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

Tag: clinical ethics

Time to forget time

A theme in recent blog posts has been our need for time. Patients need time to be listened to; time to ask questions; time to decide whether they want to be included in clinical studies, and time for much more. Healthcare workers need time to understand the patients’ situation; time to find solutions to the individual problems of patients suffering from rheumatoid arthritis, and time for much more. This theme, our need for time, got me thinking about what is so great about time.

It could be tempting to conduct time and motion studies of our need for time. How much time does the patient need to spend with the doctor to feel listened to? How much time does the nurse need to spend with the patient to get the experience of providing good care? The problem with such studies is that they destroy the greatness of time. To give the patient or the nurse the measured time, prescribed by the time study, is to glance at the clock. Would you feel listened to if the person you were talking to had a stopwatch hanging around their neck? Would you be a good listener yourself if you waited for the alarm signal from the stopwatch hanging around your neck?

Time studies do not answer our question of what we need, when we need time. If it was really a certain amount of time we needed, say fifteen minutes, then it should make no difference if a ticking stopwatch hung around the neck. But it makes a difference! The stopwatch steals our time. So, what is so great about time?

I think the answer is well on its way to revealing itself, precisely because we give it time to come at its own pace. What we need when we need time, is to forget time! That is the great thing about having time. That we no longer think about it.

Again, it can be tempting to conduct time studies. How much time does the patient and the doctor need to forget time? Again, time studies ruin the greatness of time. How? They frame everything in time. They force us to think about time, even when the point is to forget it.

Our need for time is not about measured quantities of time, but about the timeless quality of not thinking about time. Thinking about time steals time from us. Since it is not really about time, it does not have to take that long.

Pär Segerdahl

Written by…

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

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We challenge habits of thought

Moral stress: what does the COVID-19 pandemic teach us about the concept?

Newly formed concepts can sometimes satisfy such urgent linguistic needs that they immediately seem completely self-evident. Moral stress is probably such a concept. It is not many decades old. Nevertheless, the concept probably appeared from the beginning as an all-too-familiar reality for many healthcare workers.

An interesting aspect of these immediately self-evident concepts is that they effortlessly find their own paths through language, despite our efforts to define the right path. They are simply too striking in living spoken language to be captured in the more rigid written language of definitions. However, the first definition of moral stress was fairly straightforward. This is how Andrew Jameton defined the concept:

“Moral distress arises when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action.”

Although the definition is not complicated in the written language, it still prevents the concept from speaking freely, as it wants to. For, do we not spontaneously want to talk about moral stress in other situations as well? For example, in situations where two different actions can be perceived as the right ones, but if we choose one action it excludes the other? Or in situations where something other than “institutional constraints” prevents the right course of action? Perhaps a sudden increase in the number of patients.

Here is a later definition of moral stress, which leaves more open (by Kälvemark, Höglund and Hansson):

“Traditional negative stress symptoms that occur due to situations that involve an ethical dimension where the health care provider feels he/she is not able to preserve all interests at stake.”

This definition allows the concept to speak more freely, in more situations than the first, although it is possibly slightly more complicated in the written language. That is of course no objection. A definition has other functions than the concept being defined, it does not have to be catchy like a song chorus. But if we compare the definitions, we can notice how both express the authors’ ideas about morality, and thus about moral stress. In the first definition, the author has the idea that morality is a matter of conscience and that moral stress occurs when institutional constraints of the profession prevent the practitioner from acting as conscience demands. Roughly. In the second definition, the authors have the idea that morality is rather a kind of balancing of different ethical values and interests and that moral stress arises in situations that prevent the trade-offs from being realized. Roughly.

Why do I dwell on the written and intellectual aspects of the definitions, even though it is hardly an objection to a definition? It has to do with the relationship between our words and our ideas about our words. Successful words find their own paths in language despite our ideas about the path. In other words: despite our definitions. Jameton both coined and defined moral (di)stress, but the concept almost immediately stood, and walked, on its own feet. I simply want to remind you that spoken-language spontaneity can have its own authority, its own grounding in reality, even when it comes to newly formed concepts introduced through definitions.

An important reason why the newly formed concept of moral stress caught on so immediately is probably that it put into words pressing problems for healthcare workers. Issues that needed to be noticed, discussed and dealt with. One way to develop the definition of moral stress can therefore be to listen to how healthcare workers spontaneously use the concept about situations they themselves have experienced.

