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

Month: May 2024

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

This post in Swedish

We like real-life ethics

What is hidden behind the concept of research integrity?

In order to counteract scientific misconduct and harmful research, one often talks about protecting and supporting research integrity. The term seems to cover three different aspects of research, although the differences may not always be fully in mind. The term can refer to the character traits of individual researchers, for example, that the researcher values truth and precision and has good intentions. But the term can also refer to the research process, for example, that the method, data and results are correctly chosen, well executed and faithfully reproduced in scientific publications. Third, the term can refer to research-related institutions and systems, such as universities, ethical review, legislation and scientific journals. In the latter case, it is usually emphasized that research integrity presupposes institutional conditions beyond the moral character of individual researchers.

Does such a varied concept have to be problematic? Of course not, but possibly the concept of research integrity is less suitable, argue Gert Helgesson and William Bülow in an article that you can read here: Research Integrity and Hidden Value Conflicts.

In the article, they first discuss some ambiguities in the three uses of the concept of research integrity. Which personal traits are desirable in researchers and which values should they endorse? Does the integrity of the research process cover all ethically relevant aspects of research, including the application process, for example? Are research-related institutions actors with research integrity, or are they rather means that support research integrity?

Mentioning these ambiguities is not, as I understand it, intended as a decisive objection. Nor do the authors think that it is generally a shortcoming if concepts have a wide and varied use. But the concept of research integrity risks hiding value conflicts through its varying use, they argue. Suppose someone claims that, in order to protect and support research integrity, we should criminalize serious forms of scientific misconduct. This is perhaps true if by research integrity we refer to aspects of the research process, for example, that results are accurate and reliable. But the stricter regulation of research that this entails risks reducing the responsibility of individual researchers, which can undermine research integrity in the first sense. How should we compare the value of research integrity in the different senses? What does it mean to “increase research integrity”?

The concept of research integrity is not useless, the authors point out. But if we want to make value conflicts visible, if we want to clarify what we mean by research integrity and which forms of integrity are most important, as well as clear up the ambiguities mentioned above, then we will examine issues that are appropriately described as issues of research ethics.

If I understand the authors correctly, they mean that ethical questions about research should be characterized as research ethics. It is unfortunate that “research integrity” has come to function as an alternative designation for ethical questions about research. Everything becomes clearer if any questions about “research integrity,” if we want to use the concept, fall under research ethics.

Pär Segerdahl

Written by…

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

Helgesson, G., Bülow, W. Research Integrity and Hidden Value Conflicts. Journal of Academic Ethics 21, 113–123 (2023). https://doi.org/10.1007/s10805-021-09442-0

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We like ethics

Finding the way when there is none

A difficulty for academic writers is managing the dual role of both knowing and not knowing, of both showing the way and not finding it. There is an expectation that such writers should already have the knowledge they are writing about, that they should know the way they show others right from the start. As readers, we are naturally delighted and grateful to share the authors’ knowledge and insight.

But academic writers usually write because something strikes them as puzzling. They write for the same reason that readers read: because they lack the knowledge and clarity required to find the way through the questions. This lack stimulates them to research and write. The way that did not exist, takes shape when they tackle their questions.

This dual role as a writer often worries students who are writing an essay or dissertation for the first time. They can easily perceive themselves as insufficiently knowledgeable to have the right to tackle the work. Since they lack the expertise that they believe is required of academic writers from the outset, does it not follow that they are not yet mature enough to begin the work? Students are easily paralyzed by the knowledge demands they place on themselves. Therefore, they hide their questions instead of tackling them.

It always comes as a surprise, that the way actually takes shape as soon as we ask for it. Who dares to believe that? Research is a dynamic interplay with our questions: with ignorance and lack of clarity. An academic writer is not primarily someone who knows a lot and who therefore can show others the way, but someone who dares and is even stimulated by this duality of both knowing and not knowing, of both finding and not finding the way.

If we have something important to learn from the exploratory writers, it is perhaps that living knowledge cannot be separated as pure knowledge and nothing but knowledge. Knowledge always interacts with its opposite. Therefore, essay writing students already have the most important asset to be able to write in an exploratory way, namely the questions they are wondering about. Do not hide the questions, but let them take center stage. Let the text revolve around what you do not know. Knowledge without contact with ignorance is dead.  It solves no one’s problem, it answers no one’s question, it removes no one’s confusion. So let the questions sprout in the soil of the text, and the way will soon take shape.

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

Thinking about authorship