Sunday, July 13, 2014

Death to Preserved Land by a Thousand Dirty Pipelines

I'm tickled to have an Op-Ed in the New York Times Sunday Review section this morning about something that's dear to me: the hollow I grew up in. Right now a natural gas transporter, Williams, is threatening to run a pipeline through it.

Lots of folks are asking what they can do to help. Here are some options:

Leave a comment at FERC, docket PF 14-8:

Write a love letter to PA Governor Tom "Frackers own me" Corbett or call him at 717.787.2500:

Share this far and wide. We're all getting fracked.

Wednesday, June 4, 2014

On the Blog Train.

A couple of writer friends have tagged me on what they're calling a blog train, a series of questions about what projects and processes we're engaged with at the moment. I'm a little late to this but I have a good excuse: I just got back from a month in the south of India and, well, jet lag is for real. But Brook Wilensky-Lanford and Mary Valle are rock stars as far as I'm concerned. Some calls for participation shouldn't be ignored. Besides, its always helpful to think about how I organize and describe my own work--and here's a chance to engage in that exercise. Through the dissipating fog I hop on the blog train.

What am I working on?

A Book! With a capital B. Next year Beacon Press will publish a project that I've been researching for about six years, SITTING VIGIL: IN SEARCH OF A GOOD DEATH. I've known Amy Caldwell there for a few years and I'm delighted to work with her. The books starts with the question: Why do so few Americans die the way they want to? For the past 50 years, medicine, culture, and law have made it increasingly difficult to know what's coming and how to plan for it. It's my first book and the manuscript is due this fall so I'm excited to be diving deep into the writing phase.

I also write a monthly column for The Revealer, a publication of The Center for Religion and Media at New York University, called "The Patient Body." Because the material in the column overlaps with much of the book, I get to think freely, to test ideas, to ask questions without requiring that they fit into a larger structure. It's good fun and the editor there, Kali Handelman, has been super smart about making me go deeper, think harder, explain more clearly. And I'm also happy to be a contributing nonfiction editor at Guernica magazine, although to be honest, they're getting more writing out of me right now than editing because of my book deadline. These things are great for book procrastination, even as I use the book to procrastinate them! I'm always cheating on one project with another and I think that keeps me from getting stale. I recently started a series of tragic short stories--about suicides, car accidents, runaway trains--which have turned out to be incredibly enjoyable.

How does my work/writing differ from others in its genre? 

Re: SITTING VIGIL: Most books about the social and cultural aspects of death are clinical and academic or sentimental. While there are some really great exceptions (Sherwin Nuland's 1995 bestseller How We Die or, say, Jessica Mitford's classic 1963 take down of the funeral industry The American Way of Death), I find a lot of the books out there to be informative and great for research but not necessarily a good read. I first thought of this project as a memoir; the experience of caring for my father until he died in 2005 rocked me and, as someone in my late thirties, I wanted to know why I was so unprepared for it. My approach from the beginning has been fueled by intense investigative curiosity. I became a hospice volunteer in order to describe the dying process first hand. I spend a lot of time with doctors, bioethicists, nurses, preachers, home health aids, lawyers and of course people who are dying and their families. Because I started out writing poetry, I think I'll always begin with personal experience--told with as much detail as I can muster--but I really like the big hard questions, often those that come from tearing apart terms that go unexamined even as they are used as placeholders in our conversations: hope, dignity, a good death. And I'm scrappy; I like to dabble in theory and policy, but ground those knowledges and facts in the stories my patients tell me. I try to break down the big words and ideas into concrete details, to ask the questions we often consider too impolite: What is love, really? What is care? Quality of life? Choice? I figured the best way to examine how Americans die was to go out there and watch them die, to dispense with the euphemisms, to pull back the pale blue hospital curtains, to ask patients what they were physically feeling, seeing, fearing, and expecting. And I'm wedding those narratives to deep reporting. SITTING VIGIL is story driven and it's incredibly personal, even as it comes out of years of research. What I hope is that the writing is creative and engaging even as the social justice aspects of death and dying are.

Why do I write what I do?

