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

Category: In the profession (Page 2 of 5)

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

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

We want to be just

Antimicrobial resistance: bringing the AMR community together

According to the WHO, antibiotic resistance is one of the biggest threats to global health, food security and development. Most of the disease burden is in the global south, but drug resistant infections can affect anyone, in any part of the world. Bacteria are always evolving, and antibiotic resistance is a natural process that develops through mutations. We can slow down the process by using antibiotics responsibly, but to save lives, we urgently need new antibiotics to fight the resistant bacteria that already today threaten our health.

There is a dilemma here: development of new antibiotics is a high-risk business, with very low return of investment, and big pharma is leaving the antibiotics field for precisely this reason. Responsible use of antibiotics means saving new drugs for the most severe cases. There are several initiatives filling the gap this creates. One example is the Innovative Medicines Initiative AMR Accelerator programme, with 9 projects working together to fill the pipeline with new antibiotics, and developing tools and infrastructures that can support antibiotics development.

Antimicrobial resistance (AMR) to antibiotics and other anti-infectives is a community problem. Managing it requires a community coming together to find solutions and work together to develop research infrastructures. For example, assessing the effectiveness of new antibiotics requires standardised high-quality infection models that can become available to projects, companies and research groups that are developing new antibacterial treatments. Recently, the AMR Accelerator COMBINE project announced a collaboration with some of the big players in the field: CARB-X, CAIRD, iiCON and Pharmacology Discovery Services. This kind of collaboration allows key actors to come together and share both expertise and data. The COMBINE project is developing a standardised protocol for an in vivo pneumonia model. It will become available to the scientific community, along with a bank of reference strains of Gram-negative bacteria that are clinically relevant, complete with a framework to bridge the gap between preclinical data and clinical outcomes based on mathematical modelling approaches.

The benefit of a standardised model is to support harmonisation. Ideally, data on how effective new antibiotic candidates are should be the same, regardless of the lab that performed the experiments. The point of the collaboration is to improve quality of the COMBINE pneumonia model. But who are they and what will they do? CARB-X (Combating Antibiotic-Resistant Bacteria Biopharmaceutical Accelerator) is a global non-profit partnership that supports early-stage antibacterial research and development. They will help validation of the pneumonia model. CAIRD (Center for Anti-Infective Research and Development) is working to advance anti-infective pharmacology. They are providing a benchmark by back-translation of clinical data. iiCON has a mission to accelerate and support the discovery and development of innovative new anti-infectives, diagnostics, and preventative products. They are supporting the mathematical modelling to ensure optimal dose selection. And finally, Pharmacology Discovery Services, a contract research organisation (CRO) working with preclinical antibacterial development, will supply efficacy data.

At the centre of this is the COMBINE project, which has a coordinating role in the AMR Accelerator: a cluster of public-private partnership projects funded by the Innovative Medicines Initiative (IMI). The AMR Accelerator brings together academia, pharma industry, patient organisations, non-profits and small and medium sized companies. The aim is to develop a robust pipeline of antibiotics and standardised tools that can be used by others in this community, to help in the fight against antimicrobial resistance.

In parallel, the effort to slow down antibiotic resistance continues. For example, Uppsala University coordinates the COMBINE project, and in 2016, the University founded the Uppsala Antibiotic Center, a multidisciplinary centre for research, education, innovation and awareness. The centre runs the AMR Studio podcast, showcasing some of the multidisciplinary research on antimicrobial resistance around the world. The University is also coordinating the ENABLE-2 antibacterial drug discovery platform funded by the Swedish Research Council, with an open call to support programmes in the early stages of discovery and development of new antibiotics.

Our own efforts at the Centre for Research Ethics & Bioethics are more focused on how we as individuals can help slow down the development of antibiotic resistance, and how we can assess the impact of how you frame antibiotic treatments when you ask patients about their preferences

Josepine Fernow

Written by…

Josepine Fernow, science communications project manager and coordinator at the Centre for Research Ethics & Bioethics, develops communications strategy for European research projects

Do you want to know more?

EurekAlert! News release: Collaboration to improve the quality of in vivo antibiotics testing, 14 November 2023 https://www.eurekalert.org/news-releases/1007971.

Ancillotti M, Nihlén Fahlquist J, Eriksson S, Individual moral responsibility for antibiotic resistance, Bioethics, 2022;36(1):3-9. https://doi.org/10.1111/bioe.12958

Smith IP, Ancillotti M, de Bekker-Grob EW, Veldwijk J. Does It Matter How You Ask? Assessing the Impact of Failure or Effectiveness Framing on Preferences for Antibiotic Treatments in a Discrete Choice Experiment. Patient Prefer Adherence. 2022;16:2921-2936. https://doi.org/10.2147/PPA.S365624

A shorter version of this post in Swedish

Approaching future issues

How do we find out if drugs are safe for groups excluded from clinical trials?

