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

Category: In the profession (Page 1 of 5)

Nurses’ experiences of tube feeding under restraint for anorexia

The eating disorder anorexia (anorexia nervosa) is a mental disorder that can be life-threatening if it is not treated. It is characterized by fear of gaining weight: you starve yourself to lose weight and do not understand that being underweight is dangerous. Even if most recover, the disease is associated with increased mortality and the most severely ill may need to be hospitalized.

Hospital care can involve both psychotherapy and drug treatment, but not everyone wants or is able to participate in the treatment, which of course also involves eating. They may lack motivation to change or refuse to see that they need treatment. If the malnutrition becomes life-threatening, it may be necessary to decide on tube feeding as a compulsory measure. Liquid nutrition is then given via a thin tube that is inserted through one nostril and down into the stomach.

Tube-feeding an adult who does not want to eat is reasonably a challenge for the nurses who have to perform the procedure. What are their experiences of the measure like? One study investigated the issue by interviewing nurses at a Norwegian inpatient ward where adult patients with severe anorexia were cared for. What did the nurses have to say?

An important theme was that one strove to provide good care even during the coercive measure. It must be so good that the patient voluntarily wants to stay in the ward after tube feeding. For example, the measure is never taken until one has gradually tried to encourage the patient to eat, asked the patient about the situation and discussed whether to use the tube instead. If tube feeding becomes necessary, one still tries to give the patient options, one tries to respect the patient’s autonomy as much as possible, even if it is a coercive measure. The nurses also described difficulties in balancing kindness and firmness during the procedure, difficulties in combining the role of being a helper and being a controller.

Another theme was ethical concerns when the doctor decided on tube feeding even though the patient’s BMI was not so low that the condition was life-threatening. One nurse stated that she sometimes found such situations so problematic that she refused to take part in the procedure.

The third theme was concerns about calling in staff from another ward to help restrain the patient while the nurse performed the tube feeding. Some nurses were concerned about how this might be experienced by patients with a history of abuse. Others saw the tube feeding as a life-saving measure and experienced no ethical concerns. However, participants in the study emphasized that tube feeding affects the relationship with the patient and that restraint can disrupt the relationship. A nurse told how she once performed tube feeding on a patient she had never met before, and with whom she had therefore not established a relationship, and how this then prevented a good relationship with that patient.

If you want to read for yourself what the nurses said and how the authors discussed their findings, read the study here: Nurses’ experience of nasogastric tube feeding under restraint for Anorexia Nervosa in a psychiatric hospital.

Interview studies that capture human experience through the participants’ own stories often yield unexpectedly meaningful insights. Subtle details of human life that you would not otherwise have thought of appear in the interview material. One such insight from this study was how the nurses made great efforts so that tube feeding could be perceived as good care with respect for the patient’s autonomy and dignity, despite the fact that it is a coercive measure. It also became clear that there were tensions in the situation that the nurses had difficulty dealing with, such as first performing the coercive measure and then comforting the patient and re-establishing the relationship that had been disrupted. One of the conclusions in the article is therefore that even the nurses who perform tube feeding are vulnerable.

Pär Segerdahl

Written by…

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

Brinchmann, B.S., Ludvigsen, M.S. & Godskesen, T. Nurses’ experience of nasogastric tube feeding under restraint for Anorexia Nervosa in a psychiatric hospital. BMC Medical Ethics 25, 111 (2024). https://doi.org/10.1186/s12910-024-01108-x

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Ethics needs empirical input

Psychological distress: an overlooked issue in immigrants

Psychological distress that ethnic minorities experience is an often overlooked problem. In France, the mental well-being of ethnic minorities, particularly those with North African immigrant backgrounds is an important issue to study. Both first- and second-generation immigrants face unique challenges that may make them more vulnerable to more general mental health issues, and psychological disorders. A fresh report from the European Fundamental Rights Association on being a Muslim in the EU (published on October 24, 2024) sheds some light on issues related to health and racial harassment and violence. The report did not study psychological issues specifically, but it is worth noting that race-related violence has psychological impact for 55 percent of the respondents (p. 21).

Vulnerability is frequently linked to ethnic minority status, leading to recurring experiences of discrimination and difficulties in reconciling cultural identity with a society that often prioritizes assimilation. In this context, assimilation tends to erase or disregard the original cultural heritage in favor of integration into the dominant culture. Such dynamics can lead to feelings of isolation, invalidation, and psychological distress among affected individuals.

Research on the mental health of French populations of North African descent remains largely neglected. In other regions, for example North America, mental health and immigration is much better studied. While the topic of discrimination has been explored in some areas, few studies have focused on the psychological effects of these experiences and the coping strategies adopted by these populations in France. Some research does indicate a rise in discrimination, but lack of comprehensive studies on this issue creates both a scientific and social void, keeping these topics largely invisible.

