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.

Commonweal Magazine on Baxter v. Montana.

The latest issue of Commonweal features an article by Cathleen Kaveny on what she calls "the other pro-life issue," assisted suicide. Citing the oversight of the New Year's Eve decision on Baxter v. Montana - which states that the state constitution does not prevent assisted suicide - as a result not only of the holiday and the health care debate but an assumption that the decision is not as bad as "pro-life" advocates had feared it would be. She uses the rest of the article - and the usual "judicial activism" complaints - to explain why it is:

But like most states, Montana treats the consent of the victim as a defense to some crimes—unless doing so violates public policy as reflected in state law. Thus the question the Montana Supreme Court set itself in Baxter was whether the physician’s assistance in a patient’s suicide violated the state’s public policy. It answered no, for two reasons, both of which are highly flawed.

First, the majority recognized that in Montana (as elsewhere) public policy does not allow the victim to give legally valid consent to crimes destructive of the person, such as assault. The majority attempted to distinguish this situation from PAS by saying that the public-policy exception applied centrally to “violent, public altercations [that] breach public peace and endanger others in the vicin- ity.” In contrast, it argued, death by PAS is “peaceful and private.”

This line of reasoning fundamentally misconstrues what counts as “private.” Our legal tradition has always recognized that when one member of the commu- nity seriously injures or takes the life of another, it is always an issue of public concern—no matter where it might take place or how serene the action itself might appear. The opinion’s requirement that the consensual attack be “private” and “peaceful” doesn’t hold up under examination. An assault consisting of a consensual strangling in a hotel room won’t spark a riot, nor will the consen- sual smothering of one sleeping spouse by the other. But these are still matters of public concern.

Second, the majority opinion points to Montana law as requiring doctors to withdraw life-sustaining treatment at the request of the patient or surrogate decision-maker. It asks how PAS can be against public policy when withdrawal of treatment isn’t.

There is a significant distinction be- tween a doctor’s respecting the wishes of a patient or surrogate to withhold or withdraw treatment, on the one hand, and assisted suicide and euthanasia on the other, as the U.S. Supreme Court has recognized. Doctors cannot force compe- tent patients to receive treatment they don’t want, no matter what the reason. But that is a far cry from saying they can help patients kill themselves with legal impunity.

Kaveny's conclusion? That "pro-lifers" should be worried. Because the decision now puts the onus to make assisted suicide illegal on the legislature, she fears that a public unwilling to vote for legalized AS might also be unwilling to make it a crime, as any bill would require. She claims that citizens may want to keep the possibility around "just in case." And she tells us that the decision is portable because the same construct of laws in other state constitutions like Montana's could allow aid in dying activists to make the same case elsewhere.

She's right. It wasn't as bad a decision as it could have been. Yet, the "pro-life" machine is incredibly powerful. The types of grassroots work, aided and abetted by powerful Legal Right and Medical Right organizations, has proven effective with initiatives like Proposition 8, for instance.

But I also find the bit in Kaveny's article about privacy to be interesting. Of course Roe v. Wade was decided on the grounds of privacy: that a woman had a right in consultation with her doctor to make the decision about her reproductive future in private. Kaveny then pulls out all the typical "pro-life" arguments against assisted suicide like coercion and financial concerns to scare us into thinking that assisted suicide is not a right, appealing to the state as keeper of laws surrounding murder and other life-ending crimes.

She makes no note of the fact that those who request aid in dying must self-administer the lethal drugs, instead it seems, arguing that doctors who abide by their patients wishes by prescribing the drugs should be liable for prosecution - and that giving such a prescription is very different from those doctors consenting with a patient's wish to not receive artificial treatments or to be removed from such treatments.

There is a firestorm coming to Montana as "pro-life" groups work to pressure state legislators to introduce bills that will render assisted suicide illegal. Abortion may be the primary "pro-life" issue but the battle to prevent legalization of aid in dying will soon focus resources and emotions on the other issue on the platform.

Massachusetts and the Tactics of "Pro-Life" Groups.

Marie Sturgis of Massachusetts for Life talks to super-conservative LifeNews about the new bill being discussed in that state that would make Massachusetts the fourth state in the U.S. to legalize aid in dying (also known as, tellingly by particular constituents, assisted suicide, "euthanasia," or Death with Dignity, the latter the name of the bills in Oregon and Washington).

