So Long, Jack.

Jack Kevorkian is dead at the age of 83. News came in yesterday and it's taken me a little while to sum up what, if anything, I have to say about it. The media's dream, the assisted suicide movement's nightmare, Kevorkian cornered the national conversation about death. And it's hard to knock anyone who gets us talking about death. As I often write, we're in a national (and international) health care crisis. The world's population is quickly growing older, subject to medical systems and structures that are woefully unprepared for the increasing needs of this population. Our national economy will shortly be brought to a halt if meaningful health care reform isn't enacted. (No, I don't mean Obamacare. I mean real reform.) And increasingly, elders are not dying the way they want to.

While Kevorkian brought this conversation to prime time -- and everybody has an opinion on Jack Kevorkian -- and while he did it without the horrifying saccharine sweet sentimentality that impedes the meaningfulness of such conversations, he erred by allowing himself to be portrayed as a cantankerous clown. He was too easy to paint as a quack, a cantankerous fanatic obsessed with death. If there's anything I've learned in my modest time writing about death (and religion), it's that tone and sound bites have more impact than facts. In a society that packs death off to nursing homes and hospitals, we desperately can't afford dismiss-able spokesmen who allow media to relegate the conversation to spectacle.

And there's no doubt that Kevorkian became a spectacle. Patients' rights don't mean much when reduced to snuff clips on 60 Minutes. So while I strongly believe in choice at the end of life -- and sympathize strongly with Kevorkian's mission -- and while we've seen three states adopt rational, helpful laws regarding patient's rights at the end of life since Kevorkian's rise to prominence, I don't think that the life and times of Dr. Death Kevorkian has really moved the nation or the assisted suicide movement ahead in the necessary grapple that is our impending health care crisis.

Still, may he rest in peace.

More on Kevorkian's death: From his Royal Oak neighbors. From Janice Van Dyck at HuffPo's Healthy Living. Icky monomaniacal Wesley Smith at National Review. Jeff Gerritt at Detroit Free Press. Tami Abdollah at AP gets it mostly wrong. Another AP story calls Kevorkian "audacious." UK's conservative BioEdge calls Kevorkian a "suicide hero." Christian Post focuses on Kevorkian's dismissal of religion. Religion Dispatches' Susan Henking gets stuck in the nomenclature, picks out how various religions discuss suicide (and cites Durkheim!) and divides the landscapes into two erroneously-named sides, "the right-to-life" and "right-to-death" movements.

Terri Schindler Schiavo Foundation Partners with Care Facility

A press release last week announced that New Beginnings Medical Center in Medford, New York, will be "dedicated to the memory of Terri Schindler Schiavo." The partnership -- and the Terri Schindler Schiavo Life & Hope Network -- signal in the release that this is the first of a new effort to bring medical facilities into greater partnership with opponents of removal from artificial nutrition and hydration.

The work of the Schindler family on behalf of the "congnitively disabled" has until now been in raising awareness and advocating for those families who object to medical institutions and other family members who seek removal of patients from feeding tubes. Their efforts were reinforced by the Catholic Church's change to the Ethical and Religious Directives that govern all 624 Catholic hospitals in the US in November, 2010. The new guidelines state that artificial nutrition and hydration is "comfort care" and not medical treatment, despite the surgical insertion required for feeding tubes, and therefor removal is up to the hospital (subject to direction from the local bishop) and not the patient's advance directive wishes nor the wishes of the family.

By positing that persistent vegetative state patients are vulnerable to a "culture of death" that seeks to kill them off and that the creation of "safe havens" for such patients is necessary, the Network and it's affiliated care facilities are challenging society's understanding of brain death, disability, autonomy, patients' rights, and the definition of life. From the release:

New Beginnings is a state of the art outpatient rehabilitative facility for Veteran's, Traumatic Brain Injury Survivors and other cognitively and physically disabled persons. It is designed to provide rehabilitation, management and recovery services in an exceptional, stimulating and safe environment.

"We are dedicating New Beginnings Community Center in Terri Schindler Schiavo's memory," said Allyson Scerri, New Beginnings Founder and President. "This is our way of honoring Terri's memory, her battle for proper treatment as a cognitively disabled person, and all others who did not have the chance for rehabilitation," she added.

"We are truly blessed by the vision of New Beginnings Community Center. We believe that this grand opening will set an example for health care facilities across the country to begin to fully understand that just because someone experiences a cognitive disability, and their physical appearance may change, their human dignity does not," stated Bobby Schindler, Executive Director of Terri's Life & Hope Network and brother of Terri Schiavo.

One of the goals at the Terri Schiavo Life & Hope Network is to partner with care centers that provide assistance for brain injured individuals and support for their families.