In other southern European countries such as Italy and Spain, the mental health problems of ethnic minorities are recognized, but do not yet receive the same attention as in North America. In Italy, studies on the mental health of minorities are mainly focused on recent migrants and refugees, not least because of the importance of migratory flows in the Mediterranean. Researchers are mainly interested in the traumas associated with exile and the precarious conditions of migrants, but issues of discrimination or systemic racism are less well explored.

In Spain, there is also research on the mental health of migrants, particularly from Latin America and North Africa. However, the framework remains focused on social integration and economic issues, and less on the dynamics of discrimination and ethnicity. Both countries are beginning to recognize the importance of these issues, but in-depth studies on the impact of racial discrimination on the mental health of ethnic minorities, as in all parts of Europe, are still limited.

One psychological phenomenon that is still underexplored in this context is “racial battle fatigue.” Introduced in the early 2000s by William A. Smith, this concept refers to the emotional and psychological stress accumulated by individuals who repeatedly face racism. It represents the emotional burden that ethnic minorities carry as a result of racial discrimination and societal expectations. This burden can drive individuals to minimize or suppress their own suffering to avoid being perceived as “weak” or “complaining.” These coping mechanisms can exacerbate psychological issues, creating a vicious cycle of untreated distress.

In academic and professional settings, there is often reluctance to openly discuss these challenges. Some individuals may regard these topics as taboo or controversial, limiting the opportunities for open dialogue and scientific advancement. This reflects a broader trend in the mental health field, where the specific needs of ethnic minorities, particularly in terms of tailored psychological care, are not adequately addressed.

If we are going to be able to provide concrete answers to these questions, we need to study this phenomenon and shed some light on the mechanisms underlying the psychological suffering of ethnic minorities. Research on the psychological distress experienced by ethnic minorities could also help develop therapeutic interventions better suited to these populations. A recent French pilot study can lead the way: in Rania Driouach’s sample of people with North African descent, 226 out of a total of 387 participants indicated heightened psychological distress on a transgenerational level. Her study is the first step towards a scientific framework that acknowledges the specific needs of these groups while promoting an inclusive and rigorous therapeutic approach. Perhaps such a framework can help pave the way for a better understanding of the effects of migration on psychological distress across generations, and provide better tools for the (mental) health care providers that provide both first and second line care.

This post is written by Rania Driouach (Nîmes University) and:

Sylvia Martin

Sylvia Martin, Clinical Psychologist and Senior Researcher at the Centre for Research Ethics & Bioethics (CRB)

We transcend disciplinary borders

End-of-life care: ethical challenges experienced by critical care nurses

In an intensive care unit, seriously ill patients who need medical and technical support for central bodily functions, such as breathing and circulation, are monitored and treated. Usually it goes well, but not all patients survive, despite the advanced and specialized care. An intensive care unit can be a stressful environment for the patient, not least because of the technical equipment to which the patient is connected. When transitioning to end-of-life care, one therefore tries to create a calmer and more dignified environment for the patient, among other things by reducing the use of life-sustaining equipment and focusing on reducing pain and anxiety.

The transition to end-of-life care can create several ethically challenging situations for critical care nurses. What do these challenges look like in practice? The question is investigated in an interview study with nurses at intensive care units in a Swedish region. What did the interviewees say about the transition to end-of-life care?

A challenge that many interviewees mentioned was when life-sustaining treatment was continued at the initiative of the physician, despite the fact that the nurses saw no signs of improvement in the patient and judged that the probability of survival was very low. There was concern that the patient’s suffering was thus prolonged and that the patient was deprived of the right to a peaceful and dignified death. There was also concern that continued life-sustaining treatment could give relatives false hope that the patient would survive, and that this prevented the family from supporting the patient at the end of life. Other challenges had to do with the dosage of pain and anti-anxiety drugs. The nurses naturally sought a good effect, but at the same time were afraid that too high doses could harm the patient and risk hastening death. The critical care nurses also pointed out that family members could request higher doses for the patient, which increased the concern about the risk of possibly shortening the patient’s life.

Other challenges had to do with situations where the patient’s preferences are unknown, perhaps because the patient is unconscious. Another challenge that was mentioned is when conscious patients have preferences that conflict with the nurses’ professional judgments and values. A patient may request that life-sustaining treatment cease, while the assessment is that the patient’s life can be significantly extended by continued treatment. Additional challenging situations can arise when the family wants to protect the patient from information that death is imminent, which violates the patient’s right to information about diagnosis and prognosis.

Finally, various situations surrounding organ donation were mentioned as ethically challenging. For example, family members may oppose the patient’s decision to donate organs. It may also happen that the family does not understand that the patient suffered a total cerebral infarction, and believes that the patient died during the donation surgery.