Drug development requires that the drug is tested on patients in clinical trials. Not only the drug’s effectiveness is tested on the patients, but also its safety. Does the drug have serious side effects and what dosage is safe? Thanks to such clinical research, approved drugs can be provided with safety information, which enables doctors and patients to make informed decisions about drug treatment.

However, there are vulnerable groups that are often excluded from clinical studies, such as pregnant and breastfeeding women. But this protection of a vulnerable group can make the group extra vulnerable when deciding on drug treatment. If there is no evidence, it is not known whether the medicine the woman needs risks harming her, the fetus or the child being breastfed. It is also not known what dosage should be recommended. Perhaps the woman herself refrains from taking a medicine she needs, or receives advice from the doctor to refrain from it. Not because one knows that the medicine poses risks for the group, but because one does not know.

Are there other ways to obtain evidence on medicine safety for pregnant and breastfeeding women, besides clinical studies? Yes, there are, because pregnant and breastfeeding women must of course often use medication. Several registers already contain data from women who use medicines during pregnancy. In addition, pregnant and breastfeeding women using medicines may be engaged in additional data collection activities. Thus, there is already data as well as additional opportunities to collect data, without involving the group in clinical studies.

Josepine Fernow describes in Uppsala Reports such an attempt to compile existing data and expand the possibilities of collecting new data: the European project IMI ConcePTION. This project is developing several different paths towards better future safety information about drug treatment during pregnancy and breastfeeding. One challenge is to develop a technical infrastructure where data collected in different registers and in different formats are harmonized so that they can be collected and handled in standardized ways. Another challenge is to enable pregnant women to easily report relevant data about their medication use, for example via a mobile application. The project also tries to produce new data on breastfeeding and medicine use. For example, milk is collected and analyzed from breastfeeding women who use various medicines, in order to understand and predict how these medicines are transferred to the breast milk and in what concentration. Two of these breastfeeding studies are underway in Sweden. They are coordinated by CRB and we will write about them on this blog.

ConcePTION is also developing a knowledge bank that will be available online from the end of 2024, which will make the data and knowledge generated by the project useful. There are thus several avenues for research along which one can generate evidence for better safety information about various medicines for pregnant and breastfeeding women, without involving the group in clinical studies.

Read Josepine Fernow’s description of the project here: Making medicines safer for pregnant and breastfeeding women. There you will also find several links to the project and to the project’s publications.

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

Part of international collaborations

How should coercive care be regulated within somatic healthcare?

Coercive measures against patients are regularly used in healthcare outside of psychiatry, for example in neurosurgical care. Examples of such measures are belting, boxing gloves, holding patients down, forced medication and hidden medication. It is mostly nurses who carry out these coercive measures. The most common motive for forcing patients is to protect them from harming themselves or others: patients may be confused or aggressive and try to pull out vital ports for intravenous drug administration or abuse staff, often without understanding what they are doing themselves. Because the staff act in a legal and moral gray zone, they often feel moral stress exercising coercion.

How can we regulate coercive care in a way that balances ethically relevant considerations about the measures, so that staff no longer have to act in a gray zone?

Different countries have chosen different paths to regulate coercive care within somatic healthcare. In Sweden, it is in principle illegal to use all forms of coercion without the support of compulsory psychiatric care. An overarching problem in the regulation of coercive care is to ensure that patients with reduced decision-making capacity receive the care they need and at the same time ensure that patients with a sufficient degree of decision-making capacity are not forced into care they do not want. In an article in the Journal of Medical Ethics, Amina Guenna Holmgren and I and two co-authors try to sort out these difficulties. Arguments about justice, trust in healthcare, minimizing harm and respect for autonomy are made for and against different national regulations. We conclude that a regulation that includes an assessment of the patients’ decision-making capacity and takes the patient’s best interests into account is preferable, in contrast to regulations based on psychiatric diagnoses or regulations where there are no legal possibilities to practice coercive care at all within somatic care.

If you want to take a closer look at our reasoning regarding the regulation of restraint in somatic healthcare and evaluate our proposal, you will find the article here: Restraint in somatic healthcare: how should it be regulated?

