The Week in EOL News

In a recent article at The Catholic Sentinel, Richard Doerflinger, Deputy Director for the Secretariat for Pro-Life Activities continues to develop the church's argument against aid in dying by conflating it with assisted suicide and by citing disregard for the ill or disabled as causes for aid in dying's increasing support and legalization. (I interviewed Doerflinger about the church's new initiative to fight legalization of aid in dying in June.) From the Sentinel article:

The Oregon law carves out a class of citizens — those diagnosed with six months or less to live — and suspends statutes that protect them from getting help to kill themselves. For Doerflinger, it's like coming across two people about to jump off a bridge, one who has a diagnosis of six months or less to live. For one, society tries persuasion, mental health treatment and emergency intervention. But to the one who has a serious physical illness, Doerflinger explained, "We say, 'Jump. Can I give you a push?'" The issue, he said, is that our culture is uncomfortable with sickness and disability. "We don't see inherent dignity in people when thy have these conditions."

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The San Francisco Examiner has been covering the story of Hong Ri Wu, who is accused of killing two of his shop-owner rivals. Wu was determined unsound for trial and then he refused to eat. Local police officials, at the direction of Sheriff Hennessey took him to the hospital but the hospital refuses to put him on a feeding tube. The Examiner writes:

Hennessey insists his department has a mandate to provide for the safety of each inmate. But hospital officials have balked at force-feeding Wu, although spokeswoman Rachael Kagan declined to discuss Wu’s case specifically, citing patient privacy laws.

“As a hospital, we respect individual self-determination and include our patients in their health care decisions,” Kagan said in a statement. “When a patient is also in custody, that patient loses some rights, but not all of them.”

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Meanwhile, thousands of California inmates have resumed a hunger strike that is meant to draw attention to their inhumane conditions in that state's facilities. Prison officials are threatening "discipline."

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"Baby Joseph" Maraachli die this week. The child, born in Canada with a terminal illness, became a "pro-life" cause when the hospital there refused the family's request for a tracheotomy. The hospital deemed the operation futile. So Father Frank Pavone of Priests for Life and other Catholic and "pro-life" groups including the Terri Schiavo Life & Hope Network, raised the funds to have the child airlifted to the US. The first US hospital they sought care from refused, but a Catholic hospital took the child in and completed the procedure. After a brief stay in the US, Priests for Life then shipped the child and his family back to Canada. Pavone said the child and his family had, "fulfilled a mission from God." The case has caused some interesting fault lines to emerge that involve denominational health care, issues of futile care, the treatment of pediatric terminal patients, and, not least, within the Catholic Church regarding the finances of Priest for Life. Father Pavone has since been called back to his home diocese; the causes remain murky.

"Pro-life" groups have said that their objective was to allow the child to die at home, a statement that echoes both home hospice and aid in dying advocates, perhaps signaling broader acceptance that a home death is preferable to a hospital death.

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The death of Troy Davis was not the act of a faceless state against a potentially innocent man. Amsterdam News writes about the company that was contracted to oversee the execution, the same company that is contracted to provide health care services to inmates in prisons. For-profit companies are increasingly called in to provide inmates with care in prison settings, in part because the incarceration industry is just that, an industry, with states spending big money to manage their prison populations and high-powered lobbyists pressuring local law makers to "protect" their state citizens by being strong on crime. As well, particularly in the South, prison populations are growing exponentially older and require more health care services. But the challenges for CorrectHealth and other such health care companies operating in prisons is that they are increasingly under fire for unethical and illegal activities, including the use of illegally-acquired execution drugs. Drugs like sodium thiopental, which is part of a three drug series used to execute inmates. It's no longer in easy supply because Abbot Laboratories, its sole US manufacturer, has stopped making the drug. For a while states were purchasing sodium thiopental from the UK but drug officials there have cracked down on it's international export. This scarcity has forced US prisons to beg and barter with each other or to find illegal sources. Writes the Amsterdam:

It was Dr. Carlo Musso, who owns CorrectHealth, a for-profit company that provides what they call "cost effective" health care to prisoners, who managed the process. He does this work under the umbrella of another company he owns, Rainbow Medical Associates, which, according to the American Civil Liberties Union, is contracted by the Georgia Department of Corrections to do its executions.

While some may defend Rainbow Medical Associates as capitalism in action, Musso might find himself in a heap of trouble-of the legal kind-that could do more damage than the backlash from the Davis execution.

