As technology continues to advance, it will one day be possible to grow organs and even faces from a patient's own stem cells. Until then there are transplants from donors.
Such donors are often anonymous but in the case of Belgium's first facial transplant, that isn't really possible. A recent "interpretive phenomenological analysis" of the experience of family members of the deceased tissue donor may provide insight for what to expect in the future and how to prepare.
A phenomenological analysis of one family is really just an anecdote but may inform what families can expect in the future, and what researchers should avoid.
For example, family members accepted that facial transplantation was really no different than more common types of organ transplants but they quickly understood that the perceptibility of the face and its importance as an aspect of personal identity set it apart.
The family felt some pressure in the decision process, reflecting the perceived medical and scientific importance of the facial transplant.
They consented due to their values of social engagement and altruism. They felt that the transplant would not only enable the donor to help others after death, but would also allow some part of their loved to live on.
However, they felt a special attachment they may not have felt about something like a heart.
They expressed a wish to see the results of the transplant – which they knew they could not do, due to legal/confidentiality issues. At the same time, they were also apprehensive about the prospect of recognizing their loved one's face on the recipient, even though they knew that wasn't possible.
When it came to the donor, the family felt it was very important to be able to view the body of the deceased, which required restoration in the form of a manually fabricated silicon mask – which meant that the body couldn't be touched and "did not feel completely genuine."
Because this is new, family members also had to deal with some "bothersome" questions from some social contacts.
Family members felt well-informed by the medical team and appreciated the "open, warm, humane, and respectful" relationship with them, until the medical team was in a news report about the facial transplant – which they did not know about in advance, and which revealed some new information about the surgical procedure. Family members felt they could have been "better informed, prepared, and guided" regarding the media attention and exposure.
Facial Transplant Donors Can't Really Be Anonymous - And What That Means For Families
By News Staff | February 6th 2023 04:39 PM | Print | E-mail
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