SORRY FOR THE HIATUS

Been a few months, dear readers, since I've put up a post, about which I feel guilty, if that brings anyone solace. Many major news stories and other developments on the Death With Dignity front have arisen in that time, too, so I'll get back on it, promise.
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Here's my excuse: real life took over with a heavy deadline on edits to the novel I'm wrapping up for shipment to my agent, the birth of my first grandchild, and homework, etc. for the college ethics class I'm taking this semester. Hopefully the latter will have sharpened my perceptions concerning the issues I blog about, and soon we'll see. Thanks for your patience.

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New readers, meanwhile, can check out past posts. Some, as the headline indicates, are mainly reportage. Others, like the two pieces on immortality or the one on ensoulment/de-soulment, were intended to be more provocative.

WASHINGTON SEES THE LIGHT

Washington state, that is, not Washington, D.C. Our Death With Dignity allies up there deserve big congratulations and heartfelt thanks for their doggedly skillful efforts in passing I-1000 by a 58% to 42% margin on November 4. As a result, their state now joins Oregon in permitting physician assistance to terminally ill patients who wish to end their lives.
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Former Washington Governor Booth Gardner, himself a sufferer of Parkinson’s Disease, played a defining role in achieving this victory, both with his cogent arguments and his political know- ledge. Despite, we should note, determined, well financed oppo- sition from religious conservatives spearheaded by elements of the Catholic Church. Hats off to Mr. Gardner and his whole team.
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As for that other Washington, our nation’s capital, I’m afraid we'll have to wait before the light of sensible DWD policy shines there. President-elect Obama has a very full agenda, though perhaps we dare hope that somewhere along the line he might guide the changes in attitudes and law necessary to recognize that the freedom to choose DWD is a right all should have.

ENSOULMENT / DE-SOULMENT

When is it that I—my body and its various components, that is—stop being me? Or put another way, at what point do I experience de-soulment? Actually, there's no such word, but I didn’t make it up from the whole cloth. Ensoulment—usually spelled without a hyphen—can readily be found in the dictionary. It’s an ecclesi- astical term that describes the entering of the soul into the body, the soul in this view being sent from God as the defining human characteristic, the essence of what makes me, me, and you, you.
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Ensoulment is also a very un-favorite term as far as the Right to Life Movement is concerned, because over the centuries religious authorities have placed ensoulment at a range of times during pregnancy. These have included quickening (e.g. when the baby is felt to move independently of the mother) to more arbitrary markers such as one hundred days of gestation, or as late as partition (e.g. birth). Only rarely has the moment of conception been hypothesized as the moment of ensoulment, which means that the very early stage fetus would be only proto-human, and not yet a fully human entity.
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Renowned thinkers such as St. Augustine and St. Thomas Aquinas have weighed in on this question without reaching back as far as conception. Also, among bio-ethicists a leading idea has been that the emergence of consciousness might represent a science-based moment of ensoulment, although mention of the soul as such doesn’t figure in.
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But the emergence of consciousness can’t be detected all that precisely, so a working proxy is brain-stem life, which is detectable. The Right to Life Movement hates this line of reasoning too, because ninety to one hundred days gestation is about when brain-stem life can be verified. For purposes of this blog, let’s simply note that the first trimester standard for legal abortion in the US, which has been law for close to half a century now, is right in the mainstream of this thinking, then move on to my real topic, de-soulment.
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What I'm suggesting is that a symmetry exists at the end and the beginning of life. In the concept of ensoulment we have a proto-human cellular entity being animated with a soul at some later time and thereby becoming fully human. Similarly, at death, typically defined as brain-stem death for clinical purposes, one’s residually human and still cellularly alive organs can be harvested for medical use in some other person. So de-soulment would coincide with death, though in some religious traditions this is thought to happen just prior to death, with the soul hovering nearby in a bardo state until the body expires.
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True, neither the soul nor its apocryphal 21 gram (0.75 oz.) weight have any basis in science. With no religious connotation intended, I employ it here purely as shorthand for the ultimate essence of a living human. Yet my symmetry idea will nonetheless draw howls of protest. How could anyone equate a developing, first-trimester fetus, which is day-by-day becoming a human being, with harvested organs that will never develop into anything beyond what they already are?
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Simple. Cloning. Legality aside, with massive medical inter- vention, it would apparently be possible to use harvested tissue to create a whole new me. It’s freakish, and I'm doubious that such a clone, even with a complete transfer of brain content, could conceivably be me. Or not on the soul level posited above. But who can say? It would clearly be very me-like. And in terms of massive medical intervention, how different is this from the extremely exotic petri dish it would take to grow an early stage fetus into a baby were its mother to die while pregnant?
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So I do see a symmetry. We are brought into the world by acts on the part of our biological parents: acts of love, or of lust, or of simple heedlessness. And also by the act of our mother’s not ending her pregnancy, which women who don’t want a child have done in various ways throughout human history. Then, becoming somewhere along the line fully human, we are born, and until the age of our legal majority, our families function as regents, with a legal duty to nurture and safeguard us.
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After that, we are each in the driver’s seat, and have broad legal control over our destinies. Except at the very end. Brought into the world by the acts of others, sometimes taken from it by the acts of others who do us harm, and reliant on others when we become frail or infirm, it is nonetheless illegal to receive help in ensuring that we die a dignified death. Well, in Oregon we can, but nowhere else in the US right now. Instead, if desperate enough, we must turn our hands against ourselves with whatever weapon we can manage.
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And finally, following death, no matter how it has come, is the stage of de-soulment, during which our tissues and organs remain sufficiently alive to be put to other uses, assuming we’ve so authorized under the laws of our state. As actual human beings, though, we would by then be gone.

