Dissertation on palliative care of children with cancer

September 21, 2015

Pär SegerdahlApproximately every fifth child who gets cancer in Sweden dies from their disease. In her dissertation work at CRB, Li Jalmsell studied the care of these children at the end of their life from both the child’s and the parents’ and siblings’ perspectives.

One of her findings is that one doesn’t generally recognize that the child’s cancer is beyond cure until very close to death, giving little time to plan palliative care based on personal preferences.

Jalmsell also did surveys with parents and siblings who lost a child/sibling, and interviewed children with cancer. The children themselves emphasize in the interviews that they want honest information, even when it is bad. But they also want the conversations to be hopeful and contain a plan ahead; and they want to be informed simultaneously with the parents (not after the parents).

The psychological suffering of parents and siblings who lost a child/sibling seems to be influenced by different factors. Parents’ suffering after the child’s death is much dependent on how they experienced the child’s suffering near the end of life. The parents’ suffering also tended to increase if the child underwent bone marrow surgery before death, perhaps because of the hope of a cure that such an intense treatment awakens.

Siblings generally felt ill-informed and unprepared for the child’s death. Siblings who didn’t get opportunity to talk about what they could expect tended to feel anxiety long after the child’s death.

Jalmsell also stresses the importance of parents talking about death with their child. Other studies have shown that parents who don’t talk often regret this afterwards; while parents who talk with the child about death don’t regret it. In Jalmsell’s own study the parents say that the initiative to talk about death often came from the child, often through stories. The child understands its situation.

If you want to read Li Jalmsell’s dissertation, you can find it here:

It emphasizes the importance of open communication with the whole family.

The public examination is on Friday, September 25, at 09:00, at the Uppsala Biomedical Centre (BMC), room A1:111a. The examination will be conducted in English. Welcome to listen and ask questions!

Pär Segerdahl


Ethics research keeps ethical practices alive (new dissertation)

August 25, 2015

Pär SegerdahlI have in two posts complained about a tendency of ethical practices to begin to idle, as if they were ends in themselves.

A risk with the tendency is that bioethics is discredited and attacked as no more than an unhappy hindrance to novel research.

Like when Steven Pinker recently wrote that the primary moral goal for bioethics today should be:

But there is a way to go: self-scrutinizing ethics research.

Bioethics is often misunderstood as merely a fixed and finished framework of ethical rules, principles and review systems: as a cumbersome bureaucracy. I guess that is how Pinker understands it.

But first, the “framework” is the result of novel ethical thinking at a time when we had reason to rethink the position of science. Doing research is important, but it does not justify exploiting research participants. There are other values ​​than Science, which scientists should take seriously.

Secondly, this ethical thinking will never be finished. There are always new problems to subject to self-scrutinizing ethics research.

Not infrequently these problems are occasioned by the bioethical framework. Pregnant women and children are routinely excluded from research, on ethical grounds. But does not the protection of these groups as research participants mean that they are exposed to risks as patients? If new drugs are tested only on adult males, we don’t know what doses a pregnant woman or an infant should receive.

We need self-critical ethics research, to keep ethics alive and to avoid idling.

Therefore, I formulate a different imperative than the one Steven Pinker suggests. Bioethics main goal should be: Think anew, reflect critically, do ethics research!

We follow that imperative at CRB. An example is Tove Godskesen’s thesis,

which will be defended on Friday, August 28, at 09:15, in room A1:107a at BMC (Biomedical Centre, Husargatan 3, Uppsala, Sweden).

This thesis is not about standing in the way of cancer research, but about doing empirical-ethical research to examine how well the ethical practices work when cancer patients are recruited as participants in such forms of research.

Do the patients understand the information they receive about the research? Do they understand that the possibility that they will be cured through research participation is extremely low? Do they understand that cancer research involves certain risks? Do they understand what a randomized study is?

And why do they volunteer as research participants? Because they hope for a new miracle drug? Because they want to help future patients? As thanks for the help they received? Because they feel a duty towards relatives, or because of (perceived) expectations from the doctor?

All these questions are empirically studied in the thesis.

Godskesen’s dissertation also contains reflections on the concept of hope. Her empirical studies show that it is precisely the patients with the least chance to be cured – those who don’t have much time left, and who usually are asked to participate in Phase 1 clinical studies – who primarily are motivated by the hope of a cure, at the last moment.

How should we view this fact? Does it mean that these participants misunderstand the study they have chosen to participate in, and thus participate on false premises? Or is it a hope which gives meaning at the end of life, a hope which might be nourished even if you understand the study design?