Earlier this year, the Southern Center for Human Rights filed a complaint against CorrectHealth, accusing them of illegally importing and distributing sodium thiopental, the drug they use in carrying out the execution of convicted felons.

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The Atlantic this week wrote about a new documentary that examines the "unique subculture of hospice volunteers as they contemplate their own philosophies of life and death." (h/t Scott Korb)

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The Guardian reports on a case in the UK that was brought by the family of a minimally conscious patient to remove her feeding tube. The family of "M" held that she would not want to be kept alive with a feeding tube, but the court did not decide in their favor, stating that her level of consciousness allowed that she may feel discomfort if removed. From the article:

The case raises deep existential and moral questions – questions that law is not well equipped to answer. The Mental Capacity Act does at least, provide a framework for discussion but it offers no guidance on how each factor should be weighted. For the family, the key factor was that M's continued existence was not what she would have wanted. For Mr Justice Baker, the decisive factor was the preservation of life.

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As with abortion, the language used to discuss end of life and patients' rights continues to be muddied up, with each side claiming to stand for the patient. Wesley J. Smith's recent scree against futile care is telling. He's taken up the rubric of patients' rights, claiming that a patient who wants just one more chance at beating cancer should be able to make that decision for themselves, regardless of limited health care resources, the doctor's recommendations, or that of the hospitals where the patients are treated. I've said very much the same thing myself, here, repeatedly. But what Smith and others fail to miss -- and this is a conservative blind spot that we see exploited often -- systems and culture affect how patient's view their health care choices. Those concerned with futile care recognize that a culture of "do everything" is responsible for the increase of treatments and services that won't save lives and often prolong death. Those of us who stand for patient's rights -- a person's right to choose what their best path of treatment may be -- must be careful to recognize that cultural influences and not just the individual's ideas about their fate can play a role in the patient's choice. If you want to stand for choice in all cases, abortion advocates have long known, you have to stand for even the choices you don't agree with.

Don't miss Smith's knock of the Veteran's Administration, the largest provider of health care in the US and conservative's primary example, after medicare, of how the government mismanages health care.

Patient's rights is a term I use often but independence and individual rights are only half the conversation. We're also members of a community and creators of a culture that establishes values even as we espouse them. Simple calls for patients' rights (or women's rights, etc.) are only part of the challenge those who wish to address the vagaries of our health care system (or it's absence) must consider.

Smith, who claims to be a bioethicist, often blames greed for what he says is a pervasive "culture of death." With many issues like pentagon spending, incarceration, and social services, I've said pretty much the same thing. But what Smith misses is the responsibility that society has to the patient to prepare them for death and to do no unjust harm. Futile care often stymies both. And it's preventing us from talking about death and health care in practical, dignified ways.

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Read Catholics for Choice's recent open letter to Kathleen Sebelius, posted at Politico, here. The group is fighting The Catholic Church's heavy lobbying for less restrictive conscience laws in the new insurance coverage guidelines. The Church claims that allowing insurance programs to cover contraception is an offense to their religious conscience and that clauses in the new regulations are far too narrow for their health care providers to work according to their faith. In other words, Catholics for Choice wishes to remind the government that the influential priests who have mobilized against the regulations do not speak for the US's Catholic community but for the Vatican. Or rather, their male dictatorial selves.

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Funny how long it took the Wall Street Journal to pick up this study about the public's views of those in persistent vegetative states.

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.

Finding Life in the Brain Dead.

BioEdge reports that new technology has been developed, cheaper and easier than the fMRI, that may allow doctors to communicate with those previously through brain dead. The "pro-life" groups who oppose patient autonomy and medical proxy laws for removal of patients from life-support are gonna love this one!

British researchers believe that they have found a way to communicate with people who appear to be in a vegetative state. Recent studies have shown that responses from some of these people can be detected with an fMRI scanner. Damian Cruse, of the Medical Research Council’s Cognition and Brain Sciences Unit in Cambridge, has found that electrodes pasted to a patients scalp can detect the difference between imagining a clenched hand and imagining wiggling one’s toes. The electroencephalogram (EEG), is far cheaper and more portable than a fMRI machine. This makes it possible to ask patients Yes and No questions

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Rational Rationing.