ETERNAL LIFE? (Part II)

In my preceding post (Eternal Life? (Part I)), I examined the most benign and universal model of eternal human life I could conjure to see if the kinds of intervention Death With Dignity groups advocate would become unnecessary. The answer was no.
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A world where no one dies quickly runs out of room for births, so in the absence of people volunteering to die, children have to be foregone as well. Not that happy a picture, when you think about it. But also, as a realistic scenario for eternal life, not really on the horizon yet, either scientifically or in terms of social acceptance.

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Where it does seem we are headed, though, is for a kind of eternal life that’s increasingly feasible scientifically and far more insidious than my theoretical version. Thankfully, due to my age, I doubt I’ll still be around, but in the not too far distant future, the odds point toward a combination of cloning, in-situ cellular manipulation and custom organ farming that will grant the rich eternal life while the poor continue to die. To build on the late billionaire Leona Helmsley’s infamous quote, "Only little people pay taxes," only little people will remain mortal.
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There are plenty of early signs. The estates and heirs of various wealthy individuals already pay tens of thousands of dollars a year to preserve the bodies of the deceased cryogenically, awaiting thaw-out and revivification when suitable treatments and/or spare parts become available. There is also a thriving, if disgusting, black market for human organs—don’t ask how they’re obtained—from third-world countries for potential transplant into well-to-do recipients elsewhere. In addition, techniques for human cloning and the other procedures cited above are being developed in laboratories around the globe, notwithstanding the legal and moral strictures against them.
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To a major extent, we ration healthcare based on ability to pay in the US, and to some extent so do most other countries—think of the controversy over AIDS medications. No one should be surprised if access to eternal life follows the same pattern. Nor am I anywhere near the first to see this and view it with alarm.
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French author Michel Houellebecq’s prize-winning novel The Elementary Particles, published eight years ago, was highly prescient. In the final chapter, a cell biologist who has just made key breakthroughs in the quest to provide the elite with eternal life is no longer able to stomach what that implies. He destroys his computer, gathers up his lab notes and documentation and drowns himself in the Irish Sea. Yet an epilogue shows his suicide to have accomplished nothing, because within a few years former colleagues have replicated his results and a master race of immortals is brought into being.
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Interestingly, in voicing opposition, I find allies among Evangelicals and Catholics, whose views on Death With Dignity and other social issues I normally reject. But here, we’re right in synch, and on the same grounds—social justice and the violation of God’s (or in my case, cosmic) law. In regard to justice, if one human is to be immortal, then all should be. In regard to cosmic law, death is a fundamental fact of all existence.
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To me, however, the latter is the biggie. My last blog demonstrated that, even when universal, eternal life for humans would have serious negative consequences at the practical level. But those pale by comparison with the futility of trying to deny that everything we can see or conceive of exists for only a finite time. Death and regeneration are how the cosmos works. To temporarily suspend death in the case of humans—which is all this sort of immortality would amount to anyway—is a chimera, a false hope. And to do it for only the select few is so manifestly unjust, so monumentally selfish, on the part of those who benefit that war and social breakdown will surely follow.
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What will be required to forestall this is a blanket repudiation of the idea by humankind as a whole—that we evaluate it as though we were Mennonite or Amish. And I’m not optimistic. The chimera of eternal life is the most poisonous apple on the tree of knowledge. Moreover, the growing ranks of the super rich—all those oil sheiks and those CEOs with their bloated salaries and their golden parachutes will be among the few who can afford it—make Houellebecq’s master race scenario the likely outcome. If you have doubts, remember that a great deal of this technology is already in place with the goal of collecting hefty fees to make our pets immortal. What's practiced and perfected on Fido now will later be an option for film stars.
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Mind you, I’m not opposed to stem cell research or other means of providing cures for particular diseases that will improve and preserve a person’s quality of life. I oppose only the systemic and probably ongoing interventions that will be required to preserve life indefinitely. If it takes repeated facelifts to maintain a somewhat more youthful appearance into one’s 80s, consider the periodic do-overs that piecemeal eternal life would entail. The basic structures of our bodies simply weren’t designed for it.
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I say stick with the immortality we already have. We are assembled from star dust, and will always revert to it, ceaselessly, only to be reassembled in a myriad other temporary forms, including, since the cosmos has infinite time and obviously knows the trick, reassembled again as our exact biological selves in alternate universes much like this one.
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There is also a strong connection here concerning the Death With Dignity movement. The quest for a narrowly defined human immortality is another facet of our culture’s attitude toward death: "We’ll ignore it, and when we no longer can, we’ll defeat it, because we’re special." As long as we allow ourselves to believe that, we will never, as a society, adopt sensible measures to halt needless suffering on the part of those who challenge our belief by actually dying. How devious of them! And if a deaf ear is the norm regarding end-of-life issues in so many places now, just wait until the rich don’t have to worry about it and the poor are the only ones to suffer.