"This is a very special event for our family and our network. We are delighted to know that New Beginnings will be a great resource and safe haven for those that have experienced a brain injury. The underlying message is that there always remains hope for these patients and their families," stated Suzanne Vitadamo, Director of Development of Terri’s Life & Hope Network and sister of Terri Schiavo.

"We remain optimistic that this will be the first of many extended health care facilities to embrace a 'safe haven' concept of care which will not deny any treatment or therapy to the cognitively disabled and traumatic brain injury survivors," Vitadamo added.

Suicidal GOP

Now really, what are they up to with recent ambushes of seniors? AARP, Medicare, Medicaid, Social Security. As Digby says, is the GOP demonstrating suicidal tendencies?

Ban in Idaho

From The Republic, below, a quick piece on a new ban in Idaho on "helping somebody else commit suicide." I haven't read the bill but wonder what exactly this means. Is the ban against a doctor prescribing fatal doses of a medicine? Yes. LifeNews writes that the bill "would revoke licenses from physicians who prescribe a lethal cocktail of drugs for patients to use to kill themselves. The law also allows people to get injunctions to prevent others from killing themselves with a doctor’s help. If it becomes law, those found guilty face five years in prison." But what is lethal? And who is to say that the doctor is responsible for a suicide? Could doctors be under greater scrutiny for the actions of their patients? Is it an overly-enthusiasitic reaction to "pro-life" efforts to thwart the momentum of the assisted suicide movement? Absolutely. Again from LifeNews:

"David Ripley of Idaho Chooses Life told LifeNews.com, “No opposing testimony was presented at the hearing. During the Senate deliberations, the Idaho ACLU testified against the bill. Supporting testimony was provided by Cornerstone Institute, Right to Life, the Idaho Medical Association and attorney Bob Aldridge.”
“This is a tremendous victory for the pro-Life movement in Idaho. Such overwhelming votes should make it clear to the death lobby that they are not welcome in our beloved state,” he added.

Can the ban be used to prosecute those who remove PVS patients like Terri Schiavo from life support? Can the ban be used to punish spouses of those who commit suicide?

The House voted overwhelmingly to send a bill banning helping somebody else commit suicide to Gov. C.L. "Butch" Otter for signature.

Monday's 61-8 vote came after brief debate on the chamber's floor.

Republican Rep. Lynn Luker of Boise argued that outlawing assisted suicide was necessary to help prevent abuse of elderly residents by their caregivers who are seeking to profit from their patients' demise.

Luker says this bill, which foresees penalties of five years in prison for violations, protects "all concerned."

Democratic Rep. Grant Burgoyne complained this is inappropriate government intervention in a private decision.

Burgoyne says, "My life is mine. It's mine for me to decide when and how it should end. It's not the business of the government to tell me when and how I should end it."

Read more here, and here.

Post Mortem

A new series of stories at NPR, ProPublica and All Things Considered, Frontline and Morning Edition will examine how we die:

On Feb. 1, 2011, ProPublica, FRONTLINE and NPR will begin airing and publishing the results of a year-long investigation into the dysfunctional system that determines how Americans die titled "Post Mortem." The newsrooms found a system in which there are few standards, little oversight, and the mistakes are literally buried. In state after state, reporters found autopsies conducted by doctors who lacked certification and training. Ultimately, the errors made by coroners and forensic pathologists have allowed potentially guilty perpetrators to go free and the innocent to be accused of crimes they did not commit.

ProPublica's A.C. Thompson was our lead reporter, and his work, produced in conjunction with that of many other reporters, will be available here the morning of Feb. 1. ProPublica will also be publishing stories on California's coroners with help from California Watch, a Berkeley-based journalism nonprofit, and the Investigative Reporting Program at UC Berkeley. Some of those stories will appear on both ProPublica's website and CaliforniaWatch.org.

In addition to our report, NPR will air stories on Morning Edition and All Things Considered, and on the night of Feb. 1 at 9 p.m., PBS FRONTLINE will air their one-hour documentary "Post Mortem." Watch a preview of the show at FRONTLINE and visit their website to find your local listings.

(h/t Kiera Feldman)

WH Patients' Rights Page.

You can read the White House's publicity regarding the "patient's rights bill" here:

http://www.whitehouse.gov/patients-rights?utm_source=email60&utm_medium=text2&utm_campaign=healthreform

Finally, A Patients' Bill of Rights?