Bioethicist Jacob Appel, writing at HuffPo, notes the recent Bentacourt case in New Jersey of futile care and distinguishes between rational rationing and irrational rationing. He writes:

The facts underlying the case are indisputably tragic. In 2008, Betancourt underwent cancer surgery at Trinitas Regional Medical Center, a Roman Catholic hospital in Elizabeth, and later suffered an irreversible anoxic brain injury when his breathing tube became displaced. By 2009, the seventy-two year old was unconscious, kept alive by a ventilator, artificial kidneys and tube feeds. Infected ulcers covered his body. Unfortunately, the patient left no advance directive stating what he wanted done under such circumstances. The team of physicians treating Betancourt determined that he was in a vegetative state and, reportedly in consultation with the hospital's ethics committee, sought to forgo extraordinary forms of therapy, such as dialysis and cardiopulmonary resuscitation. Betancourt's daughter, Jacqueline, who rejected the medical team's view that providing such treatment to her father was merely prolonging the dying process, then obtained a court order for additional care. While the hospital appealed on the grounds that continued interventions were both medically inappropriate and unethical, Betancourt died. However, as the questions raised by this tragedy are likely to arise again in other end-of-life cases, New Jersey's Superior Court is expected to issue an opinion in Betancourt v. Trinitas that will clarify whether physicians and hospitals may refrain from providing costly care that they believe to be unconscionable.

For much more on the case and the potential ramifications of the court's decision, read details at Thaddeus Pope's site Medical Futility Blog. Pope was a witness in the trial. He also discusses Appel's article at HuffPo.

Appel takes a lot of grief from the likes of Wesley J. Smith for his "practical" approach to allocation of medical resources. In the post Appel writes (and I quote a lot because I think it is important, particularly his clarification of how the definition of death has changed, something I write about often):

There is a fundamental difference, however, between asking to be permitted to keep a vegetative relative on costly machinery, and asking the taxpayers or society as a whole to pay for such machinery. Money spent on vegetative patients is money not spent on preventive care, such as flu shots and mammograms. Each night in an ICU bed for such patients is a night that another patient with a genuine prognosis for recovery is denied such high-end care. Every dollar exhausted on patients who will never wake up again is a dollar not devoted to finding a cure for cancer. While the visible victims may draw the headlines and attract indignant protests from so-called "pro-life" organizations, the invisible victims are people like you and me who will suffer from diseases that are never cured because funds are being poured down a healthcare sieve in order to maintain permanently-unconscious bodies on complex and costly forms of life support. I suspect that the vast majority of people, not knowing in advance whether they will either end up in a permanently vegetative state or be diagnosed with cancer, would prefer that any resources that would be spent on PVS care be reallocated to cancer research--or some similar enterprise that has the potential to help human beings who might actually recover.

The stark reality is that modern end-of-life ethics are on a collision course with themselves. As technology enables people to remain "alive" on ever more complex equipment, such as bilateral ventricular assist devices and extra-corporeal membrane oxygenation machines, the line between life and death blurs. Soon enough, a patient may be able to remain on such apparatuses for many months, long after meaningful brain function has ceased, until his skin and tissue begins to putrefy. When does such an existence transcend the barrier between living and dead?

Those who favor funding unlimited care for PVS patients tend to view the difference between these cases and other severe illnesses as a matter of degree. As a result, they worry about a slippery slope that might ultimately result in our pulling the plug on the cognitively intact but disabled. Yet PVS patients should instead be viewed as different in kind from other medical cases. In essence, the Betancourt court can decide that physicians and taxpayers only have a duty to provide unlimited care to patients who have a meaningful chance of returning to consciousness. Let us make no mistake about what this would mean: It would mean declaring that the lives of PVS patients are worth less than those of others. Rather than shying away from this outcome, progressive bioethicists should have the courage to acknowledge and to embrace this proposition.

Defining Death.

The American Academy of Neurology has taken an over-due stab at defining death, from US&News Report/Health:

Determining brain death is a complex process that requires dozens of tests to make sure doctors come to the correct conclusion.

With that goal in mind, the American Academy of Neurology has issued new guidelines -- an update of guidelines first written 15 years ago -- that call on doctors to conduct a lengthy examination, including following a step-by-step checklist of some 25 tests and criteria that must be met before a person can be considered brain dead.

The goal of the guidelines is to remove some of the guess work and variability among doctors in their procedure for declaring brain death, which previous research has found to be a problem, said guidelines co-author Dr. Panayiotis Varelas, director of the Neuro-Intensive Care Service at Henry Ford Hospital in Detroit.

According to the U.S. Uniform Determination of Death Act, brain death occurs when a person permanently stops breathing, the heart stops beating and "all functions of the entire brain, including the brain stem" cease.

