Ann on the TeeVee

You can catch me talking with NY-1 News about the Catholic Church and its laity here:

http://manhattan.ny1.com/content/top_stories/156458/local-catholics-sometimes-deviate-from-cardinal-dolan-s-social-positions

Contraception, VSED, POLST, PVS, Oh my!

In "Fear of a Catholic Ghetto" at Religion Dispatches Sarah Morice-Brubaker points out the language being used by Catholic leadership to influence the new mandatory coverage of contraception. Rightly, she emphasizes the size of the Catholic Church's participation in our health care. And she links to a piece of mine at my other home where I'm editor, The Revealer. Here's a clip from the USCCB's statement against coverage of contraception:

As to the exemption, the comments detail how it “is narrower than any conscience clause ever enacted in federal law, and narrower than the vast majority of religious exemptions from state contraceptive mandates,” wrote Picarello and Moses. “By failing to protect insurers, individuals, most employers, or any other stakeholders with a religious objection to such items and procedures, the HHS exemption, like the mandate itself, violates” the U.S. Constitution and various federal statutes.

Here's a clip from the post at First Things where she gets her article's title:

This definition is so narrow that it excludes almost all Catholic institutions as they now operate. The conjunction, “and” before the fourth article ensures that almost no religious organization satisfies the criteria; “or” would have been limiting, but “and” is crippling. Catholic hospitals, schools, and charities do not serve primarily Catholics, they serve everyone; there is no baptismal requirement to receive services from Catholics. We do not serve people because they are Catholic; we serve people because we are Catholic. And the same goes for members of other religious groups.

Elsewhere I've written about Catholic hospitals and health providers as part of the church's mission to spread the Catholic faith. Which is fine by me unless it involves coercion, lack of informed consent, or lack of meaningful referrals. We are not all Catholic. We never will be. The law should protect the right of conscience of those who aren't from those who provide services, with federal dollars, and think they should be. That's not persecution of Catholics.

**

A new article at Solitary Watch traces the predecessors to The War on Terror, The War on Crime and The War on Drugs. Here's a clip:

Many historians trace the birth of the War in Crime to the mid-1960s–specifically, to Barry Goldwater’s 1964 presidential campaign, with and his rhetoric of “crime in the streets” and the need for “law and order.” Since that time, politicians have increasingly exploited the fear of violent crime and its perpetrators to institute ever more draconian laws and policies. The War on Crime was soon joined by its partner the War on Drugs, which was launched by Richard Nixon and gained traction during the Reagan Administration. One crime bill after another was passed with broad bipartisan support, and more and more federal and state monies were poured into expanding law enforcement and building and maintaining prisons. Between 1970 and 2005, the U.S. prison population grew by 700 percent.

The thread for me, from my work on denominational health care and end of life care to systematic penalization of segments of society, is how the US legislates who should die, who deserves dignity (and what that means), and how we can/should/get to die. If you are put outside society by governmental systems and laws (think conscience clauses that deem Catholic hospitals outside regulation or "three strikes" drug offenders in prison in California), you are exempt from what the rest of society typically deems as appropriate and fair. Clearly religious exemptions privilege Catholic conscience while penal laws take that privilege away. Still, the law works to provide "special" circumstances to these groups or segments of society.

**

Studies continue to break down the persistent vegetative state diagnosis. At The Guardian Mo Costandi interviews Adrien Owen who's conducted studies that test the consciousness of PVS patients since the mid 2000s. While I think it's an unrevealing article--most of this has been hashed elsewhere and with more, shall we say, purpose--it begs the question: what does determining "minimal consciousness" within these patients really mean to them (if that's an appropriate question) but also to their families, their doctors, and to society at large?

**

Last month Compassion & Choices launched a campaign to educate elders on how to end their lives by voluntarily stopping eating and drinking (VSED). The issue of elders refusing food and water was nationally highlighted recently when a couple was evicted from their nursing home for choosing VSED. The Catholic Church and its conservative supporters have, as I predicted they would, come out strongly against patients' rights at the end of life, even, as this article attests, going after living wills and do not resuscitate orders. The author, Christian Brugger, Fellow at The Culture of Life Foundation, writes here about a new law in several states that requires medical personnel to abide by a patient's wishes as noted on the new form, POLST. His concern is that a terminal condition is no longer necessary for patients to refuse treatment:

The POLST-type legislation removes the condition that a patient is terminally ill or diagnosed in a PVS before a refusal order is actionable. In other words, the new law permits any adult patient to refuse any treatment at any time for any reason in the event they lack decisional capacity; and health care professionals, directed by a doctor's medical order, ordinarily would be (and are) required to carry out the order. Although the law for strategic purposes is rhetorically formulated as bearing upon end-of-lifemedical decisions, it sets forth no requirement that a patient's refusal of life-support must be limited to end-of-life conditions.

