Do Americans Balk at Euthanasia?

Last week The New York Times got eight panelists together to answer the question, "Why do Americans Balk at Euthanasia?" It's a loaded question. Do Americans balk at euthanasia? Statistically, the answer is a fairly hearty no. And what do you mean by euthanasia? Death with Dignity, as legalized in Washington since 2008 and Oregon since 1994? Aid in dying, assisted suicide, passive euthanasia, active euthanasia. Of course the definition of the term itself is loaded in the U.S. in a way that it isn't in, say Europe.

At least the panel has some breadth, with Rita L. Marker and Margaret Dore holding down the antis and Jacob Appel and Philip Nitschke holding down the pros. There's enough in between to keep it interesting, and the panel gets more than one non-U.S. voice in there too.

Here's what I have to say about the entries:

Marcia Angell of Harvard Medical School give us the landscape. Where euthanasia is legal, via Death with Dignity laws, it is supported. She gives us two reasons why it's more controversial here in the U.S.: the Catholic Church (which, I might add, operates 1/5 of all hospital beds in the nation, according to their own Vatican-written laws, thanks to conscience clauses that let them skirt state and federal regulation); and our health care system. She posits that the "any practice that might save money raises the specter of rationing." While this is true of media commotion, the fact remains that statistics out of Washington and Oregon show that Death with Dignity laws prevent abuse. And I might add, save lives. When a state's population has had a public conversation about end of life issues, the use of advanced directives, living wills, POLST, and hospice all increase. And educated public, as they say....

Marilyn Golden of Disability Rights Education and Defense Fund writes under the title, "Too Many Flaws in the Law." She sites the case of Barbara Wagner as proof that insurance companies are keen on depriving ill patients of life-saving treatments. You can read my analysis of rationing and the Wagner case here. In short, Wagner didn't get the experimental drug she wanted because it had less than a 5% chance of lengthening her life. Golden is right to point out that diagnoses are not accurate but her pounding of "doctor-prescribed suicide" shows that she's not too willing to discuss how Death with Dignity is working or even to discuss the horrors of being caught between incurable pain and death. As well, it's been fascinating to watch the disability rights groups in the U.S. rally (or be rallied) by anti-euthanasia group. To my mind, patient autonomy (whether that patient is disabled or terminal) should be our social objective. Making the disabled afraid of their doctors isn't really the best advocacy. Yes, the disabled have a history of being treated like half-citizens. But removing patient autonomy from the conversation doesn't change that. Golden also warns that the existing laws are rife with bad reporting and that they subject patients to abuse. It would be much easier to find her argument reasoned if she sited unbiased sources.

Petra de Jong of Right to Die Netherlands notes that "euthanasia and assisted suicide can only be legalized in a country with optimum health care, including palliative care. But most of all, with citizens having access to good health care, regardless of their income." Valid point. If Compassion & Choices (the largest aid in dying advocacy group in the U.S.) wishes to advocate for Death with Dignity laws at the federal level--as a humanitarian right--they'll have to address the fact that those using it currently are predominantly rich, well-educated, and white. Does the U.S. need better health care. Yes, yes, yes. Should that preclude those who are terminal, thoroughly screened by their doctor, and in pain from getting a prescription for a drug that will end their life? I'm not so sure.

Patricia King of Georgetown Law and Johns Hopkins make the very important point that "the poor, the disabled, the elderly and members of racial and ethnic minorities -- worry that if assisted suicide becomes widely available they will be viewed as “throwaway people.” They fear coercion, stigmatization and discrimination, understandably believing that the societal indifference prevalent throughout their lives will also infect their end-of-life care." Important because I'm not sure there are statistics that back this up but also because she reminds us that whether the fear is real or not, it must be treated as legitimate. If you got the short end of the stick repeatedly during life, what's to convince you that you won't also get it in death? That's a powerful life lesson. And politically, it's a charged argument with legs.

