Sunday, April 15, 2012

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.

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Intubated Women

Last week I was on a panel at NYU titled, "The Gender and Sexual Politics of End of Life Care," an event hosted by NYU’s The Center for the Study of Gender and Sexuality, along with Amber Hollibaugh, Susan Gerbino and Ai-jen Poo, brilliant women doing phenomenal work in the areas of LGBT rights, palliative care and domestic workers’ rights. Click here to read the (rather rough) text of my talk, which addresses Catholic hospitals and the use of feeding tubes.

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