Wednesday, January 20, 2010

"Pro-Life" Shame and Intimidation Campaign and the Making of Public Opinion. does something like a "this day in history" post on the 2008 decision by American Public Health Association to support Death with Dignity (the name of the bills in Oregon and Washington). And in noting their belated surprise at an faux-controversy, they mention the APHAs recent endorsement of "safe and legal abortion."

Which perfectly gets at how effective "pro-life" efforts have been at convincing not only the public but the "controversy seeking" profession of bioethics that abortion and aid in dying are, well, shocking controversies.

This sort of look at patients' rights issues - OMG medical associations actually find women's and elder's rights to be legitimate?! - may make for a great story but it denies the fundamental scientific and medical acceptance of these two issues as have been misconstrued by the noisy "pro-life" organizations in the country.

The latest story out of Montana, where aid in dying was ruled legal by that state's Supreme Court on New Year's eve, is that doctors are not rushing in to offer aid in dying to their terminal patients. It's no wonder they aren't. Since Baxter v. Montana was brought to the courts in 2008, "pro-life" interests have been working hard to make aid in dying untouchable by doctors, shaming them and their patients with the very same tactics that have so successfully worked to shame women. Even the four Catholic-hospital-employed doctors who filed the case with Robert Baxter and Compassion and Choices had their work telephone numbers published by ultra-conservative LifeNews.

Harassment is nothing new to "pro-life" groups. In fact, it is the fundamental aspect of their successful campaign against health care services they ideologically oppose.

Shaming doctors and their patients for using legal, medically-sound procedures has worked wonderfully for "pro-life" activists. Look at how women's reproductive service - not just abortion but the full spectrum from tubal ligations to sterilization to contraception - have been relegated to clinics. Women know that if they want to make their own health care decisions, they have to be prepared to face long travels, picket lines, shaming from their pharmacist, denial of both informed consent and referrals, and mass discrimination. Even the staunchest abortion supporters squirm when you ask them if they've had an abortion or not. Hillary Clinton has said that the number of abortions need to be reduced.

Why is this a significant but destructive meme? Because public opinion and the legislature, both state and federal, have been systematically made to accept abortion and aid in dying as hot button, controversial topics. Opponents work hard to misconstrue information regarding both legal services, their safety, even their legality. And the rest of society has bought the shame.

For nearly 40 years this "pro-life" work has paid off in creating an area of sound medicine that is considered unhealthy and controversial - and hence is harder to access for patients most in need, particularly the poor. When bioethicists, those who are supposed to be most in tune with science and medicine, fall for the "pro-life" line, advocates for patients' rights know they have a long way to go before justice in health care delivery is a reality.


A controversial 2008 decision by the American Public Health Association (APHA) to back "aid in dying" (ie, assisted suicide) slipped almost completely under the media’s radar at the time, even BioEdge’s. In retrospect, it seems like a highly significant decision.

Why? It means that the official policy of the "oldest, largest and most diverse organization of public health professionals in the world" – 30,000 of them – is to support assisted suicide to the hilt. Or, as they prefer to call it in Oregon, "patient-directed dying" or "physician aid-in-dying".

All the facts about the debate surrounding the decision have not emerged, but it may be significant that another policy adopted at the October APHA conference was strong support for safe and legal abortion. There must have been a lot of politicking going on behind the scenes.

Some of the major features of the APHA policy recommendations on assisted suicide are:

>>> [It] Supports allowing a mentally competent, terminally ill adult to obtain a prescription for medication that the person could self-administer to control the time, place, and manner of his or her impending death, where safeguards equivalent to those in the Oregon DDA are in place…

>>> [It] Rejects the use of inaccurate terms such as "suicide" and "assisted suicide" to refer to the choice of a mentally competent terminally ill patient to seek medications to bring about a peaceful and dignified death.

>>> [It] Supports measures to ensure that patients eligible to receive information about death with dignity and are able to choose alternatives such as aggressive pain and symptom management, palliative care, hospice care, and care to maximize quality of life and independence.

>>> [It] Supports the provision of information about the full range of end-of-life care options to terminally ill patients permitted by law in the state in which the patient is receiving care, including, for example, voluntarily stopping eating and drinking and palliative sedation…

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The Evolution of Informed Consent.

From PalMD at ScienceBlogs, a look at how informed consent has transitioned medicine from the great paternal profession to one of patient autonomy.

Though I cringe at his assertion that medicine should remain paternal - paternalism is one of the primary roots of discrimination of all forms because it asserts that one entity has priority over another, he makes me want to read this book on Henrietta Lacks, the mother of the consent form.

And this bit reminds me of the horror stories I've heard about breast cancer patients in the 70s going under anesthesia for a biopsy and waking up hours later with full mastectomies. We've come a long way, yes. But when the largest provider of health care in the country, the Catholic Church, can still decide who receives ANH and deny its removal, despite patient requests!, we must accept that paternal medicine is still winning the war against patient autonomy.