Note the italics (his, not mine). Shouldn't you be able to refuse treatments you don't want? Only if your body and your life are your own. The position of church leadership, however, is that your body is not your own but rather belongs to their interpretation of god. In a society that is comprised of endless varieties of faith, an organization that does not believe your body belongs to you--and is managing 1/5th of all hospital beds--is on a serious mission.

Force-Feeding Prisoners Is Unlike Patient Removal from a Feeding Tube?

As someone who watches the legal battles surrounding patient removal from artificial nutrition and hydration, the evolution of the directives used by Catholic health care (which state now that the decision to remove ANH is up to the hospital and not the patient), and who sits at the bedside of dying patients who wish to stop eating and drinking and often do, I find the occasions of state-ordered force-feeding of inmates extremely pertinent to end-of-life health care discussions.

Of course the thread is state sanction of what we ingest, what we do with our bodies (think drug laws, abortion, aid in dying, motorcycle helmet laws, the list goes on). Do we agree that force feeding a death row inmate is suicide prevention? Is prevention of the individual's suicide so that the state can kill him? Or rather, put another way, is the state prolonging the man's death; not allowing him the privilege of taking his own life? (Be sure to watch the dated, partisan but nonetheless riveting 1981 TV miniseries Masada, which recounts the tale of 900 Jews besieged in a mountaintop fortress by the Romans. The Jews commit suicide in order to "defeat" the soldiers and have since become legendary heroes. Or compare the heroism of soldiers who put themselves in harm's way in battle. Or kamikazee pilots in WWII. Or suicide bombers.)

Arguments for force feeding a death row inmate could be made--for his soul, for his quality of life behind bars, for his need to pay for his crimes. And surely he could be depressed, as one can imagine death row inmates are, just as terminal patients are. But it is in these cases that particular troublesome aspects of refusing patient removal of ANH are highlighted.

And so, from Birmingham, Alabama, the story of a death row inmate who has stopped eating and showering and has been ordered force-fed by a federal judge. The details of it make me ask how as a society we wish to define dignity and for whom we wish to (p)reserve it.

A federal judge has ordered a man who faces the death penalty on federal charges that he killed two tellers during a 2007 bank robbery in Bessemer be force-fed and bathed at the Shelby County jail.

U.S. Magistrate Judge John E. Ott, in an order filed Monday, stated that he had learned from the U.S. Marshal that William Merriweather has been refusing food and to take a shower for an extended period. "The court has been monitoring the situation for some time," according to Ott's order.

On Monday, Ott stated that he had informed Merriweather's defense attorneys of "the need for medical intervention under the circumstances."

Merriweather's attorneys, Emory Anthony and Richard Jaffe, argue in court documents that Merriweather is incompetent to stand trial.

The two attorneys stated in documents filed Monday in response to the judge's proposed order that Merriweather was "clearly not competent" and agreed to a temporary order of no more than 14 days permitting the Shelby County Jail to take reasonable steps "to ensure that Mr. Merriweather's health is not further compromised."

Ott ordered the Shelby County Jail to take steps to make sure Merriweather's health is not further compromised, including forcibly feeding and bathing him for a period not to exceed 14 days. Before the end of that time the U.S. Marshal is to be notified by jail personnel of Merriweather's medical status "and his compliance or non-compliance with medical and jail personnel directions."

What the USCCB's New Focus on Aid in Dying Could Mean

I have a new piece at The Nation that you can read in its entirety here. Here's an excerpt, below. It was posted Wednesday night but I'm still waiting for Kevin Drum and Ezra Klein to call....

A focus on aid in dying should illuminate failures in end of life care, of which the US has many. In our current state of crisis—52 million people are uninsured; the United States spends twice as much on healthcare than other developed nations, with inferior results; the population is growing older; the dying are often subject to debilitating futile care in their last days—we can hardly afford ideological diversion. As with the issue of abortion, when the Catholic Church shines a spotlight, Americans get blinding orders, not illumination.