Today Obama announced what he's calling a patients' bill of rights. I've yet to see the "bill" but suspect that it regulates insurers' practices. From everything I'm reading, the details are still shaking out, but I doubt that it will become the bill of rights I've been advocating for: one that guarantees non-discriminatory health care delivery to all citizens regardless of age, race, sex, gender, faith or ability. I doubt it will include strong informed consent laws and mandatory referral laws that prevent providers from refusing services to patients. Perhaps the administration is waiting to tackle the "conscience clauses," most notably Bush's law instituted in December before he left office, and currently on pause since the election.

More news:

http://www.chron.com/disp/story.mpl/ap/top/all/7073988.html

http://content.usatoday.com/communities/theoval/post/2010/06/obama-turns-back-to-health-care/1

http://www.iowapolitics.com/index.iml?Article=200706

Idaho and Patients' Rights

The two great opening sentences of Maureen Dolan's CDAPress article on a new Idaho Law:

A new law goes into effect July 1 giving Idaho health care workers the right to refuse to provide end-of-life care they find morally objectionable.

Some fear the legislation places the conscience of a caregiver ahead of a dying person's rights.

I'm constantly amazed at how the media report down what they call the center line on end of life rights. Now, it's actually questionable whether a doctor making your health care decisions for you - despite your advanced directive, living will or other statements regarding informed consent for care - is a violation of your rights or not.

I think two factors feed into this odd kind of reporting; lack of knowledge of the dying process and reporters working to make end of life care stories contentious.

Of course, a doctor or nurse denying a patient legal, medically proven services is a violation of rights. But because religion's last bastion is the death bed, few are willing to call it what it is: a patronizingly old fashioned provider refusal law that pushes paternalistic ideas of faith and medicine on elder patients as a way to deny them autonomy. Just ask women. They've been up against such discriminatory laws for 4 decades. Let's see what baby boomers do with them.

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.

I'm Glad I Wasn't Aborted.

Andrea Bocelli tells a "little story" about how glad he was that his mother didn't abort him.

http://www.youtube.com/watch?v=6QfKCGTfn3o

He emphasizes that life is complicated and that he's glad she made a choice. It's a common "pro-life" argument: what if all the great minds of the world were aborted? It may be a compelling story, that we have a fabulous entertainer like Bocelli because one strong woman, his mother, stood up in the face of medical complications and chose to, along with her child, to suffer the consequences. But the underlying messaging of this reasoning is the very effective call for self-sacrifice. Of course Mama Bocelli should have had a choice. And that, after all, is the point.

Serving All Patients

Chuck Colbert at Windy City Media Group reports that a new study conducted by Human Rights Campaign shows that US hospitals have a way to go before they are providing equal access to LGBT patients. While there are some success stories of hospitals who benefit from non-discriminatory care, many have not made the effort to accommodate LGBT patients.

I often write about the web of provider refusal laws (so-called "conscience clauses") that permit denominational hospitals and health centers and their employees to discriminate against patients, including women, gays, the disabled, and the elderly -- including denial of informed consent and meaningful referrals. I hope that more attention paid to the plight of LGBT patients informs the public of the discriminatory nature of these clauses and a need for a national movement for patients' rights. From the story:

Earlier this year when President Barack Obama signed a memorandum, calling for and end to discrimination against gay men and lesbians in hospital visitation policies, he set in motion potential changes that will significantly alter how LGBT people interact with the healthcare system.

But a new report of the nation's LGBT health care practices, released this week, found that far too many of medical care facilities have some way to go in implementing policies that are fully inclusive of gay people.

Representatives of the Human Rights Campaign ( HRC ) detailed results of the survey and report, called the Healthcare Equality Index 2010 ( HEI ) , for reporters last week during a telephone press conference. The analysis is included in a 72-page document, accessible at www.hrc.org/hei2010/index1.html . Working with the Gay and Lesbian Medical Association, the HRC Foundation produced the fourth annual HEI survey report and its findings.

Conducted October through December 2009, the HEI 2010 reviewed a representative sample of 200 of the largest healthcare facilities nationwide. The report found that in all 50 states—and even in historically LGBT-friendly cities like San Francisco and New York—some facilities still do not fully protect LGBT people from healthcare discrimination. In fact, a whopping 93 percent of healthcare facilities included in the study do not have fully inclusive policies while 42 percent fail to include "sexual orientation" in their non-discrimination policies for patients' bill of rights.

New Study on Denial of Services to Patients.

An article at Women's Health Policy Report, (via Feministe):

An increasing number of patients are being denied certain kinds of medical care -- such as abortion or contraceptive services -- because of hospital policies based on ideological or religious beliefs, according to a report released last week by the National Health Law Program, the Los Angeles Times' "Booster Shots" reports. The report analyzed policies at hospital systems representing more than 650 medical facilities in the U.S.

