Do Americans Balk at Euthanasia?

Last week The New York Times got eight panelists together to answer the question, "Why do Americans Balk at Euthanasia?" It's a loaded question. Do Americans balk at euthanasia? Statistically, the answer is a fairly hearty no. And what do you mean by euthanasia? Death with Dignity, as legalized in Washington since 2008 and Oregon since 1994? Aid in dying, assisted suicide, passive euthanasia, active euthanasia. Of course the definition of the term itself is loaded in the U.S. in a way that it isn't in, say Europe.

At least the panel has some breadth, with Rita L. Marker and Margaret Dore holding down the antis and Jacob Appel and Philip Nitschke holding down the pros. There's enough in between to keep it interesting, and the panel gets more than one non-U.S. voice in there too.

Here's what I have to say about the entries:

Marcia Angell of Harvard Medical School give us the landscape. Where euthanasia is legal, via Death with Dignity laws, it is supported. She gives us two reasons why it's more controversial here in the U.S.: the Catholic Church (which, I might add, operates 1/5 of all hospital beds in the nation, according to their own Vatican-written laws, thanks to conscience clauses that let them skirt state and federal regulation); and our health care system. She posits that the "any practice that might save money raises the specter of rationing." While this is true of media commotion, the fact remains that statistics out of Washington and Oregon show that Death with Dignity laws prevent abuse. And I might add, save lives. When a state's population has had a public conversation about end of life issues, the use of advanced directives, living wills, POLST, and hospice all increase. And educated public, as they say....

Marilyn Golden of Disability Rights Education and Defense Fund writes under the title, "Too Many Flaws in the Law." She sites the case of Barbara Wagner as proof that insurance companies are keen on depriving ill patients of life-saving treatments. You can read my analysis of rationing and the Wagner case here. In short, Wagner didn't get the experimental drug she wanted because it had less than a 5% chance of lengthening her life. Golden is right to point out that diagnoses are not accurate but her pounding of "doctor-prescribed suicide" shows that she's not too willing to discuss how Death with Dignity is working or even to discuss the horrors of being caught between incurable pain and death. As well, it's been fascinating to watch the disability rights groups in the U.S. rally (or be rallied) by anti-euthanasia group. To my mind, patient autonomy (whether that patient is disabled or terminal) should be our social objective. Making the disabled afraid of their doctors isn't really the best advocacy. Yes, the disabled have a history of being treated like half-citizens. But removing patient autonomy from the conversation doesn't change that. Golden also warns that the existing laws are rife with bad reporting and that they subject patients to abuse. It would be much easier to find her argument reasoned if she sited unbiased sources.

Petra de Jong of Right to Die Netherlands notes that "euthanasia and assisted suicide can only be legalized in a country with optimum health care, including palliative care. But most of all, with citizens having access to good health care, regardless of their income." Valid point. If Compassion & Choices (the largest aid in dying advocacy group in the U.S.) wishes to advocate for Death with Dignity laws at the federal level--as a humanitarian right--they'll have to address the fact that those using it currently are predominantly rich, well-educated, and white. Does the U.S. need better health care. Yes, yes, yes. Should that preclude those who are terminal, thoroughly screened by their doctor, and in pain from getting a prescription for a drug that will end their life? I'm not so sure.

Patricia King of Georgetown Law and Johns Hopkins make the very important point that "the poor, the disabled, the elderly and members of racial and ethnic minorities -- worry that if assisted suicide becomes widely available they will be viewed as “throwaway people.” They fear coercion, stigmatization and discrimination, understandably believing that the societal indifference prevalent throughout their lives will also infect their end-of-life care." Important because I'm not sure there are statistics that back this up but also because she reminds us that whether the fear is real or not, it must be treated as legitimate. If you got the short end of the stick repeatedly during life, what's to convince you that you won't also get it in death? That's a powerful life lesson. And politically, it's a charged argument with legs.

Rita L. Marker has a lot of scary but inaccurate stats. She forgets that failed bills intended to protect minorities (in this case, those who just don't want to hurt anymore) are a poor sign of justice in our ancient democracy. Democracy has seldom stood up for minorities. One point that Marker misses again and again is that Death with Dignity laws allow a system of discussing end of life wishes with patients and tracking their deaths. Medicine is not exact. The body is unpredictable. But how many deaths do you think occur outside of Washington and Oregon that would call the double effect into question? Transparency is what Death with Dignity brings. So long as we continue to treat death (and any conversation about it or any preparation for it) like a taboo (a tack that many anti-euthanasia groups pursue) we'll be doing our loved ones a disservice. Put down your "culture of death," Rita, and step away from the computer.

