New Research on Comas, and What It Means for Living Trusts

An article in Time Magazine this week tells the story of a man who was presumed brain-dead for nearly a quarter century, but as it turned out, had been alert and listening the whole time.

Rom Houben, a Belgian engineering student before his accident, was suffering from total locked-in syndrome, a condition which paralyzes all intentional body movement. His body could breathe, pump blood, and digest; he could watch, listen, and think just fine, but he did not have the ability to respond. It wasn’t until a neurologist on a quest to find misdiagnoses with an experimental new type of brain scan saw Rom that they discovered his mind was intact.

This might seem like a far-fetched aberration, but recent studies in the British Journal of Medicine and elsewhere show that incorrect diagnoses of a persistent vegetative state (or PVS) occur at an alarming rate – about 40-45 percent of the time. The reasons are several. Brain-scanning technology has not reached a level where it can clearly diagnose conscious from unconscious; the methods for diagnosis by observation all have serious flaws, and doctors can’t agree on which is best or how to make a better one; and reviews after an initial diagnoses are often too cursory to notice signs of improvement after the brain has had time to heal.

This reality creates a serious problem for the typical living will. The lion’s share of clients have them drafted to ensure they have a quick and peaceful passing instead of getting “Terry Schiavo’d,” and living wills often mention a PVS diagnosis by name as one of the triggers for the removal of life support. The result is that a person who could live a fulfilling life with quadriplegia (body paralysis) as so many others do may inadvertently be euthanized. Almost all misdiagnosed patients are completely paralyzed, and many suffer some loss of cognitive ability, so it is understandable that these new revelations may not prompt older clients to change their plans. For everyone else, though, it should be an important consideration in laying out your advanced healthcare directives.

Going forward, estate planning attorneys should keeping abreast of new developments in PVS diagnostics, to know the what/how often/for how long combination that best ensures a PVS diagnosis is accurate, and clients should strongly consider having those standards incorporated into the document itself.