ETERNAL LIFE? (PART I)

A definitive way to settle the debate over Death With Dignity and end of life care would be for humans to just not die—an idea that has beguiled our species throughout history. And it seems so straightforward, too.

In one form or another, it’s what most religions promise the righteous, while for sinners and secular types, any number of contemporary medical and genetic researchers seek to light the path. People who opt to have their bodies preserved after death via cryogenics are banking on it, in fact. But feasible or infeasible, how desirable would eternal life be?

The casual thought is that we personally—our own selves—would live forever in something like our peak state, however that might be defined. Yet we’d still be faced with everyone and everything around us—our neighborhoods, our parents, our friends, spouses, children, grandchildren, our favored political leaders and our favorite entertainment figures—degrading and passing away. Oops, too grim. And certainly if eternal life meant that humans would merely live out their normal span and at the end, elderly and infirm, just go on and on, I doubt there’d be many takers.

A desirable mode of eternal life would need to go more like this: all humans, say through genetic reprogramming triggered by an elixir administered during infancy, would cease to age after 35 to 45 years and then live unchanged forever. To ensure fairness and civil peace, the elixir would be universally available regardless of income, nationality or infant health status. The age range 35 to 45 presumes people younger than that would lack the maturity re- quired for an optimal society, while people older would be past their prime and too likely to create a drag on the vigorous and productive multitudes.

Of course, during the phase-in period, the entire human popula- tion would have to receive the elixir, with those over 45 offered a modified version that would immediately halt further aging. A certain quotient of "senior citizens" would thus continue to exist, and beyond their novelty value, some could perhaps serve as wise elders for the human enterprise. Meanwhile, the vast ma- jority would live permanently in their peak years, so economic activity could be expected to boom. Compared to other utopias that are bandied about, doesn’t sound half-bad, does it?

But let’s dig a little deeper. In a matter of relatively few gener- ations, the absolute carrying capacity of our planet would be reached and exceeded, with dire consequences for everyone. This is why heaven has always been conceived as an otherworldly dimension with limitless space for all found worthy. Hell is never seen as unsustainably crowded either. In the earthly realm, though, to rigidly limit death would require an equally rigid limit on birth. Among those for whom aging has ceased, the elixir would have to render them infertile as well. Among the younger, still aging population, childbearing could be permitted only if some other human, willingly or accidentally, died as an offset. Now things don’t sound quite so utopian.