And then there's Margaret Dore. I've spent a good number of hours on the phone with Dore. She's convinced that elders are will be murdered as soon as aid in dying becomes legal, despite the fact that no such thing is happening in Washington and Oregon. Dore is right on two things though: elder abuse is real and alarming. But it's been taking place in every state for far too long and ranges from petty theft to physical and sexual abuse. But that horrible state of our elder care system just isn't due to Death with Dignity. The second point Dore makes, by naming her new non-profit "Choice is an Illusion," is correct. The choice and autonomy language that ushered in the women's rights movement of the 70s and 80s has inadvertently silenced any conversation about community, shared responsibility, and social ethics. It's painted patients' rights conversations into a corner. Otherwise, Dore uses an anecdote about her friend's unexpected recovery to stand in for all other statistics. Yes, miracles happen. Yes, sometimes treatments can turn around a diagnosis. But much more often, terminal diagnoses err on the longer side, drugs are horrendously painful, and patients have more peace if they can talk about what's coming.

Philip Nitschke writes, that the right to aid in dying won't broadly be legalized in the U.S. until Americans reclaim "control over one's body from God."

Jacob Appel warns that the public perception of what euthanasia is and how it works has been poisoned by "pro-life" parties and those who are busy fighting the "culture wars."

What most of these panelists do not stress strongly enough that the dying are desperate. Our system is broken. Pain alleviation is woefully, distressingly behind the times. Our current medical system pushes terminal patients from one aggressive treatment to the next without thought to the torture that they are causing. That's why patients in hospice live longer than those who aren't. The public conversation that comes from a sober discussion of end of life care far outweighs the opportunities for abuse that opponents would like to scare us with. Furthermore, the general medical apparatus that we are all subject to today makes more on a live being than it does a dead one. Euthanasia is a polarizing issue that directly affects a minute number of patients each year--where it's legal. But it's political affects are enormous. And at the moment, those political affects are serving profit-driven parties that oppose real health care reform.

Intubated Women

Last week I was on a panel at NYU titled, "The Gender and Sexual Politics of End of Life Care," an event hosted by NYU’s The Center for the Study of Gender and Sexuality, along with Amber Hollibaugh, Susan Gerbino and Ai-jen Poo, brilliant women doing phenomenal work in the areas of LGBT rights, palliative care and domestic workers’ rights. Click here to read the (rather rough) text of my talk, which addresses Catholic hospitals and the use of feeding tubes.

Canada Revisits Aid in Dying

A wheelchair bound Canadian grandmother, Gloria Taylor, who has Lou Gherig's disease has asked the British Columbia Supreme Court to allow her doctors to give her a lethal dose of medication so that she can end her life. The decision is expected next year and lawyers predict that the case will be taken to the Canadian Supreme Court. This rather standard article from the AP has a paragraph that caught my attention:

In the latest case now unfolding, Taylor's lead lawyer, civil liberties defender Joe Arvay, argued to the court that assisted suicides were taking place despite the ban, a practice he likened to the illegal "back-alley abortions" of the past.

I've been urging women's rights advocates in the US to pay closer attention to the opposition to certain medical services and treatments. Often those who oppose abortion--"pro-life" and "family and marriage" groups and the Catholic Church, among others--also oppose the legalization of aid in dying. Shame often functions to keep proponents of such services quiet. And yet, abortion and aid in dying have taken place for as long as humans have existed. How they are provided and regulated is perhaps the paramount question for society; they are issues that test our humanity and require us to reckon with a new definition of life and death created by modern medicine.

The Week in EOL News

In a recent article at The Catholic Sentinel, Richard Doerflinger, Deputy Director for the Secretariat for Pro-Life Activities continues to develop the church's argument against aid in dying by conflating it with assisted suicide and by citing disregard for the ill or disabled as causes for aid in dying's increasing support and legalization. (I interviewed Doerflinger about the church's new initiative to fight legalization of aid in dying in June.) From the Sentinel article:

The Oregon law carves out a class of citizens — those diagnosed with six months or less to live — and suspends statutes that protect them from getting help to kill themselves. For Doerflinger, it's like coming across two people about to jump off a bridge, one who has a diagnosis of six months or less to live. For one, society tries persuasion, mental health treatment and emergency intervention. But to the one who has a serious physical illness, Doerflinger explained, "We say, 'Jump. Can I give you a push?'" The issue, he said, is that our culture is uncomfortable with sickness and disability. "We don't see inherent dignity in people when thy have these conditions."

