerdahl / 1 Comment

The use of AI tools in healthcare has become a recurring theme on this blog. So far, the posts have mainly been about mobile and online apps for use by patients and the general public. Today, the theme is more advanced AI tools which are used professionally by healthcare staff.

Within the Swedish program for breast cancer screening, radiologists interpret large amounts of X-ray images to detect breast cancer at an early stage. The workload is great and most of the time the images show no signs of cancer or pre-cancers. Today, AI tools are being tested that could improve mammography in several ways. AI could be used as an assisting resource for the radiologists to detect additional tumors. It could also be used as an independent reader of images to relieve radiologists, as well as to support assessments of which patients should receive care more immediately.

For AI-assisted mammography to work, not only the technology needs to be developed. Researchers also need to investigate how women think about AI-assisted mammography. How do they perceive AI-assisted breast cancer screening? Four researchers, including Jennifer Viberg Johansson and Åsa Grauman at CRB, interviewed sixteen women who underwent mammography at a Swedish hospital where an AI tool was tested as a third reviewer of the X-ray images, along with the two radiologists.

Several of the interviewees emphasized that AI is only a tool: AI cannot replace the doctor because humans have abilities beyond image recognition, such as intuition, empathy and holistic thinking. Another finding was that some of the interviewees had a greater tolerance for human error than if the AI tool failed, which was considered unacceptable. Some argued that if the AI tool makes a mistake, the mistake will be repeated systematically, while human errors are occasional. Some believed that the responsibility when the technology fails lies with the humans and not with the technology.

Personally, I cannot help but speculate that the sharp distinction between human error, which is easier to reconcile with, and unacceptably failing technology, is connected to the fact that we can say of humans who fail: “After all, the radiologists surely did their best.” On the other hand, we hardly say about failing AI: “After all, the technology surely did its best.” Technology does not become subject to certain forms of conciliatory considerations.

The authors themselves emphasize that the participants in the study saw AI as a valuable tool in mammography, but held that the tool cannot replace humans in the process. The authors also emphasize that the interviewees preferred that the AI tool identify possible tumors with high sensitivity, even if this leads to many false positive results and thus to unnecessary worry and fear. In order for patients to understand AI-assisted healthcare, effective communication efforts are required, the authors conclude.

It is difficult to summarize the rich material from interview studies. For more results, read the study here: Women’s perceptions and attitudes towards the use of AI in mammography in Sweden: a qualitative interview study.

Written by…

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

Viberg Johansson J, Dembrower K, Strand F, et al. Women’s perceptions and attitudes towards the use of AI in mammography in Sweden: a qualitative interview study. BMJ Open 2024;14:e084014. doi: 10.1136/bmjopen-2024-084014

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Approaching future issues

Living with rheumatoid arthritis: how do patients perceive their interaction with healthcare and a self-care app?

Woman writing, photo by Pavel Danilyuk on Pexels

6 February, 2024 / Pär Segerdahl / 2 Comments

Not all diseases can be cured, but medication along with other measures can alleviate the symptoms. Rheumatoid arthritis is one such disease. Medicines for symptoms such as swellings and stiffness have become very effective. As a patient, you can find good ways to live with the disease, even if it can mean more or less regular contacts with healthcare (depending on how you are affected). Not only with the doctor who prescribes medication, but often with an entire healthcare team: doctor, nurse, physiotherapist, occupational therapist and counselor. There are aids that make everyday life easier, such as orthopedic shoes, splints and easier-to-grip faucets at home, and many hospitals also offer patients education about the disease and how you can live and function with it, at home as well as at work.

The symptoms vary, not only between individuals but also for the same individual over time. The need for care and support is thus individual and changing. Therefore, it is important that the interaction between patient and healthcare works efficiently and with sensitivity to the patient’s unique situation at the moment. Since patients to a great extent have to deal with their illness on their own, and over time become increasingly knowledgeable about their own disease, it is important to listen to the patient. Not only to improve the patient’s experience of healthcare, but also to ensure that individual patients receive the care and support they need at the right moment. The patient may not be part of the healthcare team, but is still one of the most important team players.

