Wednesday, October 24, 2012

On being undead: Why I’m bailing from giving the gift of life

Published in the Portland Phoenix

I've been an organ donor since I first got a driver's license, more than 20 years ago. But Friday morning, after getting off the phone with the New England Organ Bank, I took a black marker and crossed out that line on my license. Here's my public declaration that I'm not interested in being an organ donor anymore. When my license needs renewal next year, I'll make sure the designation isn't there.
I haven't suddenly become cold-hearted or unwilling to be of use to others after my death. It's just that, as a direct result of reading Dick Teresi's The Undead (published by Pantheon earlier this year) I no longer have confidence in the medical establishment to accurately determine that I actually am dead. And after talking to spokespeople Laura Dempsey and Sean Fitzpatrick at the NEOB, I no longer have confidence that organ donors have professionals looking out for their interests, either.
What I found, and what Teresi, a science journalist with decades of experience (including being former top editor at Science Digest and Omni), documents comprehensively in his book, is a culture of defensiveness that attacks skepticism with assurances that lack any factual support.
When I mentioned that I had read Teresi's book, Dempsey's first reaction was to blurt out, "Oh no." (She later specified that she'd thought I was calling to do a pleasant feature about someone who was either about to receive an organ transplant or had just donated their organs after death.)
The bottom line is that she and Fitzpatrick didn't like the questions Teresi was asking — which is exactly Teresi's point. Fitzpatrick even called Teresi's tone "snarky and nasty," apparently without irony, as he labeled the work itself "sensationalistic and unserious" and said it "does a disrespect to the science of the topic."
My own reaction was that Teresi's were great questions — like "How do we know who is dead and who is alive?" and "If someone's heart can be restarted in someone else's body, how come it can't be restarted in its original body?" He assumed that there are good and solid medical answers to these questions, and set out to find them.
Fitzpatrick, however, viewed them as allegations that physicians are "willy-nilly killing individuals across the country," a charge he vigorously attacked. "Nobody wants the person dead," he told me.
I'll grant that. But Teresi searched for many years without locating anyone who could tell him — or demonstrate scientifically — how we can tell, with no exceptions, the difference between being living to being dead. That's what his book is about. It turns out that many people who are declared dead may not in fact be dead; some of them may even have the capacity to recover to more or less normal lives.
He says the medical profession makes little or no use of that information, and posits that the reason for this lack of interest is because of pressure from the organ-donation industry, which is seeking bodies that are legally dead but perhaps still have some vitality left somewhere, to provide new parts for others' worn-out, but still-hanging-on, frames.
In my view, this link is the most tenuous of his book. But clearly there must be a reason that doctors don't use all their high-tech diagnostic equipment to determine, for example, whether someone declared "brain dead" actually has no blood circulation in their brain. (This is required in Sweden, but not in the US.)
Teresi's book has seriously unsettled me, by documenting two conceptual disconnections between the medical field and the public at large, which individually and together compound (and confound) decisions about death and organ donation.
The first disconnection has to do with what death actually is. Most of us have a sort of visceral understanding of death as when your breathing and heartbeat stop. But at least some of the time, that's not the measure doctors use.
Rather, they use the concept of "brain death," which medical professionals and laypeople alike take to mean that there is no remaining brain function, neither at the low-level brain stem, nor in the highest levels of the cerebral cortex — the home of memory, personality, sense of humor, self-awareness, and all the other stuff that we might call the person inside the body.
Doctors encourage us to think this — and they think so themselves. But, Teresi argues, that's only because of the second conceptual disconnection, which is that while modern medicine has made truly startling advances in being able to keep people alive, and modern science has deepened our ability to detect life signs, almost none of this wondrous knowledge is applied in the hour of our death.
As Teresi points out, the protocol for determining brain death — which has remained the same across the US since the 1970s — does not test the cortex at all, but just the brain stem. In fact, among the most common — and decisive, for doctors — tests of whether a person is dead is to flush ice-cold water into a person's ear canal and see if their eyes twitch (or not). He rightly observes that this seems a bizarrely Stone Age method in a world where machinery lets us view oxygenation and neural activity deep inside the brain.