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The San Francisco Examiner has been covering the story of Hong Ri Wu, who is accused of killing two of his shop-owner rivals. Wu was determined unsound for trial and then he refused to eat. Local police officials, at the direction of Sheriff Hennessey took him to the hospital but the hospital refuses to put him on a feeding tube. The Examiner writes:

Hennessey insists his department has a mandate to provide for the safety of each inmate. But hospital officials have balked at force-feeding Wu, although spokeswoman Rachael Kagan declined to discuss Wu’s case specifically, citing patient privacy laws.

“As a hospital, we respect individual self-determination and include our patients in their health care decisions,” Kagan said in a statement. “When a patient is also in custody, that patient loses some rights, but not all of them.”

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Meanwhile, thousands of California inmates have resumed a hunger strike that is meant to draw attention to their inhumane conditions in that state's facilities. Prison officials are threatening "discipline."

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"Baby Joseph" Maraachli die this week. The child, born in Canada with a terminal illness, became a "pro-life" cause when the hospital there refused the family's request for a tracheotomy. The hospital deemed the operation futile. So Father Frank Pavone of Priests for Life and other Catholic and "pro-life" groups including the Terri Schiavo Life & Hope Network, raised the funds to have the child airlifted to the US. The first US hospital they sought care from refused, but a Catholic hospital took the child in and completed the procedure. After a brief stay in the US, Priests for Life then shipped the child and his family back to Canada. Pavone said the child and his family had, "fulfilled a mission from God." The case has caused some interesting fault lines to emerge that involve denominational health care, issues of futile care, the treatment of pediatric terminal patients, and, not least, within the Catholic Church regarding the finances of Priest for Life. Father Pavone has since been called back to his home diocese; the causes remain murky.

"Pro-life" groups have said that their objective was to allow the child to die at home, a statement that echoes both home hospice and aid in dying advocates, perhaps signaling broader acceptance that a home death is preferable to a hospital death.

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The death of Troy Davis was not the act of a faceless state against a potentially innocent man. Amsterdam News writes about the company that was contracted to oversee the execution, the same company that is contracted to provide health care services to inmates in prisons. For-profit companies are increasingly called in to provide inmates with care in prison settings, in part because the incarceration industry is just that, an industry, with states spending big money to manage their prison populations and high-powered lobbyists pressuring local law makers to "protect" their state citizens by being strong on crime. As well, particularly in the South, prison populations are growing exponentially older and require more health care services. But the challenges for CorrectHealth and other such health care companies operating in prisons is that they are increasingly under fire for unethical and illegal activities, including the use of illegally-acquired execution drugs. Drugs like sodium thiopental, which is part of a three drug series used to execute inmates. It's no longer in easy supply because Abbot Laboratories, its sole US manufacturer, has stopped making the drug. For a while states were purchasing sodium thiopental from the UK but drug officials there have cracked down on it's international export. This scarcity has forced US prisons to beg and barter with each other or to find illegal sources. Writes the Amsterdam:

It was Dr. Carlo Musso, who owns CorrectHealth, a for-profit company that provides what they call "cost effective" health care to prisoners, who managed the process. He does this work under the umbrella of another company he owns, Rainbow Medical Associates, which, according to the American Civil Liberties Union, is contracted by the Georgia Department of Corrections to do its executions.

While some may defend Rainbow Medical Associates as capitalism in action, Musso might find himself in a heap of trouble-of the legal kind-that could do more damage than the backlash from the Davis execution.

Earlier this year, the Southern Center for Human Rights filed a complaint against CorrectHealth, accusing them of illegally importing and distributing sodium thiopental, the drug they use in carrying out the execution of convicted felons.

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The Atlantic this week wrote about a new documentary that examines the "unique subculture of hospice volunteers as they contemplate their own philosophies of life and death." (h/t Scott Korb)

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The Guardian reports on a case in the UK that was brought by the family of a minimally conscious patient to remove her feeding tube. The family of "M" held that she would not want to be kept alive with a feeding tube, but the court did not decide in their favor, stating that her level of consciousness allowed that she may feel discomfort if removed. From the article:

The case raises deep existential and moral questions – questions that law is not well equipped to answer. The Mental Capacity Act does at least, provide a framework for discussion but it offers no guidance on how each factor should be weighted. For the family, the key factor was that M's continued existence was not what she would have wanted. For Mr Justice Baker, the decisive factor was the preservation of life.