Susan Berke Fogel, the lead author of the report, said, "When people go to the doctor, they should be able to expect that the care they receive meets prevailing medical standards." The report "found a disturbing number of case studies where patients ended up far worse off either because their health care providers refused care or because their hospitals prohibited the care they needed for ideological or religious reasons," she added.

According to the report, one in six U.S. residents receives care in hospitals that have some restrictions on services. The report says that the issue is usually portrayed as a moral debate between the conscience rights of health providers and patients' rights to care. However, that debate overlooks evidence-based decisions about determining the best medical practice, according to "Booster Shots" (Roan, "Booster Shots," Los Angeles Times, 5/30).

Who Makes Your Health Care Decisions?

The provider, apparently. Or your state legislator. Or the local Catholic bishop who oversees services provided by your hospital.

If we consider health care a civil right, a human right -- and that's a big IF; the AMA and other health care organizations have resisted this approach for decades, saying as Rand Paul has recently, that private institutions should not be required to treat blacks, for instance -- then the ability of these entities or individuals to deny services (and informed consent and meaningful referrals) is a violation of those patient rights.

Pew takes a look at the inherent discrimination in provider refusal clauses (so-called "conscience clauses") that allow not only individual providers but institutions to refuse services, information about available, legal services, or meaningful referrals.

Their subject line for the article is an infuriating: "Are Health Care Workers Obligated to Treat Gays and Lesbians?" Now substitute your favorite minority in there, like Women, or Elders or the Disabled? What about Mexicans? Or Blacks? Or maybe Unmarried Women? Or Gun Shot Victims? Or AIDs patients?

Read my May post about conscience clauses.

My feeling is that the intent of conscience clauses may originally have been to protect doctors and health care practitioners from performing services they are religiously opposed to -- I understand the need for conscientious objection, so long as the patient is given proper and legal information and access to those services. But the practice has become hospitals and individuals exerting their moral "teaching" on individuals (a pharmacist lecturing an unmarried woman about extra-marital sex and refusing to fill her birth control prescription). It's part of the mission to reform "ungodly" behaviors like abortion, extramarital sex, gay sex, or oddly, removal from artificial life support. Because Roe v Wade most likely won't be overturned, the effort over the last three decades has been to limit access to reproductive services; this has now spread to other "pro-life" services that are also on the platform.

Here's a clip from the Pew article:

How do the Michigan and California cases differ from cases involving doctors and abortion, or cases involving pharmacists and birth control?

The most important difference centers around the fact that federal and state legislatures have enacted laws granting exemptions for obstetricians and other health care professionals with respect to abortions (and, in a much more limited way, for pharmacists with respect to birth control). The abortion-related legislation reflects the view that people should not be forced to perform an act that they perceive as life-destroying. At the same time, legislatures have not been inclined to exempt health care professionals from laws forbidding discrimination based on characteristics such as race, gender or sexual orientation. Courts might not want to fill this gap and create those exemptions. Courts generally see anti-discrimination laws as serving important social purposes, and they are often concerned that such laws could be undermined by exemptions.

Another important distinction involves the possible extent to which services are withheld. Indeed, there might be a considerable difference, particularly from the government’s perspective, between an obstetrician’s refusal to perform abortions and a therapist’s refusal to counsel a gay man. The obstetrician has not refused to care for an individual or group of people, but only to perform a specific service. By contrast, the therapist’s refusal denies all services to anyone in a same-sex relationship with issues arising from that relationship, even though the therapist remains willing to provide comparable services to those in heterosexual relationships. The therapist’s decision could therefore be seen as undermining the state’s interest in protecting gays and lesbians from discrimination.

What arguments have been made by those who, like the student therapist in the Michigan case, seek moral or religious exemptions?

People who seek these exemptions usually make the following arguments. First, they assert that they are not opposed to serving gay or lesbian clients; rather, they are religiously opposed to aiding or facilitating certain aspects of same-sex relationships. For example, in the EMU case, Ward argued that she did not want to counsel a client with respect to his homosexual relationship but was willing to counsel him about other aspects of his life. Second, they contend that federal or state constitutional protections of religious liberty entitle them to these exemptions. Finally, proponents of such exemptions argue that granting an exemption will cause little or no harm to gay and lesbian clients because equally competent professionals are ordinarily willing to provide the services. Indeed, they say, as long as the number of exemption-seekers is small, and the number of professionals willing to serve such clients is large, the gay and lesbian clients will have adequate service.