Even typically astute writers miss the point on end-of life care. While Ezra Klein, the Washington Post's healthcare expert, didn't endorse Catholic pundit Ross Douthat's contention that aid in dying should be illegal (though Klein failed to acknowledge that it is legal in three states), he bought the same "slippery slope" argument "pro-life" groups have used for years to oppose and restrict abortion. While Mother Jones's Kevin Drum refuted Douthat’s religious arguments and Klein’s sources and logic, he too failed to connect the conversation on assisted suicide to the larger crisis in end-of-life care. Neither took meaningful issue with the outsized role the Catholic Church—which operates one-fifth of all hospital beds in the United States according to their own guidelines—plays in this or the healthcare debate.

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.

Patients' Rights at Catholic Hospitals: Take Phoenix for Example

I hope it's a good omen for 2011 that Becky Garrison's article for The Guardian about the excommunication of Sister Margaret McBride is getting such attention. Perhaps the crisis of patient's rights that results when health care is provided with a denominational bias will be addressed?

Here's the nitty-gritty of the story: Sister McBride and her colleagues approved an abortion to save the life of a pregnant mother of three. The local Bishop, Thomas Olmsted, objected to the procedure, saying that the hospital and sister were treating an unborn child as a disease. That was last November. Last week, Olmsted revoked the hospital's Catholic status.

This rift between practitioners of health care and the Catholic Church is not about to go away any time soon. There are about 624 Catholic hospitals in the U.S. The Catholic Healthcare Association, state laws, and individual doctors and practitioners are increasingly at odds with the more conservative bishops who enforce adherence to the Church's 72 Ethical and Religious Directives. These directives, written by the United States Conference of Catholic Bishops, are enforced by the bishop in the area where hospitals operate. If the bishop is opposed to certain medical practices and highly involved with the hospital's operations, the rights of patients can be grossly curtailed.

Here are just a few scenarios that take place across the country every day:

- a rape victim is not told that she can prevent pregnancy by taking emergency contraception, nor is she referred to a doctor or emergency room willing to provide EC

- women are denied tubal ligations at the time of birth (or any other time and are not referred to alternative services), when the procedure would be easiest and not require a second invasive operation

- patients are not informed of how to prevent STDs, AIDS, or unwanted pregnancies, nor are they referred to appropriate services

- the hospital retains the right to decide when a dying patient should be removed from artificial nutrition and hydration, not the patient, the patient's advance directive, nor their family

As Becky writes, CHA broke with the USCCB by supporting the Obama Administration's health care bill, despite the latter's claim that the new bill would skirt the Hyde Amendment (which prohibits use of federal funds for abortion; the amendment is an annually renewed clause applied specifically to Medicaid funding).

The rift between bishops and medical practitioners can only widen as the Church works to bring hospitals in line with their doctrine, doctrine that often runs afoul of federal and state laws protecting patients' rights.

Read comments at Episcopal Cafe

Framing Pain as Necessary.

It's been quiet around here -- and I have some good excuses -- but there's nothing like a prompt from a friend and the romanticized notions of pain in David Mills recent column for First Things, "Death Dignified by Christ" to snap me out of my pressing distractions.

Mills is the deputy editor of First Things, a historically Catholic site that has been flirting with keeping the big C on the down-low and bringing in various other voices to freshen up their demographics. The print magazine (which still exists and this month features the likes of Stanley Hauerwas, Ross Douthat and Dinesh D'Souza) was founded by the Anglican-turned-Catholic priest, Richard Neuhaus, who wrote often movingly about American life in the "public square." (Nathan Schneider pointed us to Alan Jacob's review of American Babylon, Neuhaus' last book before he died in 2009. The review slights Neuhaus for failing to move into the digital public square.)

First Things is also the blog-home of the scoundrel Wesley J. Smith (I'm taking license, maybe, but he does appear in a leather jacket in a publicity photo and pick a lot of fights), a vocal and long-time confuser of the facts regarding end of life care, assisted suicide, and health care. Smith's taken his "anti-euthanasia" show on the road to countries where bills have been considered and his views have had influence over U.S. presidents as well. I've spent a lot of time debunking Smith, when in my blogging swing, because he exemplifies what American media get so wrong about health care and end of life care. In other words, Smith works within a common frame of understanding that is grossly divorced from how health care really works.

But back to Mills. A writer and editor, Mills has headed a number of prominent and award-winning Episcopal and Catholic journals. He's also a member of the National Organization of Episcopalians for Life (NOEL), now called Anglicans for Life. It's a group with what first appears to be a singular, stated focus: to end legal abortion. Yet, such a crusade -- and I mean to imply that AoL, like most "pro-life" groups are religious in nature -- rests on a moral opinion of human sexuality, not on actual human behavior. I point this out because Mills' recent article for First Things too has a singular stated focus, one which is more difficult to frame than the issue of abortion. (In the prevalent and successful narrative against abortion babies are cute, even if they're hypothetical; it's hard to get many segments of the American public upset about the slighted reproductive rights of women; suffering poor health or an unwanted pregnancy is "acceptable" punishment for immoral acts, like sex.) Mills is out to emasculate the Death with Dignity movement.