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As with abortion, the language used to discuss end of life and patients' rights continues to be muddied up, with each side claiming to stand for the patient. Wesley J. Smith's recent scree against futile care is telling. He's taken up the rubric of patients' rights, claiming that a patient who wants just one more chance at beating cancer should be able to make that decision for themselves, regardless of limited health care resources, the doctor's recommendations, or that of the hospitals where the patients are treated. I've said very much the same thing myself, here, repeatedly. But what Smith and others fail to miss -- and this is a conservative blind spot that we see exploited often -- systems and culture affect how patient's view their health care choices. Those concerned with futile care recognize that a culture of "do everything" is responsible for the increase of treatments and services that won't save lives and often prolong death. Those of us who stand for patient's rights -- a person's right to choose what their best path of treatment may be -- must be careful to recognize that cultural influences and not just the individual's ideas about their fate can play a role in the patient's choice. If you want to stand for choice in all cases, abortion advocates have long known, you have to stand for even the choices you don't agree with.

Don't miss Smith's knock of the Veteran's Administration, the largest provider of health care in the US and conservative's primary example, after medicare, of how the government mismanages health care.

Patient's rights is a term I use often but independence and individual rights are only half the conversation. We're also members of a community and creators of a culture that establishes values even as we espouse them. Simple calls for patients' rights (or women's rights, etc.) are only part of the challenge those who wish to address the vagaries of our health care system (or it's absence) must consider.

Smith, who claims to be a bioethicist, often blames greed for what he says is a pervasive "culture of death." With many issues like pentagon spending, incarceration, and social services, I've said pretty much the same thing. But what Smith misses is the responsibility that society has to the patient to prepare them for death and to do no unjust harm. Futile care often stymies both. And it's preventing us from talking about death and health care in practical, dignified ways.

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Read Catholics for Choice's recent open letter to Kathleen Sebelius, posted at Politico, here. The group is fighting The Catholic Church's heavy lobbying for less restrictive conscience laws in the new insurance coverage guidelines. The Church claims that allowing insurance programs to cover contraception is an offense to their religious conscience and that clauses in the new regulations are far too narrow for their health care providers to work according to their faith. In other words, Catholics for Choice wishes to remind the government that the influential priests who have mobilized against the regulations do not speak for the US's Catholic community but for the Vatican. Or rather, their male dictatorial selves.

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Funny how long it took the Wall Street Journal to pick up this study about the public's views of those in persistent vegetative states.

What the USCCB's New Focus on Aid in Dying Could Mean

I have a new piece at The Nation that you can read in its entirety here. Here's an excerpt, below. It was posted Wednesday night but I'm still waiting for Kevin Drum and Ezra Klein to call....

A focus on aid in dying should illuminate failures in end of life care, of which the US has many. In our current state of crisis—52 million people are uninsured; the United States spends twice as much on healthcare than other developed nations, with inferior results; the population is growing older; the dying are often subject to debilitating futile care in their last days—we can hardly afford ideological diversion. As with the issue of abortion, when the Catholic Church shines a spotlight, Americans get blinding orders, not illumination.

Even typically astute writers miss the point on end-of life care. While Ezra Klein, the Washington Post's healthcare expert, didn't endorse Catholic pundit Ross Douthat's contention that aid in dying should be illegal (though Klein failed to acknowledge that it is legal in three states), he bought the same "slippery slope" argument "pro-life" groups have used for years to oppose and restrict abortion. While Mother Jones's Kevin Drum refuted Douthat’s religious arguments and Klein’s sources and logic, he too failed to connect the conversation on assisted suicide to the larger crisis in end-of-life care. Neither took meaningful issue with the outsized role the Catholic Church—which operates one-fifth of all hospital beds in the United States according to their own guidelines—plays in this or the healthcare debate.