The results provide a good insight into ethical challenges in end-of-life care that critical care nurses experience. Read the article here: Critical care nurses’ experiences of ethical challenges in end-of-life care.

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, Alvariza A, Godskesen T. Critical care nurses’ experiences of ethical challenges in end-of-life care. Nursing Ethics. 2024;0(0). doi:10.1177/09697330241252975

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Ethics needs empirical input

Of course, but: ethics in palliative practice

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

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

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

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

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

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

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

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

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

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

Pär Segerdahl

Written by…

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

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

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We like real-life ethics

Can positive action improve a meritocracy?

Despite political efforts to change the situation, gender imbalance is still evident in European universities and research institutions. A powerful tool for change is positive action. The tool may seem to be at odds with the meritocratic values that distinguish academia. Resistance to such measures may seem particularly well-motivated in science, which is supposed to be value-neutral and only let academic merit be the decisive factor behind researchers’ success in the competition for employment and research grants.

However, merits can be assessed and measured in different ways and merit systems may, for historical reasons, favor men over women. There are still societal expectations that the woman should take the main responsibility for children and aging parents, as well as for other household tasks. This pattern is reflected in working life, where female researchers can be expected to also take care of the academic housework. Dual household work reasonably gives women worse conditions in a competitive work environment that rewards productivity and quantity. Can the merit system then be said to be value neutral? Or does it prevent important changes not only to the gender distribution, but also to the system itself, which possibly favors quantity over quality, certain types of research questions over others, and self-absorbed competition over good collaboration?

Meritocracies, like everything else in this world, are changeable. They can change without ceasing to be meritocracies. Positive action could give the academic merit system a push in a possibly better direction, with better ways of assessing scholarly merit, soon helping to render the tool redundant. We therefore need to approach the question of positive action with our eyes open to both opportunities and risks.

The European project MINDtheGEPs (gender equality in research) recently published a policy brief, intended to support thoughtful implementation of positive action in European research. The tool can be used in three important areas: when awarding research grants and fellowships, when hiring full professors, and in the composition of evaluation committees. The policy brief provides an overview of common arguments for and against in the debate about positive action in European research organizations, divided into these three important areas. It is instructive to see the arguments side by side, as well as the counterarguments against the counterarguments. Because is it really self-evident that positive action must undermine a meritocracy?

Read MINDtheGEPs’ policy brief here: Gender quotas & positive action: An attack on meritocracy? There you will also find case studies of positive action at two Italian universities.

MINDtheGEPs hosts a series of Open Forums to discuss gender equality in the academic and research & innovation sectors, to facilitate knowledge exchange and mutual learning among scholars, practitioners and professionals supporting gender equality policies and measures. On 20 March 2024, their next Open Forum, they will share and discuss the contents of their latest policy brief – exploring the contentious topic of positive action, assessing arguments for and against, and drawing insights from MINDtheGEPs’ Gender Equality Plan development.

Pär Segerdahl

Written by…

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

Solera C, Cipriani N, Holm Bodin A. (2023) Gender quotas & positive action: An attack on meritocracy? Zenodo. DOI: 10.5281/zenodo.1002437

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We challenge habits of thought

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

Research nurses on ethical challenges in recruiting participants for clinical research

In clinical research with participating patients, research nurses play a central role. On a daily basis, they balance the values of care and the needs of research. For these nurses, it is clear that patients’ informed consent for research participation is more than just a one-time event completed by signing the form. The written consent is the beginning of a long relationship with the patients. The process requires effective communication throughout the course of the study, from obtaining consent to subsequent interactions with patients related to their consent. The research nurses must continuously ensure that participating patients are well informed about how the study is progressing, that they understand any changes to the set-up or to the risks and benefits. If conditions change too much, a new consent may need to be obtained.

Despite research nurses being so deeply involved in the entire consent process, there is a lack of research on this professional group’s experiences of and views on informed consent. What problems and opportunities do they experience? In an interview study, Tove Godskesen, Joar Björk and Niklas Juth studied the issue. They interviewed 14 Swedish research nurses about ethical challenges related to the consent process and how the challenges were handled.

The challenges were mainly about factors that could threaten voluntariness. Informed consent must be given voluntarily, but several factors can threaten this ethically important requirement. The nurses mentioned a number of factors, such as rushed decision-making in stressful situations, excessively detailed information to patients, doctors’ influence over patients, and disagreement within the family. An elusive threat to voluntariness is patients’ own sometimes unrealistic hopes for therapeutic benefit from research participation. Why is this elusive? Because the hopes can make the patients themselves motivated to participate. However, if the hopes are unrealistic, voluntariness can be said to be undermined even if the patients want to participate.