In "Death Dignified by Christ," Mills glorifies suffering as a redemptive, saving force. His essay is really just a reiteration of the old theological answer to the even older question, "Why does God make us suffer?" To punish us for our "immoral" acts is the answer for abortion (or to teach us the beauty of babies and discipline). But that doesn't fly so well with today's baby boomers who are facing modern and painful ways of dying. They've got less of a grip on their need for punishment. (Which is why Death with Dignity is currently legal in three states in the U.S. -- Oregon, Washington, and Montana.) So the religious/moral arguments that have been so successful in the erosion of women's reproductive rights don't fully work when used to address end of life suffering.

Beyond Mills' assertion that we should all be subject to his interpretation of God's laws, he resorts to Smith's common approach: degradation of those who want to end their suffering. In writing about his dying father, Mills says he "took it like a man," as if dated concepts of gender and masculinity are enough to convince us that suffering is a show of strength. Those who consider assisted suicide are, he writes, "declar[ing] yourself God," and choosing an end "without fuss or bother or pain." (Try that one on Robert Baxter.) Dying means to suffer, he tells us -- and suffer is loosely defined in the article as inclusive of being alone, losing our faculties and being "dressed by cheerful young women the age of your granddaughter."

By perpetuating the idea that suffering is strength, Mills would like to make heroes of those who approach death in pain. Forget Cicely Saunders' concept that pain is relative and varied. (Saunders, a devout Catholic, founded the modern hospice in the late sixties/early seventies, in part to combat the "euthanasia" movement.)

Death and pain are irrevocably tied in Mills' assertion. But they don't have to be so in our hospice facilities and hospitals. The medical world possesses methods of controlling pain. And if that fails, we all own this body that carries us around; who's to say we shouldn't escape death when we're ready -- regardless of the place we plan to visit afterwards? Glorifying suffering or asserting that pain is a necessary part of dying ignores the medical advances of the past 50 years (for patients' good and bad) and perpetuates inhumane and unnecessary ideas about rights at the end of life. We have the right to die peacefully, without pain, regardless of what we believe. Mills and others are successful in perpetuating the myth that pain makes us better, redeems our immoral behavior, and is inexplicably tied to the dying process. But why are they? Why do all but 20% of our seniors die in the hospital when 80% wish to die at home? Why are discussions of patients' desires at the end of life seldom had? Why is it shameful to accept declining functionality and frailty? To suffer pain without seeking medical treatment?

Take God out of the question and you get, "Why do we suffer?" I would say we suffer pain at the end of life because we wrongly think we have to. For the lucky of us, our diligent hospice nurse is working her heart out on our appropriate medication dosage.

(h/t Carla Axtman)

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.

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.

PVS Patients and Gender.

The curious case of Gary Harvey was covered in a long report at World News Daily yesterday. The title, "Another Terri Schiavo," seems to focus not on Gary but his sad and desperate wife, Sara, who has taken on the Catholic Hospital where Gary was being cared for. Her guardianship of her husband has been revoked and her visiting hours are limited. As the story notes, all of these actions are difficult to understand but it seems that Sara is fighting to take Gary home to care for him. The Schindler family, Terri Schiavo's family, are assisting Sara in her fight to retain Gary's feeding tube indefinitely.

The story has all the trappings of a difficult end of life scenario: a sudden collapse, resuscitation that recovered breathing and heard beat but not brain function, adult estranged children from prior marriages, conflict between the hospital and family members regarding proper care of a PVS patient, the Catholic church, do not resuscitate orders, money, absence of end of life planning, and contested definitions of death. The variables are that the Catholic church has been challenged with not honoring the sanctity of life and the sex of the PVS patient.

The cases of three persistent vegetative state (PVS) patients brought the diagnosis -- and the need for better laws and definitions of futile care -- to the public's attention: Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. Though there are roughly 30,000 PVS patients in the country at any given time, the stories of these three young women -- struck down in their youth, their high school photos plastered on the nightly news, their choice of medical care in such a situation undetermined -- have been stories that stoked enormous public controversies over the past 30 years. It's curious that the emphasis of the recent case in upstate New York focuses on the wife.