There are a couple of things in this clip from the article that are worth noticing because they represent the "pro-life" attack on aid in dying the world over:

1. The unfounded claim that aid in dying is a "systematic devaluation of human life." Why allowing a patient who is determined to die (by two doctors) within the next six months and found to be mentally sound the right to die as they wish devalues life is unsubstantiated by any statistics - particularly those facts and statistics coming out of Oregon where aid in dying has been legal since 1998. What is unanswered by these claims is the question of how? The claim sounds true enough when unexamined: "killing" is never right or moral or just. And yet the absolutism fails to take in special situations and and personal choice.

2. Aid in dying "brings on sadness and sorrow." No studies have ever shown that the family members of those who choose aid in dying suffering more than those who die what "pro-life" groups call a "natural death" (largely a misnomer considered how we primarily die of fatal diseases in the current era of modern medicine, hooked up to machines, in a medical facility). Nor are there statistics that show the dying patient suffers more: in fact, the option of aid in dying often gives dying patients a calm that allows them to approach the end of their lives with peace.

The only exception to this is suicide by violent, undocumented, unregulated measures, often perpetrated by a suffering person due to mental instability or the feeling of lack of choices. Aid in dying, in these ways (mental stability, when all medical options are exhausted, under the guidance of a doctor) is not considered suicide legally. Patients' who select it are already sentenced to death by their terminal disease. Neither are they "giving up on life." They have tried all the known medical options to survive.

3. The way that William Stearn's comments regarding the need for strict regulations are twisted below betrays the right's inability to enter into the necessary nuance of the discussion regarding end of life care. For decades, they have (successfully) portrayed - not only to themselves but to the uneducated, inexperienced public - that any challenge to the state, the church or the medical industry about how we die is immoral and nothing less than "unsavory," "culture of death" factions "preying" on "the vulnerable." The whole of the Right's argument is based on the "immoral" desire to "kill" by aid in dying advocates, yet this argument does not hold up when you examine the desire for the latter to strictly regulate the practice - to the benefit of patients' rights.

To enforce this inaccurate view, the Right has cultivated disability activist supporters. More on use of "vulnerability of the disabled" will come from me as time goes on.

“Once we cross the line and we enter into the realm of the assisted suicide, we all become vulnerable,” Sturgis said. “It begins the systematic devaluation of human life.”

“No society should ever approve to take their own lives, whether it is using a doctor to help them or doing it themselves,” said Sturgis. “This is not death with dignity – it’s a situation that brings on sadness and sorrow.”

Rep. Louis Kafka, a Democrat, is the sponsor of H 1468 would allow patients medically determined to have less than six months to live to request that their doctor prescribe drugs that would kill them.

But even one supporter of the proposal, William Stearns, who said he lost his mother, father and sister to terminal illnesses, said some terminal patients are not able to provide proper consent for an assisted suicide.

He also worried that patients who receive the lethal drugs could accidentally leave them someplace where children or other people could get access to them.

Eileen Lipkind of Stoughton testified for the bill and said her husband, Al Lipkin, asked Kafka to file the bill before he died of stomach cancer.

But disabled people opposed the measure during the Judiciary Committee hearing, including Denise Karuth of Florence -- who is wheelchair bound.

“People ask me, ‘Why would a disability activist be opposed to this?’ ” said Karuth, according to the Milford Daily News. “The movement is based on the fear of loss of control.”

The newspaper said Karuth believes "such a law would make people with disabilities feel like they should die if they couldn't pay their health insurance or were suffering from abuses."

"Rationing," "Death Panels," And Other "Pro-Life" Criticisms of Health Care Make a Come Back.

As the health care bill begins to again show sign of life, "pro-life" and anti-reform forces are again raising unfounded concerns about "government-funded abortion," "rationing," "death panels," and "conscience clauses."

Americans United for Life, a Christian group (part of what I call the Legal Right, a collection of "pro-life" "legal" organizations that work to pass religious laws regarding patients' rights) has reposted it's claims against the health care bill.