Dr. Galen Henderson, the director of Brigham and Women's Hospital Neurocritical Care and Neuroscience Intensive Care Unit, told me that's because the technology has already been used on the patient, to determine what's wrong in the first place. Henderson, who is also an assistant professor at Harvard Medical School, says procedures like CT scans of the brain and MRI exams are "prerequisites" to the point at which a doctor might test for actual brain death with the decades-old methods, which he describes as a more thorough version of a series of tests used to determine whether — and how deeply — a person is in a coma, vegetative state, or other condition.
My assumption was that Teresi's revelations, which so shook me, would have made some sort of difference in the months after the book's March 2012 publication (which was accompanied by coverage in major news outlets worldwide).
Perhaps doctors involved in determining death — and those involved with organ transplantation — would have stepped up to offer the answers Teresi was unable to find. Maybe the explanations were there all the time, but Teresi didn't ask the right people, or look in the right journals.
I hoped that Dempsey and Fitzpatrick would be able to explain what had happened in the book's aftermath. This was particularly the case when Dempsey told me that Teresi did his interviews and research "years and years ago, before the book was published." Fitzpatrick also accused Teresi of, among other things, using "potentially outdated information."
Some of Teresi's references do go back as far as 1976 — with historical sources well before that — but his endnotes reflect that the bulk of his research was in the mid-2000s, with the latest interviews coming in 2011.
And the protocols for determining brain death that the book describes are listed as current by, among other authorities, the American Academy of Neurology and the New England Journal of Medicine. The NEJM article Henderson pointed me to specifies that "interpretation of the findings on neuroimaging" is a precursor to a declaration of brain death, and says a CT brain scan is "essential for determining the cause of brain death." But Teresi provides examples where brain scans were not used until it was (nearly) too late.
I asked Dempsey if anything changed since Teresi's contact with NEOB in late 2010. And that's where I began to see the problem Teresi saw: "I don't know that much has changed since 2010," she replied.
It was then that Dempsey told me she was "uncomfortable" with even mentioning Teresi: "I honestly don't want to be part of this piece if you're going to talk about the book."
Shifting into PR-script mode, Dempsey began the organ-donation sales pitch that Teresi criticizes. Dempsey told me that 118,000 people in the US are currently waiting for an organ transplant, and that 18 people die daily in this country because "there's not enough organs to be transplanted." Rhetorically, she asked, "If you're to pass away, then why wouldn't you want to help someone else?"
Of course these are sympathy-inducing facts, and it's a fair question. It's also tempting to accept at face value Fitzpatrick's assurance that "dead people don't feel pain." All Teresi is doing — and all I was following up on — was asking questions about the fact that the focus of the organ-donation community seems to be not on the donor, but on the recipient, and seeking protections for the organs' original owner.
In the vein of assurances on the donor side, Dempsey offered the same explanations that Teresi had found lacking. "Death is irreversible," she said. An organ donor is "brain dead" before the organs are removed.
The determination of brain death is by "a very complete neurological examination," Dempsey said. "No one has ever recovered after the series of tests has been conducted" with a determination of brain death.
I pointed out to her that Teresi dissects each of these claims and offers convincing evidence that they're false. In a significant number of determinations of brain death, the tests were conducted improperly; in several well-documented cases, patients have in fact met the clinical definition of brain death and yet returned to functioning life, even as the surgery to remove their organs for donation was moments from beginning.
Noting that Teresi's research had disturbed Dempsey, I asked if his information had prompted any sort of ongoing discussion in the organ-donation community about the issues he raised. "Not really" was her very quick answer.
Not even the revelation that apparent pain responses are common in patients whose organs are being removed for transplantation appears to have shaken the establishment. (Fitzpatrick says these are similar to the flinch your body makes to pull your hand away from a hot stove before your brain registers the "Ouch!" Henderson says that's a bad comparison; there are different types of reflexes, some of which do involve brain activity.)