These are questions we cannot “step out of the way” of. Tove Godskesen does not step out of their way. Come and listen on Friday (but observe that the examination will be conducted in Swedish)!

Pär Segerdahl

In dialogue with patients

Idling normativity

August 17, 2015

Pär SegerdahlI recently wrote about the tendency of ethical practices to lose their vital functions and degenerate into empty rituals. Why is there such a tendency?

The tendency is not unique to ethics: it is everywhere.

Suddenly, patients and students are to be called “customers” and be treated “as” customers. This can be perceived as an imposed language, as empty rituals that demean all concerned.

Since the edict to treat a variety of relationships “as” customer relationships can be experienced as demeaning, expanding customer normativity has become a problem even where it has its rightful place: in our stores, where we really are customers.

A retail chain – I will not say which – is now instructing their employees to call their customers “guests” and to treat them “as” guests!

The retail chain “solves” the problem of expanding customer normativity by decreeing guest normativity at precisely the place where customer normativity should work authentically.

I don’t know why we so easily go astray in our own forms of normativity, but I have a name for the phenomenon: idling normativity.

Pär Segerdahl

Minding our language - the Ethics Blog

Is it ethical that uninformed members of the public decide just how bad your disability is?

March 31, 2015

Terry FlynnLast time I raised the possibility of changing child health policy because teenagers are more likely than adults to view mental health impairments as being the worst type of disability. However, today I consider adults only in order to address a more fundamental issue.

Imagine you had an uncommon, but not rare, incurable disease that caused you to suffer from both “moderate” pain and “moderate” depression and neither had responded to existing treatments. If policy makers decided there were only enough funds to try to help one of these symptoms, who decides which should get priority?

In most of Europe, perhaps surprisingly, it would not be you the patient, nor even the wider patient group suffering from this condition. It is the general population. Why? The most often quoted reason will be familiar to those who know the history of the USA: “no taxation without representation”. Tax-payers supposedly fund most health care and their views should decide where this money is most needed. If they consider pain to be worse than depression, then health services should prioritise treatment for pain.

Thus, many European countries have conducted nationally representative surveys to quantify their general public’s views on various health states. Unfortunately Swedish population values were only published last year, almost two decades after the first European country published theirs. Although late, these Swedish population values raise a disturbing issue.

Suppose the general population is wrong?

Why might this be? Many people surveyed are, and always have been, basically healthy. How do they know whether depression is better or worse than pain? In fact, these people tend to say pain would be worse, whilst patients who have experienced both say the opposite.

The Swedish general population study was large and relatively well equipped to investigate how people in ill health value disability. And, indeed, they do value it differently than the average healthy Swedish person.

So is it ethical to disenfranchise patients in order that all citizens, informed or not, have a say?

Why not use the views of patients instead?

Well actually the stated policy in Sweden is that the health values ideally should come from the individuals affected by the health intervention (patients). So Sweden now has the information required to follow its own health policy aims. Perhaps it’s time politicians were asked if it is ethical to prioritise pain over mental health, just because various general populations thought this is so.

As a final thought, I return to the issue of “what funds healthcare”? You may be surprised to learn that the “general taxation” answer is wrong here too. But that strays beyond health care and ethics and into the dark heart of economics, which I will therefore discuss elsewhere next week!

Terry Flynn

We like challenging questions - the ethics blog

The teacher as an example

November 12, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogTeachers want to affect their students. The intent, after all, is for students to acquire certain knowledge and skills. To achieve this, the teacher exhibits exemplars of what the students should know. The teacher talks in exemplary ways about the industrial revolution, about bioethical principles, or shows exemplars of what it means to “add 2” or what a “chemical reaction” is.

The students are then given exercises where they reproduce the exemplars in their own speech, writing and practice. Finally, they are examined. How well have they been affected by the educationally exhibited exemplars and by the exercises?

This description of the learning situation is greatly reduced. Not least because of its focus on the teaching of knowledge and skills. The teacher’s role is reduced to that of holding up exemplars of what the students should know (or be able to do).

But the teaching room contains one additional “exemplar” that is quite important: the teacher.

How does the teacher function as an exemplar? By being there as “a person who …” The teacher functions as a living example of a person who is engaged in history, in bioethics, in mathematics or in chemistry.

The teacher is an example of what one can be (historian, bioethicist …). Not just of what one should know.