PalMD's blog:

The book is called The Immortal Life of Henrietta Lacks and documents one of the most important discoveries in modern biology and the people who made it possible---even when they didn't know it.

Which brings me to the topic of this post. I haven't finished the book yet, but it's terribly hard to put down. I love non-fiction, and this is the best I've read in years, both from a content and style perspective. Rebecca's prose is entirely engaging. Skloot manages to capture the humanity of the people involved in all its flawed glory. So far, there are no saints, no demons; just people.

One of the most engaging characters is medicine itself. Medicine has changed much over the decades, and medical ethics with it, but not always as much as we would like. The previous norm in medicine was paternalism, that is, the doctor was seen as the authority and the patient ceded their autonomy to the expert who presumably had the patient's best interests at heart. It's not that paternalism in medicine no longer exists (it must, really) but the pendulum has, well, not swung, but been pushed toward patient autonomy.

As part of the move towards the protection of patients and the preservation of their autonomy, we explicitly inform patients about their care---and ask permission. Of course, we don't ask permission for every little decision in a patient's care, but neither are we supposed to implement major changes without their explicit, informed consent. To accomplish a goal of balancing autonomy with other needs, we have patients sign general consents to treatment, and specific consents for treatments that are more dramatic, such as surgery. These consents should explicitly set out the risks and benefits of a procedure and should reference a more detailed conversation that you have had with a patient.

To be clear, the act of signing a consent form is not the same as granting consent. Signing the form is only part of the process, the most important part being the conversation with the patient. This is what honors the intent of "informed consent".

While we have probably not reached the goal of a perfect partnership between patient and physician (!), we have made strides. Here is the text of the consent form signed by Henrietta Lacks (from the book) before treatment for her cancer, a treatment which left her infertile, unwell, and the mother of one of the most important tools in modern biology:


I hereby give consent to the staff of The Johns Hopkins
Hospital to perform any operative procedures and under
any anaesthetic either local or general that they may
deem necessary in the proper surgical care and
treatment of: ______________________________.

For the sake of comparison, here is the text of a more recent consent form:

A physician has provided the following information to me: the nature and benefits of the proposed procedure treatments; the consequences of non-treatment; the significant alternative treatments; the possible significant complications of the proposed procedures.

I voluntarily consent to the procedure as discussed with my physicians...I understand that associates, residents or assistants may participate in my case.

I realize that medicine is not an exact science and that all possible outcomes/complications cannot be anticipated and that no promises or guarantees have been made to me...

I have had the opportunity to ask questions and I have no further questions of my physician.

There are significant differences between these two documents, and between how they are ideally implemented. The most glaring difference is that the first document requires nothing from the health care providers, at least not explicitly. It is probably implied that they will give the best care that they can, but that is tied up in the context and the times. The second form lays out explicitly some of the responsibilities of the physicians and explicitly calls on the patient to provide questions about their own care.

Ms Lacks grew up on a tobacco farm and had a sixth grade education. She was black in a segregated city. She had no real choices about her care because of this context, and the physicians of the time were not likely to have worked hard to mitigate that---it was not part of their culture.

Today we may still fail to get true informed consent---we aren't perfect. But we at least strive for a more transparent system in which patients and doctors have both rights and responsibilities.

This intimate look into the past of the doctor-patient relationship has the potential to help us continue to improve the ethical practice of medicine.

Thank you, Henrietta Lacks, for continuing to give of yourself in so many ways.

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Religion and the Trial of Proposition 8.

At Religion Dispatches, Candace Chellew-Hodge has a review of the first week of the Proposition 8 trial taking place in California and asks, where's the religion?

As we've seen with abortion, aid in dying, and gay rights, religious advocates have used their "pro-life" resources to shape legislation - because God has pull with politicians - but they've worked hard to avoid the Establishment clause issues of claiming religious grounds in the courts, understandably. US courts still struggle with how to interpret separation of church and state, the Supreme Court notoriously avoiding it at all costs particularly on issues of patients' rights and of issuing unpredictable decisions regarding religion in the classroom and the public square.

But the interesting thing this case over Prop 8 is showing is that when claims for "traditional" laws are made without God's backing, they tend to fall flat. Procreation? Parenting? The state should have an interest in protecting marriage on these grounds? The reasons lack legal significance.

If supporters of Proposition 8 were to pull out the Establishment clause, they would have to give up the God ghost that propelled this horrid, draconian law into passage. Saying the forces behind the bill's passage were pushing religious ideology and having it struck down in a court of law as violating separation of church and state would put a giant kink in the work religious opponents of same-sex marriage are doing all across the country.