There are digital self-care applications for rheumatoid arthritis, where the patients who choose to use the tools can get advice and information about the disease, prepare for contacts with healthcare, and keep a digital logbook about their symptoms, experiences and lifestyle. Such digital self-care apps can be assumed to make patients even more knowledgeable about their own disease. The logbook contains relevant observations, which the patient can describe in the meetings with the healthcare provider. What an asset to the care team!

Given the importance of good continuous team play between patient and healthcare in diseases such as rheumatoid arthritis, it is important that researchers regularly examine how patients experience the interaction. Jennifer Viberg Johansson, Hanna Blyckert and Karin Schölin Bywall recently conducted an interview study with patients at various hospitals in Sweden. The aim was to investigate not only the patients’ experiences of the interaction with healthcare, but also their experiences of a digital self-care app, and how the app affected the communication between patient and doctor.

The patients’ perception of their interaction with healthcare varied greatly. About half felt prioritized and excellently supported by the healthcare team and half felt neglected, some even dehumanized. This may reflect how different hospitals have different resources and competencies for rheumatoid arthritis, but also unclear communication about what the patients can expect. Many patients found the self-care app both useful and fun to use, and a good support when preparing for healthcare visits. At the same time, these detailed preparations could lead to even greater disappointment when it was felt that the doctor was not listening and barely looking at the patient.

Collaborative teamwork and clear communication is identified in the study as important contributing factors to patients’ well-being and ability to manage their illness. The patients valued time for dialogue with the rheumatologist and appreciated when their personal observations of life with the disease were listened to. Because some of the interviewed patients had the negative experience that the doctor did not listen to the observations they had compiled in the app, the authors believe that the use of digital tools should be promoted by the healthcare system and there should be an agreement on how the tool should be used at meetings to plan care and support.

For more details about the patients’ experiences, read the article here: Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study.

The study emphasizes the importance of patient-centered care for individuals with rheumatoid arthritis, as well as the importance of considering patients’ psychological well-being alongside their physical health. An important point in the study could perhaps be summarized as follows: appreciate the patient as a skilled team player.

Written by…

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

Viberg Johansson J, Blyckert H, Schölin Bywall K. Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study. BMJ Open 2023;13:e072274. doi: 10.1136/bmjopen-2023-072274

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In dialogue with patients

Precision medicine algorithms and personal encounters

12 September, 2023 / Pär Segerdahl / 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.

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

We need to care about care ethics

7 December, 2021 / annathoglund / 1 Comment

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

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

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

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

Written by…

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

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In dialogue with patients

Clinical cancer trials convey a culture of hope

14 January, 2020 / Pär Segerdahl / 2 Comments

Activities that we may want to keep apart often overlap. An example is cancer research and care. Clinical cancer centers often conduct research and recruit patients as research participants. Such research is important if we want to offer future patients better cancer treatments. However, does this also apply to patients participating in studies? Are they offered better care as research participants?

Together with five co-authors, Tove Godskesen recently published an interview study with clinical physicians carrying out clinical cancer trials in Sweden, Denmark and Finland. The questions were about what ethical challenges the physicians perceived in the care of patients who participate in clinical trials. Does the overlap of care and research create ethical challenges? Although several physicians mentioned challenges, there were tendencies to downplay ethical difficulties and to associate the overlap between research and care with care benefit.

Tove Godskesen sees indications of a culture of hope in clinical cancer trials, where patients and physicians reinforce the image of research participation as an opportunity to access the latest therapy. However, uncertain patients can challenge the picture by asking the physician to affirm that the experimental treatment is as good as the standard treatment. You do not know that. That is why you are doing research!

The authors do not make any claims about whether a culture of hope in clinical cancer trials is good or not. However, they believe that the culture needs to become visible and discussed openly. So that the ethical challenges when care and research overlap do not disappear from sight.