The teacher’s exemplary role as “a person who…” can be problematic. Suppose that the physics teacher is a man who almost exclusively addresses the male students. He thereby shows (through his “exemplary” presence) that a physicist is (preferably) male.

Nevertheless, I submit that the teacher’s exemplary presence as “a person who …” is essential. Without it, the students become reduced. Education that puts too much emphasis on knowledge and skills may even make it exemplary that this is what an “educated person” is: A one-dimensional functionary equipped with certain knowledge and skills.

Who desires to be that? Is it even possible? Or is it to overlook what we inevitably are: living persons who…?

Pär Segerdahl

We care about education

Nurses’ experiences of do not resuscitate orders

June 18, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogWhen a critically ill patient has such a poor prognosis that resuscitation would be of no use, doctors can write a so-called do not resuscitate order. The decision means that if the heart stops beating, the medical team should not, as otherwise, perform coronary pulmonary rescue.

The decision is made by the physician on the basis of a medical assessment. But the decision affects the patient, the relatives, and the nurses who care for the patient and family.

Mona Pettersson at CRB is writing her thesis on the decision not to resuscitate. In a study recently published in Nursing Ethics, she interviewed 15 nurses about their experiences of do not resuscitate orders at Swedish hematology and oncology departments.

The nurses describe problems that may arise. The nurses have daily close contact with patients and notice when they are no longer responding to treatment. The nurses can then expect a do not resuscitate order, which may not always come. The decision may be taken by the doctor on the spot, when a resuscitation attempt already started. Sometimes decisions are unclear or contradictory: decisions are taken while continuing to give the patient full treatment. And if the patient and family are not informed about the decision, or the nurse is not present when the information is given, it becomes difficult for the nurse to care for the patient and family – for example, to answer questions afterwards.

Mona Pettersson concludes that nurses need clear, well-documented orders. Patients and families need to be informed and involved in the decisions, and nurses should be present when the information is provided. Finally, regular ethical discussions between nurses and doctors are needed, to understand each other and the different perspectives on do not resuscitate orders. Here you find a link to the article:

Co-authors are Mariann Hedström and Anna Höglund.

Before I finish this post, I want to mention a recently made compilation of our research on nursing ethics:

There you will find our publications with abstracts and links to the publications that are available online.

Pär Segerdahl

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

Open biobank landscapes

May 14, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogLast week I wrote about the transition from organizing science as a tree of knowledge that once in a while drops its fruits onto society, to organizing research as part of knowledge landscapes, where the perspective of harvesting, managing and using the fruits is there from the beginning.

That the proud tree is gone might seem sad, but here we are – in the knowledge landscape, and I believe the development is logical. As a comment to the previous post made clear, many fruits fell from the old tree without coming into use.

The notion of knowledge landscapes sheds light on the attempt by BBMRI.se to build infrastructure for biobank research. The initiative can be viewed as an attempt to integrate research in broader knowledge landscapes. Supporting research with an eye to the interests of patients is a new way of managing research, more oriented towards the fruits and their potential value for people than in the era of the tree of knowledge.

The novelty of the infrastructural approach to biobanking isn’t always noticed. In Sweden, for example, the biobank initiative LifeGene was met with suspicion from some quarters. In the debate, some critics portrayed LifeGene as being initiated more or less in the interest of a closed group of researchers. Researchers wanted to collect samples from the population and then climb the tree and study the samples for god knows which purposes.

Those suspicions were based on the old conception of science as a high tree, inaccessible to most of us, in which researchers pursue “their own” interests. The aim with LifeGene, I believe, is rather to integrate research in a knowledge landscape, in which research is governed more by the interests of patients.

We mustn’t underestimate the challenges such a reorganization of research has to deal with, the forces that come into play. I merely want to suggest a new way of surveying and thinking about the transition – as a change from approaching science as a high tree of knowledge to integrating research in open knowledge landscapes.

If you want to read more about research in knowledge landscapes, you find Anna Lydia Svalastog’s article here, and the network where these ideas originated here.

In September 2014, the third conference, HandsOn: Biobanks, is organized, now in Helsinki. Academics, industry, doctors, patient groups, policy makers, public representatives and legislators are invited to share knowledge and experiences. As in previous conferences in the series, there is an interactive part, The Route, in which biobanking processes can be followed from start to finish, with ample opportunities for discussion.

View the conference as part of maintaining open biobank landscapes, with research as one of several integrated components.

Registration is open.

Pär Segerdahl

We like broad perspectives : www.ethicsblog.crb.uu.se

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