It's a hell of a lot easier to scare voters and intimidate legislators with discriminatory fear of creepy gay couples, but the third branch of government exists to interpret the constitution, outside of public opinion and away from influence of the legislative branch. On the Establishment clause, judges have often caved to societal pressure and their own convictions. Let's hope the Prop 8 judge sees how little basis there is in the law when religious ideology is extracted from arguments.

If you read some of the testimony Chellew-Hodge includes in the article, the arguments sound even quaint, like the transcripts of a case from the last century, rife with unchecked discrimination and fear of change:

When Proposition 8 was fought at the ballot box in California to deny the newly-minted right to marry for gay and lesbian couples, those leading the charge were mainly religious. The Mormon Church gave more than $180,000 in efforts to repeal the new marriage law. That was peanuts though compared to the nearly $730,000 in cash and services provided by Colorado-based Focus on the Family and the $1.275 million given by the Catholic Church group the Knights of Columbus.

The religious argument against marriage equality for gays and lesbians may have won the round at the ballot box, but in the San Francisco courtroom where the legal battle to overturn Prop. 8 wraps up its first week, religion has been largely absent. Religious arguments don’t hold a lot of legal water, so anti-marriage equality proponents are forced to use their secular arguments, and reading reports from the courtroom (since the U.S. Supreme Court nixed video coverage of the trial), they’re leaking fairly badly as well.

Without being able to argue that God ordained one man and one woman for life (never mind all that Old Testament polygamy) and so we cannot deviate from that pattern, those opposed to same-gender marriage are instead focusing on issues like parenting, economic impact, discrimination, and child rearing.

In their opening arguments, defense attorneys laid out their case:

Charles Cooper, the lead attorney for the Proposition 8 defense (…) is hitting the main points in the defense: that the voters have spoken on the issue, and gay couples in California enjoy strong legal protections under domestic partnership laws. (…) Cooper finished his opening statement, defending the need for society to preserve the traditional definition of marriage and limit it to heterosexual couples for its procreative purposes. He told the judge that marriage must be “pro-child,” and that would be at risk if same-sex couples were allowed to marry. Cooper insisted that the courts should stay out of the issue and allow the voters to decide whether they want to allow same-sex marriage, but the judge questioned that thesis. “There are certainly lots of issues taken out of the body politic. Why isn't this one of them?” the judge asked at one point.

Throughout the week, the plaintiff’s lawyers have taken a whack at each of those issues, and more. Harvard University historian Nancy Cott was the first to dismiss the idea that marriage should be reserved for procreation.

Her task to start the second day of trial is to knock down one of the central arguments of gay marriage foes: that the state has a compelling interest in restricting marriage to heterosexual couples because of the procreative purpose of marriage.

Asked by plaintiff’s attorney Theodore Boutrous whether procreation is a central purpose of marriage, Cott scoffed, nothing that President George Washington, “the father of our country,” was sterile by the time of a later marriage.

“Procreative ability has never been a qualification for marriage,” she testified.

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A "Reverse Version of the Scopes Monkey Trial" in Ohio

An Ohio town has been divided for more than a year over the case of a school science teacher who has kept a bible on his desk, posted the ten commandments in his classroom, asked students to refer to the bible for science research, and taught that homosexuality is a sin.

The teacher's supporters are claiming he is being persecuted for his religious conviction. The school board has spent hundreds of thousands of dollars for a hearing on the teacher's case. Some residents have even sold their house and moved.

From the NY Times article:

Mr. Freshwater, an eighth-grade public school science teacher, is accused of burning a cross onto the arms of at least two students and teaching creationism, charges he says have been fabricated because he refused an order by his principal to remove a Bible from his desk.

After an investigation, school officials notified Mr. Freshwater in June 2008 of their intent to fire him, but he asked for a pre-termination hearing, which has lasted more than a year and cost the school board more than a half-million dollars.

The hearing is finally scheduled to end Friday, and a verdict on Mr. Freshwater’s fate is expected some months later. But the town — home to about 15,000 people, more than 30 churches and an evangelical university — remains split.

To some, Mr. Freshwater is a hero unfairly punished for standing up for his Christian beliefs. To others, he is a zealot who pushed those beliefs onto students.

“Freshwater’s supporters want to make this into a new and reverse version of the Scopes trial,” said David Millstone, the lawyer for the Mount Vernon Board of Education, referring to the Tennessee teacher tried in 1925 for teaching evolution. “We see this as a basic issue about students having a constitutional right to be free from religious indoctrination in the public schools.”

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Legal Questions Answered For End of Life Care.

The American Bar Association, in coordination with the National Hospice and Palliative Care Organization, has issued a new document that is meant to aid patients and their care-takers when facing legal issues in preparation for end of life.

The document can be found here and highlights such difficult issues as how to pay for the health care you need, what are a patient's rights, and planning how to manage your money and property.