BBC's Pro-Death Propaganda

A BBC special by the renowned British author Terry Pratchett has caused a stir in the UK. Shown Monday night, "Terry Pratchett: Choosing to Die," included footage of a patient ingesting lethal medication and dying in a Dignitas clinic in Switzerland, where aid in dying is legal. Nearly 900 viewers contacted BBC to complain. The show caused a furor that reached the state level; several peers are accusing the station of taking a side in the aid in dying debate, one of the more contentious issues in Britain at the moment. Aid in dying is not legal in the UK. Terry Pratchett, diagnosed with Alzheimer's, is a vocal advocate for the right to die.

Last year Kier Starmer, the Director of Public Prosecutions, ruled that it was legal to assist a patient in their death, a decision that was the result of a court case brought by multiple sclerosis sufferer, Debbie Purdy, in 2009. Purdy asked the courts to allow her partner Omar Puente to assist her travel to Switzerland when she decided to end her life -- without risking court action when he returned.

(h/t Mrak)

Montana and Assisted Suicide.

The Missoulian gives a run-down of the bills before the legislature in 2011 including one sponsored by Rep. Dick Barrett, D-Missoula that will reinforce the Supreme Court decision last year that ruled the state constitution did not prevent assisted suicide.

"My sense is that terminally ill Montanans really do want to have this choice available to them, not that large numbers of people take advantage of it," Barrett said when requesting the bill draft earlier this year.

"We'll be advocating for Montanans to continue to have access in aid in dying and to make those decisions with their doctor without government interference," Zupanic said.

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Jeff Laszloffy, president of the Montana Family Foundation, said his group stands against physician-assisted suicide.

"I think one of the big ones we're really going to be fighting is the legalization of assisted suicide in Montana," he said.

Meanwhile, Sen. Greg Hinkle, R-Thompson Falls, is requesting a bill to ban physician-assisted suicide in Montana. He has referred to it as "elder abuse."

Smith False History and Leaps of Faith.

It's hard to believe that Wesley J. Smith has been watching the assisted suicide movement for the past 17 years and still has to publicly ask the question, "Why Now?" Yet this is the shallow and disingenuous hook on which he hangs his new article at the Catholic magazine Legatus. After spending three paragraphs spinning the recent history of the aid in dying movement as a powerful force railroading the sanctity of life -- and seemlessly sliping in a new usurpation of social activism terminology, "sanctity/equality of human life"! -- he writes:

A question amidst all of this Sturm und Drang naturally arises: Why now? After all, 100 years ago when people did die in agony from such illnesses as a burst appendix, there was little talk of legalizing euthanasia. But now, when pain and other forms of suffering are readily alleviated and the hospice movement has created truly compassionate methods to care for the dying, suddenly we hear the battle cry “death with dignity” as “the ultimate civil liberty.”

With respect to Smith's long years on the euthanasia beat, this is a laughable misrepresentation of history -- and one that he certainly knows better of. While Smith's essay concoctions are typically junk-science based, they're at least sincere. But, as any reader of Ian Dowbiggin will tell you, the roots of the aid in dying (or euthanasia or assisted suicide) movement are far longer and deeper than Smith is letting on. Simply noting the rise of Christianity's condemnation of suicide and assisted suicide doesn't change the rates of each in pre-, modern, and post-modern society. Condemnation of practice is necessarily precluded by said practice....

He writes that there are two reasons why the aid in dying movement has scored some successes since 1994 (Death with Dignity is legal in two states, Oregon (1994), Washington (2008) and in Montana (New Year's Eve, 2009) the Supreme Court ruled that nothing in the state constitution prohibits doctor prescriptions of legal drugs for the terminally ill). Well, really he gives three:

First, the perceived overriding purpose of society has shifted to the benefit of assisted suicide advocacy, and second, our public policies are driven and defined by a media increasingly addicted to slinging emotional narratives rather than reporting about rational discourse and engaging in principled analysis. Add in a popular culture enamored with social outlaws, and the potential exists for a perfect euthanasia storm.

I've bolded the points. For someone lamenting the lack of "principled analysis" and "rational discourse," Smith seems to rely heavily on some "emotional narratives" himself! One can't combat poor logic with more of the same (The media promotes assisted suicide? Kevorkian (the assumed social outlaw, noted at the start of the article) is a boon to the assisted suicide movement?) Nor can one condemn "slinging emotional narratives" when advocating for Terri Schiavo's family and touting the "discovery" of Rom Houben, clear examples of Smith's own effort to sling "emotional narratives."