Family Guy and the Fifth Anniversary of Terri Schiavo's Death.

A recent episode of The Family Guy on Fox featured a musical segment based on the death of Terri Schiavo. Everybody has been weighing in on the controversy. Here are a few places where you can read more about it:

The Family Guy episode at hulu

Thaddeus Pope's Medical Futility Blog

Deacon for Life

WTSP news in Tampa Bay, Florida notes that the Schindler family is calling for Fox to drop the Family Guy program

From TampaBay.com

Wesley J. Smith at Secondhandsmoke

Press Release from the Schindler family at ChristianNewsWire

And for those of you interested, Family Research Council will host a panel on Terri Schiavo on March 31, the anniversary of her death, in DC. Robert Schindler, her brother (and now the title of full-time "pro-life" and disability rights activist) and other pro life voices will be there. You can find the link for a live webcast (11 am) here.

Who Speaks for the Catholic Church?

Hugh McNichol argues that all those organizations out there tacking "Catholic" onto their name are not the true moral voice of the Catholic church. The USCCB is. He notes the CHA and other organizations who endorsed the health care bill despite USCCB and other Catholic opposition. Yet, dissent in any church is not new. Who represents the millions of Catholics in the US, some say, is the millions of Catholics in the US - who are much more liberal on issues of gay marriage, women's rights, use of contraceptives, and yes, abortion.

An excerpt from McNichol's post is below. But what his article fails to note is this: What weight should Catholic theology, whatever theology the church decides on or we as a society choose to mark as "official," have in the laws that provide health care to a pluralistic society?

And does the over-sized participation of Catholic organizations (hospitals, long term and hospice facilities, HMOs) immediately determine that they have a right to discriminate against the multi-faith society they serve?

However, during the process of due diligence the Catholic Health Association endorsed the proposed legislation despite the reservations and the lack of approval of the United States Catholic Conference of Bishops. Additionally other groups of women religious, such as the Leadership Conference of Women Religious, endorsed the legislative package and clearly endorsed its ratification.

The question needs to be asked; are these organizations accurately reflective of the authentic teachings of the Catholic Church? For the most part the use of the term, “Catholic,” in the organizations title provides a somewhat tacit seal of approval which implies adherence to authentic Catholic teachings as proclaimed by the Magisterium of the Catholic Church.

However, such an application of the adjective, “Catholic,” does not always hold true to the organizations purposes and objectives. The Catholic Health Association for example is an organization that offers a loosely held confederation of health facilities that were formerly initiated and managed by religious communities. While the facilities operate under a general charter that embraces the “Spirit of Catholicism”, there is nothing in their charter that makes them answerable to the United States Catholic Conference of Bishops as it relates to their operating policies and procedures. In effect, the CHA is actually a trade organization that represents the interests of health care organizations that were formerly run by religious communities of priests or religious.

The president of Catholic Health Association was present for the public signing of the health care legislation into law at the White House this week. Sister Carol Keehan, DC. Sister Carol Keehan is a member of the religious group, Daughters of Charity. She has indeed lobbied for many years for the passage of a universal health care package that safeguarded all American citizens, especially the rights of the poor and challenged groups in American society. Sister Keehan for years has worked in the health care field and has even been recognized for her achievements by secular organizations and even Pope Benedict XVI in bestowing the papal honor, Pro Ecclesia et Pontifice (For Church and Pope) Award. However, despite her personal achievements, the implied approval of the entire legislative package, now federal law placed the Catholic Health Association in direct contradiction and de facto in opposition with the American Catholic Bishops.

Understandably no legislation is perfect and there are many imperfections in the Obama Health Care package. The fact remains there can only be one unified voice that represents the United States Catholic Church and that responsibility resides with the American Catholic Bishops. While the American Bishops have worked consistently towards the goal of a universal health plan for all Americans with concessions made for Catholic beliefs, their voice was in fact not loud or strong enough to curtail other groups such as the Catholic Health Association or The Leadership Conference of Women Religious from usurping the mantle that rightly belongs to the United States Catholic Conference of Bishops.

The "Natural Law" Justification for Discrimination.

At the Catholic-right site Ignatius Insight, there's an interview today with J. Budziszewski, author of a new book titled The Line Through The Heart: Natural Law as Fact, Theory, and Sign of Contradiction and a professor of government and philosophy at University of Texas at Austin.

