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

Tag: patients (Page 1 of 5)

Patient views on treatment of Parkinson’s disease with embryonic stem cells

Stem cells taken from human embryos very early after fertilization can be grown as embryonic stem cell lines. These embryonic stem cells are called pluripotent, as they can differentiate into virtually all of the body’s cell types (without being able to develop into an individual). The medical interest in embryonic stem cells is related to the possibility of using them to regenerate damaged tissue. One disease one hopes to be able to develop stem cell treatment for is Parkinson’s disease.

In Sweden, it is permitted to use leftover donated embryos from IVF treatment for research purposes. However, not to produce medical products. The path towards possible future treatments is lined with legal and ethical uncertainties. In addition, the moral status of the embryo has been debated for a very long time, without any consensus on the matter being reached.

In this situation, studies of people’s perceptions of the use of human embryonic stem cells for the development of medical treatments become urgent. Recently, the first study of the perceptions of patients, the group that can become recipients, was published. It is an interview study with seventeen patients in Sweden who have Parkinson’s disease. Author is Jennifer Drevin along with six co-authors.

The interviewees were generally positive about using human embryonic stem cells to treat Parkinson’s disease. They did not regard the embryo as a life with human rights, but at the same time they saw the embryo as something special. It was considered that the embryo has great value for the couple who want to become parents and emphasized the importance of the woman’s or the couple’s free and informed consent to donation. As patients, they expressed interest in a treatment that did not limit everyday life through, for example, complicated daily medication. They were interested in better cognitive and communicative abilities and wanted to be more independent: not having to ask family members for support in everyday tasks. The effectiveness of the treatment was considered important and there was concern that stem cell treatment might not be effective enough, or have side effects.

Furthermore, concerns were expressed that donors could be exploited, for example poor and vulnerable groups, and that financial compensation could have negative effects. Allowing donation only of leftover embryos from IVF treatment was considered reassuring, as the main purpose would not be to make money. Finally, there was concern that the pharmaceutical industry would not always prioritize the patient over profit and that expensive stem cell treatments could lead to societal and global injustices. Suspicions that companies will not use embryos ethically were expressed, and some felt that it was more problematic to make a profit on products from embryos than on other medical products. Transparency around the process of developing and using medical stem cell products was considered important.

If you want to see more results, read the study here: Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study.

It can be difficult to draw general conclusions from the study and the summary above reproduces some of the statements in the interviews. We should, among other things, keep in mind that the interviews were conducted with a small number of patients who themselves have the disease and that the study was conducted in Sweden. The authors emphasize that the study can help clinicians and researchers develop treatments in ways that take into account patients’ needs and concerns. A better understanding of people’s attitudes can also contribute to the public debate and support the development of policy and legislation.

Pär Segerdahl

Written by…

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

Drevin, J., Nyholm, D., Widner, H. et al. Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study. BMC Med Ethics 23, 102 (2022). https://doi.org/10.1186/s12910-022-00840-6

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In dialogue with patients

We need to care about care ethics

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

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

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

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

Anna T. Höglund

Written by…

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

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In dialogue with patients

New dissertation on patient preferences in medical approvals

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

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

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

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

Pär Segerdahl

Written by…

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

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

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We want solid foundations

Patient integrity at the end of life

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

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

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

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

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

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

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

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

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

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

Pär Segerdahl

Written by…

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

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

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We like real-life ethics

We do not know if cancer patients receive better treatment by participating in clinical trials

How do we know? That is the recurring question in a scientific culture. Do we have support for what we claim or is it just an opinion? Is there evidence?

The development of new cancer treatments provides many examples of the recurring question. The pharmaceutical company would like to be able to claim that the new treatment is more effective than existing alternatives and that the dosages recommended give good effect without excessive side effects. However, first we must answer the question, How do we know?

