This is a rather long article in the New Yorker but well worth the read. Written by Gary Greenberg who follows the story of a 14 year old boy and ends up at the Third International symposium on Coma and Death. He exposes it very well.
Virtually every expert I spoke with about brain death was tripped up by its semantic trickiness. “Even I get this wrong,” said one physician and bioethicist who has written extensively on the subject, after making a similar slip. Stuart Youngner, the director of the Center for Biomedical Ethics at Case Western Reserve University, thinks that the need for linguistic vigilance indicates a problem with the concept itself. “The organ-procurement people and transplant activists say you’ve got to stop saying things like that because that promulgates the idea that the patients are not really dead. The language is a symptom not of stupidity but of how people experience these ‘dead’ people—as not exactly dead.”
Robert Truog, a professor of medical ethics and anesthesiology at Harvard Medical School, is even more critical of the protocol. “Non-heart-beating protocols are a dance we do so that people can comply with the dead-donor rule,” he told me. “It seems silly that we hang on to this façade. It’s a bizarre way of practice, to be unwilling to say what you are doing”—that is, identifying a person as an organ donor when he is still alive and then declaring him dead by a process tailored to keep up appearances and which, in the bargain, might not best meet the requirements of transplant. In Truog’s view, a better approach would be to remove these patients’ organs while they are still on life support, as is done with brain-dead donors. “If they have detectable brain activity, then they should be given anesthetic,” he said, but there is no reason to continue to conceal what is happening by waiting for their hearts to stop beating.
A lot has changed since this article was written. It is now required by Federal law that anyone in a coma, and a potential donor must be notified to the Organ Procurement agency.
- UAGA (2006) reaffirms that if a donor has a document of gift, there is no reason to seek consent from the donor’s family as they have no right to give it legally.
- If an individual has not made a document of gift during life, the Revised UAGA (2006) presumes the intent to donate organs and, therefore, has expanded the list of persons (in section 9a) who can consent to organ donation on behalf of that individual.
- The Revised UAGA (2006) considers that every individual has the right to donate his (her) organs at or near death.
- Finally, if an individual prefers not to donate, this must be documented in a signed, explicit refusal.
- In effect, a patient on life support systems at the end-of-life (and without signed refusal) is defaulted to the presumption of intent to donate organs, and therefore life support systems cannot be withdrawn until the OPO’s evaluation for organ donation is complete.
- The Organ Procurement Organization can then determine that the patient is a prospective donor. How’s that sit with you?
- Patients with documents of gift are considered donors irrespective of advance health care directives and they are required to comply with organ procurement protocols.
- In the default pathway, (i.e. the absence of refusal and contrary intent declaration) life support systems are required, irrespective of advance health care directives, UNTIL the evaluation of medical suitability of organs for transplantation has been completed. Regardless of whether it is morally right to construe refusal of life support in an advance directive as not applicable for organ donation, the final authority of the OPO to determine donor’s medical suitability raises additional normative ethical issues.
This is the law, a federal law, read it, understand it and let me know what you think. Very few people think about these laws until they are faced with a loved one in a coma or severely injured in an accident.
Read it because it effects you even if you have end of life directives.