Futile Care, Examined.

From an AP article by Marilynn Marchione:

Doctors can't predict how soon a patient will die, but they usually know when an illness has become incurable. Even then, many of them practice "exhaustion medicine" — treating until there are no more options left to try, said Dr. Martha Twaddle, chief medical officer of Midwest Palliative & Hospice Care Center in suburban Chicago.

A stunning number of cancer patients get aggressive care in the last days of their lives, she noted. One large study of Medicare records found that nearly 12 percent of cancer patients who died in 1999 received chemo in the last two weeks of life, up from nearly 10 percent in 1993.

Guidelines from an alliance of leading cancer centers say patients whose cancer has spread should stop getting anti-cancer medicine if sequential attempts with three different drugs fail to shrink their tumors. Yet according to IntrinsiQ, a cancer data analysis company, almost 20 percent of patients with colorectal cancer that has spread are on at least their fourth chemotherapy drug. The same goes for roughly 12 percent of patients with metastatic breast cancer, and for 12 percent of those with lung cancer. The analysis is based on more than 60,000 cancer patients.

Often, overtreating fatal illnesses happens because patients don't want to give up.

Here's the clip Thaddeus Pope pulls out at his blog:

Americans increasingly spend more time in hospitals in their final days, trying last-ditch treatments that often buy only weeks of time and racking up bills that have made medical care a leading cause of bankruptcies.

More than 80 percent of people who die in the U.S. have a long, progressive illness such as cancer, heart failure or Alzheimer's.

More than 80 percent of them say they want to avoid hospitalization and intensive care when they are dying, according to the Dartmouth Atlas Project, which tracks health-care trends.

Yet that's not what is happening:

• The average time spent in hospice and palliative care, which stresses comfort and quality of life once an illness is incurable, is falling because people are starting it too late. In 2008, one-third of people who received hospice care had it for a week or less, says the National Hospice and Palliative Care Organization.

• Hospitalizations during the last six months of life are rising: from 1,302 per 1,000 Medicare recipients in 1996 to 1,441 in 2005, Dartmouth reports. Treating chronic illness in the last two years of life gobbles up nearly one-third of all Medicare dollars.

"People are actually now sicker as they die," and some find that treatments become a greater burden than the illness was, said Dr. Ira Byock, director of palliative care at Dartmouth-Hitchcock Medical Center. "There are worse things than having someone you love die," he said.

See full article from DailyFinance:http://srph.it/bi7rzf

Patients' Rights for the Disabled.

More support for my advocacy for a Patients' Bill of Rights: a new report via BBC that polls doctors and nurses and finds that the mentally disabled receive compromised treatment.

Mencap's research - conducted by ICM among more than 1,000 doctors and nurses within the past month - also revealed 45% of doctors and a third of nurses had witnessed a patient with a learning disability being neglected or being denied their dignity.

Four out of 10 doctors and a third of nurses surveyed thought that people with learning disabilities were discriminated against in the NHS.

Despite decades of effort, the US still does not have a Patients' Bill of Rights, largely because medical associations (like the AMA), "pro-life" (Catholic and evangelical) organizations and the state (federal and state legislative systems) have all been reticent to cede control of medical care (or suffering!) to the patient.

Watch women's rights, elders' rights, LGBT rights, disability rights and medical marijuana activists and you'll find a diverse but uniquely talented group of advocates that, if allied, could challenge the existing discrimination inherent in our current health care delivery system.

Patholysis: Destroying Suffering.

So with all the terminology struggle that surrounds the "culture war" issues of abortion and assisted suicide, Thaddeus Pope makes us aware of Kevorkian's preferred term for what he did for more than 130 patients and ultimately went to jail for. Patholysis. The destruction of suffering. The term's been around for a while, notes Pope, but certainly hasn't made it into common language, even among those of us that watch end of life issues. Why?

Suffering has value to much of society. And I think this is the heart of the culture wars. Who suffers. A rape victim suffers a pregnancy. A teen female pays for having sex before marriage. A dying patient dies in pain. A mother of three who is abused by her husband suffers for the sake of her marriage and to keep her three children from being fatherless. Suffering is redeeming and reminds us of the unfairness of life, of the roles that we play in society, of God's awesome power, of Christ's pain on the cross.

A frank discussion of who should suffer - if anyone - and why would change the way we look at "culture war" issues. For this reason alone, Kevorkian's term has validity.

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.

The Examined End of Life.

Washington Post's Perri Klass (NYU Professor of journalism and pediatrics) reviews two new books that examine the dying process:

David J. Casaretts, "Last Acts: Discovering Possibility and Opportunity at the End of Life"

David Biro, "The Language of Pain: Finding Words, Compassion, and Relief"

A clip from the review:

The stories in "Last Acts" are unexpected and often quirky. Casarett's taxonomy includes Lacy, who was desperate to write a novel and leave it as her legacy, and Ladislaw, who wanted only to enroll in a clinical trial so his illness could be useful. And there is Jerry, a hospital employee "widely known for a combination of laziness and boorish behavior that made him widely feared and universally hated," whose refusal to apologize, even when seriously ill, prompts an examination of why the dying may or may not seek to make amends.

At times, the team of hospice experts are shocked at what seems selfish or irresponsible or unappealing behavior by the patients. But in fact, this is a big part of Casarett's point: that our collective sense of the "good" death can prevent us from seeing the individual realities of people's lives. It's a lesson he learns as a doctor, over and over, delineating the stubbornly individual imperatives that drive people who know they are close to death.

Biro, on the other hand, sees a unifying experience in the complexity of pain. In his erudite and ambitious book, he writes about the ways that artists, poets and novelists have described pain; he considers physical pain and psychological pain and argues that the isolation that comes with pain, especially when it cannot be described, contributes to the agony. He invokes philosophical reflections on pain by Elaine Scarry and Susan Sontag, along with personal accounts by writers ranging from Fanny Burney, who underwent surgery for breast cancer in the days before anesthesia, to Virginia Woolf and William Styron on illness and depression, to James Joyce describing Stephen Dedalus's ear infection to fictional characters suffering and dying beside Mount Kilimanjaro (Hemingway) or in the wilds of the far north (Jack London). "The Language of Pain" investigates not one single vocabulary but a complex syntax of suffering.

Klass closes the review with this:

Both books draw strength from this, from the sense that these are real, everyday situations that nevertheless require responses outside the traditional pharmacopeia. Both these books resonate not only with the common certainties of pain and death but also with the infinite individuality of human life and human voice.