Friday, January 8, 2010

Tony Judt: What Does It Mean To Be Human?

The Guardian has a great profile of historian Tony Judt. Here's an excerpt but I recommend you read the whole thing. And don't miss the video:

A few weeks ago the English historian Tony Judt delivered a speech at his home in New York University (NYU). More than 1,000 people turned up, and few left disappointed. What they heard was classic Tony Judt: the lecture, a plea for the positive virtues of social democracy, was as erudite as might be expected from the author of Postwar, his epic portrait of Europe since 1945, and as politically pointed as his controversial writings on the Middle East.

The Judt they saw that night, however, was anything but expected. He rolled on to the stage in an electric wheelchair, a blanket wrapped around his body so that all could be seen was his neck and head, to which a breathing tube was attached like a bit of facial Tupperware. "The last time anyone had seen me in public I'd been bouncing around the stage full of fitness and energy," Judt says. "Now they saw this quadriplegic with plastic on his face."

He was concerned about how his audience would react to the new-look him, and tried hard to make them feel at ease. It worked, and at the end of the speech he received a standing ovation.

It was only afterwards that Judt suffered the intense irritation of being accosted by someone who seemed unaware of the difference between physical and mental incapacity. "I'd just delivered this long lecture completely by memory, no notes, for an hour and 15 minutes. Someone comes up to me and says 'TTTTOOOOOONNNNYYYYY. DOOOOOO YOOUUUUUU REMEEEEMMMMBER MEEEE?'" Judt mimics the person in an exaggerated drawl, as though he were talking to a baby in a buggy. "I thought, 'You stupid bitch! Of course I remember you. I know your name, I know where you teach, I know everything about you!'"

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Rom Houben and the Evolution of Uplift.

Alex Schadenberg of Canada's Euthanasia Prevention Coalition has a great run-down of the evolution of the uplifting but inaccurate story of Rom Houben, the "locked in" patient "discovered" and now talking about the horror of his 23 years alone.

The story resonated for me because a lot of "pro-life" folks jumped on the story as strange vindication for the death of Terri Schiavo who was removed from artificial nutrition and hydration after a years long court battle and media blitz. See, "pro-lifers" said, maybe the persistent vegetative state diagnosis is wrong sometimes. I never bought the parallel and I still don't.

But the Houben story had emotional legs that it marathon-ed across all sorts of media outlets. Those who oppose aid in dying (strange because the DwD laws, in the US at least, only pertain to patients capable of ingesting the medicine on their own and only those with terminal diagnoses) worked the story into justification for their position.

The Terri Schiavo case - and the Rom Houben case - have zilch to do with aid in dying. US law has long determined that families may choose to remove their brain dead loved ones from artificial life support. Or with an advance directive, patients may do so themselves in advance.

But read Schadenberg's summary. I'm glad he has it up; it speaks to EPCs commitment to using the facts, discerning what's best for patients, and not chasing after ideological and emotional stories for political gain. At least today, with this post.

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Disability and Health Journal Special Issue on Assisted Suicide.

I heard this issue of Disability and Health Journal was coming but I have not yet had a chance to read it. On the outset, from a quick scan of the content, I will say there are a number of things that should be kept in mind when reading it:

*The term "disabled" is currently ill-defined as it applies to various groups. As McDermott (see below) uses it, we will all, should we eventually die of old age or disease, be considered disabled at some point. This is a fantastic position for disability rights to espouse - that disability is not just common but normal. But such a definition of disability does not make the case for or against aid in dying. However, when this definition is coupled with state, church or medical opinions of who should make health care decisions for the patient, patients' rights get very murky.

*A profound fear of the medical profession exists among the disabled. As much as the profession is comprised of members of society, society has discriminated long and hard against disabled persons. And our history, including early to mid-20th century euthanasia activism, has erred on the side of discrimination against the disabled. A fear of society's and medical practitioners' intentions regarding the disabled is understandable. But that does not mean that laws regarding end of life care, or specifically, aid in dying are based in rational and provable science.

*The studies here of how Death with Dignity is used in Washington and Oregon, and public opinion in those states, must be understood against the absence of studies regarding how people die in the rest of the country (absent because end of life care outside of Wash and Oregon is not as scrutinized) and how public opinion of DwD or aid in dying is influenced by misinformation, death taboos, and religious ideology. Public opinion does not determine a law as just or humane. Until more is understood by the general public about how people die, how DwD works, and what forces (and their motivations) work against aid in dying, public opinion cannot determine the Constitutional or humane viability of a law. Education is needed.

