The GOP Candidates and Terri Schiavo

In a recent debate in Florida, the GOP presidential candidates--all quite possessed with desire to secure the evangelical and Catholic vote--had a chance to take a swipe at end of life issues, via a question regarding the case of Terri Schiavo. Florida is the state where Schiavo resided until her death in 2005 and where a district court judge (appointed by a Republican) told the Attorney General, the sitting president, and Rick Santorum to bugger off.

While much of the media commentary after the debate simply recorded what the candidates said, few have debunked the meaning or intention of their statements.

Rick Santorum told the audience:

"I called for a judicial hearing by an impartial judge at the federal level to review a case in which you had parents and a spouse on different sides of the issue," said Rick Santorum, a U.S. senator at the time. "And these were constituents of mine. The parents happen to live in Pennsylvania, and they came to me and made a very strong case that they would like to see some other pair of eyes, judicial eyes, look at it.

"And I agreed to advocate for those constituents because I believe that we should give respect and dignity for all human life, irrespective of their condition," Santorum said.

Rick Santorum was very involved in the Schiavo case. Schiavo's parents did petition Santorum for support. They also initiated a media blitz that is still widely recalled today. The then-Pennsylvania senator was strongly behind government intervention into the case, despite his down-playing of that during the debate (most likely because the Republicans have ludicrously put the "keep government out of health care" on the Obama Administration's health care bill).

A "pro-life" Catholic who received the ultra-conservative FAMiLY LEADER endorsement in Iowa, has been vocal about his support for Vatican-led efforts to end abortion even in cases of rape and incest and to end the legalization of aid in dying. In keeping with the Schindler family's belief that Schiavo was "disabled," Santorum would most likely push efforts to support these beliefs because, as he has stated, his version of God's law defines human rights. Santorum's version of religious freedom--and that of all the candidate with the questionable exception of Ron Paul--allows for the "pro-life" motivated regulation of medical procedures.

Gingrich got a couple of issues mixed up. He compared the rights of civil patients to those of death row prisoners:

"Well, look," Newt Gingrich said. "I think that we go to extraordinary lengths, for example, for people who are on murderer's row. They have extraordinary rights of appeal. . . .

"It strikes me that having a bias in favor of life, and at least going to a federal hearing, which would be automatic if it was a criminal on death row, that it's not too much to say in some circumstances your rights as an American citizen ought to be respected," Gingrich said. "And there ought to be at least a judicial review of whether or not in that circumstance you should be allowed to die."

Gingrich mistakenly focused on the judicial proceeding in the Schiavo case. By the time Santorum and Republican lawmakers got involved, the judicial cases had been decided. What kept them going was the Schindler's and their allies unwillingness to comply. They kept appealing, then went to federal lawmakers and the media.

Paul answered:

I find it so unfortunate, so unusual, too. That situation doesn't come up very often. It should teach us all a lesson to have living wills or a good conversation with a spouse. I would want my spouse to make the decision.

Apparently Paul doesn't read Thaddeus Pope's blog where related cases are constantly featured. I also suspect that Paul doesn't know that there are an estimated 100,000 persistent vegetative state patients in the US at any given time. But his answer essentially repudiates what happened with Terri Schiavo.

Perhaps fully understanding that public opinion is in favor of patients' right to medical self-determination (polls in 2005 showed that the Schiavo fiasco was highly unfavorable to most Americans), legal services companies didn't lose the chance to offer their assistance with advanced directives and living wills in the wake of the GOP debate. Republican presidential candidates should pay attention to what end of life issues does to their polling numbers, particularly because their constituents tend to be old and white, the very same demographic willing to pay close attention to these issues. Choice at the end of life isn't as laden with issues of sex, guilt and shame that reproductive choice is.

For more on the debate and candidate's answers about end of life issues, go to GeriPal blog. I've written directly or indirectly about the Terri Schiavo case here and here.

I Told You So: Catholic Church Comes After Catholic Bioethicists

Cross-posted from The Revealer, a publication of The Center for Religion and Media, NYU.

I shouldn’t take any credit for predicting the actions of the most predictable institution on the globe, but I’ll take it anyway. I made the case at The Nation last week that the USCCB’s recent statement on aid in dying would lead to broader crack-downs on end of life rights, privacy, and awareness. I was right. According to a new report at Crisis Magazine and a press releasefrom the bishops today, they’ve targeted Catholic professors at four universities: Georgetown, Marquette, Santa Clara and Boston College. How did the bishops identify the academics they wanted to discredit? Writes Patrick J. Reilly at Crisis:

The professors’ efforts came to light during a Cardinal Newman Society investigation in 2005, following news reports of a legal brief filed by 55 bioethicists in opposition to “Terri’s Law,” a Florida measure that empowered Gov. Jeb Bush to ensure that the comatose Terri Schiavo received water and nutrition. As reported in “Teaching Euthanasia,” an exclusive report in the June 2005 issue of Crisis, multiple professors at Catholic universities had taken positions on end-of-life issues that seemed to conflict with Vatican teaching.

That’s right. Conscience aside, if you don’t exactly teach–or even in your personal life espouse– the Vatican line, you’re not Catholic. And it’s a seething mission among Catholic Church leadership to reign in not only Catholic bioethicists and professors but also Catholic hospitals. Only two years ago, the USCCB changed the Ethical and Religious Directives that are used to manage all 625 of their hospitals to limit a patient’s ability to be removed from artificial nutrition and hydration.