A study in BMC Medical Ethics does just this. Together with three co-authors, Martina E. Gustavsson investigated how Swedish healthcare workers (assistants, nurses, doctors, etc.) described moral stress during the COVID-19 pandemic. After answering a number of questions, the participants were requested to describe, in a free text response, situations during the pandemic in which they experienced moral stress. These free text answers were conceptually analyzed with the aim of formulating a refined definition of moral stress.

An overarching theme in the free text responses turned out to be: being prevented from providing good care to needy patients. The healthcare workers spoke of a large number of obstacles. They perceived problems that needed to be solved, but felt that they were not taken seriously, that they were inadequate or forced to act outside their areas of expertise. What stood in the way of good care? The participants in the study spoke, among other things, about unusual conditions for decision-making during the pandemic, about tensions in the work team (such as colleagues who did not dare to go to work for fear of being infected), about substandard communication with the organizational management. All this created moral stress.

But they also talked about the pandemic itself as an obstacle. The prioritization of COVID-19 patients meant that other patients received worse care and were exposed to the risk of infection. The work was also hindered by a lack of resources, such as personal protective equipment, while the protective equipment prevented staff from comforting worried patients. The visiting restrictions also forced staff to act as guards against patients’ relatives and isolate infected patients from their children and partners. Finally, the pandemic prevented good end-of-life care. This too was morally stressful.

How can the healthcare workers’ free text responses justify a refined definition of moral stress? Martina E. Gustafsson and co-authors consider the definition above by Kälvemark, Höglund and Hansson as a good definition to start from. But one type of situation that the participants in the study described probably falls outside that definition, namely the situation of not being taken seriously, of feeling inadequate and powerless. The study therefore proposes the following definition, which includes these situations:

“Moral stress is the kind of stress that arises when confronted with a moral challenge, a situation in which it is difficult to resolve a moral problem and in which it is difficult to act, or feeling insufficient when you act, in accordance with your own moral values.”

Here, too, one can sense an idea of morality, and thus of moral stress. The authors think of morality as being about solving moral problems, and that moral stress arises when this endeavor encounters challenges, or when one feels inadequate in the attempts to solve the problems. The definition can be considered a refined idea of what moral stress is. It describes more precisely the relevant situations where healthcare workers spontaneously want to talk about moral stress.

Obviously, we can learn a lot about the concept of moral stress from the experience of the COVID-19 pandemic. Read the study here, which contains poignant descriptions of morally stressful situations during the pandemic: “Being prevented from providing good care: a conceptual analysis of moral stress among health care workers during the COVID-19 pandemic.”

Finally, I would like to mention two general lessons about language, which in my view the study highlights. The first is that we can learn a lot about our concepts through the difficulties of defining them. The study took this “definition resistance” seriously by listening to how healthcare workers spontaneously talk about moral stress. This created friction that helped refine the definition. The second lesson is that we often use words despite our ideas about what the words mean or should mean. Spoken language spontaneity has a natural weight and authority that we easily overlook, but from which we have much to learn – as in this empirical study.

Pär Segerdahl

Written by…

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

Gustavsson, M.E., von Schreeb, J., Arnberg, F.K. et al. “Being prevented from providing good care: a conceptual analysis of moral stress among health care workers during the COVID-19 pandemic”. BMC Med Ethics 24, 110 (2023). https://doi.org/10.1186/s12910-023-00993-y

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Minding our language

Medical ethics conference in Uppsala, 10–11 June 2024

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

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

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

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

Pär Segerdahl

Written by…

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

This post in Swedish

We recommend conferences

YouTube as a source of information on paediatric cancer trials

YouTube has become an easily accessible source of information on a variety of issues, from how to fix a puncture to what Plato meant by love, and much more. Of course, YouTube can also serve as a source of health information. Regarding certain issues of health, it may be of importance to review whether the information in the uploaded videos is reliable.

A sensitive research ethical issue is what it means for children to participate in clinical cancer trials. Parents of children with cancer can be asked to give informed consent, agreeing to let their child to participate in such a study. Since the information from the researchers is difficult to understand, as is the whole situation of the family, it is conceivable that many choose to obtain information from the Internet and social media such as YouTube. If so, what kind of information do they get? Is the information ethically satisfactory?

