Friday, February 19, 2010

Mixing Images of Civil Rights and The Tea Party.

My friend Steve sent me this video which he decided to make after watching all the reporting on the tea party.

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Decline in Hospice Stays and Duration?

Howard Gleckman of the Urban Institute writes at Seattle's Local Health blog that hospices are seeing fewer patients and shorter stays and suspects it caused by doctors who don't refer patients early enough and misconceptions about hospice care:

Suddenly, many hospices are admitting fewer patients. Others are increasingly caring for people for just days or hours before they die. The result: cash-strapped hospices are cutting back on nurses and aides, and patients are missing out on critical end-of-life care.

It is not clear why it’s happening, but some hospice officials blame both a bad economy and Medicare rules that unintentionally discourage doctors from referring all but those who are about to die.

Even though hospices have been operating in the U.S. for three decades, they remain widely misunderstood. Hospices provide medical care, pain management, spiritual and social care and volunteer support for those nearing the end of their lives. And their patients often live longer than if they were still receiving full-blown medical treatment.

Nearly all hospice care is paid by Medicare, but unlike most providers, hospices are paid a fixed daily rate (on average about $140-a-day for home care patients). If a hospice provides care for less, it keeps the difference. If a patient requires very costly care, the hospice can lose money.

The number of patients served by hospices increased from about 1 million in 2004 to nearly 1.5 million in 2008, while the number of hospices grew from 3,600 to almost 5,000. Most of this explosive growth has been driven by for-profit companies.

But in recent months, hospice officials have seen a downturn. In some states, such as Oklahoma, heavy competition has forced consolidation, and at least 10 hospices have closed in the past year.

Elsewhere, hospice officials blame the bad economy. Patients who have lost jobs–and insurance—may be waiting longer to visit the doctor and consequently are diagnosed with terminal illnesses at a very late stage.

Some hospice executives say the poor economy may also be driving doctors to hold on to patients longer.

Here’s why: Once a patient joins hospice, she’s likely to see her physician far less often. Her doctor can usually order tests and treatments only to keep her comfortable, and not to try to cure her terminal disease.

And while it may still be appropriate for, say, cancer patients to receive costly drugs or even radiation therapy to relieve pain, hospices must pay for these treatments out of their daily Medicare rate.

That inevitably can create tension between the hospice and the physician.

And it may add up to less money for doctors at a time when they are already feeling squeezed. One physician I spoke to strongly rejected this argument, insisting that declining compensation does not slow referrals.

But another—an oncologist who frequently refers to hospice—acknowledged the problem. “There is a financial deterrent,” she says.

At the same time, new Medicare rules may be further discouraging physician referrals. Medicare has begun cracking down on a handful of hospices that are making big profits by taking on chronically ill, but not terminally ill, patients.

While hospice patients are normally expected to have six months or less to live, some hospices have many on their rolls for a year or more.

In one attempt to stop this practice, Medicare now requires doctors to write a brief narrative describing why a patient is appropriate for hospice. Trouble is, says one hospice official, “We’re getting a lot of pushback” from doctors.

In 2008, more than one-third of patients were enrolled in hospice for a week or less, and some organizations are seeing the number of short stays increase, perhaps because these requirements may be making already reluctant doctors even less willing to refer to hospice until their patients are actively dying.

Mark Murray, president of the Center for Hospice and Palliative Care in South Bend, Ind., says that in the past year, eight percent of his referrals died before they could even be admitted, and 20 percent died within 48 hours.

Those last-minute decisions put enormous financial pressure on hospices and make it impossible for patients to get the full benefit of end-of-life care.

These disincentives come on top of a long-standing reluctance on the part of many doctors to even talk about hospice. In a 2009 study, more than half of patients with stage IV lung cancer said their physicians never even raised the option.

I am a huge fan of hospice: My wife is a hospice chaplain and both my father and father-in-law were hospice patients. These organizations are a model for coordinated care that other health care providers would do well to copy.

But doctors need to be persuaded to use hospice. And that may mean changing a payment system that may be discouraging them from using this valuable service.

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AIDS and Aid in Dying.

Newsweek's Sarah Kliff has a new article up that looks at how the AIDS epidemic focused the gay community on end of life and assisted suicide issues (and, one could argue, on the need for same-sex marriage).

The lede of the article is BBC commentator Ray Gosling's recent arrest after admitting on a documentary that years ago he smothered his suffering lover with a pillow, and Gosling's subsequent arrest for questioning. Kliff writes:

Gosling's admission and his ensuing arrest was certainly shocking. But it also confirmed what assisted-suicide experts already knew: legal issues of hastening death have long plagued AIDS patients and their doctors. "Certainly, we know it's a community where this type of bootleg assisted suicide occurred throughout the 1990s," says Ian Dowbiggin, the author of A Concise History of Euthanasia and an expert on the right-to-die movement. "This specific example of assisted suicide, I don't know how common it is, but it is likely more common in this particular community than elsewhere."