Also failing to shake the establishment is the fact that some death experts want very particular criteria to be met before they themselves are declared dead — nor that if they are to have organs removed after death, they would require their next of kin to ensure anesthetic was administered to their corpse.
As Teresi writes, despite all this, organ-donor organizations, including NEOB, are unwilling to talk about anesthesia. They say not that the patients have been proven by science to be unable to feel pain, but simply assert — with no supporting scientific evidence — that if a patient is declared dead, they are assumed incapable of sensing it.
If the people who run the show aren't interested in legitimate questions being asked about their processes, and don't have any interest in finding answers when those questions are asked by others, my faith in the system leaves entirely.
I am not involved in some effort to deny death, though Teresi posits that medical professionals and the public alike misunderstand death (and misrepresent it) because we wish to avoid thinking that one day we too will die.
I know — and mostly accept — that I will die one day. (I've actually thought it was about to happen one dark night when my car left an icy road, headed into the woods. I escaped with minor injuries.)
I accept that at some point my heart will stop, my lungs will no longer exchange oxygen and carbon dioxide between the air and my blood, the cells in my body will cease their metabolic processes, and my neurons will stop sending and receiving minute electrical currents.
What I struggle to accept is that with all we know about science, and all of the equipment, technology, expertise, and experience, the only way I — or anyone else — can be truly certain of my own death is that my body will begin to decay, as my immune system will no longer hold off the bacteria and fungi that constantly assault it from within and without.
And at that point, the first moment at which everyone involved — medical experts, legal experts, and family members — can agree that death has occurred, it will be too late for me to be an organ donor. (I may still be able to be a tissue donor, as some bodily tissues, such as bone, can be harvested for some time after circulation, respiration, and metabolism stop.)
Which is all to say that there is an answer to the question, How do doctors know you're dead? But you're not going to like it, because the honest — and fucking terrifying — truth is that they often don't.
And if doctors can't tell for sure if I'm dead, I'm certainly not going to let them cut my organs out of my body while I might still be alive. Because that would kill me. For real.
• Teresi's book explains the history of how death has been determined over millennia, and focuses on the major sea change, in 1968, when "brain death" was formally defined by a group of people who published their work in the Journal of the American Medical Association.
He observes that the paper was deeply flawed: The committee itself was primarily neurologists and other brain scientists, and did not include cardiologists or others who might have helped clarify the traditional heartbeat/breathing definition of death. The work included no references to scientific studies, and no direct research by its authors. The main reasons given for creating a definition of brain death had nothing to do with the patient in question, either. Instead, the report expressed concern about the burden on the patient's family, and about providing opportunities for increasing organ donation.
It set up several criteria for death, but as Teresi chronicles, those details — inadequate on their own — were shifted, subverted, and ignored systematically. And none of the criteria involve any of the technology of modern medicine, using rudimentary methods to test brain-stem function without using advanced equipment to examine higher-level activity. (Though that technology may have been used to form the decision to test for brain death.)
Ultimately the definition of death came to mean, Teresi writes, "The patient was not necessarily dead, but he was not going to recover." And even then, the tests laid out in theJAMA article were done improperly as much as two-thirds of the time, meaning the conclusion could be entirely wrong.
Most stunningly, Teresi relates the experience of a woman who was found to have a massive, life-threatening aneurysm at the base of her brain. In the surgery to repair it, her body was chilled to 60 degrees Fahrenheit, her heart was stopped, and her brain drained of all its blood. By medical definitions, she simply could not be alive.
Nevertheless, she not only recovered to full health, but was able to accurately recall, by way of a near-death/out-of-body experience during the surgery, very specific details of the procedure and of the conversation between the medical professionals conducting the operation.
Teresi observes that this raises questions about where life resides, if not in the beating heart or the blood-infused brain. What part of this woman's life was present during that surgery, and where is it located? He notes that we should probably find it and test it, too, before announcing that someone is actually dead.