These actions are a direct response to the Terri Schiavo fiasco — which I’ve written about at Religion Dispatches and AltNet — and the Church’s desire to more directly guide health care policy in the US. The USCCB is still smarting over dissent of nuns and the Catholic Health Association during the recent health care debate. By rooting out dissenters, they hope to present a more unified voice on issues of the body.

Who’s their next target? It’s hard to say. While the church cleans out universities, hospitals, agencies and schools, “pro-Life” organizations prepare their on-the-ground election-time efforts and renewed pressure.

The Catholic Church well knows that even a statement addressing “assisted suicide” will serve as a political map for “pro-life” activists and their allies who have long seen “euthanasia” as one item on their platform. Think legislation governing advanced directives (already moot at Catholic hospitals if you’ve got a feeding tube, where a webwork of conscience clauses prevents them from complying with state and federal laws), hospice and palliative care regulations, inheritance laws for families of suicides, drug regulations….

I hope Church leadership is overreaching. While their fight against abortion is aided by the fact that women’s reproductive rights have been shamed and ghetto-ized since time began, seniors vote. And the US population resoundingly supported the Florida decision in 2005 to remove Terri Schiavo’s feeding tube.

Yet, the Church is particularly skilled at over-representing its influence and voting base. Again and again, health care rights for women have been bargained away with deference to the Church. Why not seniors’? Neither party seems willing to press for a meaningful Patients’ Bill of Rights or real health care reform. And the obstacles to nuanced conversation about death are myriad; they include an uninterested, misinformed, or easily-distracted press.

Whether you think aid in dying should be legal or not, whether you abide by Catholic doctrine or the light of the moon, you should still question the health of a democracy where a church’s laws dictate the actions of the pluralistic societal body.

Cross-posted from The Revealer, a publication of The Center for Religion and Media, NYU.

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.

UK Catholic Medical Association Goes After Palliative Care

The "double effect," supported by the American Medical Association, states that a doctor may prescribe pain medication to a dying patient in doses that are lethal because the intention of the doctor is to relieve pain, not end the patient's life. Palliative medicine, the specialty field that focuses on ways to alleviate pain, is often held to account by opponents of assisted suicide because of what fails to be a "bright line" during the process of dying. How much medicine is too much? Who decides? What if the patient has no advanced directive? Would they want to be in pain or to life a few hours or days longer?

A story in Saturday's The Underground, a UK publication on "Pop Culture from a Christian perspective" quotes the president of the UK Catholic Medical Association (and a lot of excerpts from the U.S. based LifeNews) on the unfounded accusation that "mercy killing" is rampant in that country. A clip from the article, below. Note the muddling of end of life issues by confusing palliative care, hospice, assisted suicide and prevalent Catholic teaching on suffering, along with a restatement of the U.S. case of Terri Schiavo:

One reason for the occurrence of euthanasia, Walker told Scottish Catholic Observer, is that “The standards of medical ethics and of interpretation of existing legislation appear to vary greatly around the country and from one organization to the next, even in the same local area.”

Misuse of LCP

Another reason is the misuse of the Liverpool Care Pathway, which was developed in the 1990s at the Marie Curie hospice and royal Liverpool Hospital, so that palliative care for end-of-life patients could improve, the Scottish Catholic Observer said.

The LCP provides criteria that must be followed before ending life-sustaining treatment and applying palliative care, LifeSiteNews said. However, reports have indicated that LCP has been used in the cases of people who were not dying, such as dehydrating someone to death on the grounds of LCP.

Walker said, “If it is used out of context, then it could be used to the detriment of patients e.g. a patient comes into a resuscitation bay, and it is not always clear if a condition is acute and can be treated,” LifeSiteNews reported.

A recent report on crematorium records showed that 23% of all deaths in one city in the U.K. were people put on LCP without any definite diagnosis of their stage of life, LifeSiteNews said.

LifeSiteNews mentions the case of in the U.S. of Terri Schiavo, who was not dying, but who was withheld hydration, as an example of euthanasia. However, if a person is “actively dying and/or is unable to assimilate H & N, [t]hat person is actually dying and the provision of H & N provides little to no benefit and may cause suffering.” In such case, it would not be euthanasia.

Attempting to Make Another Terri Schiavo

In his weekly email Michael Cook at BioEdge asks if a 58 year old grandmother, a legal immigrant from Rwanda ineligable for Medicaid, may be the next Terri Schiavo. Rachel Nyirahabiyambere is now "comatose" after a stroke; her court-appointed guardian has chosen to move her from the hospital where she was initially receiving treatment to a home nearby. Her feeding tube has been removed. The hospital was unable to come to an agreement with the woman's children about her path of care. Cook writes:

It’s always best to wait for both sides of a story to emerge. But a New York Times report makes Georgetown University Medical Center and the US health system look quite heartless. After the children of a brain-damaged Rwandan migrant without health insurance could not pay for hospitalisation or nursing care, her feeding tubes were removed and she is slowly starving to death in a Maryland nursing home.

There will certainly be further developments in this breaking news. Not only is it a case study in medical ethics, but it will also give ammunition to opponents of President Obama’s healthcare program. They will surely use it as an example of what “death panels” could do. Stay tuned.