I hope the Guide for the Seriously Ill gets some good distribution. One of the more challenging aspects of facing terminal illness is not just knowing how to tackle legal challenges but knowing exactly what those legal challenges are. Here's an excerpt from an article at Senior Spectrum:

Knowing what vital steps to take to get your financial and legal affairs in order when confronted by serious illness just became easier thanks to a new guide released by the American Bar Association (ABA).

Seniors and family members facing the onset of a life threatening illness or injury are often unaware of how to get their affairs in order to protect themselves and their families.

“The Legal Guide for the Seriously Ill” — a project by the ABA Commission on Law and Aging commissioned by the National Hospice and Palliative Care Organization (NHPCO) — was designed for both the seriously ill individual and those caring for someone who is seriously ill.

The guide explains “Seven Key Steps” in a brief, clear way while offering additional tips and resources for readers looking for more detailed information and guidance.

“‘The Legal Guide for the Seriously Ill’ is a great resource for anyone facing a serious illness,” noted ABA president Carolyn B. Lamm. “The book provides critical tools that help readers understand their options, make informed decisions and minimize some of the anxiety they may be feeling about their financial and legal affairs at this stage of life.”

Development of the new guide was prompted by current societal issues and concerns facing many Americans, such as paying for health care, managing health and personal decisions, and patient rights.

“The Legal Guide for the Seriously Ill” also explores recent legislative and regulatory changes to give users a thorough understanding of where they stand when making important decisions.

The guide is expected to fill an important gap in resources for many Americans.

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UK Nurses Drop Opposition to Aid in Dying.

Britain's as embroiled in a fight for aid in dying as Canada and the US. News comes now that after a poll showing public support for the choice of aid in dying, the largest nurses association in Britain has changed its stance. From Political Blog:

Britain’s main nurses’ organization has dropped its opposition to assisted suicide, as a new poll released Saturday showed solid support for the right to die.

Doctors group the British Medical Association remains opposed.

The Royal College of Nursing said it was adopting a neutral stance on the issue after its research showed nurses were divided.

A survey by Populus published Saturday found 74 percent of people wanted the medical profession to be able to supervise assisted suicides, although a large majority 85 percent felt it should be legal only in specific circumstances.

Under British law, assisting a suicide is punishable by up to 14 years in prison, but prosecutions are rare. More than 100 Britons have died in Swiss clinics run by the group Dignitas in the past decade, and none of their friends or relatives has been charged with a crime.

The issue of assisted suicide was back in the headlines this month after 85-year-old British composer Edward Downes and his wife Joan, 74, died at a Swiss suicide clinic. He was blind and increasingly deaf, while she had been diagnosed with terminal cancer.

The pollster interviewed 1,504 adults by telephone between July 17 and July 19. The margin of error is about plus or minus 2.5 percentage points.

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Why Did Coakley Lose in Mass?

Coakley ran a bad campaign and she was a bad candidate. But different groups, in the aftermath, will claim a host of other reasons, mainly because they're more interesting narratives:

It's a referendum on the Obama administration.

The country said no to health care reform.

Coakley's comment on the conscience clause sank her.

Most all of this is bunk. Coakley was a bad candidate from Western Mass who alienated the rest of the state's democratic machine organizers. Brown campaigned like he wanted the job, Coakley didn't.

It's not like Democrats were doing much with their 60 super majority anyway. Just saying.

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Mad Pride: Mental Illness Advocate Judi Chamberlain has Died.

From NPR, an obituary of the mental health advocate Judi Chamberlain who died this week after a lifetime of working for the rights of patients with mental illness:

Judi Chamberlin, who died this weekend at age 65, was a civil rights hero from a civil rights movement you may have never heard of. She took her inspiration from the heroes of other civil rights movements to start something she liked to call Mad Pride — a movement for the rights and dignity of people with mental illness.

It started in 1966, when Chamberlin was 21 years old and seeing her doctor because she was dealing with a deep depression. "After a while, he suggested I sign myself into a hospital because I was just not functioning, I was so depressed. And I just thought, 'Oh a hospital's a place where you get help.' And you know, I'd been in hospitals for surgery and things like that, and didn't think of it as having anything to do with your fundamental rights. So I just said, 'OK, I'll try it.' "

Chamberlin told her story in a 2006 interview with Will Hall, host of Madness Radio, a program by people like Chamberlin who call themselves "psychiatric survivors."

"And very quickly, [I] found out that once you sign papers to go in on a voluntary basis, but then you can't leave when you want to leave, which was absolutely shocking to me," she said.

She got out of that state hospital and moved to Vancouver, British Columbia, where she lived with other people who'd been diagnosed with mental illness but who'd then gotten government money to develop their own treatments. She recovered and eventually moved to Boston, where she started working with other former American patients who wanted to change the system. They called themselves the Mental Patients Liberation Front.

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