It is not enough to ask the question just once. We must repeat the question for every aspect of the treatment. Any claim on efficacy, side effects and dosages must be supported by answers to the question. How do we arrive at these answers? How do we check that it is not mere opinions? Through clinical trials conducted with cancer patients who agree to be research subjects.

A new research ethical study shows, however, that an ethically sensitive claim is often repeated in cancer research, without first asking and answering the question “How do we know?” in a satisfying way. Which claim? It is the claim that cancer patients are better off as participants in clinical trials than as regular patients who receive standard treatment. The claim is ethically sensitive because it can motivate patients to participate in trials.

In a large interview study, the authors first investigated whether the claim occurs among physicians and nurses working with clinical trials. Then, through a systematic literature review, they examined whether there is scientific evidence supporting the claim. The startling answer to the questions is: Yes, the claim is common. No, the claim lacks support.

Patients recruited for clinical trials are thus at risk of being misled by the common but unfounded opinion that research participation means better treatment. Of course, it is conceivable that patients who participate in trials will at least get indirect positive effects through increased attention: better follow-ups, more sample taking, closer contacts with physicians and nurses. However, indirect positive effects on outcomes should have been visible in the literature study. Regarding subjective effects, it is pointed out in the article that such effects will vary with the patients’ conditions and preferences. It is not always positive for a very sick patient to provide the many samples that research needs. In general, then, we cannot claim that research participation has indirect positive effects.

This is how the authors, including Tove Godskesen and Stefan Eriksson at CRB, reason in the clearly written article in BMC Cancer: Are cancer patients better off if they participate in clinical trials? A mixed methods study. Tove Godskesen was the leader of the study.

An ethically important conclusion drawn in the article is the following. If we suggest to patients who consent to participation in trials that research means better treatment, then they receive misleading information. Instead, altruistic research participation should be emphasized. By participating in studies, patients support new knowledge that can enable better cancer treatments for future patients.

The article examines a case where the question “How do we know?” has the answer, “We do not know, it is just an opinion.” Then at least we know that we do not know! How do we know? Through the studies presented in the article – read it!

Pär Segerdahl

Written by…

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

Zandra Engelbak Nielsen, Stefan Eriksson, Laurine Bente Schram Harsløf, Suzanne Petri, Gert Helgesson, Margrete Mangset and Tove E. Godskesen. Are cancer patients better off if they participate in clinical trials? A mixed methods study. BMC Cancer 20, 401 (2020). https://doi.org/10.1186/s12885-020-06916-z

We have a clinical perspective

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Clinical cancer trials convey a culture of hope

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.

Pär Segerdahl

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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Who belongs to us?

Pär SegerdahlBioethics has a problem with human beings, the philosopher Roland Kipke writes. It must ask who belongs to our moral community. Who has rights? Who has human dignity? Who has the moral status usually attributed to healthy adult humans? Who has the right to life?

The question is: Who belongs to us? Are human embryos included in the community? Newborns? Those with advanced dementia? Intelligent animals?

A common response to the question is to propose a philosophical criterion. Two positions dominate in bioethics. One includes all biological human beings, thereby embryos, newborns and those with advanced dementia. Everyone who belongs to the species Homo sapiens belongs to the moral community.

The second position holds that species membership is irrelevant. Instead, the focus is on mental capacities that one holds characterize a “person.” For example, rationality and self-awareness. This excludes embryos, newborns and those with advanced dementia from the community. However, a rational chimpanzee may enter. All persons belong to the moral community, regardless of species affiliation.

Kipke shows how both criteria compel us to answer the question “Who belongs to us?” in ways that contradict most people’s moral intuitions. We might accept this if the positions could be justified by strong arguments, he says. However, such arguments are missing.

What should a poor philosophical gatekeeper do then? Who should be admitted into the community? Who should be kept out?

The solution to the gatekeeper’s dilemma, Kipke suggests, is our ordinary concept of the human. When we talk about “humans,” we usually do not use the scientific concept of a biological species. Our everyday concept of a human already has moral dimensions, he points out. We cannot see a human being without seeing a living person belonging to our community. According to this third position, all humans belong to the moral community.