Rita L. Marker has a lot of scary but inaccurate stats. She forgets that failed bills intended to protect minorities (in this case, those who just don't want to hurt anymore) are a poor sign of justice in our ancient democracy. Democracy has seldom stood up for minorities. One point that Marker misses again and again is that Death with Dignity laws allow a system of discussing end of life wishes with patients and tracking their deaths. Medicine is not exact. The body is unpredictable. But how many deaths do you think occur outside of Washington and Oregon that would call the double effect into question? Transparency is what Death with Dignity brings. So long as we continue to treat death (and any conversation about it or any preparation for it) like a taboo (a tack that many anti-euthanasia groups pursue) we'll be doing our loved ones a disservice. Put down your "culture of death," Rita, and step away from the computer.

And then there's Margaret Dore. I've spent a good number of hours on the phone with Dore. She's convinced that elders are will be murdered as soon as aid in dying becomes legal, despite the fact that no such thing is happening in Washington and Oregon. Dore is right on two things though: elder abuse is real and alarming. But it's been taking place in every state for far too long and ranges from petty theft to physical and sexual abuse. But that horrible state of our elder care system just isn't due to Death with Dignity. The second point Dore makes, by naming her new non-profit "Choice is an Illusion," is correct. The choice and autonomy language that ushered in the women's rights movement of the 70s and 80s has inadvertently silenced any conversation about community, shared responsibility, and social ethics. It's painted patients' rights conversations into a corner. Otherwise, Dore uses an anecdote about her friend's unexpected recovery to stand in for all other statistics. Yes, miracles happen. Yes, sometimes treatments can turn around a diagnosis. But much more often, terminal diagnoses err on the longer side, drugs are horrendously painful, and patients have more peace if they can talk about what's coming.

Philip Nitschke writes, that the right to aid in dying won't broadly be legalized in the U.S. until Americans reclaim "control over one's body from God."

Jacob Appel warns that the public perception of what euthanasia is and how it works has been poisoned by "pro-life" parties and those who are busy fighting the "culture wars."

What most of these panelists do not stress strongly enough that the dying are desperate. Our system is broken. Pain alleviation is woefully, distressingly behind the times. Our current medical system pushes terminal patients from one aggressive treatment to the next without thought to the torture that they are causing. That's why patients in hospice live longer than those who aren't. The public conversation that comes from a sober discussion of end of life care far outweighs the opportunities for abuse that opponents would like to scare us with. Furthermore, the general medical apparatus that we are all subject to today makes more on a live being than it does a dead one. Euthanasia is a polarizing issue that directly affects a minute number of patients each year--where it's legal. But it's political affects are enormous. And at the moment, those political affects are serving profit-driven parties that oppose real health care reform.

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

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

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

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

Montana and Assisted Suicide.

The Missoulian gives a run-down of the bills before the legislature in 2011 including one sponsored by Rep. Dick Barrett, D-Missoula that will reinforce the Supreme Court decision last year that ruled the state constitution did not prevent assisted suicide.

"My sense is that terminally ill Montanans really do want to have this choice available to them, not that large numbers of people take advantage of it," Barrett said when requesting the bill draft earlier this year.

"We'll be advocating for Montanans to continue to have access in aid in dying and to make those decisions with their doctor without government interference," Zupanic said.

***

Jeff Laszloffy, president of the Montana Family Foundation, said his group stands against physician-assisted suicide.

"I think one of the big ones we're really going to be fighting is the legalization of assisted suicide in Montana," he said.

Meanwhile, Sen. Greg Hinkle, R-Thompson Falls, is requesting a bill to ban physician-assisted suicide in Montana. He has referred to it as "elder abuse."

Guns, Death with Dignity, and Moral Equivalency.

Tell me this: What's the difference between giving an elderly or disabled person a gun specifically designed for their use or giving them a lethal prescription for drugs? Either way, the licensed (and Medicaid-reimbursed) "object" can cause death of the prescribed person or others.

I would say no difference whatsoever, except for how we view personal autonomy with regards to the two lethal "objects." And the horrors of physical violence perpetrated by gun deaths. If I read one more website comment that says, "why legalize aid in dying when the determined ill patient can just end their life without approval?" I'm going to puke.

