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.
Sunday, September 21, 2008
Sunday, September 7, 2008
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.
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.
Tuesday, September 2, 2008
LIFE AND DEATH IN THE GREAT NORTHWEST - PART II
Picking up where my last post (Life and Death in the Great Northwest – Part I) left off, Montana’s foray into Death With Dignity isn’t via legislation, as in Oregon and Washington, but via a court case known as Baxter et al v. Montana, filed in October 2007. In it, two severely ill men claim a right under the Montana constitution to physician assistance in ending their lives when their situations become unbearable.
Robert Baxter, 75, has advanced leukemia, and Steven Stoelb, 53, suffers from Ehlers-Danlos Syndrome. The kicker is the Montana constitution. In 1972 the state adopted a new document con- taining express guarantees of privacy, and in a second pro- vision, dignity. Wow! Anyone putting a high stake on personal autonomy has to love that. Also, since privacy and dignity are fundamental to the view that individuals should be able to end their own lives on their own terms, it’s readily believable that Baxter and Stoelb could win. Even so, judicial outcomes are tough to predict and groundbreaking outcomes harder yet. The Cali- fornia Supreme Court’s recent decision finding a constitutional right to gay marriage—i.e. no compelling state interest to forbid it—caught almost everyone by surprise.
So, what would a Death With Dignity court victory in Montana mean? The Montana legislature could pass a law, presumably like Oregon’s, regulating how that right should be exercised. In the interim, or if political opposition prevented the passage of a regulating statute, Montana physicians would seemingly be free to prescribe life-ending medications without fear of prosecution if, in their medical judgement, the patient’s request was war- ranted. Similarly, family members would likely be free to witness or perhaps even hand the lethal dose to a willing but enfeebled person.
One nearly certain result would be fierce backlash from religious conservatives, who would try by initiative to delete the operative sections from Montana’s constitution. Otherwise, broad latitude for pregnant women in that state to choose abortion would seem to follow the same logic as a right to Death With Dignity. But the fact that those two sections were included to begin with is evi- dence of how libertarian Montana is, so predicting the success or failure of such an initiative is a roll of the dice. It makes one wonder, however, about the wording that might be in the con- stitutions of two other famously libertarian places, Idaho and Alaska.
That question I’ll research for a future blog. Still, Idaho, which constitutes a buffer zone of sorts between Oregon/Washington and Montana, may be less ripe a field for Death With Dignity. Religious conservatives wield greater power there, reinforced by a fairly large Mormon population in the south along the Utah border. And Utah, well forget it.
Early this decade, when the issue was being debated and defeated at the Federal level, Utah Senator Orin Hatch said such a law was simply unnecessary. "We already have the Second Amendment. Anyone who’s that concerned about ending their life can just buy a gun." Which suggests that a Death With Dignity program in Utah or Idaho might consist of a voucher to pay someone to save your family from having to clean up your house after you’d done the deed. Or would that be deemed a needless state expense?
Robert Baxter, 75, has advanced leukemia, and Steven Stoelb, 53, suffers from Ehlers-Danlos Syndrome. The kicker is the Montana constitution. In 1972 the state adopted a new document con- taining express guarantees of privacy, and in a second pro- vision, dignity. Wow! Anyone putting a high stake on personal autonomy has to love that. Also, since privacy and dignity are fundamental to the view that individuals should be able to end their own lives on their own terms, it’s readily believable that Baxter and Stoelb could win. Even so, judicial outcomes are tough to predict and groundbreaking outcomes harder yet. The Cali- fornia Supreme Court’s recent decision finding a constitutional right to gay marriage—i.e. no compelling state interest to forbid it—caught almost everyone by surprise.
So, what would a Death With Dignity court victory in Montana mean? The Montana legislature could pass a law, presumably like Oregon’s, regulating how that right should be exercised. In the interim, or if political opposition prevented the passage of a regulating statute, Montana physicians would seemingly be free to prescribe life-ending medications without fear of prosecution if, in their medical judgement, the patient’s request was war- ranted. Similarly, family members would likely be free to witness or perhaps even hand the lethal dose to a willing but enfeebled person.
One nearly certain result would be fierce backlash from religious conservatives, who would try by initiative to delete the operative sections from Montana’s constitution. Otherwise, broad latitude for pregnant women in that state to choose abortion would seem to follow the same logic as a right to Death With Dignity. But the fact that those two sections were included to begin with is evi- dence of how libertarian Montana is, so predicting the success or failure of such an initiative is a roll of the dice. It makes one wonder, however, about the wording that might be in the con- stitutions of two other famously libertarian places, Idaho and Alaska.
That question I’ll research for a future blog. Still, Idaho, which constitutes a buffer zone of sorts between Oregon/Washington and Montana, may be less ripe a field for Death With Dignity. Religious conservatives wield greater power there, reinforced by a fairly large Mormon population in the south along the Utah border. And Utah, well forget it.
Early this decade, when the issue was being debated and defeated at the Federal level, Utah Senator Orin Hatch said such a law was simply unnecessary. "We already have the Second Amendment. Anyone who’s that concerned about ending their life can just buy a gun." Which suggests that a Death With Dignity program in Utah or Idaho might consist of a voucher to pay someone to save your family from having to clean up your house after you’d done the deed. Or would that be deemed a needless state expense?
