Important Article: Misinformation From Brain Death Stories Impacts Organ Donation.

This article may just be for journalism nerds like me…but I’m glad Donate Life California passed this along.

I still think it’s worth a share & a read because of the common misconceptions about what brain death really is.  It wasn’t just important to me for journalistic purposes, but also I wish I had known this earlier when I was thinking about my advanced directives at points. It might have made it easier for me to make some decisions earlier.

I also know in all my years of college & high school anatomy & physiology classes this important distinction was also never made.

I think it’s not just good information for medical students or nurses, but many in many other ancillary health service occupations to also know.

I know the first case illustrated in the article, the case of Jahi McMath I won’t comment on because it involves a young child but I understand why that case is being used.

The second case I will comment on because it directly goes against the wishes of the family & the individual. In this case, the husband & wife had discussed such scenarios & she said she did not wish to be kept alive.  Her wishes should have been followed & her husband shouldn’t have had to sue to have them enforced.  This also was the clearest instance to me where the terminology commonly used was misleading.  She was legally & medically dead.  That’s where the debate should have ended.

She was an adult, capable of making her own decision on this.   (Her baby unfortunately was too young to even survive delivery at that point & no facility would have had means to keep it alive had they tried to deliver it regardless.)

But with both of these cases, it’s easy to see how the terminology & definitions are misunderstood.

This quote from the article drives home the quandary for me & others & why we must try to understand this even if it’s unpleasant or confusing (because it matters!):

“This is very applicable to a family’s willingness to agree to organ donation.  Ariane Lewis cites a study from Brazil that found “80% of people would agree to donation if they were told their family member died, but only 63% would agree if they were told their family member was brain dead.”  In other words, by not knowing that ‘brain death’ was irreversible and the same as any other ‘death,’ people may make decisions that would reduce the rates of organ donation.

That is too big of a gamble & spread to remain uneducated about.

(I would also say that contrary to most blog posts & articles where I sometimes skip over the comments there were some very telling stories and background information that were given that I was glad I took the time to read & think about.)

One could say, it’s easy for me to say this, since I’m waiting for my organs, but even before my transplant entered the equation I was faced with questioning my own mortality and brushes with death.  I had times where my quality of life was severely impaired. That to me, is more of an important consideration as well.

If I remain “living” in the textbook sense of the word, but have no quality in that “life” then to me, that’s not living.  I believe that it’s not only unfair to me but also unfair to those who love me to have me kept alive by machines with no signs of brain activity or even in a persistent vegetative state where I am unlikely to recover.

I’d rather live on in someone else, if anything I could donate would be of use or could be usable.

I believed that even before I needed a transplant.  I see how others see differently but isn’t that why we have these discussions & why we have directives?  So it’s clear what WE wish?

But then it’s clear we need also to know what brain death truly is so we can more clearly lay out our wishes for others.




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