Where's Wesley J. Smith and his arguments for moral equivalency when you need him?!

The intended target market for the Palm Pistol is the elderly, the disabled, and individuals with limited strength or manual dexterity. [10] Carmel’s hope was for individuals in the target market to be able to request a prescription for the product from their physicians and be partially reimbursed by Medicare or private insurance. [11]

Matt Carmel is an NRA certified firearms instructor in New Jersey and learned that many of his clients had little experience shooting a gun. He observed that they were unable to keep the muzzle of their pistols steady, causing their shots to be inaccurate. He also found that beginning shooters have a tendency to shake because of a fear of recoil, fear of noise, and general apprehension in handling firearms. [12]

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

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

SEC. 1553. PROHIBITION AGAINST DISCRIMINATION ON ASSISTED SUICIDE.

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

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

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

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

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

(3) abortion; or

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Some Questions for Us -- From Jack.

Amber Wolleson, MD, reviews "You Don't Know Jack" for Pallimed and asks the right questions, to which I add some of my own:

He pleads a sympathetic case for his cause. The terms he uses are ones that we would be familiar with: death with dignity, quality of life, end suffering. He speaks about why must someone make the decision to have their feeding tube removed and die slowly when we could just end things quickly, humanely. Who are we as doctors to make someone go through that when we have the ability to spare them?

Why is it so easy to paint Kevorkian as a buffoon, a lunatic, and a murderer?

One statement I found interesting: "terminally ill is not a definable term". I would love to hear what everyone thinks of that.

The importance of the question is undeniable. Death with Dignity laws rely on the definition. Yet we work hard to believe in miracles -- or at least miraculous recoveries -- when we personally face loss. Is this not the area where the unquantifiable variables of medicine and the unknowable aspects of the human body are most profound?

I wondered when I started watching the film how the story would be slanted. It was clearly pro Dr. Kevorkian. I was left wishing for more balanced view of the issues. I felt those against what he had done were vilified and painted as overly religious. (I know very nonreligious people who are against assisted suicide.) I have always seen this as a very complex issue. To just get one side does not do it justice. I was left feeling a bit like the media was trying to manipulate my views rather than just trying to entertain me or even educate me. I would like to see a palliative care perspective. Is death all we have to offer?

What fear and bias against death -- the existence of which often impedes a good death -- causes us to ask that question with such humility? Is death all? When it comes it is everything. For everyone involved.

One line in the movie describes Dr. Kevorkian as "the last doctor you'll ever need". My thought was, does that describe me too?

And if it does, is there a problem with that?

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.

Real Life on the TV.

Marc Siegal at the LA Times gives us a recap of an episode of the TV show "Grey's Anatomy" on assisted suicide that takes place in Washington state, where Death with Dignity (the name of the bill/law) is legal, and tells us how accurate it is:

"Grey's Anatomy"

ABC, Thursday, March 25, 9 p.m.

Episode" "Suicide is Painless"

The premise: At Seattle Grace Hospital, patient Kim Allen ( Sara Gilbert) is suffering from stage IV (widespread) large cell lung cancer that has spread to her lymph nodes and her liver. She has had repeated pleural effusions (fluid has built up in her lungs, which she has had drained), and she continues to have difficulty breathing. She is in constant pain and is told that she has less than six months to live.

Allen has been offered hospice care with its attempts at pain relief and heavy sedation, but she is considering physician-assisted suicide instead. A psychologist has declared her mentally fit, and she asks her doctor, Dr. Teddy Altman (Kim Raver), to help her die. She seems open to the possibility, but in Washington state, according to the show, physician-assisted suicide is legal only if two physicians agree and the request is made by the patient twice, 15 days apart.

The second doctor who is asked to evaluate her, Dr. Owen Hunt (Kevin McKidd), is reluctant to approve her request. Finally, with both Altman and Hunt in agreement, Allen is sent home with a prescription for barbiturates, which Altman tells her will stop her breathing 45 minutes after she takes them.

