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

Month: September 2014

Does bioethics understand the family?

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogTraditional bioethics does not pay sufficient attention to the role that family relationships can play, for example, in decisions about organ donation. New opportunities in healthcare create moral problems that bioethics therefore cannot identify and manage. To identify and understand these moral problems requires a specific ethics of families, writes among others Ulrik Kihlbom in an article in the Journal of Medical Ethics.

The authors are members of the “Network on ethics of families.” In the article, they use a striking example of a moral problem that becomes invisible in standard bioethics. I believe the example is authentic.

Annie’s brother Stewart has kidney problems. Annie would like to donate one of her kidneys to her brother, but cannot because she does not have matching blood or tissue type. Thanks to a new healthcare initiative, she can however join a donor pool. If the computer can identify a suitable person in the pool who can receive her kidney and another suitable person who can donate a kidney to her brother, the result is the same: Annie donates, Stewart receives.

But Annie does not perceive it as the same thing. She cannot explain why she suddenly becomes hesitant to donate her kidney, when the healthcare team treats indirect donation to the brother via the pool as completely analogous to direct donation to her brother.

Annie does not reason according to the professional logic that the healthcare team and many bioethicists use. She is willing to donate a kidney to her brother. To donate to a stranger to thereby enable her brother to get a kidney is not the same thing.

Understanding Annie’s problems with the healthcare team’s proposal requires a different form of ethical thinking, a family ethics.

Another aspect of Annie’s willingness to donate a kidney to her brother that is made ​​invisible by traditional bioethics is its unconditional character. Donating an organ to a needing member of the family can strike families as a given responsibility. They can feel they have no choice. This is difficult to understand from a traditional bioethical perspective that emphasizes individuals’ autonomous and rational choices between alternatives.

I would like to add that the professionally well-motivated donor pool possibly even plays on the family ethics that one does not understand. Are not new donors recruited by appealing to the unconditional willingness to donate within the family?

The article moreover contains a discussion about problems of justice, requiring a perspective from family ethics to be seen. Read it!

Pär Segerdahl

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Conversations with seemingly unconscious patients

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogResearch and technology changes us: changes the way we live, speak and think. One area of ​​research that will change us in the future is brain research. Here are some remarkable discoveries about some seemingly unconscious patients; discoveries that we still don’t know how to make intelligible or relate to.

A young woman survived a car accident but got such serious injuries that she was judged to be in a vegetative state, without consciousness. When sentences were spoken to her and her neural responses were measured through fMRI, however, it was discovered that her brain responded equivalently to conscious control subjects’ brains. Was she conscious although she appeared to be in a coma?

To get more clarity the research team asked the woman to perform two different mental tasks. The first task was to imagine that she was playing tennis; the other that she visited her house. Once again the measured brain activation was equivalent to that of the conscious control subjects.

She is not the only case. Similar responses have been measured in other patients who according to international guidelines were unconscious. Some have learned to respond appropriately to yes/no questions, such as, “Is your mother’s name Yolande?” They respond by mentally performing different tasks – let’s say, imagine squeezing their right hand for “yes” and moving all their toes for “no.” Their neural responses are then measured.

There is already technology that connects brain and computer. People learn to use these “neuro-prosthetics” without muscle use. This raises the question if in the future one may be able to communicate with some patients who today would be diagnosed as unconscious.

– Should one then begin to ask these patients about informed consent for different treatments?

Here at the CRB researchers are working with such neuro-ethical issues within a big European research effort: the Human Brain Project. Within this project, Kathinka Evers leads the work on ethical and societal implications of brain research, and Michele Farisco writes his (second) thesis in the project, supervised by Kathinka.

Michele Farisco’s thesis deals with disorders of consciousness. I just read an exciting book chapter that Michele authored with Kathinka and Steven Laureys (one of neuro-scientists in the field):

They present developments in the field and discuss the possibility of informed consent from some seemingly unconscious patients. They point out that informed consent has meaning only if there is a relationship between doctor/researcher and patient, which requires communication. This condition may be met if the technology evolves and people learn to use it.