Niklas Juth

Written by

Niklas Juth, Professor of Clinical Medical Ethics at the Centre for Research Ethics & Bioethics (CRB)

Guenna Holmgren A, von Vogelsang A, Lindblad A, Niklas Juth. Restraint in somatic healthcare: how should it be regulated? Journal of Medical Ethics. Published Online First: 18 October 2023. doi: 10.1136/jme-2023-109240

This post in Swedish

Thinking about law

Ethics Council at Uppsala Region: Healthcare workers shouldn’t have to report undocumented patients

Last week, the Ethics Council in Region Uppsala sent a letter to the Ministry of Justice where the Council dissociates itself from a proposal in the Tidö Agreement, a political agreement between four parties in the Swedish Parliament. The part of the agreement that the Ethics Council dissociates itself from is a proposed obligation for healthcare professionals to report patients who are undocumented migrants to authorities.

The Ethics Council writes that such a duty would be in conflict with both international and national conventions and laws. It is also contrary to the ethics of all professions in healthcare and would entail a serious threat to patient safety. Healthcare workers have not signed up to enforce decisions on expulsion or refusal of entry. They are assigned to, and their expertise relates to, the assessment of patients’ needs and to provide the best available care with those needs as a starting point.

In a reflection on the Swedish healthcare legislation, the Ethics Council also writes that an obligation to report undocumented migrants is contrary to the principle of human dignity. The principle states that all human beings have equal value and the same right to care. This includes everyone, regardless of whether we have a right to stay in Sweden or not.

The Chair of the Ethics Council, Niklas Juth, today publishes a post in our Swedish language version of this blog which also contains the entire letter sent to the Ministry of Justice. If you read Swedish, you can find his blog post here: Etikrådet i Region Uppsala tar avstånd från förslaget om anmälningsplikt för vårdpersonal.

Pär Segerdahl

Written by…

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

We recommend readings

Ethical challenges when children with cancer are recruited for research

Cancer is a common cause of death among children, but improved treatments have significantly increased survival, especially in high-income countries. A prerequisite for this development is research.

When we think of a hospital, we think mainly of the care given to patients there. But care and research are largely developed together in the hospitals. Treatments given in the hospitals are tested in research carried out in the hospitals. This overlap of care and research in the same setting creates ethical challenges. Not least because it can be difficult to see and maintain the differences when, as I said, the activities overlap.

Kajsa Norbäck, PhD student at CRB, investigates in an interview study Swedish healthcare professionals’ perceptions and experiences of ethical challenges when children with cancer are recruited for research in the hospitals where they are patients. Research is needed for future childhood cancer care, but what are the challenges when approaching children with cancer and their parents with the question of research participation?

The interview material is rich and difficult to summarize in a blog post, but I want to highlight a few findings that particularly impressed me. I recommend those interested to take the time to read the entire article in peace and quiet. Interview studies provide a living direct contact with reality from the perspective of the interviewees. Kajsa Norbäck writes that interview studies give us informative examples of ethical challenges. Such examples are needed to give the ethical reflection concreteness and grounding in reality.

The interviewed healthcare professionals particularly emphasized the importance of establishing a trusting relationship with the family. Only when you have such a relationship does it make sense to discuss possible research participation. Personally, I cannot help but interpret it as meaning that the care relationship with patient and family must be established first. It is within the framework of the care relationship that possible research participation can be discussed in a trusting manner. But trust can also be a dilemma, the interviews show. The interviewees stated that many families had so much trust in healthcare and research that it could feel too easy and predictable to get consent for research participation. They also had the impression that parents could sometimes give consent to research out of fear of not having done everything they could to save the child, as if research was a last chance to get effective care.

The challenge of managing the overlap of care and research also extends to the professional role of the physician. Physicians have a care responsibility, but since the care they can offer rests on research, they also feel a research responsibility: they feel a responsibility to recruit research participants from among their patients. This dual responsibility can naturally create conflicts of interest, of which they give informative examples in the interviews.

In the middle of this force field of challenges we have the child, who may have difficulty making itself heard, perhaps because many of us have difficulty being a listener. Here is what one of the interviewees says: “We often talk about informing and I think that’s a strange word. I think the greatest competence is to listen.” There is a lot to listen to in Kajsa Norbäck’s interview study as well, more than I can reproduce in a blog post. Read her article here: Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences.