But let's play Smith's game of "Why Now?," but use facts like: the relatively recent advent of widely accessible palliative care and pain cessation; the lightening-quick advancement of technologies like defibrillators and respirators which have changed the definition of death (once the almost simultaneous cessation of lung, heart and brain function, now something that happens when machines are removed); the prevalence of CPR, 9/11 and other resuscitating procedures that, despite public understanding (thanks in part to medical shows) work about 15% of the time (to be released from the hospital) and often leave surviving patients with broken ribs and/or in persistent vegetative states; the rise of patient autonomy activism to give patients the ability to make their own decisions regarding health care, against the prevailing influence of a paternal medical system (women in the 70s were often given full mastectomies without being consulted); a medical and social culture that condemns dying patients as weak, unable to fight, and doctors as failures, as if death can be put off indefinitely; a "survivor" culture that celebrates those who recover from debilitating disease and, as with breast cancer, thus focuses fundraising and research on cures rather than preventions.

Yes, these developments have all occurred since the 1970s. Yes, they have jeopardized our economic stability by reducing health care to a privilege. Yes, they have been ignored by ideologically motivated individuals like Smith who would rather go on about emotional narratives, the fall of man, the horrors of media and Jack Kevorkian, a decline in human virtue, and the "culture of death." Yes, the powerful "pro-life" groups that have supported the rise of the Medical Right and the Legal Right have continued to cry persecution as they've worked to impose their idea of morality and ethics on the whole of society.

Smith's proof that he's right about the three causes of the movements recent escalation? Suffering! Virtue!

Social commentator Yuval Levin, a protégé of ethicist Leon Kass, described the new societal zeitgeist in his recent book Imagining the Future: Science and American Democracy. While not about assisted suicide per se, Levin hit the nail on the head when he described society as no longer being concerned primarily with helping citizens to lead “the virtuous life.” Rather, he wrote, “relief and preservation from disease and pain, from misery and necessity” have “become the defining ends of human action, and therefore of human societies.” In other words, preventing suffering and virtually all difficulty is now paramount.

Smith's extrapolation from that elegistic longing for (persistent) paternalistic, white, Christian-dominated, authoritarian times? "In such a cultural milieu, eliminating suffering easily mutates into eliminating the sufferer." How? He doesn't say. And he doesn't show examples beyond his own fact-less assertions. But he is toeing the same illogical line that we often hear from those who find glory in suffering (of the dying, of sexually active teens, of coerced women, of gays.) "If we could only save these sinners from themselves?!" he seems to say. Because ultimately, Smith and those who refuse to examine the effects of their "pro-life," discriminatory advocacy are really working to make all of society ascribe to their values, their rules, their false narratives and their beliefs. The fight over aid in dying (and abortion and gay rights, etc.) is really a fight for power; power for a select and moralistic few to tell all the citizens of our country what we should be doing.

As Tony Judt writes, there's another objective behind obscuring facts and thwarting serious, statistics-based discussion in the public square:

Today, we are encouraged to believe in the idea that politics reflects our opinions and helps us shape a shared public space. Politicians talk and we respond—with our votes. But the truth is quite other. Most people don’t feel as though they are part of any conversation of significance. They are told what to think and how to think it. They are made to feel inadequate as soon as issues of detail are engaged; and as for general objectives, they are encouraged to believe that these have long since been determined.

The perverse effects of this suppression of genuine debate are all around us. In the US today, town hall meetings and ‘tea parties’ parody and mimic the 18th century originals. Far from opening debate, they close it down. Demagogues tell the crowd what to think; when their phrases are echoed back to them, they boldly announce that they are merely relaying popular sentiment.

Ultimately, Smith tries to accomplish a number of things in his article, though his success is reliant on his readers' lack of curiosity about the real changes that have heightened discussion about futile care, aid in dying, living wills and advance directives, provider refusals, patient autonomy, organ donation and discrimination in health care. If he can paint them all as an offense to the "sanctity of life" he mis-frames and misleads the discussion from the facts. The agenda of his article is:

- make a case for "virtuous" suffering, as if "virtue" and "suffering" are clearly defined by all members of our racially, culturally, functionally diverse society

- conflate Kevorkian with the aid in dying movement when, while supporters of each may overlap, they are hardly a monolithic advocacy movement

- usurp rights, equality, and autonomy language (long the province of left-leaning advocacy) to his own "pro-life" purpose; this conflation of terms (particularly regarding abortion and feminism) has proved a successful "pro-life" juggernaut for true rights advocates