But it is still unclear, they argue, whether all requirements for informed consent are satisfied. In order to give informed consent, patients must understand what they agree to. This is usually checked by asking patients to describe with their own words what the doctor/researcher communicated. This cannot be done through yes/no-communication via neuroimaging. Furthermore, the patient must understand that the information applies to him or her at a certain time, and it is unclear if these patients, who are detached from the course of everyday life and have suffered serious brain injury, have that understanding. Finally, the patient must be emotionally able to evaluate different alternatives. Also this condition is unclear.

It may seem early to discuss ethical issues related to discoveries that we don’t even know how to make intelligible. I think on the contrary that it can pave the way for emerging intelligibility. A personal reflection explains what I mean.

It is tempting to think that neuroscience must first determine whether the patients above are unconscious or not, by answering “the big question” how consciousness arises and becomes disturbed or inhibited in the brain. Only then can we understand these remarkable discoveries, and only then can practical applications and ethical implications be developed.

My guess is that practical technological applications, and human responses to their use, rather are venues for the intelligibility that is required for further scientific development. A brain does not give consent, but perhaps a seemingly unconscious patient with neuro-prosthesis. How future technology supported communication with such patients takes shape – how it works in practice and changes what we meaningfully can do, say and think – will guide future research. It is on this science-and-technology supported playing field that we might be able to ask and determine what we thought neuroscience had to determine beforehand, and on its own, by answering a “big question.”

After all, isn’t it on this playing field that we now begin to ask if some seemingly unconscious patients are conscious?

Ethics does not always run behind research, developing its “implications.” Perhaps neuro-ethics and neuroscience walk hand in hand. Perhaps neuroscience needs neuro-ethics.

Pär Segerdahl

In dialogue with patients

The voices of telenursing

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogI believe that many who call a telenurse are wondering which voice they will encounter. Will it be considerate or dismissive? Male or female? Young or old? Sympathetic or unsympathetic?

I guess also the telenurse is wondering which voice he or (usually) she will encounter when answering the call. Will it be self-assertive or self-denying? Male or female? Young or old? Eloquent or stumbling?

This uncertainty is revealing. Telephone counseling has sensitive dimensions that influence how the conversation develops and what it leads to. There is no direct connection between how you feel and the advice you get, for it will also depend on how the voices take shape and come together in conversation. We know this instinctively before the conversation started. Therefore we wonder, perhaps with some dread: what will the other voice be like?

This is a challenge for telenursing. The aim is to make health care more effective, accessible and safe, and there is potential to challenge inequities in health care. Meanwhile, gender, age, ethnicity and socioeconomic status will be expressed in voices that respond to each other largely beyond our conscious control.

Therefore, it is an important research task to study telenursing and raise awareness of what is happening in the conversations. One such study from Uppsala University was recently published:

The study is done by Roya Hakimnia, together with Inger K. Holmström, Marianne Carlsson and Anna T. Höglund. They develop a qualitative analysis of 20 calls to Swedish Healthcare Direct, and identify a number of relevant types of calls. One type of call, for example, is when the telenurse speaks more as a gatekeeper than as a nurse. Another is when gender norms are central and have consequences, as when a man calls reluctantly and doesn’t get the advice he might need. Another type of call is distinctly medical and avoids the life situation of the caller, although it might be what is relevant.

Portions of several conversations are included in the article. One can thus read transcripts of specific calls, and analyses of them, side by side. This I found quite excellent. The analyses help one to see and to think further about what is happening in the conversations, while the conversations help one to see the point of the analyses.

The study is in my opinion a fine example of how qualitative research can highlight sensitive processes that we normally do not survey or control. Sometimes we need to look more closely at the individual cases.

Pär Segerdahl

In dialogue with patients