The medical questions: Is stage IV large cell lung cancer usually terminal in less than six months or can it still be treated successfully with chemotherapy? Can a patient with extensive lung cancer be made comfortable with the help of sedation, pain medication and hospice care — without rendering her unconscious or stopping her breathing? Is physician-assisted suicide legal in Washington state provided that two physicians agree and the patient is mentally competent? Are barbiturates usually prescribed for use outside the hospital in such a case? Could a dose be determined that would predictably stop a patient's breathing in 45 minutes?

The reality: Chemotherapy can sometimes extend the survival of stage IV large cell lung cancer patients beyond six months, but it is often ineffective. The median time to death is eight months, says Dr. Joseph Lowy, medical director of the Palliative Care Service at NYU Langone Medical Center. Only 20% to 30% of patients are alive at one year, so the show's prediction of less than six months for Allen is fairly realistic.

Sedation, pain medication and hospice care can make such a patient comfortable, but shortness of breath can be a particularly difficult symptom to treat, says Dr. Timothy E. Quill, professor of medicine and psychiatry at the Center for Ethics, Humanities, and Palliative Care at the University of Rochester School of Medicine in New York. A patient might be suffering and not be able to report it because they are heavily sedated, Quill says.

In physician-assisted suicide, a physician generally evaluates the patient and then prescribes potentially lethal medication that the patient then takes (or not) by his or her own hand. It has been legal in Washington state since March 5, 2009, and yes, two physicians must agree on the prognosis (that the patient will die within six months), the competence of the patient and the voluntary nature of the request. "There must be no acceptable alternatives," Quill says.

Evaluation by a psychologist or psychiatrist is not required, says Dr. Shawn J. Skerrett, professor of pulmonary medicine at the University of Washington, adding that he's uncomfortable participating in physician-assisted suicide, in part because of "the lack of a requirement to exclude depression by a mental health professional."

Barbiturates are the most common medication prescribed for this use. Data from Oregon indicate that the drugs are consistently effective, but some research suggests that assessing the proper dose can be problematic. In 2009, for example, 36 patients took lethal doses of prescribed medication under the Washington state Death With Dignity Act. In six cases, death took more than 90 minutes.

Working for Disability Rights and End of Life Rights.

Oh, I'm under fire again. This time mostly from Canadians, likely because the euthanasia bill C-384 is back in debate this week. Opponents are lashing out, even across the border. And at me for what I would consider an incredibly benign post that is all history of disability rights in Canada. Geesh.

I don't know the Canadian bill intimately, admittedly, though I have had interaction with Alex Schadenberg of the Canadian Euthanasia Prevention Coalition. I think he seems like an alright guy with a poorly-defined mission. His work is predicated on legislating his idea (of life) and death that is no longer valid and has been rapidly changing for the past 40 years. I admit that medical advancement has muddied that definition, he does not. "Go get-em" he says to Stephen at Not Dead Yet. I'm -em.

Not Dead Yet caught up with my Vancouver Sun link and dug around til they found the last time they (and "pro-lifer" Jill Stanek) wagged their fingers at me. Stephen posits that supporting Death with Dignity (the aid in dying bills in Oregon and Washington, as I do) means that I'm out to kill the disabled because, um, allowing terminally ill patients, who I admit can be classified as disabled because of their illnesses, to decide when and where to end their lives means that I have some deep-seated intent to start killing anyone that looks at me askance.

I don't mean to be flip about this, nor evasive. I've been accused of not addressing disability rights in my advocacy for end of life rights. I haven't because, while I understand the justified fear that the disabled have of state laws, and of society's and the medical profession's discrimination, I find the definition of "terminal" to not include someone in a wheelchair.

When you're accustomed to systemic discrimination, seeing your fellow-travelers is sometimes difficult. I'm advocating for patients' rights - and that means the right of every one of us, regardless of our color, class, gender, education, or functionality, to make our own medical decisions. The legalization of Death with Dignity in Washington and Oregon doesn't in any way cheapen or make vulnerable the lives of any member of society.