- stymy meaningful, substantive public discussion by narrowing, limiting, falsely framing the ways in which we discuss human autonomy, suffering, futile care, life, faith, and death; Smith has no interest in examining the facts surrounding superior end of life treatment and planning in states where Death with Dignity is legal; in looking at the ways medicine has until recently failed those who faced painful deaths; no facts on the cases of suicide or mercy killing that occur in the US because of extreme suffering; no discussion of futile care "tracks" that push suffering patients into one unhelpful treatment after another

- he pretends that history is static, that the idea of "traditional values" actually once represented the whole of society; an old tactic by those who wish to continue discrimination against gays, women, elders and those who do not live by dominant culture's rules

I often tackle Smith's vacuous, over-simplified articles; we can hardly ignore him when he has so much influence and plays such an important -- if self-aggrandized -- role in the "pro-life" movement. But I think singling out Smith is instructive for those of us who believe in human rights and liberty. He represents the larger thinking in anti-choice movements; he works for the Discovery Institute, a well funded promoter of bunk science like "Intelligent Design"; and he serves as a case study for how organized, influential, well-funded and well-promoted foes of individual rights are. He and others can cry persecution all they want; but I'm hopeful that the increasing prevalence the aid in dying (and other human rights) movement(s) will help the public discourse. We can't deny death forever.

Denying Death in Montana's Legislature

Here we go: Montana Republican state senator Greg Hinkle has introduced a bill that would make it illegal for a doctor to give a mentally competent, terminally ill patient a lethal prescription. The bill is a reaction to the New Year's Eve decision by the state supreme court that aid in dying is not prevented under the current state constitution. Those of us watching the state since the New Year have been noting the battle brewing there. Compassion and Choices, participants in the Baxter v. Montana case, have been running ads to make more citizens aware of the dying process and the way aid in dying works. They've rightly anticipated moves like this by legislature and "pro-life" groups to temper that ruling. Hinkle's statements in this article are, I think, very telling of the mindset he represents.

Hinkle says a family member was told he only had a short while to live. That was over 30 years ago and he's still alive with great grand kids. He thinks people could take advantage of a sad person for malicious purposes. He says "If you're in a depressed state, which some people can be, then they might say I give up instead of fighting it. Look at how many cases of people with debilitating diseases who are going to fight .

The common argument against aid in dying takes these points as evident, moral and worthy of state enforcement:

1. Doctors misdiagnose and miracles do happen (meaning God can reward us with a reprieve from a terminal illness)

2. Society, termed the "culture of death" by "pro-life" groups, is out to kill. Hinkle and others see themselves as protectors of moral and religious behavior.

3. A patient who "gives up" on life by asking for aid in dying doesn't deserve to have their suffering alleviated. In other words, those who accept that death must come are not victims of a terminal disease but victims of their own lax morals. And yet, those who request aid in dying have most often fought their disease for years - in Baxter's case it was 12 years - with a strong will to live.

4. By legislating that all patients refuse to "give up," Hinkle is arguing for futile care, that each of us deny the likelihood of death and accept the physically, emotionally and financially costly treatments that can't save life but can only prolong death, if not for themselves then for a society that works to deny death.

The Case for Suffering.

Here are two interesting clips: one a heartbreaking story from a New Haven, Connecticut newspaper about the experience of a dying friend; the other a article on a talk given by Margaret Somerville on why aid in dying should remain illegal in Canada. What I'm contrasting in these two clips is the way suffering is discussed, the value placed on it, and the religious ideas that inform our justifications of suffering.

The so-called murder-suicide of a North Haven couple suffering from Alzheimer’s and cancer touches me, not only sympathetically, but personally. I have a longtime friend who, as I write, is facing a prolonged dying in "the American way."

She is a virtual prisoner of what, echoing President Dwight D. Eisenhower, one might call "the medical-religious complex."

Certainly, there are reasons to hold life sacred and to beware the institutionalization of death-dealing. Counterweighing these is the respect due to an individual’s autonomy in matters of ultimate value, especially the quality of one’s own life and death.

My friend has led an active, meaningful life, but now finds herself unable even to read, or to take pleasure in personal company, or to get out of her hospice bed, because of both the pain of her illness and the grogginess induced by the drugs used to combat her pain. While everyone caring for her is well-intentioned, the fact is, as she just put it to me, "I want this to be over yesterday."

AND #2:

Arguments against euthanasia are complex and far more difficult to make, she said.

