editor, Mariette DiChristina, writes in her introduction to September's special issue that the concept, "The End," had been picked up and put down in their offices for years because of "the difficulty and possible discomfort about some of the topics we wanted to cover."
I can't speak for SA's regular readers, but DiChristina needn't have worried. The issue is a treasure trove of intriguing questions and answers, ones too important and timely to be ignored: Does acetaminophen (Tylenol) reduce feelings of rejection and paranoia? (I say let's do a test study on the Tea Party.) What are the chances the world will end by asteroid impact? (1 mill in next 100 years) Runaway global warming? (2 in next 200 years) Killer pandemic? (2 in the next 30 years) What are the four stages of body decomposition? (Fresh, Bloat, Active Decay, and Dry); What cultures are disappearing?; What scientific discoveries should rightly come to an end? (Daylight savings time, the space shuttle, landfills, teflon, among others); And how much time is left for glaciers? Gold mining? (20 years) Time? (Yes, how much time does time have?)
But the articles that most speak to my own writing interests -- patients' rights, primarily -- are great too. Thomas Kirkwood addresses why we can't live forever (pp 42). SA's various advisory board members look at anticipated reproductive trends in the next decades ("What Comes Next" pp 92). And Robin Marantz Henig contributes a brief but spot-on look at organ donation ("When Does Life Belong to the Living?" pp 50) and the contested definition of death. She writes:
To address this issue [establishment, with the advent of organ transplantation, of "dead-donor rule" in 1960s to prevent organs from being taken from the living; in essence, the definition of death], a blue-ribbon Harvard Medical School panel met in 1968 and arrived at the concept of "irreversible coma," more commonly known as brain death. By this term, they meant that the cerbral cortex -- the seat of consciousness, language, empathy, fear and everything else that makes us human -- is irreversibly destroyed. Destroyed, too, is the brain stem, which orchestrates such basic physiological functions as breathing, heartbeat and homeostasis. Modern medical machinery may keep the body oxygenated, but the person inside is gone.
The definition of death has been reviewed periodically since then by groups of bioethicists, and although the terminology sometimes changes, the substance remains basically the same. The concept of breain death (often knows by the more modern and clinical term "the neurological standard of death") has since become encoded into law in nearly every state in the U.S. Ethicists and the law agree: a person whose cortex and breain stem are destroyed has ceased to be alive, even if the body is warm and pink. That body is no longer considered a person. Instead it is a heart-bearing cadaver.
All this means quite a bit to the hundreds of thousands who wait for years on organ recipient lists. And it means a lot too to "pro-life" activist groups who would like to remove decision-making from individuals and family members burdened with terrible choices in dire situations.
Think Terri Schiavo (and the Terri Schindler Schiavo Foundation) or Wesley J. Smith (a staunch, vocal advocate for the Schiavo family and removing such decisions from doctors or patients who wish to determine their own end of life care) or the United States Conference of Catholic Bishops (which as recently as November changed the guidelines in all 624 of the U.S. hospitals they oversee to leave the question of removal from artificial nutrition and hydration up to hospital management and not the patient or family, living will or advance directive be damned).
Citing the three cases in Denver between 2004 and 2007 in which the Pittsburgh Protocol (waiting a full two minutes after removal from life support before removing organs from a "brain dead" patient, despite risk of organ deterioration) was violated for the sake of needy infants, Martanz Henig makes a fascinating point in her article that notes the root of the medical profession's tip-toeing around the definition of death. Robert D. Truog of Harvard supported the doctors' (and the hospital ethical board's) decision, saying that the "dead donor" rule was unimportant when considering whether an injured person's recovery was impossible and what the family consented to. But:
...Arthur L. Caplan of the University of Pennsylvania, recoiled at Truog's suggestion, mostly because of how it would be interpreted by an already skittish lay public. "We ought not underestimate public unease," he said. "Making people wonder if you're going to cut corners on their care in order to salvage organs from them is a very dangerous area to be in."
In other words, altering the "dead donor" law to allow, say, waiting less than two minutes, would deter the (already wary) population from signing up as organ donors. The number of people each year who die from lack of viable, transplant-ready organs (currently about 7000) could increase because of a fear of doctor's ethics regarding the definition of death. (See my post here
some months ago regarding a New York Times
article on organ donation which points out how rather arbitrary that two minute designation is.)
While I think that Caplan's fears are legitimate, I'm more interested in asking why. The medical profession has a long history of discomfort and distrust with minorities and females, particularly African Americans. Often this distrust, as with abortion and end of life care, is fueled by political motivation ("black genocide") or exceptions that don't prove a rule (Terri Schiavo again; there are 30,000 patients like Schiavo in our hospitals any given year). In other ways, history has proven that the medical profession preys on patients: futile care, aggressive elder treatment, lack of research into disease causes (see Barbara Ehrenreich's Cancerland) or lack of discipline in telling patient's the truth (because, you know, they can't handle it).
But this distrust should not be used as an excuse to let thousands of people die, to cruelly prolong the lives of the "heart-beating cadaver." I'm not saying that fear isn't real, I'm saying that it results from a lack of bodily autonomy. As recently as the 70s, women would go in for a simple biopsy of a breast lump and come out with full mastectomies. This kind of patriarchal, "doctor knows best" is a wound that the industry has brought on itself. It exists. It is real. But it should be combatted -- not by playing into it with arbitrary definitions that become arbitrary rules but by addressing it candidly. For the sake of patients, a frank discussion about the way death has changed over the past 40 years must be had.
Labels: artificial nutrition and hydration, definition of death, futile care, Organ Donation, patriarchy, scientific american, terri schiavo