The New Yorker features resignation syndrome

March 29, 2017

Pär SegerdahlLast year I wrote a post about resignation syndrome in children in families who are denied asylum in Sweden. I described a hypothesis about the syndrome suggested by Karl Sallin, PhD student at CRB in the field of neuroethics and neurophilosophy.

An intuitive explanation is that the syndrome is a reaction to prolonged stress and depression. A reaction that is triggered when the family is denied asylum. However, if the explanation is correct, the syndrome should exist on a similar scale also in other countries that receive refugee families. It seems it does not.

To understand what happens to these children, we should, Karl Sallin suggested, see it as a psychological reaction that occurs in the meeting between certain cultures and Swedish cultural conditions. For another peculiarity is the fact that the syndrome occurs mainly in families from certain parts of the world. We are dealing with a culture bound psychopathology, Sallin proposed in Frontiers in Behavioral Neuroscience.

The New Yorker recently wrote about this “Swedish” syndrome, in a long article in which Karl Sallin interviewed.

The article contains a touching description of how one of these children falls ill when the family is denied asylum. For several months, he is confined to bed, not contactable, and he must be tube fed. When the family gets permanent residence, they try to convey this to the boy. After two weeks, he begins to open his eyes. After a further seven weeks, the nasal tube taped to his cheek falls out. Finally, he can return to school and begin to talk about the disease.

The article in The New Yorker emphasizes that the syndrome is a culture-bound psychopathology. However, the tendency seems to be to point out Sweden’s crumbling self-image as the relevant cultural context for the disease. We see “apathetic refugee children” as symbols of our own moral failure to treat them and their families humanely. Therefore, we tube feed them without further treatment, while waiting for the family to hopefully get their residence permit. This creates a culture where children become sick when their families are denied asylum.

This can hardly be the whole explanation, since it then becomes difficult to understand why mainly children from certain parts of the world are afflicted. Moreover, mainly children who come together with their families, rather than unaccompanied refugee children. The cultural dynamics seems to be more complex than the desire to find scapegoats for the syndrome can handle.

Pär Segerdahl

This post in Swedish

We want to be just - the Ethics Blog


Legal abortion: the right to move on

April 13, 2016

Pär SegerdahlWith brave new ideas you can astonish the world. In the past months the youth association of the Swedish party, the Liberals, made several proposals that astonished not least the mother party – for example, that incest and necrophilia should be allowed. The state should not control individuals’ love life.

Probably, the young politicians are quite proud of their radicalism. They are more liberal than liberalism itself. But what is their radicalism made of?

In March, another radical proposal was made. This time it was about abortion. Women have the right to choose abortion until the 18th week of pregnancy. But men don’t have a corresponding right to opt out of their parenthood. The proposal is about correcting this unfair distribution of the freedom to decide about parenthood.

How? By giving men the right to disclaim paternity until the 18th week of pregnancy: so-called legal abortion. Through the proposal, men get the same right as women to decide if they want to become parents. Thus, justice is restored.

One can surmise that the mother party dreams of making their own little abortion. But listen to how splendid it can sound when one astonishes the world with brave new ideas:

  • “It’s about men also being able to choose whether they want to become parents or not.”
  • “Men should have the same right to opt out of parenthood.”

Indeed, it sounds magnificent: the liberal youth association wants to correct a fundamental asymmetry between the rights of men and women! They are fighting for a more equal society!

I suggest that the “equality” here is purely verbal. It sits on the surface of an individualist language of rights and freedoms, with the words “man,” “woman” and “equal right.” Scratch the surface and the beautiful symmetry disappears.

One thing that is hidden by the jargon, for example, is that the woman’s decision concerns a fetus. But if she doesn’t abort, the man’s abortion decision will be about a child who will be born, and who will live, “legally aborted.”

Another thing that is hidden is that if the woman chooses abortion, neither party becomes a parent, because no child is born. But if she gives birth to the baby, the man will be the father of the child, whether he disclaims legal paternity or not. Law is not everything in life. When a child is born, there is a parenthood that cannot be disclaimed, for the child can say: “My father aborted me.” Only the woman’s abortion decision can completely abolish parenthood.

A third thing that is hidden is that something rings false in the individualist talk about parenthood as my parenthood and your parenthood; as the woman’s parenthood and the man’s. To crown it all, the fetus as well as the child are absent in this reasoning about male and female parenthood – curious! Are they already aborted? Did the young politicians forget something rather central, in their eagerness to develop truly liberal ideas about parenthood?

In order not to be disturbed by all this, in order not hear how false it rings, one must purify an individualist jargon of rights and freedoms, and then lock oneself in it. This is where the youth association’s radicalism lies: in language. It purifies (parts of) the language of liberalism, but as mere linguistic exercises with the words “man,” “woman” and “equal right.”

The radicalism isn’t political, but linguistic. Therefore, one feels instinctively that the discussion that the youth association wants to start up cannot be political, but merely continued exercise of pure concepts – like when schoolchildren plod through grammatical examples to one day be able to speak a language that still is foreign to them.