First, before I go into my debunking of those claims, let me say that I have no great love for this bill as it exists in its many forms. While it may constitute gains for millions of uninsured, it does little to advance the cause for meaningful health care reform unless great changes are made to it. Our health care delivery system, as it exists, is badly broken. This bill will only work as a band-aid on the larger structural problems; it does little to address necessary systemic reform. And it goes a long way to create challenges to that impending reform (changes will have to be made as the system continues to bankrupt us) in the future. Most notably, it damages the cause for meaningful reform by mollifying those who accept that the system is broken but think that government is appropriately addressing the crisis. And it complicates women's access to reproductive rights by compromising women's health needs for the sake of passage. Any support I give this bill is predicated on the un-guaranteed hope that it is a step in the right direction, one that can be expanded on in the very near future.

But back to Americans United for Life. Their claims and my refutations:

Further, the White House proposal dramatically increases funding – by 11 billion dollars – for “community health centers” which will include Planned Parenthood abortion centers. Because the proposal lacks a blanket prohibition on the use of federal funds for abortions, these new funds could be used to directly pay for abortions.

This is a response to Bernie Sanders (Vermont) amendment to the bill that, as Katrina Vanden Heuven explained at The Nation in the second week of December, when it was added:

Without fanfare, the good Senator from Vermont, Bernie Sanders, has continued to work behind the scenes to champion community health centers--something he has done for years (also here). These non-profit, community-based facilities provide primary healthcare, dental care, mental health services, and low-cost prescription drugs on a sliding scale. As amendments were added in recent days to win over the Liebermans and Nelsons of the "greatest [undemocratic]deliberative body" in the world, Sanders made sure that a $10 billion increase in funding for the health centers was included.

"This is not gonna solve all the problems of the world," Senator Sanders told me yesterday. "But expanding access to high quality primary health care, and low-cost prescription drugs, and mental health counseling, and dental care--which is a big issue--this is a very significant step forward. If you walk into a health clinic and you have no insurance at all they will treat you on a sliding scale basis. So, that's affordable healthcare."

AUL's opposition to this sensical amendment is that some of those community centers could be Planned Parenthood Centers, which provide, yes, abortion services, but also other women's reproductive services like birth control, pap smears, exams, treatment for STDs, etc. Laws already exist that prevent Planned Parenthood from using federal funds for abortion services. In other words, AUL is protesting more federal money from being used at PP Centers because in those same centers women are paying for their own abortions. Forget the other needs of women that have been marginalized by our current laws and health care system. The objective is to starve PP out of helping women at all, simply because they perform a legal service (abortion) in their clinics that AUL and others have religious objections to.

I would be very surprised to hear that the Sanders amendment rescinds that segregation of funds at PP centers, but even if it does, "no federal funding for abortion" is a misused and discriminatory term. The Hyde amendment, passed after the legalization of abortion under Roe v. Wade in 1973, only restricts use of Medicaid funds for abortion - not all federal funds. Even as misunderstood and misrepresented by "pro-life" groups, Hyde is basically a discriminatory law that preys on the poorest, most disadvantaged women in our society. If you can pay for an abortion yourself, the bill allows, go ahead. If you can't, you're forced into pregnancy.

First, the amendment provides inadequate conscience protection, because it does not prohibit any government entity or program (federal, state, or local) from discriminating against health care providers that do not want to participate in abortions.

While the current health care bill doesn't include provider refusal laws (so-called "conscience clauses"), other laws at the state and federal level already protect not only doctors and other providers but also institutions (like the 624 Catholic hospitals in the country) from providing abortion (or as with Coats, from teaching abortion at medical schools!) In other words, a web of "conscience" laws allows every denominational health care institution, every provider, doctor, or nurse, from denying you a legal, medically-sound service. And this can be done without informed consent (telling the patient what services are available and allowing the patient to make their decisions according to their own conscience) and without meaning referrals (telling a patient where to get the services they need). The AUL wants to keep the disastrous and discriminatory Bush "conscience clause" in place, the one the Bush administration enacted only weeks before leaving office, that allows virtually anyone in the medical research (lab workers) or delivery network (pharmacists) to deny patients' their right of informed health care decisions and access - without any provision for the patient at all.

Second, the amendment fails to address our concerns that under the Mikulski amendment (already accepted in the underlying bill), the Health Resources and services Administration (HRSA) has the power to require private insurance plans to include abortion coverage under the guise of “preventive care.”

Private health insurance policies already provide abortion services. About 85% of them. Preventing those policies from such coverage when included in the federally subsidized "networks" is a further extension of Hyde's original intent and again applies denominational health care discrimination to a pluralistic society. Restricting such coverage would further restrict access to legal, medically-sound service simply because a segment of society doesn't believe in that service. Poor, minority, or rural-living women would be most hurt by it.