*US laws must be addressed as they exist. Opponents of aid in dying have a great propensity for conflating Death with Dignity laws with how the legalization of assisted suicide works in other countries or in their "Culture of Death" construct. The argument that DwD laws will lead to killing of the disabled (or other vulnerable members of society) is not based in fact. Though there are collapsed and imperfect parallels in history of the devaluation of life (WWII) doesn't mean that DwD laws will lead to euthanizing the disabled here in the US in the 21st century. (Using the same faulty logic, "pro-life" groups have argued that legalization of DwD laws are the result of Roe v Wade. They call it the slippery slope.)

*The rights of some patients should never be sacrificed for those of others. It's the lesson of the health care bill, sacrificing women's rights for expanded (but still for-profit coverage). It's the lesson of Catholic hospitals serving pluralistic communities according to Catholic doctrine. It's the lesson of our existing failed health care system which has disenfranchised the most needy. Protection of the rights of the disabled should be considered a fellow-traveler issue with protection of a terminal patient's choice to hasten their death. I look forward to the day when the disabled, the elderly, women, gays and all citizens come together under the rubric of patients' rights.

*Fear of coercion is real. Disability activists fear that assisted suicide will send the message to the disabled that their lives are less worthy or valuable. Yet there is a world of difference between a leukemia patient, ten years into their diagnosis, who has exhausted all treatment options and is given only months to live and a paraplegic patient diagnosed with treatable breast cancer. The role of medicine is to inform the patient of all options. The role of the patient and/or their guardian/proxy is to use their own conscience to make the choice. Death with Dignity, the actual laws as written, in no way violate those sacred roles.

I've looked forward to this journal issue for a long time. I can't wait to reading it.

Editor of the
Disability and Health Journal, Suzanne McDermott, writes about the current special issue:

All of the articles published in this special issue emerged during the 2 years the APHA struggled to adopt a policy on assisted suicide. During that time, I personally went from seeing this issue as a personal right to understanding that assisted suicide is at the heart of the disability movement. The broadly used definition of “disability” includes individuals who have limitations in their functional status and/or use assistive devices to maintain function. Almost all people at the end of life can be included in the definition of “disability.” Thus, the practice of assisted suicide results in death for people with disabilities. People with disabilities have been recognized as a health disparity group (included in Healthy People 2010); they experience substantial discrimination in society, and yet they can live extremely high-quality lives. The ADA is civil rights legislation that guarantees equal treatment under the law. From the perspective of the ADA, the assisted suicide debates raise the question: Should we have laws that give physicians the ability to prescribe lethal doses of medicine to people, who are told they have less than 6 months to live, OR should we provide the supports, services, and pain management they need to continue living?

Ethics Forum writes that the reasons disabled persons are vulnerable under laws that allow assisted suicide are:

First, the very existence of legalised assisted suicide threatens disabled people. It will lead to an expectation that the disabled, elderly and infirm should shuffle off their mortal coil a bit early to relieve the burden on their carers. This fear has been ridiculed by supporters, who contend that all they want is choice at the end of life. Dream on, says Diane Coleman, of the lobby group Not Dead Yet. "Proponents of legalized assisted suicide are willing to treat lives ended through abuses of the practice as 'acceptable losses' when balanced against their wish for a pleasant way out and their unwillingness to accept disability, or responsibility for their own suicide. We disagree."

Second, the danger is not mandated euthanasia, as in Nazi Germany. Rather, it is a subtle and widespread expectation that death is better than disability. "If the legalization of assisted suicide continues, I believe the rank and file will some day see nothing wrong with hastening the deaths of many people," writes Dr Carol J. Gill. "They will stand by and do nothing to stop it and will endorse the policies and institutions that advance it-not because they are evil people but because it will no longer be evil in our culture to do so. It will be compassionate, respectful, routine."

Third, several authors argue forcefully that Oregon's Death with Dignity Act, which is the model for assisted suicide in the US, is deeply flawed. After about 15 years, several intractable problems have emerged. The authors claim that there is very little patient control; that statistics are incomplete; that oversight is minimal and secretive; that safeguards are easily circumvented; and that negligent doctors cannot be prosecuted. Allegations that in Oregon and in the neighbouring state of Washington, which has also legalised assisted suicide, the circumstances of deaths are routinely falsified are especially disturbing. In fact, Washington actually requires that doctors falsify the death certificate by listing the terminal disease as the cause of death rather than the lethal dose of barbiturates. ~
Disability and Health Journal, January

Giant ht to JS on my thinking about this.