Ward explicitly relied on the American Counseling Association’s Code of Ethics in arguing that she should be entitled to refer a client to another counselor in the EMU program if she determines that her personal moral convictions make it impossible for her to work effectively with that client. In the California case, the North Coast Women’s Care Medical Group made a similar argument about referral, though in that case, the referral would have been to a fertility specialist outside the North Coast group, because no one within the group was both willing and qualified to treat Benitez.

Gary Coleman, Terri Schiavo and the Definition of Death.

Jill Stanek's apparently an immortal doctor.

Revising Provider Refusal Laws to Make Health Care A Civil Right.

There's a recent post by Peter Wilson at conservative American Thinker that's making the "pro-life" internet rounds. It addresses the provision in the Patient Protection and Affordable Care Act (the health care bill), Section 1553, that "protects" doctors from participating in assisted suicide (or aid in dying, death with dignity, etc.). The full text of the section reads (second source here):

SEC. 1553. PROHIBITION AGAINST DISCRIMINATION ON ASSISTED SUICIDE.

(a) In General- The Federal Government, and any State or local government or health care provider that receives Federal financial assistance under this Act (or under an amendment made by this Act) or any health plan created under this Act (or under an amendment made by this Act), may not subject an individual or institutional health care entity to discrimination on the basis that the entity does not provide any health care item or service furnished for the purpose of causing, or for the purpose of assisting in causing, the death of any individual, such as by assisted suicide, euthanasia, or mercy killing.

(b) Definition- In this section, the term `health care entity' includes an individual physician or other health care professional, a hospital, a provider-sponsored organization, a health maintenance organization, a health insurance plan, or any other kind of health care facility, organization, or plan.

(c) Construction and Treatment of Certain Services- Nothing in subsection (a) shall be construed to apply to, or to affect, any limitation relating to--

(1) the withholding or withdrawing of medical treatment or medical care;

(2) the withholding or withdrawing of nutrition or hydration;

(3) abortion; or

(4) the use of an item, good, benefit, or service furnished for the purpose of alleviating pain or discomfort, even if such use may increase the risk of death, so long as such item, good, benefit, or service is not also furnished for the purpose of causing, or the purpose of assisting in causing, death, for any reason.

(d) Administration- The Office for Civil Rights of the Department of Health and Human Services is designated to receive complaints of discrimination based on this section.

The clause protects providers who refuse to participate in legal aid in dying -- a point that should make "pro-life"groups very happy. No doctor, if asked by a terminal patient to provide a fatal dose of drugs, is obligated to write the prescription. But Wilson, forgetting that many who observed the New Year's Eve Montana Supreme Court decision Baxter v. Montana that determined aid in dying was legal there clamored for a strong conscience clause to protect doctors from having to participate. This clause does so. (Death with Dignity laws in Oregon and Washington, the other two states where aid in dying is legal, already include clear provider refusals that protect doctors from participating.)

But Wilson is trying -- and failing -- to get at something much more subtle. "Pro-life" groups in their activism oppose aid in dying in all its forms as they define them, including removal from futile care, removal from nutrition and hydration (see Terri Schindler Schiavo Foundation) and even, among extreme groups and individuals, palliative sedation. This section of "Obamacare," as Wilson and conservative opponents of the bill call it, clearly defines what "assisted suicide" is.

Wilson asks Rita Marker, executive director of the International Task Force on Euthanasia and Assisted Suicide (and pal of ultra-conservative, pseudo-science proponent Wesley J. Smith) what she thinks of 1553. She calls it, "a 'bizarre conscience clause' for those who refuse to participate in assisted suicide." Fair enough, I guess, depending on what she means by bizarre.

Provider refusal clauses -- so-called "conscience clauses" are a bit of a mess right now, as Wilson points out. The history of provider refusal clauses is rather brief -- and marks the point when technology began to overtake conservative ideas of women's roles in society and medical imposition to God's provenance -- and began as a reaction to the legalization of abortion in 1973. What were once "protection" of doctors from performing medical services they morally or religiously objected to morphed into "protection" of entire institutions, like the Catholic church which is the second largest provider of health care in the U.S.

Backlash to Roe v. Wade has expanded these federal laws (as noted below, states have their own blanket of provider refusals) to include increased rights of doctors at the detriment of rights for patients. Some do not require referrals -- a doctor is not required to give a woman, gay or elder patient a meaningful referral for services -- or informed consent -- a doctor is not required to tell a woman, gay, or elder patient all of their medical options. Some are renewed annually because they are attached to federal funding (hence the phrase "no federal funding for abortion," which is not factual: the clause only applies to Medicaid funds but exemplifies the slow creep of these laws).