Ludwig Wittgenstein described such pure conceptual exercises as language that idles, like an engine can idle without doing its work. In this case, it is the language of liberalism that is idling.

I propose a good dose of Wittgenstein.

Pär Segerdahl

This post in Swedish

Minding our language - the Ethics Blog


Resignation syndrome in refugee children – a new hypothesis

February 22, 2016

Pär SegerdahlThere has been much discussion about the so-called “apathetic children” in families seeking asylum in Sweden. You read that right: in Sweden, not in other countries. By all accounts, these children are genuinely ill. They do not simulate total lack of willpower; like inability to eat, speak and move. They are in a life-threatening condition and show no reactions even to painful stimuli. But why do we have so many cases in Sweden and not in other countries?

Several hundred cases have been reported, which in 2014 led the Swedish National Board of Health and Welfare to introduce a new diagnosis: resignation syndrome. The “Swedish” syndrome appears to be a mystery, almost like a puzzle to crack. There are asylum seeking families all around the world: why does this syndrome occur to such an extent in a single country?

If you want to think more about this puzzling question, I recommended a new article in Frontiers in Behavioral Neuroscience, with Karl Sallin (PhD student at CRB) as first author. The article is long and technical, but for those interested, it is well worth the effort. It documents what is known about the syndrome and suggests a new hypothesis.

A common explanation of the syndrome is that it is a reaction to stress and depression. The explanation sounds intuitively reasonable, considering these children’s experiences. But if it were true, the syndrome should occur also in other countries. The mystery remains.

Another explanation is that the mother attempts to manage her trauma, her depression and her needs, by projecting her problems onto the child. The child, who experiences the mother as its only safety, adapts unconsciously and exhibits the symptoms that the mother treats the child as if it had. This explanation may also seem reasonable, especially considering another peculiarity of the syndrome: it does not affect unaccompanied refugee children, only children who arrive with their families. The problem is again: traumatized refugee families exist all around the world. So why is the syndrome common only in Sweden?

Now to Sallins’ hypothesis in the article. The hypothesis has two parts: one about the disease or diagnosis itself; and one about the cause of the disease, which may also explain the peculiar distribution.

After a review of symptoms and treatment response, Sallin suggests that we are not dealing with a new disease. The introduced diagnosis, “resignation syndrome,” is therefore inappropriate. We are dealing with a known diagnosis: catatonia, which is characterized by the same loss of motor skills. The children moreover seem to retain awareness, even though their immobility makes them seem unconscious. When they recover, they can often recall events that occurred while they were ill. They just cannot activate any motor skills. The catatonia hypothesis can be tested, Sallin suggests, by trying treatments with known responses in catatonic patients, and by performing PET scans of the brain.

The question then is: Why does catatonia arise only in refugee children in Sweden? That question brings us to the second part of the hypothesis, which has some similarities with the theory that the mother affects the child psychologically to exhibit symptoms: really have them, not only simulate them!

Here we might make a comparison with placebo and nocebo effects. If it is believed that a pill will have a certain impact on health – positive or negative – the effect can be produced even if the pill contains only a medically inactive substance. Probably, electromagnetic hypersensitivity is a phenomenon of this kind, having psychological causes: a nocebo effect.

The article enumerates cases where it can be suspected that catatonia-like conditions are caused psychologically: unexpected, unexplained sudden death after cancer diagnosis; death epidemics in situations of war and captivity characterized by hopelessness; acute or prolonged death after the utterance of magic death spells (known from several cultures).

The hypothesis is that life-threatening catatonia in refugee children is caused psychologically, in a certain cultural environment. Alternatively, one could say that catatonia is caused in the meeting between certain cultures and Swedish conditions, since it is more common in children from certain parts of the world. We are dealing with a culture bound psychogenesis.

Sallin compares with an outbreak of “hysteria” during the latter part of the 1800s, in connection with Jean-Martin Charcot’s famous demonstrations of hysterical patients, and where colorful symptom descriptions circulated in the press. Charcot first suggested that hysteria had organic causes. But when he later began to talk about psychological factors behind the symptoms, the number of cases of hysteria dropped.

(Perhaps I should point out that Sallin emphasizes that psychological causes are not to be understood in terms of a mind/body dualism.)

It remains to be examined exactly how meeting Swedish conditions contribute to psychologically caused catatonia in children in certain refugee families. But if I understand Sallin correctly, he thinks that the spread of symptom descriptions through mass media, and the ongoing practice of treating “children with resignation syndrome,” might be essential in this context.

If this is true, it creates an ethical problem mentioned in the article. There is no alternative to offering these children treatment: they cannot survive without tube feeding. But offering treatment also causes new cases.

Yes, these children must, of course, be offered care. But maybe Sallin, just by proposing psychological causes of the symptoms, has already contributed to reducing the number of cases in the future. Assuming that his hypothesis of a culture bound psychogenesis is true, of course.

What a fascinating interplay between belief and truth!