Third, the amendment allows insurance plans that cover abortions to receive government subsidies, which is a radical departure from existing law (which is not allowed under the Hyde Amendment and the Federal Employees Health Benefits Program).

It's not radical, as I explained above. And the Weldon amendment, which in 2005 eliminated coverage of abortion in the health care plans for the Labor, Health and Human Services and Education departments of the U.S. government was itself a radical departure from the Establishment clause that should protect society from government endorsement of religious ideology. To be clear, Hyde and Weldon are both amendments that are renewed each year with the budget for their programs; but "pro-life" groups have made such a fuss about them that, as their language alters annually, they have become more restrictive and the question of their removal has become politically challenging. That doesn't mean that they represent good, non-discriminatory medicine. Again, claims that these laws currently prevent any "federal funding for abortion" are grossly exaggerated. There's no "radical departure" here as AUL claims.

Fourth, while the amendment allows states to “opt out” of allowing private plans that include abortion coverage to participate in their exchanges, this “opt out” provision makes abortion coverage normative. In other words, states will have to act to prevent subsidies from going to plans that cover abortions in their state, turning on its head the traditional federal approach to abortion.

Uh, abortion coverage is normative in the private sector. Though conservative groups largely oppose movement from health care coverage from the private sector to the federal government, they're going to fight tooth and nail to make certain that women's access to services they oppose (abortion, sterilization tubal ligation, condom access, fertility services, STD counseling) are as restricted as possible. Egalitarian health care access, they say is a false concept; health care is a commodity, you get what you pay for.

This new state "opt out" simply gives state legislatures yet another tool to impose denominational health care on a pluralistic society - with one quick action. And as to the dramatic defense of the "traditional federal approach" to abortion, Hyde and Weldon are discrimination, plain and simple. Other forms of discrimination could be - and have been - called "traditional." (See pending court case in California regarding Prop 8 where "tradition" is used to discriminate against gays.)

Fifth, the amendment fails to ensure federal funds will not go to assisted suicide and fails to address concerns that Comparative Effectiveness Research will lead to rationing of essential medical care.

Despite the relatively known aspects of the controversies surrounding the health care bill and women's rights, this last point by AUL is perhaps the most damaging. Their effort (abetted by the medical industry) to include elders in their coalition against health care reform (and this bill particularly) have proven that these groups will prey on society's and elders' fears of death without scruple.

In our current medical system, patients are pushed into ineffective, aggressive, futile care at the end of life by a culture that has turned hospice and palliative care into giving up on life. As Tim Cousounis writes:

Misconceptions about hospice and palliative care have abounded well before the latest efforts to refrom the health care system. How else to explain the persistent and continuing reticence to refer to, and accept hospice services, in most US communities. What's different today is that the skeptics of hospice and palliative medicine are more vitriolic than their predecessors, and their talking points (arguments) are more vivid - "death panels, socialized medicine".

Palliative care, making terminal patients comfortable and relieving their pain in the last months of life, is twisted maliciously into "rationing." Elders are fed unfounded fears of doctors and a preying government that want to kill them, infantilized by a paternalistic church and the medical industry into patients who are unable to make their own decisions. Seniors are uninformed about advance directives, living wills, state laws that could protect them, their options for end of life care. Doctors fail to discuss terminal diagnoses because they don't like doing it or because they aren't paid to do it. Seniors, who say they would like to die at home (80%) end up dying in medical facilities (75%). The government is drained by death-prolonging care in their last months (2/3rds of Medicare goes to the last two months of life). Families are bankrupted, emotionally and physically drained by the suffering inflicted through unnecessary services. And still, elder and terminal patients have no choice in how they die.

As to the egregious funding of assisted suicide AUL claims the bill will facilitate: Death with Dignity is legal in two states: Oregon and Washington. On New Years Eve, a third state, Montana, had their Supreme Court rule that the state constitution does not prohibit aid in dying. Laws already exist that prevent federal funds from being used to promote these services (and aid in dying advocates from using federal funds to promote it). This additional fear, compounded by claims of "rationing" and "death panels" works well for health care reform opponents but has little basis in fact. The costs of Death with Dignity are minimal. Those who use it (some few hundred in Oregon since 1998) tend to be wealthy, educated, and white. The AUL's concerns that federal funds will pay for Death with Dignity are grossly exaggerated.