Such a rationing scheme makes China’s controversial one-child policy seem moderate, and life overall would begin to resemble that portrayed in Alfonso Cuarón’s powerful 2006 distopian film Children of Men. Cuarón’s vision, set in 2027, posits a human race that has become sterile, with no live births since 2009 and wide- spread despair among people of all ages.

The result is an extremely repressive government that openly markets and advertises a product called Qietus, which provides users an immediate and painless death. Marketing is focussed particularly toward the elderly, because a society with no young workers and a shrinking population of vigorous adults can’t possibly cope with masses of unproductive citizens requiring expensive medical care. In other words, a society that has in- advertently vanquished birth without also vanquishing death.

These ideas do hark, however, to traditions among Native Americans and other nomadic peoples regarding those too infirm to survive without impairing the group’s safety. Such persons, typically aged, had a sacred duty to disappear quietly into the wilderness on a freezing night or to allow a stream or the ocean to carry them away. This behavior was expected and honored, and probably, in my utopia of eternal life, people who voluntarily ingest some variant of Quietus and die to make way for a birth would reap equivalent honor. Thus death would still be with us, for the simple reason that it would have to be, and it wouldn't differ much from current Death With Dignity practices.

But my immortality elixir has so far dealt only with death from natural causes. Constructing a plausible world in which death by trauma, due to war, accident, murder, etc., likewise doesn’t exist, is beyond my powers. I’ll just go with the concept and ignore the mechanisms by which it might be achieved. Here, then, is my premise: in the most benign model of eternal human life I can come up with, there is no death other than death self-chosen by persons who are enabling a child to be born.

A bit creepy, but that’s only where the problems start. Can any- one imagine the scale of corruption and coercion that would arise surrounding the issuance of birth permits? In addition to the in- evitable outlaw bands off in the hills making babies, there would be innumerable attempts to game the system and intense anger at anyone who was able to do so. Or perhaps a huge adult popula- tion, increasingly jaded by a life of endless stasis (see Jose Sara- mago's Death with Interruptions or Carel Capec's The Makropulos Case), would produce over time enough candidates willingly seeking death to keep things in balance. Who knows? What we do know is that even this hypothetical world wouldn’t be eternal, because in cosmic terms, impermanence is baked in the cake.

Our solar system would eventually die, and any artificially im- mortal human enterprise along with it. On their own schedules, so would all stars now visible, and every other type of complex matter, in whatever alternation of Big Bangs and Big Sucks con- stitutes the ultimate nature of reality. So, really, the only path open to us is to accept death for what it is, an integral part of life, and incorporate into our thinking a commitment to have it occur, when it does, in the most favorable way possible. I deeply fear, though, certain trends hinted at above which point in the oppo- site direction. For why, see my next post.

KNOW THINE OPPONENT

On the political right there’s a popular saying that "A conserva- tive is just a liberal who’s been mugged," and in some cases it’s probably true. Also true is that Death With Dignity (DWD) advo- cates, whatever their prior view of the subject, have often had exposure to tending a loved one through a lingering and intrac- tably pain-ridden departure from life.

DWD’s staunchest opponents, for the most part, are those lucky enough not to have witnessed such a thing and who don’t them- selves suffer from ALS, bone cancer or similar conditions likely to leave them in an uncomfortable, hopeless and helpless state for a prolonged period. In a culture so assiduously death-denying as ours, few, especially from the younger, healthier cohorts, give any thought to what could befall them as their lives end. It’s just not the sort of thing you want to dwell on. Besides, the kinds of truly bad deaths I refer to are a small minority among the many thousands of deaths that occur on any given day.

At the opposite end of the spectrum, deaths which might be cal- led good—i.e. peaceful, relatively expeditious and with family and friends having a chance to say goodbye—are rare as well. The great majority of deaths are merely deaths, no better or worse than the norm. Ah, you say, "’Twas ever such." But actually, it wasn’t. Modern medicine not only works cures and promotes recoveries that previous generations couldn’t have imagined, it can and does greatly extend the lives of hopeless cases where quality of life isn’t meaningfully taken into account. And one of those cases might be you.