Yet this is the case that many make, out of fear, out of mis-directed self-defense, or out of lack of information regarding the end of life experience and the DwD laws. And this was the case that Bad Cripple made at his site yesterday, oddly lumping me with every person who's ever offended or misunderstood him:

As for the first example, I have news for Neumann: if I have learned anything in the last thirty years of using a wheelchair it is that all people with a disability are not valued to some degree. There is no slippery slope involved. Just ask any paralyzed person or anyone with a disability. Better yet go to a school board meeting and listen to one and all cluck about the need for equal access and then vote down the need for that expensive elevator or lift on the school bus. There is no over reaction here . Indeed, if disability activists are guilty of anything I would argue we are too passive. We need to be more vigorous in asserting our inalienable rights as citizens.

Comparing murder to depriving the disabled of school buses is over-reaction. Again, I agree that our society should work much harder to accommodate the disabled, to wipe away prejudices. Anything less than equality for the disabled is discrimination, plain and simple. But claiming that every supporter of Death with Dignity is out to end the lives of every disabled person is over-the-top.

As for the second example, I doubt Neumann goes through the same mental gymnastics or experience the fear people with a disability do when they go to the doctors office or hospital. Perhaps Neumann can appreciate the difference between the terminally ill and disabled but I assure you most people, doctors included, do not. How else do I explain comments made to me such as "I would be rather be dead than use a wheelchair" or "Are you sure you wish to receive medical treatment" or "How longe have you suffered paralysis?" A clear message is being sent and it is not positive. Indeed, it is deadly and with the right spin can be lethal in some circumstances. My existence is open to question, my life less valuable. This is not paranoia but rather a social fact.

I didn't make those comments, nor would I. I believe that a disabled person has the same rights to be informed of their medical status and options as anyone else. But fear of a law that applies to terminal patients and working to oppose the rights of the dying does not protect the disabled from prejudice. BadCripple's existence should never be open to question! His life is never valueless. Hideous discrimination does exist. This we must work to end.

Sacrificing the rights of some for the fears of others never works. Or every black man with a bandana on his head and his hand in his pocked would be jailed away from every prejudiced little old lady who thought he was out for her purse. In other words, fear is powerful and often justified but it cannot be used to sanction the innocent acts of others.

Somehow I doubt anyone has openly questioned the value of Nuemann's existence or asked her if she really wished to receive medical treatment. Frankly I do not want Nuemann's sympathy or anyone else's for that matter. What I want is support; support for my civil rights. That support starts at the beginning, middle and end of life. I have not had that support from anyone aside from my family, friends and doctor or two. What an indictment on society. How can something as unimportant as the ability to walk have such profound social consequences. Worse yet when I assert my rights I get called "paranoid" by people like Nuemann with a political goal--the legalization of assisted suicide. This is depressing to me and I sincerely doubt I can sway the views of people such as Nuemann. Hence this why I write more about disability rights than the politics of assisted suicide.

Asserting one's rights is not what I was calling paranoid; working to end the rights of others in order to assert oneself is reactionary. I may not be in a wheelchair but I will always support civil rights, equality and autonomy for those who are. I may not understand the kind of discrimination the disabled receive but I do know what it's like to have others legislate me out of my own health care decisions.

And here's the reply I posted at Bad Cripple, below. It's sparked a lot of productive conversation. You can read the other comments here.

My advocacy is for patients' rights. I don't know what it's like to be in a wheel chair, nor what it's like to be black or gay or old and feeble. But as a woman, I know what it's like to have my decisions about my health impeded by the government, society, and other groups. I'm not writing to offer sympathy but empathy, that quality that binds advocates to their objective of protecting individual rights in health care delivery.

What you and I disagree on is the definition of death. Until about 40 years ago, death meant the almost simultaneous cessation of breathing, heart beat and brain function. But not so today.

With respirators and defibrillators we can sustain the first two indefinitely. CPR, 911, paramedics can make our hearts beat and our lungs breath. This is a brilliant thing; yet only 15% survive resuscitation to leave the hospital.