The culture of hope has several aspects that you can read more about in the article. For example, the attitude that it is better to avoid giving patients bad news.

Written by…

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

Tove E Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset and Zandra E Nielsen. The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views. Clinical Ethics. First Published December 30, 2019. https://doi.org/10.1177/1477750919897379

We have a clinical perspective

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How about personally optimized treatment?

6 May, 2019 / Pär Segerdahl / 0 Comments

It is well known that patients who are asked to participate in cancer trials are tempted by the therapeutic misconception. They believe they are offered a newer and better treatment, when in fact it is about research into an untested treatment. When researchers use genetic tests to develop personalized oncology, even more misconceptions can arise. I will soon explain. But first, what is personalized cancer treatment? Here is an example.

Patients whose tumor is to be operated may undergo preparatory radiation or chemotherapy. Since the preparatory therapy has severe side effects, one wants to avoid giving it to patients whose tumors do not respond to it. The challenge is to distinguish patients who respond to treatment from patients who do not. This is to be accomplished through, among other things, genetic tests on the tumor cells. If this works, you can develop personalized cancer treatment. Patients with the “right” tumor cell genetics receive the preparatory therapy, while patients who, according to the genetic tests, only get the side effects, with no effect on tumor growth, do not receive the therapy.

What are the misconceptions that can arise in patients who are asked to participate in research on personalized cancer treatment? Here are some examples.

Patients who are told that the researchers will do genetic tests can feel a genetic responsibility to participate, considering their children and grandchildren. They believe the test results may be relevant to close relatives, who may have the same disease genes. However, the tests are done on mutated tumor cells and therefore say nothing about inherited cancer risk. A sense of genetic responsibility can thus be triggered by the word “genetics” and create a genetic misconception of research in personalized oncology.

Other misconceptions have to do with the positive language used to describe personalized medicine. One talks about personally “optimized” treatments, about “tailored” treatments, about treatments that are adapted “to the individual.” This language use is not intended to mislead, but it is easy to see how words such as “optimization” can cause patients to believe that research participation means special treatment benefit.

The biggest challenge is perhaps to explain the research purpose behind the positive language. The aim is to be able in the future to distinguish between patients, to “stratify” them, as it less positively is called. Personally optimized care actually means that some patients do not receive certain treatments. This is, of course, reasonable if genetic tests can show that they have no benefit from the treatments but only get the side effects. However, what do cancer patients themselves say about stratified cancer treatment, where some patients are identified as non-responders and therefore are not offered the same treatment as other patients? Finally, do participants understand that “tailored treatment” is a future goal of the study and not something they are offered to try?

Communication with patients recruited for studies in personalized oncology faces many challenges, as patients are tempted by even more misconceptions than just the well-known therapeutic misconception.

Do you want to know more? Read the German study that inspired this blog post.

Pär Segerdahl

Perry, J., Wöhlke, S., Heßling, A.C., Schicktanz, S. 2017. Why take part in personalised cancer research? Patients’ genetic misconception, genetic responsibility and incomprehension of stratification—an empirical‐ethical examination. Eur J Cancer Care. https://doi.org/10.1111/ecc.12563

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On “truly” understanding the risk

12 March, 2019 / Pär Segerdahl / 0 Comments

It is a well-known psychological fact that people have great difficulties to understand probabilistic risks. What does it actually mean that the risk of developing breast cancer the next ten years is fifteen percent? In addition to the difficulties of understanding probabilities, mathematical expressions can cause a false appearance of exactitude and objectivity. It is often about uncertain evaluations, but expressed in seemingly definitive figures.

At our Monday seminar, Ulrik Kihlbom discussed another difficulty with understanding risk information. It can be difficult to understand not only the probabilities, but also what it is you risk experiencing. Sometimes, people face enormously complex choices, where the risks are high, but also the benefits. Perhaps you suffer from a serious disease from which you will die. However, there is a treatment, and it may work. It is just that the treatment has such severe side effects that you may die even from the treatment.