Jill Stanek and Not Dead Yet Shake Their Fingers At Me, I Respond.

I don't take the same glory from having my "opponents" shout me down that Jill Stanek does - don't we have too many social issues to solve to fan distracting flames? - but I am intrigued to find that two prominent "pro-life" voices have recently maligned me for as benign and obvious a point as:

Culture wars focus public attention on one prominent, contentious, emotional issue (like assisted suicide or abortion) to the detriment of other very important health issues like women's health care and elder care. This is the gist of an article I wrote at AlterNet this week. You can read it here.

Yesterday, Stanek herself took the time to blog her poke at me:

Pro-abort Ann Neumann at Alternet is tying the fight to legalize euthanasia and assisted suicide in the UK to the fight to advance abortion rights in the US. Of course. The common denominator: Death, death, death.

My God is My Credential.

The common denominator is, of course, not "death, death, death" but the highly publicized efforts of folks like Stanek to focus not only on diminishing and discrediting women's rights but also those of elders. Pro-life groups have for the past few years worked hard to raise "euthanasia" on their platform. Terri Schiavo's brother, Bobby Schindler, spoke at the "pro-life" march a few weeks ago. "Right to life" groups are supporting elder rights-infringing legislation all over the country. The Catholic Church and Fundamentalists jointly have gone after women's and elder's health care autonomy. Stanek's own site regularly attacks end of life care choice. That the "pro-life" movement is working to determine the rights of the vulnerable and dying as their own domain is no secret, certainly not one that I'm exposing.

That anyone who believes in women's rights or elders' rights is pro-death is ludicrous, a line of irrational thinking that requires precisely the closed arguments that I say culture wars require. But that doesn't stop "pro-life" groups from trying to paint as pure evil those who don't abide by their fundamentalist attempts to impose denominational health care on the rest of the country. They've framed the debate for so long that they've begun to sound silly if you step back and look with any shred of critical thought at the issues.

That a woman loses her rights (to the state, or to the fetus, or, well, to Jill Stanek) when she becomes pregnant is religious idealization of a potentiality - a future human being. It is the same kind of religious ideology that is behind the "personhood" bills across the country that work to further limit women's access to medically-sound, legal health care. And the same imposition that allows these groups to damage the rights of patients at the end of their life. You know, "cradle to grave," "whole cloth," "sanctity of life" stuff that gives the self-righteous license to meddle in your health care decisions.

I am far from pure evil; I just happen to think that women and elders, not Jill Stanek, should make their own health care decisions. But Stanek's easy to write off as absurd and fanatical. Women's rights advocates and rational Americans have been doing it for years. But luck with those "credentials" Jill.

Don't Go Near Disability Rights.

The comment from yesterday that caught my interest the most came from the "anti-euthanasia" disability group with the catchiest name ever, Not Dead Yet. They write at their site:

Anyway, if you're here and you're reading this - it's obvious who she left out. Disability advocates and activists - in the US and the UK - oppose legalization of euthanasia and assisted suicide. The "practical" issues she and Beresford refer to are exactly the economic, social and support factors that disability advocates constantly bring up as being central to any discussion of assisted suicide and euthanasia.

And Neumann already knows this - or she should. She found her way to Bill Peace's Bad Cripple blog last month, but shied away from engaging from the critique of her initial attacks on what she termed "slippery slope" arguments on the blog. Not long after that, she announced the news of the Disability and Health Journal Issue on Assisted Suicide on her own blog.

So she knows that disability activists and advocates are out there, talking about the "practical" things. The trouble is, we think legalization of assisted suicide and euthanasia is bad policy.

In other words, she's fostering and promoting the very polarization that she bemoans. Maybe it's because she really isn't sorry that assisted suicide is seen as a "culture wars" issue after all.

Minus the dismissive, snarky tone, NDY is right. I have been aware of their "anti-euthanasia" efforts for some time. And they are absolutely right that I have avoided them, to some extent. But I'll get to the reasons in a minute. As to the "polarization" I am fostering, I suspect they mean my disclusion of disability rights groups from the patients' rights alliance (that doesn't really exist but that I fantasize about often).