My point is that we have the technology to sustain life but also prolong death. And so the definition of death has changed; natural death is less and less common as we are given feeding tubes, respirators, pace-makers and increased artificial means of maintaining the body. In a world where something like 75% of society says it would like to die at home, 80% die in facilities.

What does this have to do with disability? We will all be disabled at some point. By age, by disease, by other health issues. But we all deserve the ability to make our medical choices. It is this ability - this right - that I advocate for.

What Not Dead Yet, Alex Schadenberg at Euthanasia Prevention Coalition and you miss in my writing is my support for Death with Dignity as legalized in Oregon and Washington (US). DwD involves only the terminally ill with 6 months to live, of sound mind, getting a prescription from their doctor that allows them to choose when and where they die. They are dying of their disease. They are not suicidal.

This is not at all different from a family member honoring one's advance directive to remove a respirator or forgo a feeding tube, nor from a patient's choice to end experimental treatments for cancer. It is a choice for as natural a death as we can have. It is a choice to not lie in a hospital, fully sedated for the remaining 6 weeks of life.

We, as members of developed countries where life-prolonging treatments can simply keep us "alive" for longer than God's planned, must now legally struggle with this new definition of death. And we must do so in a way that honors every patient's choice. Regardless of their race, economics, age, or medical condition.

This is my advocacy: To end futile, unwanted care which prolongs suffering; to educate patients' on what their rights are; and to work to help all of us plan for the end of life so that the decisions are in our hands.

In my work for patients' rights, I'm more of a fellow traveler than, unfortunately, you realize.

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.

Debunking Mr. Smith on the Washington Numbers.

A recent column from Wesley J. Smith comments on the new report out of Washington on how Death with Dignity is working there. I comment on his posts so often because he's so good at perpetuating lies about Death with Dignity and assisted suicide - on all end of life care. Here are some things he again gets wrong:

The first dehumanizing assisted suicide “statistics” from Washington are in, with 36 people reportedly overdosing themselves via lethally prescribed drugs in the first year. Washington voters were “sold” on assisted suicide, as is always the case, with the fear of being in pain that cannot be alleviated. But, as in Oregon, assisted suicide in practice is mostly about existential fears. These are serious issues to be sure, but they are not demises of writhing agony used by assisted suicide advocates to sell hemlock as if it were honey.

I'm afraid that Smith is out of line with the majority of voters in Oregon who have long had public-square, in-depth discussions about end of life care. I don't think democracy or laws always work to protect individual rights but I have to say that Washington has proven that all the doomsday scenarios painted by opponents of the laws have not come to bear.

What's at contest is how Smith defines death and human life. From his continued involvement with the Schindler family, the Catholic church, and from his writings, it's obvious that he's determined that death - defined until the 60s and 70s as the rather simultaneous end of breathing, heart beat, and brain function - now must be redefined because of technology that can perpetuate the first two artificially.

The latter, brain function, according to Smith and his fellow "pro-life" advocates, is unimportant. (Except when a big news story like the recent finding of brain activity in some PVS patients (though not any patients who suffered anoxia as Terri Schiavo had) comes along as a possible hook that they can hang their insensitive claims of murder on.) But brain function is not unimportant to elders. For many, it defines who they are. In many ways so does physical competence, mobility, living. These values in no way slight the lives of those with less mobility but simply reflect human ideas of what it means to be alive.

Yet, Smith's attempts at redefining death are incongruent with the majority of society and the laws that are constantly evolving to address new technology. Autonomy was cited in the report as the top reason for patients to request aid in dying. That's a statistic, not an opinion. And it signifies that loss of autonomy means something to a lot of people, whether Smith wishes to call it "existential" or not. What's at issue is that his definition of dying - all aggressive care all the time, regardless of the wishes of the patient or their family - is not the definition that society wishes to work from.