Ulrik Kihlbom interviewed physicians treating patients with leukemia. The doctors stated that patients often do not understand the risks of the treatment they are offered. The difficulty is not so much about understanding the risk of dying from the treatment. The patients understand that risk. However, the doctors said, no one who has not actually seen the side effects understand that the treatment can make you so incredibly ill.

Yet, it seems like quite comprehensible side effects: fatigue, serious infections, nausea and vomiting, stomach cramp, diarrhea, skin irritation, pain, and weight loss. Why would patients find it difficult to understand these risks?

Could it be that doctors have too high demands on “real” understanding? Must the patient, in order to “truly” understand the side effects, already have experienced the treatment? According to the doctors, experienced patients are at least easier to inform about the side effects. At the same time, the requirement that one must have had the experiences to really understand them seems too strong.

Rather, says Ulrik Kihlbom, doctors probably notice from the patients’ attitude that some of them underestimate what it is like to experience the side effects. Such attitudes can be sensed. The patients understand verbally that they are at risk of these side effects, but emotionally they do not really understand what the side effects are like, especially when they come together for a long time.

This resembles a general human difficulty. We often neglect how we ourselves are affected by our experiences. We project our present, unaffected self, and think: “I’m strong, I can handle those side effects.” However, when we actually experience the side effects, we are no longer strong! The self is not a constant, but changes with our experiences.

Here, then, it is not the probabilities that cause the difficulties, but the words. We understand the side effects verbally and can easily reproduce them. However, even words can cause a false appearance of objectivity: as if the experiences the words denote would not really reach us at our core. We separate ourselves from what we verbally understand we may experience, as if we could live our lives without being affected… without actually living them.

Ulrik Kihlbom has found a striking example of yet another aspect of the difficulty of understanding risk information. Not only probabilities but also common words such as “nausea” can create characteristic misunderstandings of risk information.

Pär Segerdahl

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Patients find misleading information on the internet

30 October, 2018 / Pär Segerdahl / 0 Comments

In phase 1 clinical studies of substances that might possibly be used to treat cancer in the future, cancer patients are recruited as research participants. These patients almost always have advanced cancer that no longer responds to the standard treatment.

That research participation would affect the cancer is unlikely. The purpose of a phase 1 study is to determine safe dosage range and to investigate side effects and other safety issues. This will then enable proceeding to investigating the effectiveness of the substance on specific forms of cancer, but with other research participants.

Given that patients often seek online information on clinical trials, Tove Godskesen, Josepine Fernow and Stefan Eriksson wanted to investigate the quality of the information that currently is available on the internet about phase 1 clinical cancer trials in Sweden, Denmark and Norway.

The results they report in the European Journal of Cancer Care are quite alarming. The most serious problem, as I understand it, is that the information conceals risks of serious side effects, and in various ways suggests possible positive treatment outcomes. This lack of accurate language is serious. We are dealing with severely ill patients who easily entertain unrealistic hopes for new treatment options.

To give a picture of the problem, I would like to give a few examples of typical phrases that Godskesen, Fernow and Eriksson found in the information on the internet, as well as their suggestions for more adequate wordings. Noticing the contrast between the linguistic usages is instructive.

One problem is that the information speaks of treatment, even though it is about research participation. Instead of writing “If you are interested in the treatment,” you could write “If you want to participate in the research.” Rather than writing “Patients will be treated with X,” you could write “Participants will be given X.”

The substance being tested is sometimes described as a medicine or therapy. Instead, you can write “You will get a substance called X.”

Another problem is that research participation is described as an advantage and opportunity for the cancer patient. Instead of writing “An advantage of study participation is that…,” one could write “The study might lead to better cancer treatments for future patients.” Rather than writing “This treatment could be an opportunity for you,” which is extremely misleading in phase 1 clinical cancer trials, one could more accurately say, “You can participate in this study.”