I don't hold out Cook's hope, primarily for these reasons:

- Neither Cook nor the New York Times parse the meaning of PVS, a diagnosis that has been challenged by everyone from the Catholic Church to the Terri Schindler Schiavo Foundation to Belgian scientists to pro-life organizations hoping to shape end-of-life practices. PVS typically means brain dead. While the diagnosis allows room for those who still have an semi-active brain stem (which may result in some physical function), it means there is no chance for recovery and yet, thanks to artificial nutrition and hydration (ANH), a surgically inserted feeding tube, the patient can live for many years, or decades, even if weened from a respirator and defibrillator. Hoping for a recovery from PVS is like hoping for Jesus to perform a miracle. There are statistically no cases of a patient "waking" from PVS.

- The public has shown a more sophisticated understanding of what "starving to death" means. The case of Terri Schiavo proved that the public was willing to think more critically about the removal of ANH. There is no proof that unconscious or comatose patients experience any pain from ANH removal. In fact, stopping eating is a natural aspect of the dying process. I don't mean to insinuate that Ms. Nyirahabiyambere couldn't "live" for another many years were she to receive constant care and food and hydration via a tube. But that her dying process was interrupted by artificial means, rendering her in a state that requires constant medical intervention, is not lost on the public.

- Ms Nyirahabiyambere is a legal resident of the U.S. Hopes that her race, nationality or lack of insurance will do anything other than bolster calls for universal health care is misjudging the constituents who usually get behind "pro-life" crusades

- Terri Schiavo, and before her, Karen Ann Quinlan and Nancy Cruzan, became high-profile cases because they were all young women whose beauty, youth and potential - particularly when displayed in pre-incident photos, say, from high school year books - could engage a broad audience. The crass media beast is less servicing of grandmothers, black at that. Despite the fact that Ms. Nyirahabiyambere comes from Rwanda, a focus of media attention and U.S. aid since the genocide in 1994 (after which the patient and her family came to the U.S.), that, dare I say, paternalistic humanitarian focus has waned.

- There are thousands of PVS patients in the U.S. at any given time. Surely, those wishing to focus on PVS and removal from ANH can find a better case to pull heart strings. Again, I say this not to denigrate this patient but to recognize the makings of a media blitze like Schiavo's.

- It's not 2005. Discussion of end of life care, patients' rights and how we die are more broadly accessible. I don't underestimate the public's willingness to sentimentalize the dying process but I also think that the political climate is such that, as a culture, we are better versed in what medicine can and can't do. As Andrea Sloan, the court-appointed guardian for Ms. Nyirahabiyambere is quoted in the New York Times:

“Hospitals cannot afford to allow families the time to work through their grieving process by allowing the relatives to remain hospitalized until the family reaches the acceptance stage, if that ever happens,” Ms. Sloan said in an e-mail. “Generically speaking, what gives any one family or person the right to control so many scarce health care resources in a situation where the prognosis is poor, and to the detriment of others who may actually benefit from them?”

It's unfortunate that Ms. Sloan frames the conversation around money, what the medical industry will or won't pay for. Rather, the issue of Ms. Nyirahabiyambere's right to die without invasive medical procedures is ethically more paramount; the hopes and desires of her family, as with all of us attending a dying loved one, are not enough to change a patient's outcome, to keep them with us any longer.

For more, read Thaddeus Pope a Medical Futility Blog.

"The End" Special Issue by Scientific American: Organ Donation

Scientific American editor, Mariette DiChristina, writes in her introduction to September's special issue that the concept, "The End," had been picked up and put down in their offices for years because of "the difficulty and possible discomfort about some of the topics we wanted to cover."

I can't speak for SA's regular readers, but DiChristina needn't have worried. The issue is a treasure trove of intriguing questions and answers, ones too important and timely to be ignored: Does acetaminophen (Tylenol) reduce feelings of rejection and paranoia? (I say let's do a test study on the Tea Party.) What are the chances the world will end by asteroid impact? (1 mill in next 100 years) Runaway global warming? (2 in next 200 years) Killer pandemic? (2 in the next 30 years) What are the four stages of body decomposition? (Fresh, Bloat, Active Decay, and Dry); What cultures are disappearing?; What scientific discoveries should rightly come to an end? (Daylight savings time, the space shuttle, landfills, teflon, among others); And how much time is left for glaciers? Gold mining? (20 years) Time? (Yes, how much time does time have?)

But the articles that most speak to my own writing interests -- patients' rights, primarily -- are great too. Thomas Kirkwood addresses why we can't live forever (pp 42). SA's various advisory board members look at anticipated reproductive trends in the next decades ("What Comes Next" pp 92). And Robin Marantz Henig contributes a brief but spot-on look at organ donation ("When Does Life Belong to the Living?" pp 50) and the contested definition of death. She writes:

To address this issue [establishment, with the advent of organ transplantation, of "dead-donor rule" in 1960s to prevent organs from being taken from the living; in essence, the definition of death], a blue-ribbon Harvard Medical School panel met in 1968 and arrived at the concept of "irreversible coma," more commonly known as brain death. By this term, they meant that the cerbral cortex -- the seat of consciousness, language, empathy, fear and everything else that makes us human -- is irreversibly destroyed. Destroyed, too, is the brain stem, which orchestrates such basic physiological functions as breathing, heartbeat and homeostasis. Modern medical machinery may keep the body oxygenated, but the person inside is gone.