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund and Stefan Eriksson recently conducted a review of YouTube as a source of information on clinical trials for paediatric cancer. The survey was limited to videos in English posted 2010 or later, not more than 20 minutes long and with more than 100 views. Most of the videos had been produced by centres, hospitals or foundations that conduct paediatric cancer studies. The videos were graded using an instrument (DISCERN), the questions of which were adapted to the purpose of measuring the research ethical reliability of the videos. The authors found that 20 percent of the videos were useful without serious shortcomings; almost 50 percent of the videos were misleading with serious shortcomings; 30 percent were classified as inappropriate sources of information. No video could be classified as excellent.

The quality of the videos was thus generally low from a research ethical point of view. A particularly serious problem had to do with the fact that half of the videos focused on new experimental treatments or innovative early clinical trials with children whose cancer had recurred or where the standard treatment had failed. In such Phase 1 clinical trials, one mainly investigates what doses of the drug can be given without too many or too severe adverse effects. Such studies cannot be expected to have any positive therapeutic effect for these children. Instead of emphasizing this ethical difficulty in Phase 1 trials, a hopeful affective language was used in the videos suggesting new therapeutic possibilities for the children.

The authors draw the practical conclusion that children with cancer and their parents may need advice on the quality of the often anecdotal healthcare information that can be found in videos online. Because video is simultaneously an excellent medium for information to both parents and children, the authors suggest that healthcare providers produce and upload high-quality information on clinical paediatric cancer studies.

Read the article in the journal Information, Communication & Society: YouTube as a source of information on paediatric cancer trials.

Pär Segerdahl

Written by…

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

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund & Stefan Eriksson (2021) YouTube as a source of information on clinical trials for paediatric cancer, Information, Communication & Society, DOI: 10.1080/1369118X.2021.1974515

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We care about communication

When established treatments do not help

What should the healthcare team do when established treatments do not help the patient? Should one be allowed to test a so-called non-validated treatment on the patient, where efficacy and side effects have not yet been determined scientifically?

Gert Helgesson comments on this problem in Theoretical Medicine and Bioethics. His comment concerns suggestions from authors who in the same journal propose a specific restrictive policy. They argue that if you want to test a non-validated treatment, you should from the beginning plan this as a research project where the treatment is tested on several subjects. Only in this way do you get data that can form the basis for scientific conclusions about the treatment. Above all, the test will undergo ethical review, where the risks to the patient and the reasons for trying the treatment are carefully assessed.

Of course, it is important to be restrictive. At the same time, there are disadvantages with the specific proposal above. If the patient has a rare disease, for example, it can be difficult to gather enough patients to draw scientific conclusions from. Here it may be more reasonable to allow case reports and open storage of data, rather than requiring ethically approved clinical trials. Another problem is that clinical trials take place under conditions that differ from those of patient care. If the purpose is to treat an individual patient because established treatments do not work, then it becomes strange if the patient is included in a randomized study where the patient may end up in the control group which receives the standard treatment. A third problem is when the need for treatment is urgent and there is no time to approach an ethical review board and await their response. Moreover, is it reasonable that research ethical review boards make treatment decisions about individual patients?

Gert Helgesson is well aware of the complexity of the problem and the importance of being careful. Patients must not be used as if they were guinea pigs for clinicians who want to make quick, prestigious discoveries without undergoing proper research ethical review. At the same time, one can do a lot of good for patients by identifying new effective treatments when established treatments do not work. But who should make the decision to test a non-validated treatment if it is unreasonable to leave the decision to a research ethical board?

Gert Helgesson suggests that such decisions on non-validated treatments can reasonably be made by the head of the clinic, and that a procedure for such decisions at the clinic level should exist. For example, an advisory hospital board can be appointed, which supports discussions and decisions at the clinic level about new treatments. The fact that a treatment is non-validated does not mean that there are no empirical and theoretical reasons to believe that it might work. Making a careful assessment of these reasons is an important task in these discussions and decisions.

I hope I have done justice to Gert Helgesson’s balanced discussion of a complex question: What is a reasonable framework for new non-validated treatments? In some last-resort cases where the need for care is urgent, for example, or the disease is rare, decisions about non-validated treatments should be clinical rather than research ethical, concludes Gert Helgesson. The patient must, of course, consent and a careful assessment must be made of the available knowledge about the treatment.

Pär Segerdahl

Written by…

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

Helgesson, G. What is a reasonable framework for new non-validated treatments?. Theor Med Bioeth 41, 239–245 (2020). https://doi.org/10.1007/s11017-020-09537-6

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We recommend readings

Nurses’ vulnerable position when care and research coincide

Pär SegerdahlA new article highlights ethical challenges that nurses face in their profession when more and more clinical trials are conducted on cancer patients.