Nothing can be farther from the truth. But I hope to have a new article out in a few days that dispel that accusation. I just don't think that NDY represents and speaks for all disabled persons and I know that not all disabled persons are anti-aid in dying (or anti-patients' rights or anti-women's rights). And as to my joy in any assisted suicide culture war? I'll let my readers discern how engaged I am with hospice and palliative care, health care reform, and elders' rights.

As to the provision of rights to one group infringing on the rights of another, that's just bad thinking too. Giving a mentally-sound, terminal patient with less than six the right to a lethal prescription that they may or may not choose to take when death approaches has nothing to do with the disabled community. Again, I sympathize with the fear and vulnerability the disabled community feels toward the medical industry, the state, and society. But conflating two separate issues is just bad advocacy. With a little (understandable) paranoia thrown in.

NDY continues:

She's wrong about that DMZ - we live in it. And neither the pro-euthanasia activists nor the highly political "pro-life" organizations want to acknowledge our place in the debate, because we'd distract from their Culture War. Neither side really sees people with disabilities as having a place in their respective cultures, so it's easy to marginalize us - and both sides do it with abandon and ease.

In some ways, this paragraph is also true. We don't have a patients' bill of rights in the U.S. because the various, disparate groups concerned have failed to build a coalition that is strong enough to rival that of the Religious Right. I have written that were women's rights, elders' rights, gay rights, medical marijuana rights, and disability rights activists to get together, they could resoundingly oppose denominational health care delivery in this country, the religious laws that are daily pushed in our state and federal legislatures, the biased court decisions that limit time and again a patients' rights.

However, Not Dead Yet isn't working for patients' rights, though the try to claim that mantle. They're working to prevent others from making their own health care decisions at the end of life. Yet they try to present themselves as free of political motivations. Incredibly disingenuous.

Founded in the 90's after Jack Kevorkian was acquitted, the group has worked to support the Schindler family in their fight to keep Terri Schiavo on artificial nutrition and hydration and to oppose aid in dying legislation everywhere.

Their argument can be summed up thusly: assisted suicide (or "euthanasia"), when legalized, forces already-marginalized people with disabilities to be coerced into ending their lives prematurely. By matter of their inherent vulnerability, the disabled are the first in society to be offered up by the state, the medical profession or society as not worthy of full protection. Making aid in dying legal devalues the disabled in society and jeopardizes their rights.

While also an argument dispelled with fact and statistics, it is never an easy position for a liberal rights proponent like myself to go against "the disabled." And to be perfectly clear, my position on patients's rights in no way infringes on the rights of the disabled. In any way.

Because of the way Not Dead Yet and other "disability rights" groups have positioned themselves, if you disagree with them by, say, supporting legalized aid in dying (as legislated as Death with Dignity in Oregon and Washing, like I do), you're out to kill the disabled. It's the same "with us or against us" stuff that pushes politicians into bad legislation and media commenters into squirming discomfort. Come out against a position taken by a disability rights group? No way, no thank you. To explain one's position against an "anti-euthanasia" disability group takes more than a glib sound-bite. And who has time for nuance in politics these days?

Rhetorically, Not Dead Yet and other such "anti-euthanasia" groups have sprung their argument like a trap. Because they are the most vulnerable, they've taken up the mantle for speaking for us all. And because all of us will be disabled at some point in life, either from frailty in old age or other health situations that impair what we consider our current "normal" functionality, we can anticipate oncoming disability. But we can't know what it's going to be like. I accept and acknowledge that as much as I do the fact that as a white woman I don't know what racial discrimination feels like. But that can't stop me from working to abolish racism.

I too accept that disabled persons have fear of the medical profession and of society's disdain for their physical and mental challenges. And I resoundingly admit that these fears have historical and contemporary relevancy. But I refuse to accept that my advocacy for patients' rights and end of life choice in any way diminishes the rights of the disabled.

So yes. Not Dead Yet is right that I don't often pursue disability rights issues. I write about end of life care and religion. But as I continue to press for a patients' rights coalition that will push back draconian and discriminatory care, I will have to better articulate disability rights activists into this alliance. I just don't think of Not Dead Yet as a disability rights group interested in patients' rights.

Finally, Legacy Media Picks Up On New Catholic Directive.

While the US Conference of Catholic Bishops changed their Ethical and Religious Directives in November to now consider artificial nutrition and hydration "obligatory" care, few major media outlets have picked up the story. Yesterday, the Chicago Tribune finally ran a long article covering the issue.