The definition of death has been reviewed periodically since then by groups of bioethicists, and although the terminology sometimes changes, the substance remains basically the same. The concept of breain death (often knows by the more modern and clinical term "the neurological standard of death") has since become encoded into law in nearly every state in the U.S. Ethicists and the law agree: a person whose cortex and breain stem are destroyed has ceased to be alive, even if the body is warm and pink. That body is no longer considered a person. Instead it is a heart-bearing cadaver.

All this means quite a bit to the hundreds of thousands who wait for years on organ recipient lists. And it means a lot too to "pro-life" activist groups who would like to remove decision-making from individuals and family members burdened with terrible choices in dire situations.

Think Terri Schiavo (and the Terri Schindler Schiavo Foundation) or Wesley J. Smith (a staunch, vocal advocate for the Schiavo family and removing such decisions from doctors or patients who wish to determine their own end of life care) or the United States Conference of Catholic Bishops (which as recently as November changed the guidelines in all 624 of the U.S. hospitals they oversee to leave the question of removal from artificial nutrition and hydration up to hospital management and not the patient or family, living will or advance directive be damned).

Citing the three cases in Denver between 2004 and 2007 in which the Pittsburgh Protocol (waiting a full two minutes after removal from life support before removing organs from a "brain dead" patient, despite risk of organ deterioration) was violated for the sake of needy infants, Martanz Henig makes a fascinating point in her article that notes the root of the medical profession's tip-toeing around the definition of death. Robert D. Truog of Harvard supported the doctors' (and the hospital ethical board's) decision, saying that the "dead donor" rule was unimportant when considering whether an injured person's recovery was impossible and what the family consented to. But:

...Arthur L. Caplan of the University of Pennsylvania, recoiled at Truog's suggestion, mostly because of how it would be interpreted by an already skittish lay public. "We ought not underestimate public unease," he said. "Making people wonder if you're going to cut corners on their care in order to salvage organs from them is a very dangerous area to be in."

In other words, altering the "dead donor" law to allow, say, waiting less than two minutes, would deter the (already wary) population from signing up as organ donors. The number of people each year who die from lack of viable, transplant-ready organs (currently about 7000) could increase because of a fear of doctor's ethics regarding the definition of death. (See my post here some months ago regarding a New York Times article on organ donation which points out how rather arbitrary that two minute designation is.)

While I think that Caplan's fears are legitimate, I'm more interested in asking why. The medical profession has a long history of discomfort and distrust with minorities and females, particularly African Americans. Often this distrust, as with abortion and end of life care, is fueled by political motivation ("black genocide") or exceptions that don't prove a rule (Terri Schiavo again; there are 30,000 patients like Schiavo in our hospitals any given year). In other ways, history has proven that the medical profession preys on patients: futile care, aggressive elder treatment, lack of research into disease causes (see Barbara Ehrenreich's Cancerland) or lack of discipline in telling patient's the truth (because, you know, they can't handle it).

But this distrust should not be used as an excuse to let thousands of people die, to cruelly prolong the lives of the "heart-beating cadaver." I'm not saying that fear isn't real, I'm saying that it results from a lack of bodily autonomy. As recently as the 70s, women would go in for a simple biopsy of a breast lump and come out with full mastectomies. This kind of patriarchal, "doctor knows best" is a wound that the industry has brought on itself. It exists. It is real. But it should be combatted -- not by playing into it with arbitrary definitions that become arbitrary rules but by addressing it candidly. For the sake of patients, a frank discussion about the way death has changed over the past 40 years must be had.

Inconsequential Methods of Execution.

A sobering post from San Quentin, CA by KTVU.

But first an aside: How we kill is never inconsequential. My interest in death row and executions clearly (to me) coincides with my interest in end of life care. The state sanctions killing, whether we're declared brain dead and reside in a hospice facility in Florida, or have a PEG tube inserted when we are 6 months from death in an elder home, or whether we've killed a woman thirty years ago. I despise liberal arguments for consistency -- against inconsistency and hypocrisy -- deeply. Yet, our society tends to get flummoxed over the issues of death in any of these situations and to operate from bifurcated trajectories given the "quality" of life that's being contemplated. I've never lost a loved one to violent, death-row-worthy crime but I have sat at the bedside of someone I loved who was dying. If killing is killing, as "pro-life" and disability activists say, where is their work to make the state accountable for death-row executions? If judgement is God's, and sin is his to determine, why shouldn't humane execution for a civilized people be something more than "inconsequential"? And if we're so certain of the exactitude of the judicial process, how can we ignore the exonerations that DNA testing has brought to light? If we don't see our judicial system as class and race biased, why are most prisoners black and poor young men? Why are the headline-grabbing persistent vegetative state patients, like Terri Schiavo and Nancy Cruzen, all young white females? We smirk at Kevorkian biopics, yet exercise his same certainty when asserting our own convictions of right and wrong when ending lives.

And why don't we desperately want these answers?

California's new death chamber was completed one year ago, but the facility has never been used due to an ongoing battle over the methods the state would use to execute inmates.

Although 702 inmates sit on death row, executions are holding even. The last man scheduled to die was Michael Morales for the 1981 rape and murder of 17-year-old Terri Mitchell.