I note women, gays and elders because these are the groups most often targeted by provider refusals. Here's a brief history of the federal laws that are currently on the books:

In 1976 the Hyde Amendment established that no federal monies allocated to Medicaid could be used to pay for abortions. Hyde, renewed each year, has been challenged in the courts numerous times and upheld (see Maher v. Roe.) The language has become more limiting over the years and during the health care debate, feminists had to admit that their historical acceptance of this law allowed it to morph into blatant discrimination against the poor. They have renewed their calls for overturning Hyde.

The first of the provider refusals, or so-called “conscience clauses,” the 1973 Church Amendment, named for Frank Church (D-ID), protects health care “entities” or individuals who accept Medicaid from discrimination for their choice to perform or not perform abortions. States enacted their own subsequent laws and today, according to the Guttmacher Institute, 46 states allow providers to refuse abortion services. Forty-three allow institutions to do so.

Republicans gained majority in the House in the 1994 elections for the first time since 1954, initiating a new wave of abortion restrictions. The 1996 Coats Amendment was a reaction to the requirement made by the accrediting body for OB/GYNs that students must receive abortion training. Congress stepped in to preempt the requirement.

In 2005, the annual Weldon Amendment was first attached to the appropriations measure that funds the Labor, Health and Human Services and Education departments. It stipulates that neither individuals nor “health care entities,” can be discriminated against for refusing to pay for, cover, or refer for abortion services.

And in December of 2008, what’s been called a “parting gift” from the Bush administration, the greatest expansion of refusal laws was enacted with support from the U.S. Conference of Catholic Bishops (USCCB) and the Catholic Health Association. In essence, it sold patients down the river and gave religious providers (individuals and institutions) not only the right to deny services but information about or referrals for them.

Since the Obama administration addressed the “conscience clause” last year the Catholic Church has mounted a campaign to retain it. Without such protections, the Church would lose the ability to dictate the services its providers perform and its more than 100 million annual patients receive.

Wilson's truncated history of provider refusals only hints at their 30 year creep and authoritarian nature. Once written to protect the conscience of individual doctors, a noble intent, they now allow institutions, most egregiously, the Vatican via the United States Conference of Catholic Bishops, to determine not only what care is provided to millions of patients but what available, legal care those patients can be informed of and referred to.

Rita Marker, without such intention, most clearly noted this creep in a recent article, also for American Thinker:

Some years ago, I was speaking to a Nebraska state senator after testifying on a pending bill. I had explained that I wasn't saying that the bill would be interpreted in a certain way, only that it could be. Then he said something I've never forgotten. "Be assured that if a law can be interpreted in a certain way, it will be -- by someone. And it will all be perfectly legal."

Unfortunately, the greatest resources and organization reside in the hands of institutions, churches, and other organizations determined to limit the use of medical technology based on denominational, theological or authoritarian principles. Not to that lone woman who is pregnant, shamed, in a traumatic situation; not to the dying elder who is suffering and no longer wants to be fed through a PEG tube in his belly, not to the rape victim; not to the doctor employed by a Catholic hospital but prevented from telling a troubled teen how to avoid getting HIV.

And here is another lesson for us about our form of Democracy. Majority rule defies the rights of minorities by supplanting individual conscience with the loudest and most funded voices in the country. If it is indeed the intention that counts, these laws are no longer intended to protect an individual doctor's conscience. They are used as tools by those who wish to make abortion, aid in dying and other patients' rights illegal -- or more importantly, legal but completely unaffordable and inaccessible.

And here is Wilson's objection to section 1533 of the health care bill: "it reframes the debate as one of civil rights, and brings assisted suicide more into the mainstream." The debate about patients' rights is already about civil rights; and it is already mainstream.

Schiavo v Schindler

More noise from the destructive relationship between Michael Schiavo and the Schindler family: A new report out of Florida called the Terri Schindler Schiavo Foundation's finances into question last week; now Michael Schiavo is threatening to sue the Schindlers for using Terri Schiavo's name to raise money.

The news, first reported at conservative LifeNews by ridiculously prolific Steven Ertelt, immediately spread across the "pro-life" blogosphere causing all of the Schindler's tried-and-true supporters like Wesley J. Smith to weigh in. The article is rife with misconceptions regarding Schiavo's death; misconceptions that the Schindlers (and Smith and Ertelt) have worked tirelessly to maintain in their fight against patients' rights to removal from artificial nutrition and hydration. The renewed animosity should prove interesting to watch, particularly as it plays into state-level discussions regarding end of life care, health care reform, and patients' rights. The Schindler family, particularly Bobby Schindler, have worked in the past few months to fashion themselves as advocates for the disabled. Other disabled rights activists view this terminology creep as somewhat suspect.

