Bill Peace in Hastings Center Bioethics Forum: “Euthanasia in Belgium: The Untold Story”

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Bill Peace, who writes the Bad Cripple blog and is one of our new board members at Not Dead Yet, has a new commentary out in the Bioethics Forum at the Hastings Center website.

Here’s an excerpt from the article:

Belgian twins, Eddie and Marc Verbessem, were euthanized by lethal injection at Brussels University Hospital in Jette in December. The Verbessem brothers, deaf since birth, were cobblers by trade who lived and worked together their entire lives. Several years ago they were diagnosed with a genetic form of glaucoma that would render them blind. The brothers feared dependency and believed being deaf-blind would cause them to experience “unbearable suffering.”

Under Belgian law euthanasia is permitted if a person is able to make his or her intensions clear to others and a physician determines that the person is experiencing “unbearable pain.” The Verbessem case has generated controversy worldwide. Multiple news reports characterized the deaths as a mercy killing. The message was clear: death is a logical and reasonable option if a person will become deaf-blind. By logical extension there are some disabilities that are a fate worse than death. One does not need to be terminally ill to be euthanized.

Careful readers might notice that the use of terminology is a little confusing here.  But that is probably just a reflection of the press coverage of this incident, as well as coverage of euthanasia in Europe in general.  “Unbearable pain” and “unbearable suffering” aren’t really interchangeable terms, but both – or variants – have been used to describe the reason for the double deaths of Eddie and Marc Verbessem.  (Bill points out problems with this issue later on in the article)
The reason people were “shocked” by this story (I wasn’t one of them) is probably due to the widespread misreporting of the criteria for euthanasia eligibility in the Netherlands, Belgium and Luxembourg.  Reuters and the AP regularly misstate euthanasia guidelines in those countries as applying to the “terminally ill” in “unbearable pain.”  Euthanasia eligibility in both countries always involved wider “eligibility” standards than “terminality” and “pain.”  Unfortunately, when I call to ask for corrections – giving links to government sources that define the eligibility criteria – I just get blown off.  Mostly, I think, it’s because I’m the only one who’s complained.  Which means, of course, that bioethicists – guardians of public ethical discourse – don’t see this as misinformation worth correcting.  Without naming specific individuals, there are several American bioethicists who could probably get a correction from news organizations if they called.  But they don’t – and they don’t write media columns or journal article complaining about it.
This is nothing new.  About eight years ago, I wrote a “Perspectives” essay that appeared in the Hastings Center Report, concerned with the news that doctors in the Netherlands were pushing for acceptance of euthanasia of babies with spina bifida.  Here’s an excerpt from that essay:

…the Associated Press story on the Groningen protocol misinformed readers that the protocol applied to “euthanizing terminally ill newborns.” This is a gross distortion: Verhagen and Sauer made no attempt to hide that they were talking about newborns with “serious medical conditions.”It’s both puzzling and disturbing that this misinformation was met with total silence from the bioethics community. You would think that bioethicists, eager to claim expertise and promising to bring clarity to public debates, would have jumped all over the Associated Press report. This silence reinforces the cynical view that the righteous anger bioethicists express at outspoken disability advocates has less to do with providing clarity than protecting turf.

I’m more cynical than I used to be – I think that the reason bioethicists are silent on the rampant misinformation about euthanasia in Europe is that they’re OK with misinformation that makes euthanasia acceptable to more people.

In case  I have to repeat myself, please go and read the rest of Bill Peace’s article at the Bioethics Forum.