Death and Dogma: Why it's so Difficult to Have a Reasoned Discussion about Dying

Last summer as the debate surrounding healthcare reform in the United States was beginning to heat up, President Obama found himself in political hot water for proposing an idea that some of his constituents found appalling.  In this case, the red line the president had crossed didn’t have anything to do with a public option or the use of pre-existing conditions to deny care.  What sparked the outrage was the suggestion that an eventual healthcare bill should include a provision ensuring that families can be reimbursed for end-of-life counseling.

When looked at from a rational standpoint, this suggestion is, at worst, harmless and, at best, an intelligent measure that could save cost and reduce unnecessary suffering.  On last Sunday’s episode of 60 Minutes, in a segment entitled, The Cost of Dying, it was revealed that the US government shelled out $50 billion last year alone in for doctor and hospital visits for patients in the last 2 months of their lives.  To put things into context, this is more than the annual budgets of the department of homeland security and the department of education.  Furthermore, it was estimated that 20 to 30 percent of those expenditures had no meaningful impact.  Several medical experts interviewed during the segment attested to the fact that the problem goes beyond economics.  Many patients are not aware that they have the option to decline drastic life-preserving procedures when it’s known that such measure will only delay the inevitable and needlessly prolong the patients’ suffering.

Yet in spite of a preponderance of sound moral and economic arguments indicating that the president’s proposal was a wise one, the discourse among media commentators rapidly devolved into a set of conspiracy theories about Obama’s desire to “pull the plug on grandma” and accusations that a government-run death panel would unilaterally decide when a person’s life was no longer worth living.  Much of the hysteria was artificially stoked by the president’s conservative opponents who seized the opportunity to score political points.  But the mere fact that such absurd claims would gain even a modicum of traction within a sane and ostensibly literate populace is evidence that faith-fueled dogma has made it nearly impossible to have a rational discussion about end-of-life matters in that country.

When it comes to discussions about death and dying, religion is the elephant in the room.  No body wants to acknowledge it, but much of the prevailing public policy dealing with end-of-life care is driven not by a rational interrogation of relevant scientific data or bioethics, but rather by the entirely unfounded premise that only god has the right do decide when someone’s time is up.  This is why in Canada and most of the United States, passive euthanasia is permitted, whereas active euthanasia remains strictly prohibited.  This means that if a patient is in a vegetative or locked-in state, it is okay for a caregiver to turn off the ventilator or remove the feeding tube so that, in the event that the person is secretly conscious on the inside (which is always a possibility), they will almost certainly endure one of the most prolonged and excruciating deaths known to man.  Meanwhile, caregivers are forbidden from administering drugs that would make the patient’s death quick and painless, even though both the active and passive approaches have the same end result.  As is usually the case, dogma manages to turn logic completely on its head.

This whole debate about what to do with patients in a vegetative state makes its return to the public consciousness every few years when a new high-profile case pops up.  Perhaps the best-known among these cases is that of American, Terri Schiavo.  In 1990, Schiavo suffered a sudden respiratory and cardiac arrest, which caused severe brain damage and left her in a persistent vegetative state.  In 1998, with no noticeable improvements in her condition, Schiavo’s husband and legal guardian, Michael Schiavo, petitioned the courts in Florida to have her feeding tube removed.  What followed was a highly contentious and highly publicized legal battle, which saw Schiavo’s husband pitted against her parents and siblings who insisted that Schiavo was still conscious and responsive.  Schiavo’s parents fought to gain “custody” of their daughter so that they could keep her on the feeding tube.  In the end, Michael Schiavo won and Terri’s feeding tube was removed on March, 2005.

In the mid-nineties, the case of an Italian woman by the name of Eluana Englaro made headlines when, following a car accident that left her in a vegetative state, Ms. Englaro’s father petitioned the Italian courts to have her feeding tube removed so that she could die naturally.  The father’s request was initially denied and it wasn’t until 17 years and numerous appeals later that the still-unconscious Eluana was allowed to die.  Unlike in the Terri Schiavo case, it was only the courts - under the heavy influence of the Catholic Church - that were demanding that the patient be kept alive.  Therefore the importance of adhering to religious dogma was deemed to be more important than the wishes of the patient’s family.

In both cases, the so-called pro-life movement protested against court decisions that they thought failed to honour sanctity of human life.  In the case of Terri Schiavo in particular, many put forth the argument that Schiavo may have been conscious, and so removing her feeding tube would amount to killing someone who was capable feeling both physical and emotional pain.  That’s why when the case of Rom Houben was publicized earlier this week, many within the pro-life community saw it as vindication.  Houben is a 46-year-old Belgian man who was believed to be in a vegetative state for 23 years.  However, now his family is claiming that he had been able to see, hear and feel the whole time but was simply trapped in a completely paralyzed body.

Many experts have voiced skepticism that Houben is in fact conscious and not just the victim of overzealous loved ones determined to infer brain activity that isn’t really there.  But let’s just assume for a moment that this man was trapped in an immobile body for 23 years, unable to communicate or do anything stimulate his mind.  Isn’t that all the more reason why he should have been allowed to die years earlier?  Speaking with the help of a facilitator, who guides his hand across the keys of a specialized keyboard, Houben described that entire period as a “nightmare” and as “23 lonely years”.  No kidding.  Clearly in his 23 years of solitude, Mr. Houben developed a taste for irony.

In this really good article from the HuffingtonPost.com, bioethicist Jacob Appel breaks down why, in cases like Houben’s, it may actually be more humane to let the person die rather than have them suffer though years of what he describes as “psychological torture”.  The arguments raised in the article are well-founded and are rooted in reason and logic.  Still, in the comments section I found several cogent critiques and dissenting opinions.  I only wish that a similar debate could be undertaken by those in a position to enact laws concerning these issues.  But until we can overcome the unchallenged and unscrutinized stranglehold that organized religion wields over discussions of ethics and morality, that’s probably not gonna happen.