Thursday, April 8, 2010

Recover from Brain Death?

At Science and Religion Today I found this great study on faith and organ donation. It's an issue I've written about in the past, here and here. But the astounding fact that I pulled out of the study is this one:

When the researchers spoke with those who are unwilling or reluctant to donate their organs, they found that the majority of them—52 percent—think doctors might not try as hard to save the lives of organ donors, and 61 percent erroneously think it’s possible for a brain dead person to recover.

What's 61% of 49%? That's how many Americans who say they wouldn't be willing to donate organs actually believe that a patient can recover from brain death. What percent of Americans, whether signed up for organ donation (38%) or not, believe in miracles?

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Minority Leader Calls Contraception Controversial.

From Digby, a look at the real reason Republicans oppose women's reproductive rights (hint: it ain't the "potential babies"):

Boehner is calling provisions for birth control "controversial" and the only thing he can mean by this in this context is that he thinks Americans believe women shouldn't have sex if they don't want to bear children.

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*No Good Deed* by Lewis M. Cohen.

Michael Sigman reviews a new book by Lewis M. Cohen, a palliative care specialist, titled No Good Deed at HuffPo today. Sigman brings up a number of interesting issues, including the common comparison of human euthanasia with pet euthanasia, how death has changed over the past 40 years, the case of Terri Schiavo, and provider refusal laws that allow medical personnel to override the wishes of patients. Here are a couple of clips with my comments:

There are millions of Americans...who don't view overwhelming suffering as a worst case scenario, but see iniquity in actions that take death out of God's hands. Cohen hears out Bobby Schindler Jr., Terri Schiavo's brother, who represents a "sanctity of life coalition" of conservative politicians and religious groups -- and some disability rights activists -- who believe Schiavo was murdered five years ago. To them, only God can make life-or-death decisions, and palliative care should be criminalized. (Schiavo, who had existed in a vegetative state for 15 years, had her life support terminated by court order after five lawsuits and fourteen appeals.)

Then there are those, Cohen himself passionately among them, who don't see death as an evil to be avoided at all costs. They believe each individual has the autonomy to make reasonable end-of-life decisions, and that prosecuting doctors and nurses for anything short of criminal malfeasance is a travesty that will only ruin innocent lives and increase patient suffering.

A quick clarification: I fear Sigman is misrepresenting the current use of the term palliative in the first quoted paragraph. If asked, I don't think Bobby Schindler would oppose alleviation of suffering for patients, which is the purpose of today's palliative care. Palliative treatments are sometimes used in conjunction with curative treatments or rehabilitation. In other words, palliative care does not always mean that recovery is impossible.

Palliative was coined in 1973 by Balfour Mount, a Canadian physician, after visiting Cicely Saunders and her first modern hospice in Britain. Because of stigma surrounding the term "hospice," Balfour sought an alternative term and established a palliative ward inside Royal Victoria Hospital in Canada. So yes, the original meaning of palliative was quite tied to hospice. But only because it took the modern hospice movement, with it's focus on comfort care, to commence an examination by the medical industry of how to alleviate pain. We can't forget that well into the 60s, doctors weren't even discussing diagnoses with patients; they were often making treatment decisions for patients without consultation; it was a paternalistic system that treated illness as something akin to childishness. The hospice movement and the founding of palliative care practices coincided with the civil rights and patient autonomy movements of the 1970s. A lot has happened since the 1970s; but we have a very long way to go.

In fact, the in-hospital hospice ward that I volunteer at has a strange mixture of palliative and hospice patients -- primarily because it is hospice nurses who are best trained to alleviate pain! Our palliative patients go home; our hospice patients don't. That it took the hospice movement -- founded in the 70s -- to pioneer this specialization says quite a bit about our medical industry's historical approach to pain.

Palliative care specialists are now working hard to divorce palliative care from hospice care, as they should. More doctors should be versed in pain and symptom alleviation -- and a recent study, which I posted about yesterday, shows palliative care programs are proliferating.

As medical technology and practices continue to improve, it becomes more and more absurd to insist that everyone suffering the end stages of terminal diseases must be kept alive regardless of their wishes. Even leaving aside what Bobby Schindler calls "the whole autonomy thing," such a system would collapse under its own weight. Before long we'd have millions of centenarians hooked up to ventilators for years at a cost so astronomical we'd have to wrap our brains around the term "quadrillions."

Cohen's calm, catholic approach to the debate over how we die doesn't extend to liars. He not only takes on Sarah Palin's grotesque characterization of counseling in this area as "death panels;" he argues that gravely ill people are generally grateful for just such an opportunity.

On the money: I've long contested that offering patients a choice of treatment -- via informed consent and referrals -- would most likely alleviate or greatly reduce the need for rationing in our health care system. When asked, most patients want to die at home but are ultimately, as Joanne Lynn says, "glide path"-ed into aggressive or futile care. But we don't have the tools to guarantee patient choice yet: advance directives or living wills can be contested; doctors still reside in a culture where end of life care discussions are lengthy and not reimbursed; society tends to blame doctors -- and patients! -- for death, as though if they had only fought harder or been stronger they could live indefinitely. As William Colby, the lawyer for Nancy Cruzan's parents, writes, our laws have yet to catch up with our medical technology and our societal stigmas.

In a sense, this debate is tougher even than the impasse over abortion rights. Relatively few women have abortions, but everyone dies. And virtually no woman wants to have an abortion, but most people do want, and demand, the autonomy to make informed end-of-life decisions.

Ah, well. I too make a lot of associations between women's rights and end of life rights, preferring the rubric patients' rights (because it signifies at least the possibility of a broader and more affective coalition of gay, elder, women's and disabled persons' rights). I advocate for informed consent, non-discriminatory, equal-access health care -- for all! But Sigman gets his facts wrong here and there are a number of nuances to both the abortion and, using the "pro-life" frame, "euthanasia" debates that distinguish them. (As much as many would like to find a "moral" stance against both abortion and assisted suicide -- as would many in Britain -- the opposition to both in the US is primarily from the Religious Right. The Religious Left has lost its teeth and moral authority, alas.)

Sigman's assertion that relatively few women have abortions is flat out wrong. One third of women between the ages of 15 and 44 will have an abortion, primarily because so many experience unplanned pregnancies. Half of all pregnancies are unintended; four in ten end in abortion. But he's right that no woman wants an abortion; women are often without the resources or education to prevent them. I think he's trying to make the point that death comes for us all; unintended pregnancy doesn't. And so we should all be paying even greater attention to end of life rights than we do to abortion. (Which is the same point Tony Perkins made last year in a radio show in which he tried to drum up enthusiasm for the anti-euthanasia fight.)

What Sigman misses is who experiences patients' rights violations. I would never argue that the rights of the majority (all of us who are going to die) are more important than those of say, black women (who experience more unintended pregnancies because of educational and economic hardship). In fact, isn't the value of a society judged by how it treats its minorities? But that we will face a broader national discussion regarding end of life care -- and soon -- is accurate, as baby boomers approach their end years.

With the implementation of health-care reform, the fifth anniversary of Terri Schiavo's death and the forthcoming release of the HBO movie You Don't Know Jack, starring Al Pacino as Dr. Jack Kevorkian, the issues raised by Dr. Cohen in No Good Deed are more front and center than ever.

With this, I couldn't agree more. And if you're reading here, I suspect you do too.

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