Two hours before Morales was to die by lethal injection, a federal judge effectively halted his execution and all those to follow until the state changed its execution protocols.

That was four years ago.

"The four years has been awful for the crime victims," said Nina Salarno Ashford of Crime Victim's United.

Crime Victims United is an organization that supports the resumption of executions in California.

"To see that something inconsequential has delayed justice...it’s just inherently unfair," said Ashford.

Michael Schiavo, In Danger.

I hope Michael Schiavo has a body guard because this deranged post by June Maxam at ever-more ridiculous North Country Gazette shows his address and tells him that he can "run but not hide." It sounds a lot like incitement of violence, calls Schiavo a "perp" and repeats his home address a number of times. I got the Dr. Tiller shivers just reading it.

There are no angels in this contest between two families that were once close. I'm certain that each felt they were doing the right thing, one for God, one for the rights of patients. However, it has escalated into an all out fist fight that includes a host of "pro-life" radicals who feel that ends justify means. The latest developments in the relationship between Schiavo and the Schindler family should give us all the shivers.

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.

Money and The Terri Schindler Schiavo Foundation.

Some have started to ask questions about the operation, funding, and name of the Terri Schindler Schiavo Foundation, founded by Schiavo's parents and two siblings after her death. Though Robert Schindler, Terri's father died last year, Bobby, Schiavo's brother, continues to work full-time as a "pro-life" or, under more recent billing, "disability" activist and speaker. While I think the Schiavo family is quite sincere in their purpose -- they still protest that their daughter and sister was "killed" -- their legitimacy as an organization and it's use of funds is perfectly within the public domain. Those who are encouraged to donate money to the foundation should first understand how their money will be used.

Here's a clip from an article at WTSP 10Connects, a Tampa Bay news organization.

In most recent IRS report that the Foundation filed for 2008, it shows the foundation took in $91,568 and paid Terri's dad Robert Schindler Sr., her brother Robert Jr. and her sister Suzanne Vitadamo $59,275, or 64% of the money they raised.

READ: Terri Schindler Schiavo Foundation 990 Tax Forms

Charity Navigator a respected Charity Rating organization says any charity spending more than 30 percent on salaries gets a zero rating. The foundation doesn't come close.

In the meantime, since the report was filed, the salaries have increased to $80,000 a year, but the Foundation says one salary is in arrears causing some family members to work without pay. Also since the IRS report was filed and Terri Schiavo's father died.

We stopped in to talk to Schindler's siblings after they referred us to their attorney David Gibbs, who first told us he would set up a meeting but then said there were scheduling problems. When we found both Bobby Schindler and Suzanne Vitadamo in the office, we were told they weren't available. That's when Bobby Schindler said we should direct our inquires to their attorney, Gibbs. Schindler said they just would rather work it that way.

Schindler didn't tell us anything, including how the organization spent $34,000s more than it collected in 2008; about the money it raised from a concert with country stars Randy Travis and Colin Ray, why as it told the IRS, the Foundation doesn't have a conflict of interest policy; and why it is using the name Terri Schiavo. A court document gives Michael Schiavo intangible rights to his wife's name.

Michael Schiavo says that means no one can use Terri Schiavo's name without him granting permission. He says he did that to protect anyone from exploiting Terri Schiavo name and now he has sent a letter telling the Foundation it is in violation of Florida law, and adds that it is unfortunate he has to do that or warn them they are making money off their deceased sisters to support their lives.

READ: Letter from Michael Schiavo's attorney

Meantime the Foundation's Attorney, David Gibbs sent us this letter saying "they are shocked and disappointed we would participate in attacking the organization under the guise of investigative reporting." Without seeing our story, Gibbs says "our attack on this well-respected foundation is unfounded and unjustified." Meantime Terri Schiavo's siblings won't answer any questions on camera.

READ: Letter from the Schindlers Attorney

And while they're not talking are making thousands of dollars from a foundation named after their sister who died embroiled in controversy and whose name continues to live in controversy five years later.

The attorney for the foundation maintains the high percentage of revenue going to salaries is because of the lack of money the foundation raises. Gibbs says the Schindlers are doing their non-profit work cost effectively and it should be viewed as an accomplishment. The Foundation also says the use of Terri Schiavo's name is proper because she is a public figure, and that Michael Schiavo has no right to challenge them.

What About That Advance Directive?

The Center for Practical Bioethics has a podcast with doctors Michael Green and Benjamin Levi on the status of the advance directive. Their discussion includes how the advance directive works now, how difficult it is for healthy patients to imagine future situations, how directives should serve as tools to discuss end of life care with family and doctors, and should evolve over time. It's an incredibly helpful podcast. You can listen to it here.

Have We Learned Anything for the Case of Terri Schiavo?

What has the case of Terri Schiavo taught us?

That's the question asked of Glenn McGee, the John B. Francis Chair at the Center for Practical Bioethics in a podcast, moderated by Lorell LaBoube at Practical Bioethics.

It's a quick 20 minute listen which raises some of the following points:

PVS is not curable; what does it mean to wait for a miracle?

Why was Schiavo's eating disorder largely ignored in the discussion? and isn't it ironic that the fight was for forced feeding?

There are 30,000 PVS patients in the US. Why did this case come to the fore?