I post this because I'm often sloppy in my accusations of Catholic discrimination in health care, employment, and human rights. This interview - and perhaps this excerpt from it - shed light on the doctrine behind that discrimination, a doctrine that denies social change, scientific knowledge, and evolving ideas of human equality by preferencing learned prejudice and privilege.

Ignatius Insight: What are some basic ways in which understanding natural law can help Christians in addressing "hot button" moral issues such as "same-sex marriage" and abortion?

Budziszewski: Very few people know anything about natural law theory. Yet "in our bones" we all experience the reality of natural law, because it is rooted in our creational design, woven into the fabric of the human person. We can't help but notice certain obvious things about ourselves.

This gives Christians a certain advantage in conversation, if only we can learn to rely on it. Who doesn't see that life and innocence are good? Who doesn't know deep down that innocent life should never be deliberately destroyed? Who hasn't noticed that men and women need each other, that there is something missing in each sex which needs to be balanced by the other? Who isn't at least half-aware that marriage is the family-forming institution, the motor that turns the wheel of the generations, the only form of association that can give a child a fighting chance of being raised by a mom and a dad?

Don't start with what people don't know. Start with what they do know. Weave together reminders of the obvious.

Ignatius Insight: You write, in a chapter titled, "Constitution vs. Constitutionalism," that although we Americans aren't sufficiently on our guard about the Constitution's flaws, we don't sufficiently cherish what is good about it either. What are some of those good qualities, and how unique are they to the Constitution?

Budziszewski: In fifth grade, my teacher told the class that the Founders of our republic invented checks and balances. Thank God, that wasn't true. As I learned in later years, they were actually the beneficiaries of more than twenty-three centuries of experience and reflection on the matter.

For revolutionaries, they were unusually conservative, and tried to squeeze lessons from every bit of learning at their disposal. They knew that no Constitutional republic can endure without a certain level of moral character, or without a certain respect for natural law, on the part of both statesmen and ordinary citizens.

On the other hand, they knew that there is never enough virtue or wisdom to go around, so they took additional precautions as well. Besides providing for checks and balances, they established courts; they refused to concentrate all powers in the same set of hands; they allowed the population to select their own representatives; and they tried to make sure that no single faction would ever be able to dominate the government.

Ignatius Insight: Modern liberalism claims to be all about toleration, equality, and freedom. Yet it seems to be increasingly intolerant, unfair, and controlling. What are some of the essential flaws with modern liberalism that lead to such a paradox?

Budziszewski: Virtue requires the exercise of judgment. The virtue of courage, for example, isn't just about suppressing fear, but about suppressing it at the right times and for the right reasons. If a fireman dashed into a burning house to save the pencil sharpener, we wouldn't call him courageous, but rash and witless.

In the same way, the virtue of toleration isn't just about putting up with bad things, but putting up with certain bad things in certain ways for the right reasons. We ought to tolerate disbelief in God, because faith, by its nature, cannot be coerced. But if someone thought we should tolerate rape and murder, we wouldn't call him tolerant, but foolish and wicked. Do you see the paradox?

In order to know which bad things to tolerate, we must judge well about goods and evils. Liberalism, unfortunately, denies this. It redefines tolerance assuspension of judgment about goods and evils. Here enters a second paradox, because it is literally impossible to suspend all judgment about goods and evils. For example, there is no morally neutral way to define marriage. Laws that conceive it as monogamous put polygamy at a disadvantage; laws that conceive it as polygamous put monogamy at a disadvantage; and laws that attempt to be open to both monogamy and polygamy conceive it, in effect, as polygamous.

The way so-called liberal tolerance actually works is that it condemns the moral judgments of non-liberals, but enforces its own moral judgments by pretending that they are not judgments. This is really a disguised dictatorship.

How We Define Death And The Future of Hospice.

Larry Beresford challenges the latest meme that hospice patients have declined in number recently. He notes that, among others, Tim Cousounis at Palliative Care Success and the Urban Institute's Howard Gleckman, who wrote a recent article for Kaiser Health News, have examined hospice enrollment and concluded the same thing. It is in decline.

The reasons they cite are varied but predictable: a bad economy makes doctors hesitant to refer profit-generating patients to hospice where the income derived from costly curative treatments naturally declines; Medicare rules require that a patient have less than 6 months to live before going into hospice and sometimes patients, particularly chronically ill ones, live beyond that time frame, a situation Medicare would like to avoid; and of course, the constant challenge of image that hospice faces as a place where one goes when they have "given up" continues to prevent ever-growing enrollment.