The simple answer is I write about death and dying because I'm fascinated and often perplexed by how individuals reckon with it. I don't think it's false humility for me to say that it's easy to write about dying; death is inherently profound and dramatic. Sure, losing patient after patient, always grieving takes a toll--I'm constantly in awe of hospice workers, doctors and nurses--but I've never had to explain why this project matters or why we should care about how we die. It's impossible to write about someone's death and the challenges they've encountered without getting emotionally involved, without encountering pain and struggle, without being schooled on empathy and sympathy all the time. In an environment where decisions are so limited and poignant, I have been taught by my patients and interviewees what setting priorities is all about. I joke that my next book will be about puppies and butterflies but I doubt it. I like the weight of this subject. And I have to admit that it's a subject, like religion, that makes people squirm. I like that.

How does my writing process work?

I'm terribly neat and organized, I think because I'm afraid of losing details, afraid that I won't recall an experience or emotion. I'm kind of flighty and I don't want to miss anything important so I can't go anywhere without a notebook. That wealth of material often leads to culling details or incidents that later, in context or on the page, lose their vitality or become redundant. I've got a building pile of clippings, notes, and articles for each chapter and because I've been working on this project for so long, some of them have had to shift around until they found a home. But I did, at least for this project, have to start with a fairly refined outline. Of course, I'm always proving myself wrong, always rearranging things, either in the process of writing (which is definitely the best way of thinking/explaining/discovering for me) or with new research. Because I have this kind of organization and structure, I'm able to experiment with how to best juxtapose different issues and contexts. For me the adage is true: form is liberating.

Right now, with a deadline looming, my schedule is really structured. I work at home and control my schedule and environment as much as possible. When I'm cranking, I'm pretty much 9 to 5. I don't get online till noon, I have daily and weekly goals. And I'm happy like a kid when I meet them. I've never been good on limited sleep so I try to have strict wake and bed times. I'm kind of like an old lady that way. And I have to edit on paper. If I try to read my own stuff online, I get lost. So I have to print out a draft, spread it out on my dining room table or the floor. Then I can see it.

I'm lucky to have a great writing community, from the talented and astute members of my writing group to fellow travelers who are engaged with death and dying, to my agent, Laurie Abkemeier, who has turned out to be a brilliant reader of my work. Often, I find myself writing something and running it through a couple of lenses: a bioethicist, a great long-form journalist, my sister, an academic friend. It's not that I'm trying to write for everybody (although I hope what I am doing is broadly engaging) but that I want to be sure I'm thinking in the round rather than coming at anything with a destination already in mind. Doing so keeps me from making assumptions, and that's the purpose, right? To see and record, to describe and explain as honestly as I can.

Tuesday, June 3, 2014

Spring Sprung.

I just got back from India which means I'm constantly groggy with jet lag. But it's been a tremendous spring with lots of new writing and events. It helps to sum it all up; proof that I've been happily busy. 

The best and brightest news is that the book I've been researching for about 6 years will... become a book! SITTING VIGIL: IN SEARCH OF A GOOD DEATH will be published by Beacon Press in 2015. No small thanks goes to my brilliant agent, Laurie Abkemeier, for finding me, for believing in this project from the beginning, and for holding my hand through the process. I'm so tickled. And I'm so on lock-down. The deadline for the manuscript is this fall.

A host of other little successes and articles have kept me busy. Here are some links:

My time in India straddled the conclusion of the national election in which the Congress party, in power almost uninterruptedly since the time of Indian independence in 1947, was defeated by the BJP. The new Prime Minister, Modi, represents an extraordinary overthrow of political philosophy. I wrote about Modi, and an Indian yoga guru, Baba Ramdev, who aided Modi's election, for Killing the Buddha, "Whose 'India First'?".

As a new contributing nonfiction editor at the online literary magazine, Guernica, I was lucky enough to help edit an article by academic Wendy Pearlman on the Syrian uprising and how it has affected individual lives there. Read Pearlman's "Fathers of Revolution" when you can. It's stunning.

