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.

Framing Pain as Necessary.

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

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

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

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

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

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

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

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

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

(h/t Carla Axtman)

Rita L. Marker, Lost Credibility.

In a recent article for the right-wing American Thinker, Rita L. Marker takes a very long time trashing health care for school students as provided by the new health care bill, to get to a simple and false point: students in Oregon and Washington will be instructed on and sent for "assisted suicide" when they should be in math class -- and all without parental notification.

If Marker, Executive Director of the increasingly wacky International Task Force on Assisted Suicide and Euthanasia and sometime-consort of ubiquitous, self-important Wesley J. Smith, had only read the Death with Dignity bills, which have been legal, and highly examined and reported since 1997 (Oregon) and 2008 (Washington) she would know that no one -- not a student, not a terminal patient - can get a prescription for lethal drugs in 2 weeks.

In addition to all the other regulations (two written requests, two doctor consultations, less than 6 months to live, etc.) there is a mandatory waiting period of 15 days.

Instead of making things up to imply that the government and Compassion & Choices and school doctors are all out to just kill your kids, she could have read the bills. But that's not how she makes her living.

Agree with the bills or not, there's no place for deceitful discussion regarding the care the way we care for all of our citizens.

The article, with so many other over-the-top insinuations, I'll leave you to find them:

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

In the week during which ObamaCare, euphemistically named the "Patient Protection and Affordable Care Act," was signed into law, I recalled that senator's words.

The catalyst was a story from a Seattle television station reporting a mother's outragethat a school-based health clinic (SBHC) had arranged for her 15-year-old daughter's abortion. The high school student was given a pass, put in a taxi, and sent for an abortion during school hours -- all without the parents' knowledge. To add insult to injury, the teen was told that there wouldn't be any charge for the abortion if she concealed it from her family.

Was this legal?

Yes.

According to Seattle School District spokeswoman Teresa Wippel, "From a legal/procedural standpoint, it's a non-issue."

But this article isn't about abortion and ObamaCare. That topic has been and will continue to be widely discussed. Rather, it is about school-based health clinics, parental consent, and assisted suicide. That aspect of the new law has, until now, been under the radar even though it is part and parcel.

Under ObamaCare, there will be a massive expansion of SBHCs (Sec. 4101), creating full-service clinics across the country.

SBHCs are not new.

Over the years, health-related services in schools have expanded from a part-time nurse who checked to see if little Johnny has a fever to clinics offering such broad services that they have become the primary source of health care for many children, particularly teens. So rapidly did they become entrenched in school across the country that by the mid-'80s, health services on school premises were the subject of national conferences of school-based clinic administrators and personnel. Caseloads in a school-based clinic located in or near high schools and junior high schools ranged from about 500 to 5,000 students per year.

Currently, thousands of such clinics are members of the National Assembly on School-Based Health Care (NASBHC), which has the stated mission "to improve the health status of children and youth by advancing and advocating for school-based health care." But until now, they had been funded by state and private funds. With passage of ObamaCare, the federal government has entered into the fray. According to the NASBHC, passage of ObamaCare was "an unprecedented victory for school-based health centers" which will enable other communities to open school clinics.

Kevin Jennings, the Obama administration's controversial Assistant Deputy Secretary of the Office of Safe and Drug-Free Schools, is slated to keynote the organization's June convention with an address titled "Partnering Education and Health for a Safer School Environment."

Hundreds of millions of federal dollars will be directed to SBHCs.

Since the stated rationale for passing ObamaCare was to provide health care coverage for the uninsured, it would be logical to expect that school-based clinics would become obsolete. It is therefore curious that the very law that was intended to provide health coverage for all allocates millions of dollars to school-based health clinics that will "be integrated into the school environment" and will provide, "at a minimum, comprehensive primary health services." The expanded clinics will provide on-site access during the academic year and 24-hour coverage through backup health providers to ensure access to services on a year-round basis when school is not in session. All of this will proceed with little or no parental involvement.

From the time that clinics began to expand services, parental consent has been requested for clinic services. The new law also gives lip service to parental consent. However, such consent is obtained by means of a general consent form signed at the beginning of the school year. Parents -- knowing that their children can receive immunizations, sports physicals, etc. through the SBHC-- rarely refuse such authorization for their children. They sign the consent form, naïvely assuming that it is just an inexpensive way to insure convenient, free physicals and care for minor medical problems.

But that's not the way it works.

According to the NASBHC, access to any service (sports physicals, for example) requiresparents to sign written consent for their children to receive the full scope of services provided at the SBHC.

As the Seattle area mom found out, the Ballard High School consent form that she signed gave permission for any and all services available that the clinic provides, either directly or by referral. In addition, it makes it crystal clear that all information is kept confidential, with few exceptions. One such exception is that if a student under 18 years old has a life-threatening health problem, parents will be informed of a child's condition. But that all changes once a child reaches her 18^thbirthday.

Consider the following.

A number of life-threatening (indeed, terminal) conditions can be diagnosed in a clinic or through a referral to a hospital on an outpatient basis. A student may be diagnosed through an SBHC's clinic with acute leukemia or melanoma -- all within school hours, when her parents believe she is in class or at band practice. And she could, under the state's law, be "qualified" for assisted suicide, since, in Washington (as well as in Oregon and Montana), the crime of assisted suicide has been transformed into a "medical treatment." That treatment is available to qualified patients who are at least 18 years old.

Within two weeks of her initial diagnosis, the student who had been looking forward to going to the prom could instead be referred to Compassion & Choices, the assisted suicide advocacy organization formerly called the Hemlock Society. (Compassion & Choices is the go-to group for assisted suicide services, responsible for facilitating most reported assisted suicide deaths in Washington and Oregon.)

Before her parents even knew she was ill, she could be given a prescription for a lethal drug overdose. She could take it. And die.

And her parents would be completely unaware of her condition -- until it's too late.

Will this happen? No one can know for sure.

Can it happen? Yes.

And if it does, the school district could say, "From a legal/procedural standpoint, it's a non-issue."

Welcome to full-service school-based health clinics -- ObamaCare style.