Yet who’s to decide if or when enough is enough? That, pure and simple, is the crux of the DWD issue. My answer is the ill person him- or herself; never the government, never insurance compan- ies or healthcare providers, and never family members unless expressly designated by the ill person to make that decision. I see it as one of the absolute rights of person-hood, which medical practitioners should be as bound to follow as they are other direct instructions from a mentally competent patient.

DWD opponents, meanwhile, believe the decision is solely God’s, or in the case of nonbelievers, that it’s best left to chance. After all, miraculous recoveries have been known to occur. Nor do I doubt the sincerity of people holding that view. I accept that many of them fully intend to, and do, endure as a matter of faith or principle, whatever suffering may come their way. It’s a brave choice, and not easy to carry out, though it barely qualifies as choice, since the alternative possibilities—jumping off the hos- pital roof if you’re ambulatory or securing assistance if you’re not—are either heavily stigmatized or legally foreclosed.

Another popular saying, "God never gives you more than you can stand," sums up that view. My problem is in finding that view, when it is forced on others as a matter of law, to be immoral, and on the very basis it stakes for itself—the sanctity of human life. If there is sanctity to human life, and I believe there is, then respec- ting the wishes of the person whose life is involved follows from that sanctity.

Placing a higher value on human life in the abstract than one does on individual instances of it seems a very odd business. More- over, the notion that God never gives you more than you can stand is palpably untrue. What is death but God’s having finally given a particular human entity more than it can stand?

In addition, DWD opponents argue that the imperfections of hu- man nature mean no safeguards can ever be devised that will prevent government agencies, insurance companies, healthcare providers and unauthorized family members from seizing the opportunity and putting terminally ill and mentally or physically handicapped people to death. However, the Oregon record over ten years of DWD shows no such occurrences nor have any, to my knowledge, been documented in other countries with DWD laws. In fact, opponents who make this slippery-slope argument often contradict themselves by supporting the death penalty, despite its enabling statutes having been devised by imperfect human beings and despite its proven risks of executing innocent persons.

So what we have in regard to DWD is essentially a religious dis- pute, although anti side has so far been more successful in legislating and enforcing its view through government inter- vention. The same, of course, can be said of the pro side on legalized abortion, though I support that, because it expands individual autonomy in deciding whether or not to have a child without compelling any particular decision. Nonetheless, it’s a tougher call. While a fetus gestated less than 100 days can’t exist in any real way separate from the mother, it is still a human entity. Even so, within that timeframe I’m willing to weigh the mother’s autonomy, privacy and dignity as superior to the fetus’s not- withstanding that the fetus itself isn’t requesting abortion or giving informed consent.

While the two issues are frequently equated, DWD is altogether different. The human entity making the request and giving con- sent is the human entity whose life is offered up. What is free will, be it derived from God or not, if it doesn’t include the moral right to end one’s life or order it ended? But that’s not how things are in the US of A, or not yet.

Still, I understand why many people regard DWD as immoral and respect them for that. It’s a principled view. But like me, they’ve chosen to live in, and support with their patriotism, a country that has a bedrock constitutional prohibition against established religion. Where we part ways is that they want our government to behave as though it does have such a religion and I don’t. Under our system, blanket limits on individual choice in an area as fundamental as determining the circumstances of one’s last days aren’t properly a government matter.

But trying to put yourself in the other guy’s shoes usually helps in any disagreement. Let’s hope everybody now knows everybody else a little better.

POSTER CHILDREN?

In a previous blog (Life and Death in the Great Northwest – Part I) I wrote about Oregon’s successful Death With Dignity law and the upcoming election in Washington state where something nearly identical is on the ballot. I also mentioned political opposition to the Washington measure in the form of millions of dollars from religious conservatives, particularly the Catholic Church. Even the Portland Archdiocese has contributed a hefty sum, notwith- standing its struggle to pay for past child sexual abuse cases.

Now Fox News and the right-wing blogosphere have chimed in big as well. Since this is a campaign, and every campaign needs a poster, the search seems to be on for poster children. The leading candidate at the moment may be Randy Stroup, 53 years old, from Dexter, Oregon, who is afflicted with a recurrent prostate cancer judged to be terminal. A second Oregonian, 64 year-old Barbara Wagner, terminally ill with recurrent lung cancer, has made news as well, though not at the national level.