We've learned little from the Schiavo case because the primary issues regarding ethics of indefinite artificial sustainment were largely skipped over.

Who pays for indefinite care?

Was the Family Guy episode that used humor to address Schiavo's condition too soon?

Advanced directives largely don't work because they are largely still unused.

Is indefinite (futile) care in line with our pragmatic, Judeo-Christian heritage?

Reports on the 5th Anniversary of the Death of Terri Schiavo.

Here are some links and commentary from yesterday:

Family Research Council has new "guidelines" for end of life care

Jason Poling, a pastor, writes for In Good Faith blog at the Baltimore Sun about the ironies of the Religious Right's demonization of Michael Schiavo while supporting traditional marriage.

Americans United for Life is justified in making up their own facts so long as it's for a godly cause

Steve Ertelt at Life News

North Country Gazette podcast link, with Bobby Schindler (ususal "murder" stuff)

Arizona Daily Star offers resources for those planning for end of life care

Psalm123 Blog "Martyr of the Culture of Death"

Bobby Schindler at Town Hall spinning Schiavo's death as "cruel bigotry" against the disabled

Stephen at Not Dead Yet

Minnesota Citizens Concerned for Life derides "quality of life" discussions

David Casarett, MD, at HuffPo, "As a palliative care physician, I was fascinated, amused, shocked and embarrassed, in more or less equal measure, by the myths that circulated about end-of-life care." And a clip:

And I was embarrassed that instead of engaging in a thoughtful dialogue about how we die, and how we should die, for several months we were immersed in a shrill shouting match about issues that bear no relation to the reality that my patients and I face every day. In short, as that public debate was unfolding, I felt very much the same way that I felt as the nation watched Terri Schiavo's story reach its conclusion in 2005.

And that reflection is ironic, because the advance care planning legislation that sparked the death panel debate was designed to prevent the sort of family disputes that made Terri's care so difficult. But what should have been an unobjectionable provision in the health care reform legislation quickly became mired in partisan rhetoric and outlandish rumors. A straightforward mechanism to promote choice and autonomy was quickly reframed as precisely the opposite. Looking back on those events, it's difficult to believe that we're any closer to an open dialogue about death and dying than we were five years ago.

In fact, a dialogue may be even less attainable now. As if the "death panel" label weren't destructive enough, recent health care reform discussions have linked end-of-life care to cost-savings and rationing. So whereas five years ago the public was afraid that family members might "pull the plug," now those fears have focused on Congress.

It's no surprise, then, that Congress has shied away from end of life care. As a result, advance care planning was never given the consideration it deserved in the Senate bill and eventually dropped out of sight. In fact, it's unlikely that we can expect any meaningful end-of-life care legislation from Washington in the foreseeable future. End-of-life care has proven to be too divisive, and too politically dangerous.

Bill Berkowitz on Five Years After Terri Schiavo.

Today marks the fifth anniversary of Schiavo's death. At Alternet, my sometime outlet, Bill Berkowitz summarizes the issue of Schiavo's death for us. Here's a clip:

"In the current debate over health care reform," Americans United's Rob Boston pointed out, "I see the Religious Right once again employing the same strategy: a barrage of lies, with no claim considered too outrageous to circulate. It started with Sarah Palin's 'death panels' and continues as the process winds down with a blast of increasingly desperate e-mails from groups screaming about socialism and government takeovers.

"The simple truth is this: The leadership of the Religious Right has become little more than a collection of toadies for the Republican Party, and their partisan masters have ordered them to stop the bill. Thus, no lie is out of bounds, no strategy is considered too base," Boston added.

As the fifth anniversary of Terri Schiavo's death approaches, her brother Bobby attached himself to a study published in the February issue of the New England Journal of Medicine related to brain activity in patients diagnosed as being in a persistent vegetative state. The Catholic News Service recently reported that "researchers in England and Belgium found that five of 54 patients in states of persistent unconsciousness showed distinct patterns of brain activity on a brain imaging machine in response to questions that required a 'yes' or 'no' answer."

"These results show a small proportion of patients in a vegetative or minimally conscious state have brain activation reflecting some awareness and cognition," the study concluded. "Careful clinical examination will result in reclassification of the state of consciousness in some of these patients."

Terri Schiavo's brother, Bobby Schindler said the latest New England Journal of Medicine study "underscores … why this dangerous and often mistaken PVS diagnosis needs to be stopped when being used as a standard to kill our most vulnerable."

Jon Eisenberg, had a more nuanced take. He told AlterNet that while "it seems fMRI could prove to be a valuable tool for either confirming or disproving a clinical diagnosis of PVS, … it's probably too soon to say for sure how reliable the technique will prove to be. But here's a tough question: If the only signs of awareness are in willful modulation of brain activity, what is to be done if the patient modulates his/her brain activity to give a "no" answer to the question "do you want to be kept alive?"

On the political front, the Orlando Sentinel's Mike Thomas recently reported that Marco Rubio, the young charismatic son of Cuban parents who is now the front-runner as the Republican Party candidate for the Senate -- running against Governor Charlie Christ -- recently accused Christ of having purposefully sat out the Schiavo affair five years ago. In a release issued in late February, the Rubio campaign "whack[ed] … Crist for not being tough on social issues like abortion," Thomas wrote.