From Alex Schadenberg at Euthanasia Prevention Coalition, a friend of the Schiavos.

Provider Refusal of Futile Care.

Thaddeus Pope has an intriguing post at his blog today about what can be termed the undermining of doctors' refusal of care. He cites a recent article by Christopher M. O'Connor, associate legal council for Lancaster General Hospital (where I was born), in the recent Journal of Lancaster General Hospital. The article is titled, "Can the Health Care System Ever Say No?" and addresses the lack of clear guidelines and protections for physicians who wish to end care that is not beneficial.

I have written passionately about the problems of provider refusals (so called conscience clauses) that often allow a provider -- a doctor, a denominational institution, pharmacists, etc. -- to deny services that they are morally, ethically, and most often religiously, opposed to. Twenty percent of Americans are treated in Catholic hospitals, for instance, where they are denied medical services that the Catholic Church opposes. These guidelines discriminate against women predominantly regarding reproductive services, but also against gays and the elderly. I strongly oppose this type of discrimination and see it as a violation of patients' rights.

But Connor comes at it from another angle. What about doctors who are, by emotional family members or fearful terminal patients, asked to provide care that will not prolong life? Doesn't the provider refusal law protect them from perpetuating the suffering of patients?

Jessica Mitford wrote in her 1963 bestselling expose of the funeral industry, "The American Way of Dying," that most of us are coerced into buying services and products for our deceased loved ones because we are uneducated consumers, distraught with the emotions that surround death, pressured by cultural forces that dictate a contrived form of propriety, and forced to be consumers of an industry that we know very little about.

The health care industry is not unlike the funeral industry in that we know little about it as consumers until we are forced to make use of it, often under great distress. As death and illness have become more and more institutionalized, taking place primarily outside the home, our culture has become less and less versed in how death occurs, how the medical industry operates, what choices we have in cases of terminal illness. And too, medical technology has created more choices and options, making that removed industry even harder to understand easily. We are uninformed consumers, in other words, lost, when forced to enter into the health care system, in the complications of it all. And the emotion of it all. The responsibility of making decisions is a terrible weight for the ill and their family members. Doctors are looked to as paternal, autoritarian advisors, the ones who know everything and can make the best decisions for us.

This can be detrimental in the case of a young woman who has been raped and happens to enter a Catholic hospital where state laws don't require that the emergency room workers where she is treated inform her of the existence of emergency contraception. Lives are ruined in these instances. But the other side that Connor reminds me of this morning, is when a doctor has to say to an unknowing and distraught loved one that a Do Not Resuscitate order is the very best for their loved one, a path that will cause the least amount of suffering.

In a culture where denial of death is championed, where suffering is glorified, where patients are faulted for "giving up" if they go into hospice, where fighting against death and illness is termed as a battle that requires great strength against all odds, how can we educate emotional family members and patients about how to die? And how do we equip well-intentioned doctors to not only communicate impending death but to make legal decisions about ending futile care? I don't have concrete answers. And obviously neither does the medical industry. Certainly the answers aren't to be found in the cultural stories that we are bombarded with daily by all sorts of media.

I have a hospice patient right now who is having a difficult time understanding that he is terminal. His family members and friends keep sending him cards that say "get well soon." The facility's church group come to pray for a cure for him and tell him that no miracle is too impossible for God. We had a very difficult time finding an effective pain management regiment because he was ashamed to tell the nurses when he was in pain, intimidated by their authority, and unsure of what was happening to him. He failed to understand that there is life between full function and death and that the period of disability he is entering has value -- because like the rest of us he just didn't know. He doesn't know what's coming and he has no reference to the experience in his prior 65 years. He looks to the nurses and doctors for direction; they look to him for decisions -- neither fully able to discuss the matter frankly.

Patients will only be able to make informed medical decisions when they are informed consumers. Unfortunately, so many factors impede proper informed consent. Yet I fear that strengthening provider refusals improperly limits patients' rights, taking the most important decisions out of the hands of those lives directly affected. There's nothing like informed, patient, incremental conversation to prepare a patient for what is ahead. Until doctors and society are willing and able to have those conversations, we will struggle to keep decision-making in the right hands: the patient's.

The post:

His conclusion: "Recent legal decisions have not necessarily prohibited the health care system from refusing to provide care, but they have questioned, and perhaps narrowed, the circumstances in which the medical community can refuse to provide care it believes is both ethically and medically inappropriate."

In a section titled "unsettled legal foundation," O'Connor writes: "Courts have recognized that physicians cannot be forced to provide care that is not beneficial. However, they have failed to announce concrete standards or consistent principles to guide the medical community to resolve disputes between it and patients (and their families)."