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Who's Rationing Now, Mayo Clinic?

That and other alarming positioning in the "pro-corporate profits" publication. Like the fact that health care is not a right, implied by support for the Mayo clinic's decision to drop Medicare at one of its facilities. Come on, there's more money to be made from treating the wealthy. Let's continue to ration by class! You can't always assume one's position by their use of terms - the left is as angry these days about the lack of reform in the health care bill as the right - but the WSJ using the derogatory "ObamaCare" in a piece of reporting?

It looks to me as though this may not be a bad development if played right by the administration - not saying I think they're capable of taking any political advantage from opportunities handed to them on a platter.

The medical industry's attempts to undermine the benefits of Medicare won't be popular with the more than 44 million who get their health care through the program, including the 850,000 in Arizona who will not have to switch hospitals and travel greater distances for necessary care. I'm hoping Mayo's denial of Medicare patients will cause increased support for the program - and greater advocacy for more like it, programs that tackle the profit-driven delivery of health care in this country.

There's more money to be made from private plans, claims Mayo. Here's a clip:

Mayo is probably a leading indicator of where other hospitals and doctors are headed. Physicians on average earn 20% to 30% less from Medicare than they do from private patients, and many are dropping out of the program. While about 92% of family physicians participate in Medicare, only about 73% of those are now accepting new patients. In some specialties—neurology, oncology, gynecology—in places like Manhattan and Washington, patients can struggle to find any doctor who'll accept Medicare.

The $500 billion in Medicare cuts planned as part of ObamaCare won't help this trend. The hospital industry agreed earlier this year to chip in $100 billion over the next decade in lower annual payment increases for Medicare. The chief Medicare actuary estimates that up to 20% of hospitals could become unprofitable as a result of the scheme.

The irony is that the Obama Administration has repeatedly praised Mayo as an example of the efficiency and lower cost that will spread everywhere if ObamaCare passes. And it's true that Mayo is a sterling example of the kind of health reform that many economists—notably White House budget chief Peter Orszag—extol.

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Sharlet on Maddow.

The gays are murderers like the Nazis and perpetrators of Rwanda's genocide. The kill the gays bill in Uganda is now the "imprison and counsel the gays" bill. The Family trying to cover up their foreign policy influence and discredit those exposing them. Yup. It's all in there:

Visit for breaking news, world news, and news about the economy

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The Legacy of Mental Health Misdiagnoses.

From ScienceDaily, a story today about the race-based diagnosis of schizophrenia among blacks and its continuing discriminatory legacy:

Race-based misdiagnosis emerged in the context of the civil rights era of the 1960s and 1970s, when activism became equated with mental illness, says Jonathan Metzl, an associate professor of psychiatry and women's studies.

Metzl examined archives of Ionia State Hospital for the Criminally Insane and learned that black men, mainly from Detroit during the civil rights era, were taken there and often misdiagnosed with schizophrenia.

"Some patients became schizophrenic because of changes in their diagnosis rather than their clinical symptoms," said Metzl, a 2008 Guggenheim award recipient.

Events at Ionia, located in a mostly white northern Michigan community, mirrored national conversations that linked the disease with blackness, madness and civil rights, he said. Many black men came to the hospital during the Detroit riots, dramatically increasing the facility's black population.

How the psychiatric profession defined schizophrenia also changed during this period. In the 1920s-1940s, doctors considered the illness as affecting non-violent white individuals (mainly women), but later changed the language to violent, hostile, angry and aggressive as a way to label black men, he added.

"It's an easy thing to say this was racism, but it's a much more complicated story -- that's still playing out in present day," said Metzl, director of U-M's Culture, Health and Medicine Program.

He noted that the criminalization of mental illness and misdiagnosis of schizophrenia meant many black men have been placed in prisons rather than psychiatric hospitals. The Ionia facility, for instance, became a prison in 1977.

Despite increased efforts for cultural competency training, over-diagnosis of schizophrenia in black men has remained.

"Multicultural training is important, but it often does little to address how assumptions about race are structurally embedded into health care delivery systems," said Metzl, whose findings appear in the new book, "The Protest Psychosis: How Schizophrenia Became a Black Disease."

