Thursday, June 3, 2010

Where Academic Advancements Come From.

From Nathan Schneider's new article at The Nation on the Templeton Foundation, "God, Science and Philanthropy":

Templeton has a history of seeding fields of study almost from scratch. After the foundation's initiative for research on forgiveness began in 1997, the number of psychology journal articles on the subject went from fewer than fifty per year to more than 100 in 2000 and nearly 250 in 2008. When Templeton first financed Larson's NIHR in the early 1990s, the number of medical schools with courses on religion could be counted on one latex glove. Now, according to Dr. Christina Puchalski of the Templeton-funded George Washington Institute for Spirituality and Health, three-quarters of US medical schools have brought spirituality into their curriculums.

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Gary Coleman, Terri Schiavo and the Definition of Death.

June 2010 Palliative Care Grand Rounds

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.

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How Do We Talk About Quality of Life?

Ken Covinsky at GeriPal reminds us, by highlighting a new study, that a patient's diagnosis does not equal their quality of life. He writes:

Perhaps the most important issue is that if you want to know about a patient's quality of life, the best way to do so may be to just ask the patient to describe their quality of life. It seems that adding this single question to most clinical studies would be very informative. There is little reason for not supplementng the excellent health-related quality of life scales that have been developed with this informative global question.

The distinction between health status and quality of life was very nicely illustrated in a
studypublished in the May issue of the Journal of the American Geriatrics Society. This study, led by Rachel Solomon and Terri Fried followed 185 elders with serious and progressive chronic illness. The patients had one of a number of conditions associated with chronically declining health---either cancer, CHF, or COPD. Patients were asked about their quality of life every 4 months. The findings are instructive:

  • In the interview before death (usually in the last 4 months) 46% of patients rated their quality of life as either good or best possible.
  • Between the pentultimate and final interview between dealth, 21% of patients reported improved quality of life and 39% reported no change. So, not only does quality of life not always decline as health worsens, sometimes it actually improves.
  • Quality of life is strongly innfluenced by many nonmedical factors. For example, one of the strongest predictors of better quality of life was growing closer to one's church
To those of us who volunteer for hospice, we know that "quality of life" often includes far more areas of the patient's life than just their physical health. Finances, environment, food access, communication with family, friends, and medical staff, status of their estate will and possessions, spiritual comfort; all these issues and more can contribute to pain when they are outside the patient's control or expectations.

Cicely Saunders, the founder of the modern hospice program, called this idea of pain, something broader than just physical suffering, "total pain," as noted in an article on hospice history by David Clark:

There can be little doubt that when Cicely Saunders first used the term “total pain” in the early 1960s, she was in the process of bequeathing to medicine and health care a concept of enduring clinical and conceptual interest. In recent years we have gained a clear picture of the early evolution of the notion of total pain (Clark, 1999). Certainly, it emerged from Cicely Saunders’ unique experience as nurse, social worker, and physician—the remarkable multidisciplinary platform from which she launched the hospice movement. It also reflected her willingness to acknowledge the spiritual suffering of the patient and to see this in relation to physical problems. Crucially, total pain was tied to a sense of narrative and biography, emphasizing the importance of listening to the patient’s story and of understanding the experience of suffering in a multifaceted way. This was an approach that saw pain as a key to unlocking other problems and as something requiring multiple interventions for its resolution. Thus was formulated the idea of total pain as incorporating physical, psychological, social, emotional, and spiritual elements (Saunders, 1964).

The problem with the term "quality of life" is that it's become highly politicized in the past few decades, since medical advancements changed the definition of death with the new ability to sustain heart and lung function almost indefinitely. (William Colby has a great discussion of the term, it's many meanings and its importance in his 2006 book, Unplugged: Reclaiming Our Right to Die in America. See pages 126 - 139.) In the cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo, the "quality of life" of these individual women was contested by either medical staff or family members. Without the ability to communicate their medical decisions, these women were left to be "managed" by prevailing forces, in all three cases after a protracted legal battle. Because the standard, "I wouldn't want to live that way," is one that various non-terminal patients hear, particularly those with physical disabilities, the discussion of quality of life became muddied with conversations about patient autonomy, futile care, disability rights, and discrimination.

Religious leaders and "pro-life" groups have worked hard, often with the help of disability rights advocates (see the January 2010 special "assisted suicide" issue of Disability and Health Journal), to present the notion that quality of life is either unimportant when society considers treatment for the dying, or that we humans are unable to judge what only God can. In this way, pain management can then be acceptably addressed by some religious practitioners without moving into the politicized and evolving concept of "quality of life." There are endless theological justifications for refuting the will of a patient or their family when facing pain, including the concept of redemptive suffering (as espoused in Ethical and Religious Directive #61of the US Conference of Catholic Bishops, used to govern 624 hospitals in the US, which states, "Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.") God doesn't give us more than we can handle, therefor if we are in un-relievable pain, we can handle it. Suffering brings us closer to God by helping us to relate to Christ's suffering on the cross. It is through relation to Christ's pain that we most-often achieve salvation. To many of us, this can be a paradoxical concept; yet it undergirds the "mission" of the Catholic Church and "pro-life" activism against abortion, instruction in STD or AIDs prevention, fertility treatment for lesbian women, and removal from artificial nutrition and hydration at the end of life.

But Colby makes a strong case for continued public debate about "quality of life," one that focuses on the actual state of patients, medical procedures, patient informed consent, and various factors beyond but including physical pain. He writes:

The problem with avoiding the topic of quality of life is this: the main issue in the Schiavo case was Terri Schiavo's quality of life. Though not usually cast that way, that's what the whole debate of the case was about. More specifically, the issue is whether a medical intervention can restore function, relieve suffering, and provide sufficient quality of life so that the patient (or person speaking on her behalf) chooses to accept that medical treatment. Indeed...quality of life is what the serious public debate should be about.

Various attempts have been made to define "quality of life" in a meaningful and functional way, namely by presidents' councils on medical ethics. Yet the controversy -- that is the mediated public debate, often devoid of practical considerations -- on quality of life, particularly in such cases as the 30,000 persistent vegetative state patients who are in the US at any given time or surrounding issues of assisted suicide and organ donation, will most likely continue until society's understanding of medical capabilities, futile care, law, and the dying process catch up. I'm hopeful that the advancing assisted suicide movement, the glut of Baby Boomers soon to enter the end of life phase, advocacy for patient autonomy and rights, and our crumbling and inadequate medical system will all contribute to greater public knowledge and discussion of quality of life.

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