The only problem is that the gatekeeper needs a criterion to distinguish the human members of the community. It is true that we have everyday uses of the word “human.” It is also true that we normally have no difficulties in distinguishing a human being. However, do these uses really contain a criterion suitable for more philosophical gatekeeper tasks? They do, according to Kipke. He holds that there is a characteristic “living human gestalt or the form of the body,” especially the face, which easily allows recognition of a human being, even when she is seriously injured and deformed.

The “living human form” would thus be the criterion. This form makes us equals in the moral community.

Kipke’s article is philosophically exciting and his criticism of the two dominant positions is revealing. Personally, I nevertheless find the still dominant preoccupation with the question “Who belongs to us?” somewhat terrifying, and perhaps even inhuman. Bioethics treats human concerns about, for example, genetics and stem cell research. Admittedly, people often express their concerns in the form of boundary issues. People who worry about the destruction of embryos in stem cell research, for example, can talk about the embryo as a human individual or as a potential person. However, addressing their worries by suggesting that our common language contains a criterion that has the authority to separate the members of the moral community will probably not still the minds of such worried and perhaps even angry humans. They need a lot more attention. Perhaps it turns out that the intellectual boundary issue concealed the living source of their concerns and made it impossible to treat the problem at its source.

I believe we need a bioethics that responds to moral concerns more humanly and communicatively than only as philosophical boundary issues. Could we not use our ordinary language to think together about the issues that worry us? To refer to an ordinary concept of the human as an arbiter that supposedly dictates the answers to bioethical boundary issues seems characteristic of a smaller community: one that is professionally preoccupied with philosophical boundary issues.

Is that not placing bioethics before life? Is it not putting the cart before the horse?

Pär Segerdahl

Kipke R. Being human: Why and in what sense it is morally relevant. Bioethics. 2019;00:1–11. https://doi.org/10.1111/bioe.12656

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How about personally optimized treatment?

Pär SegerdahlIt 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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Pragmatic trials without informed consent?

Pär SegerdahlRandomized controlled trials (RCTs) are considered to be the gold standard for determining a causal effect of medical interventions. To achieve this aim, possible confounding factors must be avoided. This implies excluding many patients from participating in the trial, for example, patients with concomitant conditions. A negative consequence of these exclusions, however, is limited generalizability. Studying the artificially uniform participant group, you will be able to determine a causal effect, but you will know much less about real-life treatment outcomes in the population where the intervention actually will be used.

Further artificiality is created by the written informed consent procedure, which excludes even further patients from participating in the trial. Moreover, because they know they participate in a clinical trial, participants may change their behavior.

All this points to the importance of so-called pragmatic randomized controlled trials. In such trials, the effectiveness of two approved and routinely prescribed medicines are compared in normal clinical practice. This avoids most of the artificiality of RCTs and significantly improves generalizability and practical clinical relevance. Randomization is still required for scientific purposes, however, and written informed consent is an ethical obligation.

The demand for written informed consent is an obstacle to pragmatic trials. By creating, once again, artificial selection of patients, results continue to be less generalizable, which detracts from the whole point of conducting pragmatic trials. In a recent paper in the BMJ, twelve authors, among them, Stefan Eriksson at CRB, therefore argue that “EU clinical trial regulations should be revised to allow the waiver or modification of informed consent in low risk pragmatic trials.”

Some would consider this suggestion to be controversial. We need to keep in mind, however, the extremely low risks of studies that compare standardly prescribed medicines in normal clinical practice. We need to balance that low risk against the enormous social value of generalizable findings in evidence-based medicine.

Pär Segerdahl

Dal-Ré, R. et al. Low risk pragmatic trials do not always require participants’ informed consent. BMJ 2019;364:l1092

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On “truly” understanding the risk

Pär SegerdahlIt 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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