From Beresford's latest blog post:

I contacted a couple of leading hospice executives to ask them if the declining enrollments trend is true. One said that hospice patient census fluctuates up and down for all sorts of reasons, but that his agency's is up, after a sharp drop in 2008. But Samira Beckwith, CEO of the highly successful Hope Hospice and Palliative Care in Fort Myers, Florida, responds, "I think that everything [Gleckman] says in his article is true." One of the problems, she says, is that America's hospices still have not successfully communicated the idea that hospice care means "living" as fully and as well as possible until death comes. Instead, Americans have learned a little bit about hospice and believe it means "they have to die really soon if they say yes."

The problems of misunderstanding, misconceptions and mistrust of hospice care by people confronting hard choices at the end of life have been around throughout the history of hospice in America, even as the number of people receiving hospice care has steadily grown, up to 1.45 million in 2008. Physicians' reluctance to bring up the "H" word with their terminally ill patients has been well-documented. The second-guessing of hospices' enrollment decisions by Medicare has also intensified recently, but is not a new phenomenon. A similar round of government scrutiny occurred in the mid-1990s. And still the trends of the number of hospices, number of patients served and total Medicare outlays have pointed steadily upward since the first U.S. hospice opened in 1974 and since Medicare began paying for hospice care in 1984.

Beresford's conclusion is that perhaps this ebb in enrollment is really a reflection of market capacity:

The MBAs who run fast food or pharmacy chains are taught that when your company or your industry stops growing, it is already dying. But is that the right model for a service designed to promote compassionate, individualized, quality of life-promoting care for dying patients and their families? Shouldn't hospice's goal be to offer a meaningful option to all those who might need it and want it, and who might qualify, according to the rules of those who would pay for it, as being terminally ill -- rather than just continuing to grow? And if there is a current decline in referrals, given the recent proliferation and rampant competition of mom-and-pop hospice providers, particularly in certain metro areas and in the states of Alabama, Mississippi and Oklahoma, perhaps what's happening now is what the economists might call a necessary market correction.

I tend to disagree with Beresford and here's why: hospice is really the only option for patients who wish to die at home and so, as long as statistics continue to show that a majority of Americans wish to die at home (80%) and that most continue to die in facilities (75%) there's room for hospice to grow.

Whatever strides the hospice community has made in the past three decades or so of convincing society that the patient can decide where they die (and increasingly, when), the prevailing institutions in our culture - the church, the medical industry, and the state - haven't done much to change the tone of discussion about death. Only in Oregon, where the state population has had a long and in-depth conversation about end of life care (primarily because of the successful initiative to legalize assisted suicide) is there a more sophisticated understanding of end of life care options. I suspect that, as statistics in 2007 showed, that Oregon continues to lead the country in hospice enrollment. A couple of other factors that are working against hospice enrollment:

1. The rise of "pro-life" opposition to end of life choice (as conveyed through fear of "socialized" medicine, removal of artificial nutrition and hydration, end of life care planning (DNR, living wills, medical proxy designation), and aid in dying) and simple statistics that show the devoutly religious are more inclined to seek aggressive, futile care at the end of life are only one front that prevents society from viewing hospice as a healthy, life-affirming choice.

2. The medical industry has absolutely no incentive to direct terminal patients to hospice. Doctors are entrenched in a culture that, as Joanne Lynn says, puts patients on a "glide path" that involves aggressive treatment until death, as though death is a "failure" of medicine that can be cured. Doctors have only begun to be trained in medical schools for end of life care discussions (and continue to not be reimbursed for the necessarily lengthy discussions); palliative care is growing but still in its infancy; doctors tend to grossly over-estimate the time a patient has before death (hence delayed and briefer hospice enrollment); aggressive care is revenue for medical institutions and doctors; the conservative AMA and other medical associations (with the exception of many nursing organizations) have resisted society's call for greater improvements to end of life care. As well, advancements like 911, CPR, and the ability to lengthen a patient's life have prevented serious discussion about "quality of life." "Doing everything we can" to save a patient is the default, whether it lengthens the patient's life or keeps them comfortable - or not.

3. As we've seen during the year-long health care debate, the state has done little - either at the state or federal levels - to promote or legislate sound end of life care laws. I can think of only a handful of state laws that promote end of life planning. Veteran's Affairs, the largest health care provider in the US, has made commendable, great strides in meeting patient's needs and wishes in the last months of life but at the end of last year we saw them come under attack for distributing a planning guide, then termed the "death book." This noise, however illegitimate, makes institutions, health care providers, and doctors hesitant to discuss these issues.

In essence, the media and society have allowed fear-mongering and inaccurate accusations to shut down the end of life discussion.