I'll let his juvenile attempts to discredit the report - a long-time tactic of end of life care opponents, science-deniers, ideologues, and conservative religious groups bent on dictating how we should live - and his portrait of proponents of aid in dying as killers slide. No one is out to cut down terminal patients but to treat them as they wish to be treated at the end of life, not as someone else thinks they should be treated. Hemlock as honey? "Sold" on assisted suicide? Fear of end of life "quality of life" is real and great. We are inhumane fools to ignore them. But Smith has an agenda. And the fact that the report doesn't show his predictions of old ladies being coerced into ingesting lethal drugs for their money, minorities and the disabled being preyed on, the "culture of death" devouring the most vulnerable in society, makes him more surly than usual. He's got a "slippery slope" argument to prove and unfortunately, the statistics don't work in his favor. So what does he do? He goes after hospice.

From the story:

Doctors said loss of autonomy was an end-of-life concern for all 47 patients. Ninety-one percent were also concerned about losing the ability to participate in activities that made life enjoyable, and 82 percent were worried about “loss of dignity,” their doctors said. The report also said that more than 40 percent were worried about losing control of bodily functions, 23 percent about being a burden on family, friends or caregivers, and 25 percent were concerned about inadequate pain control. Only one person was concerned about the financial implications of treatment, according to the doctors’ reports.

The report also states that 72% of people who committed assisted suicide were in hospice. This marks the continues assault by assisted suicide consciousness on hospice medicine. Suicide prevention is one of the important services hospice is supposed to provide, along with other interventions, to help a suicidal terminally ill patient get past the darkness to live the rest of his or her life.

Uh, what's 72% of 36? That hospice is being taken over by AS advocates is silly. The common practice in hospice is to treat a terminal patient's paint - indeed that's why it was founded. The issue here is that treating pain often means sedation, often until death. That's not an option that some like. Conflating suicide with with assisted suicide is a disingenuous trope. As Death with Dignity works in Oregon and Washington, the patient is dying from a terminal disease. That disease is the killer, not terminal illness.

It works, too. Several years ago, St. Christopher’s Hospice, founded by the great medical humanitarian Dame Cecily Saunders, released a report showing that of 1700 AIDS patients, only two had requested assisted suicide and none had killed themselves, a remarkable figure since this was when the epidemic was at its worst. The point of the report was to show that quality of their care could overcome the worst situations. But with legalized assisted suicide, this essential service is often (or always, who knows?) denied to patients, particularly since the ideologues of Compassion and Choices are usually involved in facilitating these deaths.

Saunders founded her hospice at a time when technology was just starting to change the definition of death. And she's been quoted as saying, as a staunch Catholic and following of C.S. Lewis, that she founded hospice in part to combat euthanasia. Modern assisted suicide is divorced from early definitions of euthanasia, both Socrates-type and the Nazi-type. Hospice is a brilliant and humane approach to end of life care; by proclaiming it as a service that reduces patients' options, as subject to "the culture of death" is absurd. But it's a common method of scaring the dying into spending their last days, weeks, months in hospitals, exactly where 80% of them say they don't want to be. We know that Oregon, since the legalization of Death with Dignity, has the highest percentage of in-home deaths of any state in the country. For all his claims at knowledge of this subject, he is woefully uninformed or dishonest about hospice use in states where DwD is legal. I won't even touch Saunder's AIDS report. The AIDS movement is responsible for reviving the assisted suicide movement. Yes, ending suffering at the end of life is sufficient to give some terminal patients the peace they want. Others see no difference between sedation to unconsciousness and ending their suffering.

So, Washington looks like Oregon, redux. And that’s too bad. Terminally ill patients deserve better than to have their worst fears verified by doctors issuing lethal prescriptions instead of vowing to stay with the patient to the end caring for their pain, validating their dignity, and supporting the importance of their lives.

Dignity, pain, suffering, autonomy, "quality of life" are not the same for all terminal patients. That the Washington report confirms Oregon's results is fantastic news! These bills have encouraged the elderly and ill to discuss how they die; have perpetuated humane treatment of the dying; have moved more patients into hospice; have allowed patients to die where they want, at home with their family; have established successful "do not resuscitate" laws and practices; have encouraged families to work together to ensure that patients have the treatments they want at the end of life. Think what you want about assisted suicide. These bills have proven that accepting death and working to give patient's their choices in treatment are imperative, life-affirming, humane, and encouraging signs.