Pär Segerdahl

Sallin, K., Lagercrantz, H., Evers, K., Engström, I., Hjern, A., Petrovic, P., Resignation Syndrome: Catatonia? Culture-Bound? Frontiers in Behavioral Neuroscience 29, January 2016

This post in Swedish

We like challenging questions - the ethics blog


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

 


Genetic compatibility as a new dimension of partnership?

April 9, 2014

JULIA INTHORN is associated researcher and working on genetic risk information and pre-conceptional genetic screeningPreconception genetic carrier tests can inform a person if he/she is carrier of a recessive disease. In case the partner is also a carrier of the same disease, the couple has an increased risk (usually a 1 in 4 risk) to have a child with this disease. Current research in genetics works on developing tests for up to 600 of such recessive inherited diseases. Couples can use this test when planning a pregnancy and check if they are both carriers of the same disease.

In case a couple who are both carriers wants to rule out the risk of having an affected child they have different options: Medical options range from using IVF and preimplantation genetic tests to prenatal test (and the option of abortion in case the child is affected) to using donor gametes. Non-medical options are refraining from having children, adopting children or changing partner.

Preconception genetic carrier screening adds a new dimension to the question of family planning and partnership. In the rhetoric about partnerships – in online tests, horoscopes and questionnaires of online dating services – compatibility of partners is already a great issue connected to questions like matching in taste and interests but also similarity of background.

Genetic (in)compatibility is a new hitherto undiscussed aspect of partnership and marriage. While the idea of testing the genetic compatibility of partners might seem very unromantic to some the question of raising a seriously ill child together poses some important questions: questions of how partners imagine to be parents together, how they envision responsibility for a child and what kind of medical and non medical measures they think are acceptable.

Thinking about integrating genetic information into our concepts of family will challenge our ideas of responsible parenthood. We need not only to make decisions carefully but also to understand how decisions influence possible future plans: Building on a partnership irrespective of genetics leads to other questions and options in family planning than checking genetic compatibility during dating.

Discussions about integrating new genetic information into our concepts of family planning should address what options are most important and how to open up rooms of choices.

Julia Inthorn

Approaching future issues - the Ethics Blog


Better not to know?

April 1, 2014

Inmirko-ethicsblog medical ethics a distinction is commonly made between negative and positive autonomy. One’s negative autonomy is exercised in refusing medical care or refusing some specific treatment. Positive autonomy is the right to choose a specific treatment (within what is available and allowed). Expressing a preference for not being informed about some medical condition seems to exercise negative autonomy.

Several criteria define the autonomy of a person in medical ethics, including knowledge. The knowledge a person has is not simply derived from the quantity of information made available, but by the real information that the subject is able to understand and use in the assessment. It can be said, then, that under this perspective, the more knowledge one has the more autonomous one is.

To illustrate the role of knowledge in autonomy, consider two couples with a family history of genetic diseases. In both cases the woman is pregnant. Couple 1 doesn’t want to make any genetic test, because “whatever the result we would never consider abortion an option.” Couple 1 has a set of values that is not compatible with abortion. Couple 2 has the same values and does not consider abortion as a feasible option. Nonetheless, couple 2 chooses genetic testing and the result of the test is a very high likelihood of an impaired offspring. Though knowing this, couple 2 decides to have the baby too.

The decision (to have the baby) of couple 1 and couple 2 is the same, but is reached through different paths. Couple 1 didn’t wish to know, it exercised a kind of negative autonomy. Couple 2 exerted a kind of positive autonomy deciding to gain knowledge about the condition (actual or likely) of its offspring. They displayed different attitudes toward knowledge, but both made a kind of autonomous choice. Couple 1 didn’t want to test its offspring, and one may be tempted to say that it didn’t put its values to test in the light of knowledge possible to attain, whereas couple 2 in testing its offspring also gauged the strength of the values on the basis of which they made their decision.

I would say that the couples’ first choices to know/not to know are equally autonomous. Henceforth, however, the couples’ paths diverge and couple 2’s final decision (to have the baby) is a more autonomous one, because it uses more relevant knowledge. Couple 1’s preference for negative autonomy (not to know) leads, on this account, to a less autonomous final decision (to have the baby).

Mirko Ancillotti

We like ethics : www.ethicsblog.crb.uu.se


Conference on global aspects of reproductive technology and surrogacy

May 13, 2013

Reproductive technology and surrogacy often is a cross-border practice that raises several ethical issues concerning the rights not only of adult participants but also of the children involved.

Do the children have a right to know about their genetic parents and do they have a right to be recognized by the countries of their contractual parents? What are the rights of surrogate mothers?

These and related questions will be discussed at an upcoming conference,

organized by The Nordic Committee on Bioethics.

Participation is free of charge. Young researchers (mainly PhD students) are invited to submit an abstract no later than May 20.

More information about abstracts, programme and registration can be found on the website of the Nordic Committee on Bioethics.

If you want to participate, register no later than August 15.

Pär Segerdahl

We recommend conferences - the ethics blog


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