Monday, September 1, 2008
LIFE AND DEATH IN THE GREAT NORTHWEST - PART I
Since Oregon has always been a socially pioneering sort of place, we can’t be surprised that the Portland metro area is the nation’s most successful example of containing sprawl by setting and sticking to an urban growth boundary. Or that, in an effort to boost turnout and reduce costs, Oregon is unique among the fifty states in holding all statewide elections entirely by mail-in ballot.
More notoriously, of course, Oregon is also unique in having passed, and after many subsequent challenges, having retained on its books for over ten years now a straightforward Death With Dignity law. As ultimately upheld by the US Supreme Court, terminally ill Oregonians, subject to specific conditions and safeguards, have the right to physician assistance in dying. Once those conditions and safeguards are met, the assistance takes the form of a physician prescribing a lethal dose of an approved drug, which the patient then ingests, or not, at a time and place of their own choosing, according to the directions provided. The physi- cian is not expected to be in attendance, nor are physicians re- quired to offer this assistance if they have a moral objection.
After a decade of experience, fewer than 350 persons (1/10 of 1% of all Oregon deaths) have availed themselves of that option, although another 200 have received the prescribed drug and chosen, for whatever reason, not to proceed. Forty individual physicians have participated. No coercion toward a hastened death from family members or the government is permitted, and to my knowledge there have been no documented cases of abuse. What is known, however, is that terminally ill patients who have gotten the drug, whether they use it or not, report a having a greater sense of control over their destiny and feeling more peace of mind in facing the continued deterioration of their health.
This is old news, you say, so why do I belabor it? Two reasons. First, the November 2008 election in Washington, Oregon’s neighbor to the north, will put before voters an initiative statute, I-1000, closely modeled on the Oregon law. If current polls can be believed, it will pass, and the campaign in favor is being led by a popular former governor, Booth Gardner, who is visibly af- flicted with Parkinson’s Disease. Besides, Washington, though not as socially pioneering as Oregon, is itself a fairly independent-minded place.
There is opposition, as one would expect. As in Oregon, religious conservatives, especially the Catholic Church, can’t find enough ways to condemn the idea. Virtually all religions seek control over the births, marriages and deaths of their parishioners, the reasons for which are obvious. And since church affiliation in the US is freely chosen, no harm done. It's a voluntary compact. Whether government should intrude itself to insist that death occur in a way that ignores the wishes of the dying person and ignores the contributions modern medicine can make to that event is another question. Where, for instance, is the compelling state interest? I am fascinated to see what the Washington voters have to say about it. Church groups, meanwhile, are pumping millions into ads urging No on I-1000.
But perhaps the most interesting new development along these lines is occurring in Montana, a famously libertarian state that is separated from Washington to the east by only a thin neck of Idaho. We’ll discuss both Idaho and Montana in my next post.
More notoriously, of course, Oregon is also unique in having passed, and after many subsequent challenges, having retained on its books for over ten years now a straightforward Death With Dignity law. As ultimately upheld by the US Supreme Court, terminally ill Oregonians, subject to specific conditions and safeguards, have the right to physician assistance in dying. Once those conditions and safeguards are met, the assistance takes the form of a physician prescribing a lethal dose of an approved drug, which the patient then ingests, or not, at a time and place of their own choosing, according to the directions provided. The physi- cian is not expected to be in attendance, nor are physicians re- quired to offer this assistance if they have a moral objection.
After a decade of experience, fewer than 350 persons (1/10 of 1% of all Oregon deaths) have availed themselves of that option, although another 200 have received the prescribed drug and chosen, for whatever reason, not to proceed. Forty individual physicians have participated. No coercion toward a hastened death from family members or the government is permitted, and to my knowledge there have been no documented cases of abuse. What is known, however, is that terminally ill patients who have gotten the drug, whether they use it or not, report a having a greater sense of control over their destiny and feeling more peace of mind in facing the continued deterioration of their health.
This is old news, you say, so why do I belabor it? Two reasons. First, the November 2008 election in Washington, Oregon’s neighbor to the north, will put before voters an initiative statute, I-1000, closely modeled on the Oregon law. If current polls can be believed, it will pass, and the campaign in favor is being led by a popular former governor, Booth Gardner, who is visibly af- flicted with Parkinson’s Disease. Besides, Washington, though not as socially pioneering as Oregon, is itself a fairly independent-minded place.
There is opposition, as one would expect. As in Oregon, religious conservatives, especially the Catholic Church, can’t find enough ways to condemn the idea. Virtually all religions seek control over the births, marriages and deaths of their parishioners, the reasons for which are obvious. And since church affiliation in the US is freely chosen, no harm done. It's a voluntary compact. Whether government should intrude itself to insist that death occur in a way that ignores the wishes of the dying person and ignores the contributions modern medicine can make to that event is another question. Where, for instance, is the compelling state interest? I am fascinated to see what the Washington voters have to say about it. Church groups, meanwhile, are pumping millions into ads urging No on I-1000.
But perhaps the most interesting new development along these lines is occurring in Montana, a famously libertarian state that is separated from Washington to the east by only a thin neck of Idaho. We’ll discuss both Idaho and Montana in my next post.
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