The authors also tested the readability of the texts they found on the internet. The Danish website skaccd.org had the best readability scores, followed by the Norwegian site helsenorge.no. The Swedish website cancercenter.se got the worst readability scores. The information was very brief and deemed to require a PhD to be understandable.

It is, of course, intelligible that it is hard to speak intelligibly about such difficult things as cancer trials. Not only do the patients recruited as study participants hope for effective treatment. The whole point of the research is effective cancer treatment. This is the ultimate perspective of the research; the horizon towards which the gaze is turned.

The fact, however, is that this horizon is far removed, far away in the future, and is about other cancer patients than those who participate in phase 1 trials. Therefore, it is important not to let this perspective characterize information to patients in whom hope would be unrealistic.

Do not talk about treatments and opportunities. Just say “You can participate in this study.”

Pär Segerdahl

Godskesen, TE, Fernow J, Eriksson S. Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway. Eur J Cancer Care. 2018;e12937. https://doi.org/10.1111/ecc.12937

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Ethical competence for the decision not to resuscitate

28 August, 2018 / Pär Segerdahl / 0 Comments

Sometimes, physicians have to decide that a cancer patient has such a poor prognosis that he or she should not be resuscitated through cardiopulmonary rescue, if discovered with cardiac arrest. The procedure is violent and would in these cases cause unnecessary suffering.

The situation is stressful for the healthcare team no matter which decision is taken. Providing violent cardiopulmonary rescue to a terminally ill cancer patient can be perceived as poor care at the end of life. At the same time, one wishes of course to treat the patient, so the decision to not resuscitate can be stressful, too. The decision requires ethical competence.

Mona Pettersson, PhD student at CRB, examines in her dissertation the decision not to resuscitate patients in the fields of oncology and hematology. In an article in BMC Medical Ethics, she describes physicians and nurses’ reflections on ethical competence in relation to the decision not to resuscitate. Even if the physician takes the decision, the nurses are involved in the highest degree. They have responsibility for the care of the patient and of the relatives.

The ethical difficulties concern not just the decision itself. The difficulties also concern how patients and relatives are informed about the decision, as well as how the entire healthcare team is informed, involved and functions. What competence is required to ethically handle this care decision? How can such ethical competence be supported?

According to Pettersson, ethical competence involves both personal qualities and knowledge, as well as ability to reflect on how decisions best are made and implemented. In practice, all this interacts. For example, a physician may have knowledge that the patient should be informed about the decision not to resuscitate. At the same time, after reflection, the physician may choose not to inform, or choose to inform the patient using other words.

The physicians and nurses in Mona Pettersson’s study expressed that their ethical competence would be supported by greater opportunities for reflection and discussion of ethics near the end of life within oncology and hematology. This is because healthcare is always situated. The ethical difficulties have a definite context. Healthcare professionals are not ethically competent in general. Their ethical competence is linked to their specific professional practices, which moreover differ for physicians and nurses.

If you want to read more about Mona Pettersson’s dissertation, please read the presentation of her at CRB’s website: Healthcare, ethics and resuscitation.

Pär Segerdahl

Pettersson, M., Hedström. M and Höglund, A. T. Ethical competence in DNR decisions – a qualitative study of Swedish physicians and nurses working in hematology and oncology care. BMC Medical Ethics (2018) 19:63. htdoi.org/10.1186/s12910-018-0300-7

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Tag: patient-doctor relationship (Page 1 of 4)

Does knowing the patient make a moral difference?

Women on AI-assisted mammography

Living with rheumatoid arthritis: how do patients perceive their interaction with healthcare and a self-care app?

Precision medicine algorithms and personal encounters

We need to care about care ethics

Clinical cancer trials convey a culture of hope

On “truly” understanding the risk

Ethical competence for the decision not to resuscitate

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Welcome to the Ethics Blog!

Meet the editor

Follow the Ethics Blog via e-mail

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Recent posts

Interested in the Swedish debate?

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Recent Comments