Pär Segerdahl

Written by…

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

Norbäck, K., Höglund, A.T., Godskesen, T. and Frygner-Holm, S. Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences. BMC Medical Ethics 24, 23 (2023). https://doi.org/10.1186/s12910-023-00901-4

This post in Swedish

Ethics needs empirical input

The branding of psychotherapy and responsible practice

Clinical psychologists receive degrees from universities, training them to effectively apply psychotherapy programs in psychiatry settings. But after graduation, whose responsibility is it to train, or perhaps re-train, clinical psychologists to practice “proper” therapy? Is it the responsibility of the owner of a three-letter branded protocol, such as DBT (Dialectical Behavior Therapy), SFT (Schema Focused Therapy) or MBSR (Metacognition Based Stress Reduction)? Or is it the responsibility of the health care systems that provide treatment? Perhaps they should ensure that a psychologist’s training is regularly updated, as in most other clinical professions?

As a clinical psychologist myself, with experience from practice in France, I want to address some challenges that I have experienced and reflected upon as I have tried to develop my own way of practicing therapy.

Medical training updates are widely encouraged for psychiatrists via the counting of credits for attending certified courses or international conferences (Continuing Medical Education Points). However, when it comes to clinical psychologists, the psychiatrists’ side-kicks offering psychotherapy treatment, there is no such unified system. Psychotherapy is in essence social work, and the success depends on the relationship between the therapist and the patient. But in many countries, particularly in the English speaking world, there is a tendency to brand specific therapeutic programs, such as the commonly known cognitive behavioral therapy, CBT, or versions of it such as dialectic behavioral therapy, DBT. Being “branded” as a psychotherapist comes with the advantage of being recurrently involved in seminars, training and follow-ups on our practice. But as a therapist, you are offering more than a program, you are offering years of experience and training. It is neither practical nor possible to “label” every little piece of training that made your practice look the way it does now. Yet psychotherapists face an entire branding system, with names such as DBT (Dialectical Behavioral Therapy), TFT (Transference Focused Therapy), SFT (Schema Focused Therapy) and MIT (Metacognition and Insight Therapy). All these names give structure, labels to refer to, which help both patients and colleagues to identify what happens in the therapy. But at the same time we might be confusing everyone involved with a jargon of acronyms. Depending on the cultural context, even using the word “client” instead of “patient” can be seen as subversive. The very idea that psychotherapy could be branded may appear strange and unusual. Are we considering the values at stake? Might not branding shift focus, from values of care towards economic considerations (such as selling your brand)? On the surface, it looks reasonable and as an approach that supports a fair distribution of care.

As an author of a CBT protocol myself, using a much longer acronym, ECCCLORE, I have been forced to question the underlying dynamic of naming or branding a particular kind of psychotherapy.  Like most of the CBT protocols, the effectiveness is in the structure of the protocol. Although I wanted to protect that structure, I did not want to rule out potential changes or improvements, but to make the protocol open to practitioners’ own experiences of using it with their patients. Therefore, I always encourage my students and colleagues to integrate the protocol with their own experiences, strengths and discoveries along the way.

Why? Well, because in using a protocol to engage with people in the intimate setting that psychotherapy is, we must also examine our values as caregivers, always considering the ethical principles of non-malevolence, respect and justice. And just as you must find your way to practice any branded therapy, you must find your way to observe these ethical principles in your work.

I was not harming my patients with the ECCCLORE protocol, but I created something that requires training to apply. Otherwise, like any mechanically applied protocol, it could potentially harm patients. Can that risk be overcome by adding another branded sub-protocol? There are already names all over the place in the CBT world. We all use “branded skills” such as Beck’s Columns and Padesky’s Polygram, and they are free to use, but they are just names for very commonly used tools, which we must again learn to use in practice.

When you dive into the specificity of “certified programs,” things start to become even more complicated. If I did not brand my project, anyone could use (or abuse) the ECCCLORE brand. For example, in France one needs to declare intellectual property in order to protect the project or research results from being stolen (as the research outcome is not considered the intellectual property of the researcher, as it is in Sweden). This means that anyone can use the name, even if it is unrelated to the CBT framework. But by acknowledging the creator’s intellectual property, it is possible for me to brand my own research protocol and evidence-based program, preventing misuse of the methods. But is it helping the replication and dissemination of the protocol? And if my ultimate goal is to offer the protocol to help as many patients as possible, is branding it the best solution?

I sensed an affinity between my own reflections and recent research that questioned the ethical guidelines for social justice work in psychology and outlined the need for social justice ethics. When I thought about branded CBT programs, I recognized ethical risks everywhere. If you pay a lot of money to be trained in Program A, you expect to be recognized as a Program A practitioner, and you expect to benefit from the specific expertise that you earned. Is it fair then to offer such services at premium prices? Or to refuse to have Program A training delivered to most of the clinical psychologists? Does it make the program more affordable and accessible to the patients in need of it? Is a society fair where most of the latest advances are not available to everyone, but only in private practice? Well, there are of course economic considerations, but on the clinical level it is not easy to sort out the pros and cons of these “acronymized” psychotherapies.