While no one disagreed with that description, a 2008 study that included 41 of the nation's top hospitals found widespread and worrisome variability in how doctors and hospitals were determining who met the criteria, said Varelas, co-author of the 2008 review.

For example, low body temperature, or hypothermia, can cause a person to have the appearance of brain death, so bodies have to be warmed before a determination can be made, Varelas said. But hospitals in the 2008 study had 11 different "target temperatures" that varied by several degrees, and there was no consensus about what temperature was optimal to get the best diagnosis, he said.

Those types of details have been worked out in the updated guidelines, which are published in the June 8 issue of Neurology.

"Even the best hospitals in the United States had such a tremendous variability in their policies," said Varelas. "You die either because your heart or lungs stop working, or because you become brain dead. The former two are easy to determine. If there is no pulse, you die. If there is no breathing, you die. But becoming brain dead is much more complex."

The new guidelines were developed based on a review of all of the studies on brain death published between 1995 and 2009.

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.

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.

The V Word Is the New N Word.

Wesley J. Smith on an interview on Larry King Live with the creator of Family Guy, Seth McFarlane:

MacFarlane’s elliptical answer indicates to me that he has never considered the question. He wasn’t asked about the show, he was asked about the epithet. Moreover, the scene did not have people appalled: The audience of the supposed play laughed uproariously when, “Terri” having been called a V, responded, “We hate vegetables!” Moreover, if the show had the kids put on an old fashioned minstrel show that used the N-word–which he almost certainly would never do, and if he did, it is unlikely it would ever be aired–would he ever just reply that the denigrating nature of the word is “for the viewer to judge?” Not on a bet.

Some concerted consciousness raising is clearly required. We have to help people understand that using the V-word to describe people with serious cognitive disabilities is as hateful and dehumanizing to them as using the N-word is to people of color, the F-word to gays, or the C-to women. The time has come to retire it from common and acceptable usage, just as we have (or are doing) with the others.

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.

In Support of Suffering.

Canada will discuss C-384, a bill to legalize assisted suicide there, in May. In today's Hamilton Spectator, Paul Kokolksi writes against the bill, citing the same arguments that we hear here in the US. My least favorite argument is that which endorses end of life suffering - in line with the theological concept of redemptive suffering espoused by the Catholic church, that the more pain we feel, the closer we are to God.

For all of the talk about a "slippery slope" with our "culture of death," I find there too is a slippery slope to the acceptance of suffering. We have the ability to relieve suffering for the dying but suffering brings us closer to God. We have the ability to relieve poverty, inequality, racism, hunger, abuse, injustice...but suffering brings us closer to God? If the concept of redemptive suffering prevents us from relieving suffering for the sake of converting those in pain, we have reduced our moral imperative as humans to a mission for the church. I can't think of a less humane premise than this.

Here's a clip:

Our present culture tends to consider suffering the epitome of evil. In such a culture there is a great temptation to resolve the problem of suffering by eliminating it at the root, by hastening death so that it occurs at the moment considered most suitable. True compassion leads to sharing another's pain; it does not kill the person whose suffering we cannot bear.

The pleas of the gravely ill who sometimes request death should not be understood as implying a true desire for euthanasia; in fact, it is almost always a case of an anguished plea for help and love. Intentionally causing one's own death, or suicide, is a rejection of God's sovereignty and loving plan. It is a refusal of love for self, the denial of a natural instinct to live, a flight from the duties of justice and charity owed to one's neighbour and to society.

No one should be allowed to permit in any way the killing of an innocent human being, whether a fetus or an embryo, an infant or an adult, an old person, or one suffering from an incurable disease, or a person who is dying. The moment a positive law deprives a category of human beings of the protection which civil legislation ought to accord them, the state is denying the equality of all before the law.

In the Netherlands, a policy originally encompassing only persistent requests for death from hopelessly suffering and dying patients has steadily expanded so that physicians have been allowed to kill patients who were physically healthy and handicapped children who never asked for death.

The Netherlands stands as a stark reminder of the slippery slope leading from supposedly limited killing to a broader culture of death.

There exists in contemporary culture a certain Promethean attitude which leads people to think that they can control life and death by taking the decisions about them into their own hands. What really happens in this case is that the individual is overcome and crushed by a death deprived of any prospect of meaning or hope. What any sick person needs, besides medical care, is love -- the human and supernatural warmth provided by those close to him such as family, nurses and doctors.