"Today, the argument for euthanasia is the easiest to make," she said, noting the concern for the autonomous individual. "It's my right, my body. The individual has the right to choose death."

The arguments against euthanasia concern its effects on institutions, such as the health care system, hospitals, doctors and society as a whole, she said.

People often argue that we are merciful to dogs by euthanizing them, so why shouldn't we do the same for human beings, she said. "We're not dogs!"

Somerville said one of the biggest challenges is to argue there is something special about human beings without using religious reasons.

Traditional religion used to serve as a way of putting talk of death into a context of eternity, she said. "It is very difficult to justify suffering without some form of religious argument."

Inconsequential Methods of Execution.

A sobering post from San Quentin, CA by KTVU.

But first an aside: How we kill is never inconsequential. My interest in death row and executions clearly (to me) coincides with my interest in end of life care. The state sanctions killing, whether we're declared brain dead and reside in a hospice facility in Florida, or have a PEG tube inserted when we are 6 months from death in an elder home, or whether we've killed a woman thirty years ago. I despise liberal arguments for consistency -- against inconsistency and hypocrisy -- deeply. Yet, our society tends to get flummoxed over the issues of death in any of these situations and to operate from bifurcated trajectories given the "quality" of life that's being contemplated. I've never lost a loved one to violent, death-row-worthy crime but I have sat at the bedside of someone I loved who was dying. If killing is killing, as "pro-life" and disability activists say, where is their work to make the state accountable for death-row executions? If judgement is God's, and sin is his to determine, why shouldn't humane execution for a civilized people be something more than "inconsequential"? And if we're so certain of the exactitude of the judicial process, how can we ignore the exonerations that DNA testing has brought to light? If we don't see our judicial system as class and race biased, why are most prisoners black and poor young men? Why are the headline-grabbing persistent vegetative state patients, like Terri Schiavo and Nancy Cruzen, all young white females? We smirk at Kevorkian biopics, yet exercise his same certainty when asserting our own convictions of right and wrong when ending lives.

And why don't we desperately want these answers?

California's new death chamber was completed one year ago, but the facility has never been used due to an ongoing battle over the methods the state would use to execute inmates.

Although 702 inmates sit on death row, executions are holding even. The last man scheduled to die was Michael Morales for the 1981 rape and murder of 17-year-old Terri Mitchell.

Two hours before Morales was to die by lethal injection, a federal judge effectively halted his execution and all those to follow until the state changed its execution protocols.

That was four years ago.

"The four years has been awful for the crime victims," said Nina Salarno Ashford of Crime Victim's United.

Crime Victims United is an organization that supports the resumption of executions in California.

"To see that something inconsequential has delayed justice...it’s just inherently unfair," said Ashford.

Some Questions for Us -- From Jack.

Amber Wolleson, MD, reviews "You Don't Know Jack" for Pallimed and asks the right questions, to which I add some of my own:

He pleads a sympathetic case for his cause. The terms he uses are ones that we would be familiar with: death with dignity, quality of life, end suffering. He speaks about why must someone make the decision to have their feeding tube removed and die slowly when we could just end things quickly, humanely. Who are we as doctors to make someone go through that when we have the ability to spare them?

Why is it so easy to paint Kevorkian as a buffoon, a lunatic, and a murderer?

One statement I found interesting: "terminally ill is not a definable term". I would love to hear what everyone thinks of that.

The importance of the question is undeniable. Death with Dignity laws rely on the definition. Yet we work hard to believe in miracles -- or at least miraculous recoveries -- when we personally face loss. Is this not the area where the unquantifiable variables of medicine and the unknowable aspects of the human body are most profound?

I wondered when I started watching the film how the story would be slanted. It was clearly pro Dr. Kevorkian. I was left wishing for more balanced view of the issues. I felt those against what he had done were vilified and painted as overly religious. (I know very nonreligious people who are against assisted suicide.) I have always seen this as a very complex issue. To just get one side does not do it justice. I was left feeling a bit like the media was trying to manipulate my views rather than just trying to entertain me or even educate me. I would like to see a palliative care perspective. Is death all we have to offer?

What fear and bias against death -- the existence of which often impedes a good death -- causes us to ask that question with such humility? Is death all? When it comes it is everything. For everyone involved.

One line in the movie describes Dr. Kevorkian as "the last doctor you'll ever need". My thought was, does that describe me too?

And if it does, is there a problem with that?