Nursing alone is stressful. Studies have shown how heavy workload and being pressed for time can cause moral blindness and emotional immunization among nurses. In clinical trials, the situation is even more complicated, due to dual professional roles. The nurses have to accommodate both the values of care and the values of research. Caring for cancer patients coincides with recruiting patients as research participants and coordinating clinical trials on them according to detailed research protocols.

The article by Tove Godskesen et al. describes challenges faced by nurses burdened with this dual professional identity. The most difficult challenges concern cancer patients near the end of life, who no longer respond to the standard therapy. They often hope desperately that research participation will give them access to the next generation of cancer drugs, which may work more efficiently on them. This unrealistic hope creates difficulties for the nurses. They must recruit cancer patients to clinical trials, while the patients often are so terminally ill that they, from a perspective of caring, perhaps rather should be allowed to end their lives in peace and quiet.

An additional complication, next to the heavy workload in nursing and the dual identity as a nurse in the service of research, is that the number of clinical trials increases. There is a political ambition to accelerate the development, to support the Nordic pharmaceutical industry. This means that more and more nurses are engaged to coordinate trials: a task for which they rarely were trained, for which they hardly have time to prepare, and over which they lack power, given their position in the hierarchy of healthcare.

In view of the political ambition to increase the number of clinical trials, there should be a corresponding ambition to support the increasing number of nurses who will have to assume dual professional roles. Godskesen’s study indicates that there is a lack of systematic strategies to handle the situation. Nurses who coordinate trials on patients support each other, to the best of their abilities, over a quick cup of coffee.

Godskesen recommends more strategic training and better support for nurses working with clinical trials. For the nurses’ sake, and not least for the sake of patient safety.

Pär Segerdahl

Tove E. Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset, Merja Pirinen, Zandra Engelbak Nielsen. 2018. When Nursing Care and Clinical Trials Coincide: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges. Journal of Empirical Research on Human Research Ethics. doi.org/10.1177/1556264618783555

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We have a clinical perspective : www.ethicsblog.crb.uu.se

Ethical competence for the decision not to resuscitate

Pär SegerdahlSometimes, 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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We have a clinical perspective : www.ethicsblog.crb.uu.se

 

Physicians’ experiences of do-not-resuscitate orders

Pär SegerdahlCritically ill patients sometimes have such a poor prognosis that cardiopulmonary resuscitation for cardiac arrest (CPR) would not help. They are so weak that they would not survive the treatment. If they survive, they do so with even poorer quality of life. The physician can then write a so-called DNR decision, which means that CPR should not be performed.

Mona Pettersson, PhD student at CRB, writes her thesis on these decisions. I have previously written about her first study, in which she interviewed nurses about their experiences of DNR decisions at Swedish hematology and oncology departments.

This summer the Journal of Palliative Care and Medicine published the second study, in which physicians were interviewed about their experiences of these decisions.

In the interview material, Mona Pettersson discerns three roles that physicians perceive they have. They act as decision maker, as patient advocate and mediator for relatives, and as team member. Physicians describe their experiences of these roles, such as the importance of making clear to relatives that it is the physician who makes the decision – so that relatives don’t risk feeling guilty.

The interviews with physicians also contain descriptions of ethical difficulties associated with DNR decisions. Although the physicians emphasize that the decision is made on medical grounds, they also describe ethical challenges and trade-offs. The decisions seem to be especially difficult in hematology wards, where patients can get intensive treatment for a long time, and where even the treatment makes them ill, but almost up to the last moment can be regarded as treatable. Here decisions are made quickly and at a late stage. Physicians’ experiences of the decision not to resuscitate vary from experiencing that they make themselves God, to experiencing it as just one medical decision among others.

In her conclusion, Mona Pettersson emphasizes that the results indicate how DNR decisions are made not only on medical grounds (such as prognosis and prospect of surviving cardiopulmonary resuscitation). They are made also with reference also to ethical values such as autonomy and quality of life after resuscitation.

In her future research, Mona Petterson will examine the ethical skills needed in DNR decisions and how they can be learned and developed.

Pär Segerdahl

Pettersson, M. Hedström, M. and Höglund, A. Physicians’ experiences of do-not-resuscitate (DNR) orders in hematology and oncology care – a qualitative study. Journal of Palliative Care and Medicine. 2016. DOI: 10.4172 / 2165-7386.1000275

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We have a clinical perspective : www.ethicsblog.crb.uu.se