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

Month: March 2021

Patient integrity at the end of life

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

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

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

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

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

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

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

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

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

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

Pär Segerdahl

Written by…

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

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

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We like real-life ethics

Two new dissertations!

Two of our doctoral students at CRB recently successfully defended their dissertations. Both dissertations reflect a trend in bioethics from purely theoretical studies to also include empirical studies of people’s perceptions of bioethical issues.

Åsa Grauman’s dissertation explores the public’s view of risk information about cardiovascular disease. The risk of cardiovascular disease depends on many factors, both lifestyle and heredity influence the risk. Many find it difficult to understand such risk information and many underestimate their risk, while others worry unnecessarily. For risk information to make sense to people, it must be designed so that recipients can benefit from it in practice. That requires knowing more about their perspective on risk, how health information affects them, and what they think is important and unimportant when it comes to risk information about cardiovascular disease. One of Åsa Grauman’s conclusions from her studies of these issues is that people often estimate their risk on the basis of self-assessed health and family history. As this can lead to the risk being underestimated, she argues that health examinations are important which can nuance individuals’ risk assessments and draw their attention to risk factors that they themselves can influence.

If you want more conclusions and see the studies behind them, read Åsa Grauman’s dissertation: The publics’ perspective on cardiovascular risk information: Implications for practice.

Mirko Ancillotti’s dissertation explores the Swedish public’s view of antibiotic resistance and our responsibility to reduce its prevalence. The rise of antibiotic-resistant bacteria is one of the major global threats to public health. The increase is related to our often careless overuse of antibiotics in society. The problem needs to be addressed both nationally and internationally, both collectively and individually. Mirko Ancillotti focuses on our individual responsibility for antibiotic resistance. He examines how such a responsibility can be supported through more effective health communication and improved institutional conditions that can help people to use antibiotics more judiciously. Such support requires knowledge of the public’s beliefs, values ​​and preferences regarding antibiotics, which may affect their willingness and ability to take responsibility for their own use of antibiotics. One of the studies in the dissertation indicates that people are prepared to make significant sacrifices to reduce their contribution to antibiotic resistance.

If you want to know more about the Swedish public’s view of antibiotic resistance and the possibility of supporting judicious behaviour, read Mirko Ancillotti’s dissertation: Antibiotic Resistance: A Multimethod Investigation of Individual Responsibility and Behaviour.

Pär Segerdahl

Written by…

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

Åsa Grauman. 2021. The publics’ perspective on cardiovascular risk information: Implications for practice. Uppsala: Acta Universitatis Upsaliensis.

Mirko Ancillotti. 2021. Antibiotic Resistance: A Multimethod Investigation of Individual Responsibility and Behaviour. Uppsala: Acta Universitatis Upsaliensis.

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Ethics needs empirical input

Human rights and legal issues related to artificial intelligence

How do we take responsibility for a technology that is used almost everywhere? As we develop more and more uses of artificial intelligence (AI), the challenges grow to get an overview of how this technology can affect people and human rights.

Although AI legislation is already being developed in several areas, Rowena Rodrigues argues that we need a panoramic overview of the widespread challenges. What does the situation look like? Where can human rights be threatened? How are the threats handled? Where do we need to make greater efforts? In an article in the Journal of Responsible Technology, she suggests such an overview, which is then discussed on the basis of the concept of vulnerability.

The article identifies ten problem areas. One problem is that AI makes decisions based on algorithms where the decision process is not completely transparent. Why did I not get the job, the loan or the benefit? Hard to know when computer programs deliver the decisions as if they were oracles! Other problems concern security and liability, for example when automatic decision-making is used in cars, medical diagnosis, weapons or when governments monitor citizens. Other problem areas may involve risks of discrimination or invasion of privacy when AI collects and uses large amounts of data to make decisions that affect individuals and groups. In the article you can read about more problem areas.

For each of the ten challenges, Rowena Rodrigues identifies solutions that are currently in place, as well as the challenges that remain to be addressed. Human rights are then discussed. Rowena Rodrigues argues that international human rights treaties, although they do not mention AI, are relevant to most of the issues she has identified. She emphasises the importance of safeguarding human rights from a vulnerability perspective. Through such a perspective, we see more clearly where and how AI can challenge human rights. We see more clearly how we can reduce negative effects, develop resilience in vulnerable communities, and tackle the root causes of the various forms of vulnerability.

Rowena Rodrigues is linked to the SIENNA project, which ends this month. Read her article on the challenges of a technology that is used almost everywhere: Legal and human rights issues of AI: Gaps, challenges and vulnerabilities.

Pär Segerdahl

Written by…

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

Rowena Rodrigues. 2020. Legal and human rights issues of AI: Gaps, challenges and vulnerabilities. Journal of Responsible Technology 4. https://doi.org/10.1016/j.jrt.2020.100005

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We recommend readings

Learning from international attempts to legislate psychosurgery

So-called psychosurgery, in which psychiatric disorders are treated by neurosurgery, for example, by cutting connections in the brain, may have a somewhat tarnished reputation after the insensitive use of lobotomy in the 20th century to treat anxiety and depression. Nevertheless, neurosurgery for psychiatric disorders can help some patients and the area develops rapidly. The field probably needs an updated regulation, but what are the challenges?

The issue is examined from an international perspective in an article in Frontiers in Human Neuroscience. Neurosurgery for psychiatric disorders does not have to involve destroying brain tissue or cutting connections. In so-called deep brain stimulation, for example, electrical pulses are sent to certain areas of the brain. The method has been shown to relieve movement disorders in patients with Parkinson’s disease. This unexpected possibility illustrates one of the challenges. How do we delimit which treatments the regulation should cover in an area with rapid scientific and technical development?

The article charts legislation on neurosurgery for psychiatric disorders from around the world. The purpose is to find strengths and weaknesses in the various legislations. The survey hopes to justify reasonable ways of dealing with the challenges in the future, while achieving greater international harmonisation. The challenges are, as I said, several, but regarding the challenge of delimiting the treatments to be covered in the regulation, the legislation in Scotland is mentioned as an example. It does not provide an exhaustive list of treatments that are to be covered by the regulation, but states that treatments other than those listed may also be covered.

If you are interested in law and want a more detailed picture of the questions that need to be answered for a good regulation of the field, read the article: International Legal Approaches to Neurosurgery for Psychiatric Disorders.

Pär Segerdahl

Written by…

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

Chandler JA, Cabrera LY, Doshi P, Fecteau S, Fins JJ, Guinjoan S, Hamani C, Herrera-Ferrá K, Honey CM, Illes J, Kopell BH, Lipsman N, McDonald PJ, Mayberg HS, Nadler R, Nuttin B, Oliveira-Maia AJ, Rangel C, Ribeiro R, Salles A and Wu H (2021) International Legal Approaches to Neurosurgery for Psychiatric Disorders. Front. Hum. Neurosci. 14:588458. doi: 10.3389/fnhum.2020.588458

This post in Swedish

Thinking about law