They do the usual two-sides-to-every-story bit, primarily citing Catholic "experts" but slip in a quote from Barbara Coombs Lee of Compassion & Choices. My concerns with the story are many, including: the down-play of who ultimately gets to make decisions (the good-intentioned doctors at your friendly local Catholic hospital); little is made of why Catholic hospitals are allowed to make these decisions for patients; and the writer make no mention of how large the Catholic health care system is in the US - second only to Veterans' Affairs and serving 1 in 5 patients annually.

The comments from readers are resoundingly opposed to this imposition. We can only hope that this article and others like it will begin to spread. The more light shed on this draconian, paternalistic, authoritative new directive the better. And the more people aware of the Catholic Church's heavy grasp of health care delivery in this country - via provider refusal laws - the better a chance that elders and the public at large will fight it.

Here's a clip on PVS patients:

People in a persistent vegetative state, the bishops say, must be given food and water indefinitely by natural or artificial means as long as they are otherwise healthy. The new directive, which is more definitive than previous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia.

Catholic medical institutions — including 46 hospitals and 49 nursing homes in Illinois — are bound to honor the bishops' directive, issued late last year, as they do church teachings on abortion and birth control. Officials are weighing how to interpret the guideline in various circumstances.

What happens, for example, if a patient's advance directive, which expresses that individual's end-of-life wishes, conflicts with a Catholic medical center's religious obligations?

Gaetjens, 65, said she did not know of the bishops' position until recently and finds it difficult to accept.

"It seems very authoritarian," said the Evanston resident. "I believe people's autonomy to make decisions about their own health care should be respected."

The guideline addresses the cases of people like Terri Schiavo, a Catholic woman who lived in a persistent vegetative state for 15 years, without consciousness of her surroundings. In a case that inspired a national uproar, Schiavo died five years ago, after her husband won a court battle to have her feeding tube removed, over the objections of her parents.

The directive's goal is to respect human life, but some bioethicists are skeptical.

"I think many (people) will have difficulty understanding how prolonging the life of someone in a persistent or permanent vegetative state respects the patient's dignity," said Dr. Joel Frader, head of academic pediatrics at Children's Memorial Hospital in Chicago and professor of medical humanities atNorthwestern University's Feinberg School of Medicine.

On the various interpretations of the new directive:

There are several important exceptions. For one, if a person is actively dying of an underlying medical condition, such as advanced diabetes or cancer, inserting a feeding tube is not required.

"When a patient is drawing close to death from an underlying progressive and fatal condition, sometimes measures that provide artificial nutrition and hydration become excessively burdensome," said Erica Laethem, a director of clinical ethics at Resurrection Health Care, Chicago's largest Catholic health care system.

Some ethicists are interpreting that exception strictly. The Rev. William Grogan, a key health care adviser to Cardinal Francis George and an ethicist at Provena Health, based in Mokena, said death must be expected in no more than two weeks — about the time it would take someone deprived of food and water to die.

But Joseph Piccione, senior vice president of mission and ethics at OSF Health Care in Peoria, said that if a patient knows she is dying of, say, incurable metastasized ovarian cancer but is several months from death, she can decline to have a feeding tube inserted if she anticipates significant physical or emotional distress from doing so.

Of course the Catholic media have done their job in spreading the over-dramatized Rom Houben story and the new study of PVS patients that suggests few are able to hear and experience brain waves that respond to questions from researchers. Both cases have been repeated and spread in an effort to promote the Church's - and Fundamentalist and Evangelical fellow-travelers' - "pro-life" stance. A commenter brings up Houben's case as justification for the new policy.

And a clip of the questions that follow the article:

Q. What inspired the change?

A. Church leaders oppose assisted suicide and euthanasia and wanted to affirm strongly that the lives of severely disabled people have value.

Q. Does it apply to Catholics only?

A. The guideline affects all patients who seek care at Catholic medical centers, regardless of their religion, said Stan Kedzior, director of mission integration at Alexian Brothers Health System.

Q. Who decides if a feeding tube is "excessively burdensome" and therefore not warranted?

A. That's up to the patient, but it isn't as simple as, "I don't like it and I don't want it." There have to be discernible physical, emotional or financial hardships for the patient, according to Joseph Piccione of OSF Health Care. Those hardships must outweigh the potential benefits.

For the record: the decision is now not up to the patient. That should scare the hell out of us all.