The entire non-sensical circus that stemmed from the health care debate - death panels, the state's gonna euthanize you, etc. - has had an effect. The environment we're in at the moment (a political battle that has less to do with patient care than politics) has had a dampening effect on legislative efforts to enforce good end of life care planning.

The powerful Catholic church, a strong opponent of removal from ANH and of assisted suicide, is in a position where they must articulate nuanced and complicated arguments for hospice (an organization founded by the Catholic Cicely Saunders and long affiliated with the Catholic church) if they want to support hospice at all. For their political purposes, it is much better to push "all life is sacred" than "you're bound for a better place," both rhetorical constructs that sound true enough but work to As well, the church is firmly under the influence of a staunchly conservative leadership right now. And, as the second largest operator of hospitals in the US, they too have an interest in keeping patients in hospitals, receiving aggressive care. Their force and influence was proven during the health care debate.

And lastly, death just isn't what it used to be. Death used to mean the almost simultaneous end of a heart beat, breathing and brain function. In the past 30 or so years medicine has figured out how to maintain the first two indefinitely. And brain function, as we've seen with the cases of three young women - Karen Ann Quinlan (1985), Nancy Cruzan (1990), and Terri Schiavo (2005) - is increasingly considered not a suitable qualification for death.

But there is hope for hospice. Baby boomers are increasingly greying and, as they have changed every other institution their generation has moved through, end of life care is bound to be altered by their increasing need of it. As well, our health care system is not equipped for such a large influx of elder patients. The threat of economic destruction should be enough to push US society and government to reconsider how we care for those who are dying. Hospice will play a vital role in that reconsideration.

Connecticut Seeks to Define Assisted Suicide.

On Monday the Connecticut courts began examination of the laws forbidding assisted suicide. A case that seeks to determine aid in dying as separate from assisted suicide has been brought by two doctors in that state:

On Monday, judges will begin deciding what suicide means or dismiss the case on whether state law applies to doctors who help terminally ill patients die.

Two doctors and end-of-life advocates filed a lawsuit filed to get some clarification on the state's ban on assisted suicide and hope it prevent second-degree manslaughter charges for doctors who prescribe medication to help patients end their own lives, the New Haven Register reports.

Fairfield doctors Gary Blick and Ronald Levine regularly care for the dying, according to court papers and said they said fear of being prosecuted stopped the doctors from giving dying patients medications that would aid a peaceful death.

Compassionate Choices is also part of the lawsuit, siding with the doctors.

The state is working to convince the judge that the issue of assisted suicide is best left to the legislature. It's the same route the Montana state attorney took in that case last year.

More info From the Hartford Courant.

WTIC provides some background on the suit, noting the involvement of the Connecticut Catholic Conference:

Separately, the Connecticut Catholic Conference asked the judge to become a party to the lawsuit. The judge has yet to rule on that request.

Connecticut Catholic Conference lawyer Lorinda Coon said the lawsuit is a backdoor effort to legalize doctor-assisted suicide in Connecticut.

The Catholic Church opposes suicide.

From the Christian site LifeNews, an interesting quote from Perry Zinn-Rowthorn, associate attorney general, that points to the religious opposition against aid in dying, linking it to abortion. As well, the site calls the doctors pro-euthanasia:

Zinn-Rowthorn also pointed to a measure in the state legislature that attempted to legalize abortion that had 14 pages of regulations and safeguards and warned that overturning the assisted suicide ban would lead to a free-for-all targeting the terminally ill and elderly.

"We don't have any of those safeguards," he said, according to the newspaper. "It would be dangerous, from a public health policy (standpoint), to issue this type of sweeping public policy change by declaration."

Attorney Daniel Krisch represented the pro-euthanasia doctors and argued the state should allow people to make their own decision about whether to get help from a physician to kill themselves using lethal drugs.

"Judges aren't supposed to legislate ... are we really asking the court to do that here?" the judge asked Krisch.

But by far the most interesting aspect of this suit is the way the Connecticut Catholic Conference is trying to work as co-defendents of the suit by petitioning to team up with the state. The church has a new boldness since their successful efforts during the summer to pass the Stupak amendment. In other areas around the country, they continue to fight patients' rights by taking over hospitals and ending reproductive services.

These and other instances of increased Catholic conservatism are strongly contrasted against their challenges last week, noted by Elissa Lerner at TheRevealer.

This motion to intervene has yet to be decided on but you can read the motion here.

And you can find all the briefs and additional information about the suit here.