Much of it has to do with the nature of the disease, which began to disproportionately affect gay men in the 1980s and early 1990s. AIDS patients were ravaged by tumors, seizures, and paralysis, and doctors had little to offer by way of a cure. Early treatments often merely prolonged this suffering. "People who suffered from AIDS were naturally interested in assisted suicide, whether it was legal or not," says Dowbiggin. As Gosling explained on the BBC of his own partner's disease, "Doctors said, 'There's nothing we can do'; he was in terrible pain." Legally, there was nothing his doctors likely could have done: in the United Kingdom, as in the United States (except for Washington and Oregon), physicians are barred from assisting a patient's suicide.

I just finished reading Dowbiggin's book not too long ago and recommend it for a good overview of the assisted suicide movement (though from the writing I would suppose he's not the most dynamic dinner guest). He opens the book with a look at how AIDS played a role in the re-energizing of the aid in dying movement then combs through ideas and practices of assisted suicide throughout history.

It's a wonder to me that gay rights have shown their most traction in same-sex marriage until I consider that in the early days of the AIDS epidemic, men were dying as their lovers waited outside the hospital, unable to obtain visiting rights, unable to exercise power of attorney, and removed from the legal and medical process by a shaming society.

As we watch the same-sex movement gain ground, it's good to remind ourselves of all the benefits, legal and social, that marriage delivers. And as we watch the movement for patient's rights form alliances, before thought unnecessary or unproductive, it's good to remember who in society is most effected by discriminatory health care delivery and laws.

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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.

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Georgia Bill Seeks to Make Artificial Nutrition and Hydration Obligatory.

Georgia Right to Life and the lawyer who represented Terri Schiavo's family are the primary proponents of a new bill in that state that claims it will "protect citizens" in end of life care, but that would actually limit patient choice at the end of life. The bill seeks to, as the Catholic church did in November, determine artificial nutrition and hydration as "obligatory care."

I haven't seen the language of the bill but judging by the sources, the effort is to prevent medical proxies from removing their loved ones from artificial nutrition and hydration, despite counsel from doctors and living will designation.

Another interesting aspect of this report is the increased encroachment of Right to Life, Catholic, and "pro-life" groups into areas of patients' rights other than reproductive rights. Strategically, it makes sense. These organizations are mobilized, have many resources, and have been allied by their common wish to dictate discriminatory policy to patients.

The same spin that has been used to reduce access to women's health care services is now being applied to seniors' medical rights. I only hope that true patients' rights activists can unite to deter this imposition of doctrinal care on all of society.

ATLANTA, Feb. 18/Christian Newswire/ -- This past week H.B. 1178 "The Patient's Right to Nutrition and Hydration Act" was introduced in the Georgia House by Representative Martin Scott and co-sponsored by Rep. Tim Bearden and Rep. Mark Butler to help provide more protections for Georgian citizens in end of life care.

This legislation seeks to insure that no patient shall be denied food and hydration. It has been brought to the attention of Georgia Right to Life and our legislature that there have been cases where patients have been denied basic food and hydration in order to speed up the dying process.

Mike Griffin, Legislative Director of GRTL noted, "We live in a time where it is illegal to deny a dog or cat food or water, but it is legal to deny a person food and water. We must value every person's life, especially in the final moments of life."

Attorney David Gibbs, counsel for the Schindler family in the Terri Schiavo case, has provided legal counsel on this bill. Mr. Gibbs noted, "Food and water should not be considered 'life support,' in my opinion. If this bill is passed into law, Georgia would recognize that important distinction to protect its citizens."

This bill seeks, among other things, to establish the fact that the feeding tube should be considered ordinary care, not medical care. The bill does allow for exceptions under an advanced directive. Currently in Georgia physicians and administrators can override a patient's wishes in an advanced directive.

"Ultimately, this bill seeks to strengthen patient's rights in Georgia. Under existing law, a doctor can override a patient's desires to have the basic essentials of food and water. No medical establishment should take away the right from a patient or their family the right to make the very private and tough decisions about end of life care," stated Dan Becker, President of Georgia Right to Life.

Georgia Right to Life promotes respect and effective legal protection for all human life from its earliest biological beginning through natural death. GRTL is one of the number of organizations that have adopted Personhood as the most effective pro-life strategy for the 21st century.

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