The release specifically referenced the Schiavo case: "Crist also received criticism on the Terri Schiavo debate about where he really stood on a Congressional bill that would have let Terri's parents take their lawsuit to save her life to federal courts."

In Using Terri, Jon Eisenberg pointed out that the Religious right was "waging a state-to-state campaign to take away our personal autonomy rights -- in particular, the right to refuse unwanted medical treatment." One of the leaders of that battle is Father Frank Pavone, national director of Priests for Life.

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.

Blurring Fiction and Non-fiction in Medical Care.

Today WaPo's Ron Charles reviews Lionel Shriver's latest drag-you-through-the-truth novel, So Much For That.

The first part of the novel plays out while Terri Schiavo hovers on TV, with Republicans vowing to spare no expense to maintain her brain-dead body even as millions of conscious Americans are denied health coverage. Meanwhile, Glynis's treatment produces a double helix of hospital bills and insurance statements as bewildering as the cancer treatment itself. Shep is willing to spend whatever it takes to heal his wife -- every chapter begins with an updated statement from his dwindling Merrill Lynch account -- but what is the monetary value of a single life? What are another three months of pain worth?

And setting aside the novel's politics and economics, I've never read anything that made me so cringingly self-conscious about the way we respond to friends who are seriously ill. Granted, Glynis is a particularly unpleasant patient, angry and bitter about her feeble artistic career, but that only makes her more real. "Umbrage was her drug of choice," and she delivers a scathing diatribe on the culture of cheer that's built up around cancer treatment. She rages against "these nauseating speeches . . . the upchucking reminiscences . . . All this -- sentimentality!" Echoing Barbara Ehrenreich's similar complaints last year in "Bright-Sided," Shriver rips into the guilt-inducing support-group lingo: "hanging tough. Refusing to let go. Not giving up. Going the last mile. You'd think they were organizing a grammar-school sports day. . . . After all this military talk she now equates -- dying -- with dishonor. With failure. With personal failure."

Shep, meanwhile, notices "with an acrid taste in his mouth" that the initial pledges "to help in any way possible" are never followed by any actual assistance. "Their friends and family alike had poor emotional endurance," he realizes. "No parent had ever sat them down to explain that this is what you do and say when someone you at least claim to care about is deathly ill. It wasn't in the curriculum." If you've gone through this shocking evaporation of human contact, you know how true it is. When my daughter was born with severe brain damage 20 years ago, we were effectively ostracized by our community. My wife worried that we'd be overwhelmed by offers of assistance from fellow church members. None. Zip. One of our best friends told us later, "I sensed something was wrong, so I didn't call." But then as a friend of mine died last year across the street, I was too embarrassed to do anything besides send a brief note of encouragement. This is a novel that irradiates such sins of omission with shame.

As our chronic debate on health care reform drags on -- that hacking political cough that gets no better -- here is a novel that dramatizes what middle-class families are really suffering. "So Much for That" is a furious objection to watching the dream of health, financial security and old-age companionship wither and die. It's a bitter pill, indeed, but take it if you can.

What Is a Natural Death?

Elana Premack Sandler at Psychology Today asks her readers what they think about assisted suicide as she feels her way through the subject in the wake of a host of publicity. I appreciate her nuanced and open willingness to examine the topic, particularly when so many do make a snap-judgement about assisted suicide. I recommend you read her entire post and comment! But there's a point in one of her paragraphs that I want to jump off from. She writes:

Does assisted suicide undermine suicide prevention? "Obviously!" you might think. Working for a suicide prevention organization, and as a suicide survivor, I really wrestle with supporting idea of suicide - at all.
Since so many people who choose assisted suicide are suffering from incurable degenerative diseases, the cessation of pain - psychache or not - is very appealing. Just as I wish that people who are in extreme emotional pain did not have to experience such terrible pain, I wish the same for people in extreme physical pain. But, will a person who dies by assisted suicide experience more dignity and peace than they would have if they had died by natural causes?

Ok, maybe a quick point. Then I'll jump off. The recent report from the first year of legalized Death with Dignity in Washington state shows that most of those terminal patients who elected for DwD said their reason was autonomy. More so than fear of pain or existing pain. I'm always suspect of polls that ask people in crisis and distress to identify what the cause is. It's almost unfair to ask a dying patient to identify why they are ready to die. But nonetheless, a majority of patients said autonomy. End of point.

What I want to take up from the above paragraph is that tired but prevalent phrase: "natural causes." Once was a time when death meant the rather simultaneous cessation of heart beat, breathing and brain function. Those days are over. Medicine now can maintain heart beat and breathing almost indefinitely. That leaves brain function. As I noted yesterday, Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo proved that many, particularly those in the extreme religious right, oppose the use of brain function as a determining factor for death. This brings the term "natural causes" to a new definition.

All three women could eventually breath on their own. All had functioning hearts. Both functions were essentially resuscitated via CPR, or other techniques that shock the heart and lungs back to operation. Prior to the invention and widespread use of defibrillators, CPR, respirators, and even 911 in the early 70s these women would have died of their initial injuries. Their lives were, after resuscitation, prolonged via artificial nutrition and hydration and the battles over their lives stemmed from their family members attempting to remove them from ANH.

The prevalence of amazing, life-prolonging technological and medical advancements does extend American lives. This is a wonderful and miraculous thing. But it has changed how we die and what we now call death. Few deaths these days can be considered natural, however. It's time we reconsider the term and in doing so, start to talk about what death now means.

