When a family faces the tragedy of a dying baby, the last thing they need is to be asked what definition of death they’d prefer be used to determine when that baby no longer needs its vital organs. But according to The Washington Post, that’s just what a recent essay in the New England Journal of Medicine suggests be the new protocol for organ harvesting. At the Children’s Hospital in Denver, doctors have harvested the hearts of babies declared dead of heart failure after 75 seconds, only to transplant them and restart them in the bodies of other babies.
The problem is that in this age of high-end medical technology a definition of death–which has been shifting for several years now–is now almost impossible to agree upon, especially when it comes to decisions about when organ donation is appropriate. Ethicist, Robert Truog believes that rather than change the definition of death, we should allow those making decisions for these babies (and other patients) the right to decide at what point it is okay to take the patient’s life by harvesting organs. Call it organ retrieval from a living person, but a person with “devastating neurologic injury.”
Okay, but now who decides what’s “devastating?”
As in all decisions about the end of life and people with disabilities, it is critical to make sure that “devastating” doesn’t fluctuate with the ability of a patient or her family to pay for medical treatments or long-term care. And given the fear and loathing so many typically-abled people in our culture have towards disability, it seems possible that “devastating” might depend on one’s level of education about disability issues or experience with disabled people (in this case, especially with severely mentally disabled people).
I’ll admit it. This would not have seemed like a big deal to me until I became good friends with a blind-deaf mother of twins who has educated me extensively about disability issues. Now, shifting definitions of death and devastation worry me. Too many people assume that having less than a 100% able body is a burden to others or is a “life not worth living.” Once you are tuned to listen for it, you hear these ideas tossed all over our culture. I know brain “death” is something much more serious than Down Syndrome, but I still worry about these ever-shifting lines in the sand and wonder how we can make decisions about ending and saving life when we, as a culture, are so ill-educated about what it means to be human.
And now a paradoxical caveat: If you aren’t already, consider becoming an organ donor. I am one, and would make the choice for my loved ones to be as well, if I came to my own line in the sand. Organ donation has saved the lives of some of my friends and waiting too long for organs has taken the lives of others. These are difficult issues. All we can do is keep muddling through. Have you ever had to make this kind of call? How did you make the decisions?
Image: Stanford School of Medicine