How do the research nurses deal with the challenges? An important measure is to give patients time in a calm environment to thoughtfully consider their participation and discuss it. This also reduces the risk of participants dropping out of the study, reasoned the nurses. Time with the patients also helps the research nurses to understand the patients’ situation, so that the recruitment does not take place hastily and perhaps on the basis of unrealistic expectations, they emphasized. The interviewees also said that they have an important role as advocates for the patients. In this role, the nurses may need time to understand and more closely examine the patients’ perspectives and reasons for potentially withdrawing from the study, and to find suitable solutions. It can also happen that patients say no to participation even though they really want to, perhaps because they are overwhelmed by all the information that made participation sound complicated. Again, the research nurses may need to give themselves and the patients time for in-depth conversations, so that patients who want to participate have the opportunity to do so. Maybe it is not as complicated as it seemed?

Read the important interview study here: Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses’ experiences.

The study also highlights another possible problem that the research nurses raised, namely the questionable exclusion of certain groups from research participation (such as people who have difficulty understanding Swedish or have reduced cognitive ability). Such exclusion can mean that patients who want to participate in research are not allowed to do so, that certain groups have less access to new treatments, and that the scientific quality of the studies is hampered.

Pär Segerdahl

Written by…

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

Godskesen, T., Björk, J. & Juth, N. Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses’ experiences. Trials 24, 801 (2023). https://doi.org/10.1186/s13063-023-07844-6

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Ethics needs empirical input

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.

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We recommend conferences

Questions about evidence and guidelines in healthcare

Finding your way through the complex web of guidelines and requirements for evidence in healthcare can be challenging. It is easy to imagine that these guidelines are downloaded from above, like a collection of commandments, but the truth is that they are shaped and changed in a complex process of negotiation and deliberation.

My colleagues and I in prosthetics and orthotics in Region Uppsala in Sweden are involved in the procurement of orthopedic devices for patients, such as prostheses, orthoses, splints, sitting frames, medical corsets, orthopedic shoes and insoles. We often ask ourselves an important question: Who should receive tax-funded prosthetics and orthotics devices and how expensive should they be? Where do we find guidelines for our decisions? An example of a guiding document is the general guidelines for the prescription of assistive devices in the County Council of Uppsala (from 2015). This document is based on the laws and guidelines of the parliament, UN conventions and the Council’s own plans. It becomes clear that guidelines are not isolated rules, but rather an interweaving of different norms and values that guide healthcare decisions.

Despite clear priority levels and demands for individual assessment of health effects, we find that patients today are denied orthopedic devices with the argument that there is a lack of evidence that the aid works for the type of diagnosis in question. Is this argument as strong when it comes to orthopedic devices as it is when it comes to drug treatments? In the search for evidence in healthcare, randomized controlled trials (RCTs) are often required. But must all treatments be measured by the same yardstick? Applying an arm cast or using an assistive device that enables walking does not necessarily require the same level of evidence as more complex internal medicine treatments. Sometimes it should be enough to see with your own eyes and observe improvements, such as a better gait or reduced pain.

In addition to this possibly unfair situation, where a small patient group has to suffer from requirements that are reasonable for the majority but not for all patients, the availability and scope of assistive device prescription varies between different regions in Sweden. This variation raises questions about how guidelines and principles for prioritization in healthcare are interpreted in different regions. Although the overarching principles for priority setting are the same (the principle that all humans have equal value and the same right to care, the principle of need and solidarity, and of the principle of cost-effectiveness), the interpretation and application of these principles can apparently differ. Why is it like that? In some regions, a more comprehensive and individually adapted prescription of devices is given, while other regions are more restrictive. This variation raises important questions about fair and equal care. Providing fair and equal care does not just require following rules. It also requires that we deepen our understanding of how these rules are interpreted and applied in different parts of the country, as well as assess which requirements are reasonable in different practices. It is a complex balancing act between ensuring people’s equal value and right to health while managing resources efficiently. Prescription of assistive devices as a tool to support health and participation is emphasized in the guidelines in Uppsala, but it is important to reflect on how this tool is implemented in practice and what impact it has on people’s quality of life. A common basis in the WHO’s international classification of functional status, disability and health is a good starting point (as in the National Board of Health and Welfare’s support for prescribing assistive devices). But continued discussion and reflection is required to ensure that the patient’s individual health condition is taken into account (not just the patient group), and that devices are prescribed fairly across the country.

In my work, I reflect daily on guidelines and requirements for evidence. I think it is valuable if we who work with the prescription of orthopedic devices reflect on the origin of the guidelines and the requirements for evidence that we use in healthcare. Understanding the context around why the guidelines look the way they do is crucial for us to be able to understand and apply them in our practices. For example, how should we interpret the requirement for evidence when working with prosthetics and orthotics?

I will return to discuss possible answers to these questions in future blog posts. With this post I just wanted to raise the questions.

Written by…

Jennifer Viberg Johansson, Associate Professor in Medical Ethics at Uppsala University’s Centre for Research Ethics & Bioethics.

This post in Swedish

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