As a treatment developer, I do recognize that having a name to identify the program really helps. The social component of psychotherapy is known to be an important effectiveness factor. This was the case also for me. Avoiding any stigmatizing name of my therapeutic group, such as “Borderline Group,” was a move toward justice, respect and non-malevolence. I decided to create the acronym together with the first patient group, which helped create motivation and reflected the collaborative process. Because in therapy, it is the patients who have the most at stake. Along the way, I also had a chance to be trained in a manual-based psychotherapy, and I saw the advantages, as a clinician, to have a tribe supporting me as I entered their group. Branded evidence-based psychotherapies are organizing trainings and conferences, which offer many resources for their practitioners. They build up more and more specific results around subgroups of patients, and take responsibility for the full functioning of their practitioners.

Branded psychotherapies are probably here to stay, but I wanted to highlight some practical and ethical challenges that I have experienced and reflected upon as a treatment developer. Let me conclude with one final consideration about the future. In recent research on the effectiveness of personality disorder psychotherapy, the main factors were found to be the therapeutic attitude (active and collaborative) and the clarity of the protocol (the underlying theories). Future research may further investigate whether the branding of psychotherapies, which can be confusing, may also contribute to these factors.

Sylvia Martin

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

Sylvia Martin. (2022) Le programme ECCCLORE: Une nouvelle approche du trouble borderline. Deboeck Supérior.

In dialogue with patients

Dignity in a nursing home when the body fails

The proportion of elderly people in the population is increasing and the tendency is to provide care for the elderly at home as long as possible. Nursing homes are therefore usually inhabited by the very weakest, with several concurrent illnesses and often in need of palliative care.

Living a dignified life in old age naturally becomes more difficult when the body and mind fail and you become increasingly dependent on others. As a nursing home resident, it can be close at hand to feel unworthy and a nuisance. And as staff, in stressful situations it can happen that you sometimes thoughtlessly treat the elderly in an undignified manner.

Preserving the dignity of the elderly is an important responsibility of nursing homes. But what does reality look like for the residents? How does the care provider take responsibility for dignified care? And is it reasonable to regard the residents as passive recipients of dignified care? Isn’t such a view in itself undignified?

These questions suggest that we need to look more closely at the reality of the elderly in a nursing home. Bodil Holmberg has done this together with Tove Godskesen, in a study published in the journal BMC Geriatrics. Participatory observations and interviews with residents and staff at a nursing home in Sweden provided rich material to analyse and reflect on.

As expected, it was found that the major threat to the residents’ dignity was precisely how the body fails at a faster rate. This created fear of becoming increasingly dependent on others as well as feelings of anguish, loneliness and meaninglessness. However, it was also found that the elderly themselves had a repertoire of ways to deal with their situation. Their self-knowledge enabled them to distinguish between what they could still do and what they had to accept. In addition, aging itself gave rise to new challenges to engage with. One of the residents proudly told how they had developed a way to pick up the grabbing tong when it had been dropped, by sliding deeper into the wheelchair to reach the floor. Teaching new staff how to carry out intricate medical procedures also gave rise to pride.

As aging challenges a dignified life, older people thus develop self-knowledge and a whole repertoire of ways to maintain a dignified life. This is an essential observation that the authors make. It shows the importance of not considering nursing home residents as passive recipients of dignified care. If I understand the authors correctly, they suggest that we could instead think in terms of assisting older people when their bodies fail: assisting them in their own attempts to lead dignified lives.

Participatory observations and interviews can help us see reality more clearly. The method can clarify both the expected and the unexpected. Read the pertinent article here: Dignity in bodily care at the end of life in a nursing home: an ethnographic study

The authors also found examples of undignified treatment of the residents. In another article, also from this year, they discuss barriers and facilitators of ethical encounters at the end of life in a nursing home. Reference to the latter article can be found below.

Pär Segerdahl

Written by…

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

Holmberg, B., Godskesen, T. Dignity in bodily care at the end of life in a nursing home: an ethnographic study. BMC Geriatr 22, 593 (2022). https://doi.org/10.1186/s12877-022-03244-8

Holmberg, B., Godskesen, T. Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study. BMC Palliat Care 21, 134 (2022). https://doi.org/10.1186/s12904-022-01024-0

This post in Swedish

Ethics needs empirical input

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.

This post in Swedish

In dialogue with patients

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