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What is "Traditional Christianity?"

Don't miss Mark Jordan's fantastic article at ReligionDispatches today on the political assumptions made about the "traditional" and "liberal" divide.

I'm as guilty as the next "liberal" of railing against the imposition of "traditional values" in medicine and social services. Jordan gives us the necessary reminder that "traditional values" as proclaimed by the Religious Right (Catholic and Fundamental/Evangelical) are not representative of the whole or even traditional religious teaching. This frame has greatly helped opponents of equality and individual rights. And the media, reticent or unable to report the nuances of religion, have used the frame to perpetuate inaccurate assumptions about religious teaching and adherents.

Of course the Religious Right plays a heavy hand in enforcing the dominance and theological rightness of it's positions. Saying that church theology supports, for instance, gay equality, falls outside the understood, reported, polarized frame. Jordan writes:

You wouldn’t know this reading Steinfels’ description of our recent debates. To be fair, he is hardly alone. Most reporting of religious debates over sexuality, whether in the Times or on the wire services, assumes the same division—or performs the same sleights-of-hand. When self-proclaimed “traditional” voices are quoted against same-sex marriage, they are allowed to claim scriptural evidence, church history, and even the name “Christian.” When other Christian clergy or believers are quoted in support of same-sex marriage, they become “activists” who are allowed only to speak about civil rights or fairness or—sometimes—wispy Christian principles, but not about scripture or church history or faith itself.

I used to think that this was the fault of progressives—that we reverted too often to the bland language of fairness, toleration, or rights. So I tried always to give reporters scriptural and historical arguments. They rarely found their way into print. I wondered whether the forced simplification of religious journalism had a built-in bias for obvious, “literal” readings of scripture. Or whether the need to tell a story—to sell a story—drove reporters back to the familiar plot: venerable belief versus modern liberalism. So I began to experiment with saying very traditional religious things in interviews.

“I support ordaining openly lesbian and gay candidates because that’s where I’m led when I study scripture and pray.”

“My belief in incarnation pushes me toward the blessing of same-sex unions.”

The reaction was mostly an awkward silence. I could hear the typing stop at the other end of the line.

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Marriage Equality Defeated in New Jersey.

Yesterday New Jersey voted to prevent equality for all citizens in marriage:

The Jersey City resident was upset and surprised that the state Senate defeated the Freedom of Religion and Equality in Civil Marriage Actin a 20-14 vote today.

Hecht and Beth Achenbach, her partner of eight years, said they don’t know that they can continue to call New Jersey home with states like Connecticut and Washington D.C. close to passing gay marriage laws.

“It’s not that far to move to get equal rights,” Hecht said. “I basically feel like the state of New Jersey doesn’t need my money then.”

She added, “I should probably go to a state that will appreciate everything I have to offer and will take my tax money and will give back fair and equal rights.”

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The Fight for Patients' Rights.

Why does the US still not have a bill of patients' rights that guarantees equal, affordable access to scientifically-proven, effective medical services?

Because patients' rights advocates fall into a number of devoted, diligent but uncoordinated and underfunded groups:

Disability rights
LGBT rights
Women's reproductive rights
End of life/Elder rights
Minority rights

And because they are fighting resource-rich, organized, powerful opponents which, despite their disparagement of "elitists" or "intellectuals," inhabit and influence the halls of government in an unprecedented way:

The medical industry has strongly fought any patients' rights bill introduced in legislation. Over the past dozen years, more than 5 bills have been defeated. They have spent vast amounts of money to prevent government protection of individual and group rights; they oppose regulation at all levels.

The church, both the Catholic and Fundamentalist/Evangelical Right has spent the years since Roe v. Wade (when they allied around the common goal of imposing "traditional values" on our pluralistic society) building their unified "pro-life" effort. Pro-life means everything the ideological right is against, from women's reproductive services to aid in dying, from marijuana rights to gay equality. These organizations enjoy tax-exempt status, have been brought into government to provide social services, and are not required to register as lobbyists when they work to influence legislation.

The state has refused to look at patients' rights as an Establishment Clause issue, preferring to, when it does protect rights, use the rights to privacy. Even the Supreme Courts rulings on Establishment clause grounds (predominantly in the area of schools and public property) have been unpredictable.

Until opposition to patients' rights by industry and the church are recognized for what they are - unregulated capitalism and discrimination - corporations, medical associations and religious ideology will continue to shape how medicine is delivered.

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