O'Connor, actually goes beyond making the point that the law is unsettled ans suggests that it is getting even less provider friendly. Citing the March 2009 Betancourt opinion, he writes that "Although courts, and in some cases, state legislatures, have shown a willingness to recognize circumstances in which the health care system can refuse to continue care that is not beneficial, recent events indicate that the tide may be turning."

Rick Scott for Governor.

The shamed founder of Conservatives for Patients' Rights -- another one of those mis-named organizations -- has decided to run for governor of Florida. I think it's time his friends -- or the voters -- host an intervention.

Respecting Direct-Care Workers.

It's a little old (April 2) but well worth the read: an article by Beth Baker from Ms. Magazine on the low pay and respect afforded our vital direct-care workers. As our nation ages and as more elders come into the health care system via new laws and new medical advancements in end of life care, and as we work to provide care to all members of society, direct-care workers form an increasingly important wing of our health care delivery system. I think Baker helps initiate the necessary discussion of why these workers are so poorly paid, who makes up their ranks, and how we can work to ensure that their vital work is properly rewarded.

Those who care for our elders continue to be stuck at the bottom as far as wages and respect [PDF], despite rapidly growing need for their services. No matter the setting in which they work—nursing homes, assisted living, individual homes—direct care workers are low-paid, often without health insurance and confronted with back-breaking labor and challenging clients with complex medical needs. And, no surprise, nearly 9 out of 10 direct-care workers are women, 28 percent are African-American and 23 percent are immigrants [PDF].

These caregivers provide the most intimate care imaginable to frail and vulnerable people. We depend on them to give competent, compassionate attention to our grandparents—and to us as we age. Their clients’ lives are literally in their hands. “What we do is important,” says Tracy Dudzinski, a direct-care worker in Wisconsin since 1996. “One of the most rewarding experiences you can have is to go in and help make a difference in a person’s day.”

According to the Bureau of Labor Statistics Occupational Outlook Handbook, the elder care field is among the fastest-growing in the nation, with 50 percent growth from 2008 to 2018 predicted for home-care workers. But we’re doing little to attract people to these critical jobs. We reward women like Tracy with wages of less than $10 an hour. And Tracy, whose husband is on disability, is the sole breadwinner for her family of four children. Like another heavily-female occupation–child care–our nation expects caregivers to subsidize these services with their low wages.

Now, direct care workers are taking matters into their own hands and speaking out. “People misunderstand us,” says Tracy. “We’re smart people and hard workers.” Tracy has a leadership role in an emerging movement to transform the lives of direct care workers: She is a staffer at Cooperative Care, a worker-owned co-op of home-care workers based in Wautoma, Wisconsin. She also serves on the boards of both the Wisconsin Direct Care Allianceand the national Direct Care Alliance (DCA), headquartered in New York City. She has traveled to Capitol Hill and the Institute of Medicine of the National Academies to testify about the working conditions of her peers. “I used to be the mouse in the corner,” she says. “Now I’m a changed person.”

Among DCA’s most successful projects is the Voices Institute, a week-long retreat and intensive training session for direct-care workers to become advocates for their profession.

When I asked Tracy what the public can do to support these efforts, she offered, “Show direct-care workers some respect. Get involved with the DCA. Learn about the issues and contact legislators. The more noise we make, the sooner things will be fixed.”

Strengthening the Advance Directive.

Thaddeus Pope at Medical Futility blog makes a great point about the president's recent move to strengthen advance directives. And to his post, I add my own point: at institutions where provider refusals (so-called conscience clauses) prevent patients from receiving treatment and information they desire, this effort will have no effect. Like at the 624 Catholic hospitals and hundreds of denomination health care facilities around the country. Pope's post in total:

On Thursday, President Obama directed DHHS to promulgate regulations that would "guarantee that all patients' advance directives, such as durable powers of attorney and health care proxies, are respected, and that patients' representatives otherwise have the right to make informed decisions regarding patients' care."

Now, hospitals already have statutory and common law duties to respect advance directives. Indeed, compliance is already required by the PSDA and regulations pursuant to the PSDA. If the new regulations are to add anything meaningful, perhaps they will mean that DHHS will (after two decades) actually enforce the PSDA.

That would be a great benefit. In contrast, the effect of DHHS regulations on LGBT individuals seems far more limited. Sure, the risk of federal enforcement may chill some hospitals that ignore advance directives appointing LGBT partners. But most LGBT patients do not have advance directives. And LGBT partners are rarely recognized as authorized decision makers under default surrogate statutes. Therefore, since DHHS merely enforces compliance with state decision making law, most LGBT obstacles will remain. The real problem is with state law.