Georgia Bill Seeks to Make Artificial Nutrition and Hydration Obligatory.

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

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

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

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

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

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

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

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

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

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

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

Politics and the Persistent Vegetative State.

The big news in medicine this week is the anticipated release of a study, published in the New England Journal of Medicine, that looks at brain activity in persistent vegetative state patients, showing that in - let's admit - very qualified cases a patient shows adequate brain activity to respond to questions via brain scan.

This communication works accordingly: A patient who shows normal or close to normal brain activity is told to visualize two separate activities, playing tennis or walking around at home, as correlating to yes or no answers to questions. The patient's brain was then monitored for the proper response (activity representative of tennis or home) to six yes or no questions. One example cited that a patient "answered" 5 of the 6 questions properly. In other words, their brain, a majority of the time, acted out the activity associated with a yes or no answer in response to a question.

It's a very encouraging study, one that shows opportunity to "reach" patients who have heretofore been thought inaccessible, locked-in, in a coma or "brain dead."

A glimpse of the study and how it would be received was had in January when the media ran away with the story of Rom Houben, a Belgian man who was said to be "discovered" after 23 years in a coma. Steven Laureys, one of the primary writers of the study, has displayed some bashfulness regarding the initial overblown reaction to Houben's media attention. TV and newspapers overplayed the drama - no one could resist the feel-good "discovery" of a man thought to be brain dead, of a mother remaining hopeful for 23 years, of disabilities overcome to where Houben could type on a keyboard. Houben's means of communicating, however, have since been seriously questioned. Yet, Houben's story, however questionable, is one of hope and when it comes to caring for a loved one - for 23 years! - the hope that they are still "in there," is what keeps one going.

What the study is not is an indictment of current policy regarding the decision-making process for patients in persistent vegetative states. But politics are at play and the findings are being used to promote a particular agenda, with various politicized groups and noise-makers working to play it for their own purposes.

GeriPal has already commented on what the media interpreted the study to mean, citing the following headlines as examples of the exaggerated spin:

Take a guess though what the media headlines focus on:

*Scientists read the minds of the living dead (New Zealand Herald)

*Patients in 'vegetative' state can think and communicate (The Telegraph)

*Brain scan shows awareness in vegetative patients (BBC News)

*Brains of vegetative patients show life (LA Times)

*Study Finds Cognition in Vegetative Patients (Wall Street Journal)

These headlines are just wrong. They give the impression that all patients with PVS are aware and can communicate. In truth, this study showed that a minority of patients with PVS showed some signs of awareness, and those happened to only be in those who suffered from a traumatic brain injury (not from other causes such as anoxic brain injury).

As I noted earlier this week, using the example of Terri Schiavo, the media reports were rather over the top but consistent (despite their titles and spin) in their description of what ramifications the study had for patients like Terri Schiavo: None. Hers was an anoxic brain injury caused by lack of oxygen, not a traumatic injury as those who showed brain activity and response to the study's tests.

The media's objective is clearly to convey an attention-getting, emotional, sensational story of hope. Use the cultural ignorance of scientific studies to inflame the cultural divide. It gets ratings. Other's have another purpose.

Bobby Schindler, brother of Terri Schiavo, full time "pro-life" speaker, and co-founder of the Terri Schindler Schiavo Foundation, has long called for a reexamination of the persistent vegetative state diagnosis because he wishes to prevent removal from artificial nutrition and hydration of any PVS patient, despite their living will (advance directive) or the wishes of their medical proxy. At the foundation website today is a story that claims more tests should have been done on Schiavo before the court upheld her husband's wishes to remove her from ANH. It's a disingenuous position, a case of hope perpetuated too long, used only to prevent other patients from having a say in their medical decisions.

Then there's the conservative Discovery Institute Fellow Wesley J. Smith, amusingly called a "top bioethicist" by Catholic blogs, who was wrong about Rom Houben's media attention, too blinded by the report's ability to support his "pro-life" case to see the junk science parlayed by the media. Smith, a close friend of the Schiavo family, specializes in demonizing those who desire a science- and patients' rights based approach to end of life decisions as the "culture of death." Want to remove your loved one from ANH? You must be a killer. The judge in the Schiavo case? He wasn't using judicial precedent to determine who should choose Schiavo's medical options, he was, as Smith says, eager to let the bad people "kill" her:

"Indeed, when it was clear that Terri would be lying in bed for a year pending appeals, the family begged Judge Greer to permit sophisticated brain scanning that had never been used on her before," he recalled. "It couldn't have hurt her, and it might have shown something. But stubbornly, he refused. I will go to my grave believing the judge knew what he didn't want to know."

And then you have the Catholic Church, powerful, organized, rich in resources, motivated as the aid in dying movement brings end of life decisions to the forefront around the globe, to increase its efforts to oppose patient's rights.

In November the Church changed its Ethical and Religious Directives - which govern treatment of 1/5 of patients in the US - to prevent patients or their families from requesting removal from artificial nutrition and hydration. In fact, those who do not want the insertion of feeding or hydration tubes would now only be abided by when the Church decided.

The media may be looking for good ratings, but other constituents like the Schindlers, Smith and the Catholic Church are working for something much more nefarious: to take away your rights.