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


Interesting conferences

August 7, 2012

The Ethics Blog recommends three important conferences this autumn:

1.      Genomics for Healthcare and Socio-Economic Progress

This conference is organized by the Wales Gene Park. It discusses the economic potential of genomics in, for example, healthcare, agriculture and bio-energy.

  • When? 13-14 September 2012
  • Where? Radisson Blu Hotel, Cardiff
  • Website? Here

2.      HandsOn: Biobanks

This interactive conference is organized by BBMRI.se. It dicusses biobanking and the value of biobank research.

  • When? 20-21 September 2012
  • Where? Uppsala, Sweden
  • Website? Here

3.      Children’s Participation and Decision-Making in Medical Matters

This conference is organized by the Nordic Committee on Bioethics. It discusses the ethics of children’s participation in medical research.

  • When? 11-12 October 2012
  • Where? Lund, Sweden
  • Website? Here

Visit the websites to find out more about these interesting events!

Pär Segerdahl

We recommend conferences - the ethics blog


Who, or what, becomes human?

July 31, 2012

Our long childhood and dependence on parental care seem to leave no doubt about it: we are not born as humans, we become human.

I want to highlight a particularly tempting metaphor for this process of “becoming human” – the metaphor of:

  • “Order out of chaos.”

According to this metaphor, human infancy is abundantly rich in possibilities; so abundant, in fact, that it is a formless chaos – a “blooming, buzzing confusion,” as William James characterized the infant’s experience of being alive.

To acquire recognizable human form, the child’s inner chaos must be tamed through the disciplining efforts of parents and society at large (the metaphor suggests). The child’s formlessly rich inner life must me narrowed down, hardened, made boring… until, finally, it becomes another obedient member of society.

Society does not acknowledge a real human subject until the norms of “being human” are confidently repeated: as if the child easily would slip back into its more original state of blooming, buzzing confusion, the moment the reiteration of the social norms of humanity terminates.

The “order out of chaos” metaphor makes life and growth look like death and atrophy. To become human means aborting limitless possibilities and gradually turning into that tragic effect of social forces that we know as “the mature adult.”

Perhaps the intriguing topic of the “deconstruction of the subject” is nothing but rigorous faithfulness to the logic of this tempting metaphor? If becoming human is anything like what the metaphor presents it as, then “no one” becomes human, strictly speaking, for before the disciplined human is formed, there is nameless chaos and no recognizable human subject.

But how can the proto-human chaos – I mean, the child – be so responsive to its non-chaotic parents that it reduces its inner chaos and becomes… human? Isn’t that responsiveness already a form of life, a way of being human?

Dare we entertain the hypothesis that the newborn already is active, and that her metamorphoses throughout life require her own creative participation?

I believe we need another understanding of human becoming than that of “order out of chaos.” – Or is human life really a form of colonization of the child?

Pär Segerdahl

We challenge habits of thought : the Ethics Blog


Protecting children: through research or from research?

January 20, 2012

Children pose a dizzyingly difficult problem for research ethics.

One of the most important tasks of research ethics is the protection of human research participants. This significant aim is realized above all through the requirement of proper information and consent procedures.

But children often cannot be protected though these means. They are too young to understand information about research and to give their own autonomous consent.

Children often are excluded from medical research. Since they cannot be protected by the standard ethical precautions, they can be protected only by being excluded from research, so to speak.

The result, however, is that “experimentation” on children in practice moves elsewhere. It moves to the prescription of medical substances to sick children in health care.

We often don’t know the side-effects of medical substances in children; at least not as well as we know them in adults. We often don’t know what dosages are required in children to gain the sought-after effect. We often don’t know when the dosages become toxic.

As a consequence of this, medical prescriptions to children lack the scientific evidence that we have for adult patients. Moreover, when children become sick, they may be “protected” as patients by being denied what could be the most effective medical treatment. Doctors cannot prescribe potent medical substances to children if they don’t know their effects in the body of a child.

The dizzying difficulty can perhaps be simplified thus:

  1. Adults can be ethically protected as research participants. Therefore, scientific knowledge is gained that protects them as patients too.
  2. We cannot protect children as research participants. Therefore, we cannot protect them as patients either (at least not as well as we protect adult patients)

There is growing concern among ethicists about this situation. More knowledge is needed about children’s responses to various medical treatments. Otherwise they cannot be given the best possible treatments when they are patients. That, however, requires more clinical research with children. – But how can we ethically justify such research?

The problem is discussed in the current issue of The American Journal of Bioethics. A target article by David Wendler is followed by seven open peer commentaries.

If you are interested in the problematic, I strongly recommend reading this discussion and considering whether the attempted justifications get to the root of the dizzying problem.  One thing is clear, though:

Protecting children ethically by excluding them from research participation is not the unambiguously good deed it may appear to be.

Pär Segerdahl

We like challenging questions - the ethics blog


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