Without actually interviewing Mr. Stroup or Ms. Wagner, I’ve done my best to learn the facts. But first, we should express sympathy for them and acknowledge the cruel situations they face. Both, as noted, are terminally ill, with Stroup still a rela- tively young man, and both receive their health care through a public Oregon program coordinated with Medicaid, because neither could afford care otherwise. They both have received the full range of standard treatments, but both are now on the wrong side of Oregon’s long-standing and perfectly legal "5 in 5 rule"—no treatments exist that offer a 5% or greater chance of ensuring their survival for 5 or more years.

In both cases there are expensive new chemotherapy agents that might postpone their deaths by two to six months, with some possible gain in quality of life, but the costs are beyond what Oregon’s plan will pay. When the "5 in 5 rule" can’t be met, it covers only hospice care, palliative care—i.e. intervention for comfort and pain reduction—or access to lethal drugs under the state’s Death With Dignity law. Both Stroup and Wagner have received coverage denials in writing, yet the letters were so inartfully written that a nudging by the state toward the last of those options could be inferred. It was this that Fox News, et al seized upon to allege that Oregon is headed down the slippery slope to forced euthanasia, just as Death With Dignity opponents had predicted all along. Sadly, Stroup may believe that himself.

Maybe he’s at least enjoying the attention, and I don’t begrudge him, nor do I know how he got on Fox News’s radar, but the timing of the blowup in view of the election in nearby Washington hardly seems coincidental. Meanwhile, Ms. Wagner has actually benefited. Sensing a PR coup, Big Pharma, in this instance Genentech, has gifted her a one-year supply of erlotinib, the $4,000-per-month pills in question. All to the good, of course, so let’s hope the treatment works spectacularly and she beats the odds. Stroup hasn’t yet been as lucky, and it would be great if something broke in his favor too.

But what about the underlying argument. Is Oregon forcing people into euthanasia? No, not even close, though were that true, it would certainly be worth getting excited about. The fact is, Stroup and Wagner, by any measure, are better off under the health plan they have than with nothing, and in my opinion, better off in Oregon than they would be elsewhere.

Without health coverage, as President Bush said in discussing the uninsured, "you can always go to the ER." But does anyone ima-gine an ER would provide and pay for these kinds of treatments? Or would Medicaid in some other state? Slim chance. Or if Stroup and Wagner had private insurance, would their coverage extend that far? Not in 99% of the policies out there. So medically, in terms of what’s available to them at affordable cost, the Oregon Health Plan is it. And Oregon is also better, because the usual options of hospice or palliative care are delivered in a manner found by a recent University of Wisconsin study to rank Oregon with three other states as best in the nation. Moreover, uniquely in Oregon, patients can decide if and when to end their own suffering in the future should they choose.

Fox News was aflame with the horrors of medical rationing and the sinister presence of euthanasia. As if we don’t have rampant medical rationing now throughout the US that goes all but un- remarked. Under our so-called health care system, you get the treatment you can pay for, or some bedrock minimum, varying state-by-state, through public assistance when you’re out of money. For anything beyond that, tough luck. A better designed, more efficient and more universal system would undoubtedly raise the level of that bedrock minimum in many places, which I wholeheartedly support, but no system, public or private, would or could meet every imaginable need for every patient.

That happens only when you’re the one writing the checks, after which you still may die, sometimes in even greater pain, on the schedule originally forecast. In cancer we’re fighting a not fully understood disease with remedies that are at best only approxi- mately equal to the job. That’s why Stroup and Wagner had re- currences.

As a result, Genentech, not Oregon taxpayers, ought to be footing the bill for Ms. Wagner’s treatment. She’s in a fashion serving as their guinea pig, and if their brand of erlotinib proves more ef- fective than previous clinical trials have demonstrated, they’ll be handsomely rewarded with future profits. Fox News and other political opponents of Washington State’s Death With Dignity initiative seem bent on working up outrage over Stroup and Wagner, but sorry, I don’t see it. All I see is that the wording of Oregon’s treatment denial letters badly needs to be revised.