In April I got to read, along with Alia Malek and Erika Anderson, at a Big Umbrella/Guernica sponsored event. It was fantastic fun--even though I was nervous to be reading... about kidneys. I read "What's a Kidney Worth?" one of the earlier installments of my column at The Revealer, a publication of The Center for Religion and Media at New York University. Writing the monthly "The Patient Body" column has been pure joy. And it's ongoing so keep an eye on The Revealer if "issues at the intersection of religion and media" are your thing.

I wrote two book reviews for Bookforum this spring. The first (FEB/MAR 2014) was of Megan Hustad's More than Conquerors: A Memoir of Lost Arguments and the second (APR/MAY 2014) was of Charles Marsh's Strange Glory: A Life of Dietrich Bonhoeffer. If you don't subscribe to Bookforum, well, you should. Both, so far, are only in print.

On April 3 I was honored to speak at Colgate University's Lambert Institute for Civic and Global Affairs. Hamilton, New York, is so charming and the drive up and back were so gorgeous. But the best part was meeting faculty and students who were perfect, curious and insightful hosts.

For Guernica's special issue on the American South in March, I wrote about the increasingly Southern practice of execution. You should check out the entire issue, which will soon become an ebook, here.

In February I got to write about marijuana and hospice for OnFaith. Here's a little excerpt: "The ironies of how we regulate moral behavior were not lost on me. Nor would they have been lost on most anyone who happened to observe our smoking through the window of her luxurious apartment on Central Park West."

Also in February I was asked to present a talk for the Columbia University Seminar on Death. The conversation was so lively and smart that I came away with insights that continue to inform my work.

A special issue on End of Life was printed by the New York Law School Review in February. You can read my contribution, "The Limits of Autonomy: Force-Feedings in Catholic Hospitals and Prisons" online.

Now on to summer!

Thursday, December 19, 2013

Dying with Class

It's out! Yesterday Living with Class: Philosophical Reflections on Identity and Material Culture came off the presses. It's edited by Ron Scapp and Brian Seitz and includes essays by bell hooks, Stanley Aronowitz, Lisa Nell, Henry Giroux and others.

I've got an essay in the book that looks at class, race, religion and hospice use called, "Dying with Class."

You can by it here.

Read more about Living with Class at the Palgrave Macmillan site.

Here's the book's table of contents:

Introduction: Working Class; Ron Scapp and Brian Seitz
1. Class Dismissed: The Issue Is Accountability; bell hooks
2. Letter from a Lovelorn Pre-Radical: Looking Forward and Backward at Martin Luther King Jr.; Kevin Bruyneel, 
3. In Search of a New Left, Then and Now; Dick Howard
4. The Status of Class; Stanley Aronowitz
5. 'Fix the Tired': Cultural Politics and the Struggle for Shorter Hours; Kristin Lawler
6. Literary and Real Life Salesmen and the Performance of Class; Jon Dietrick
7. Money Changes Everything?: African American Class-Based Attitudes toward LBGT Issues; Ravi K. Perry, Yasmiyn Irizarry, and Timothy J. Fair 
8. Democracy without Class: Investigating the Political Unconscious of the United States; M. Lane Bruner
9. Re-Forming Class: Wealth, Culture, and Identity in South Africa; Lisa Nell
10. Whiteness as Currency: Rethinking the Exchange Rate; Emily M. Drew 
11. Dying with Class: Race, Religion, and the Commodification of a Good Death; Ann Neumann
12. New Materialisms and Digital Culture: Productive Labor and the Software Wars; Ted Kafala
13. Feminist Theory and the Critique of Class; Robin Truth Goodman
14. Criminal Class; Eric Anthamatten
15. Consuming Class: Identity & Power through the Commodification of Bourgeois Culture, Celebrity, and Glamour; Raúl Rubio
16. When Prosperity Is Built on Poverty, There Can Be No Foundation for Peace, as Poverty and Peace Don't Stand Hand in Hand; Pepi Leistyna
17. Solon the Athenian and the Origins of Class Struggle; Thomas Thorp
18. Memories of Class and Youth in the Age of Disposability; Henry A. Giroux

A Closely-Held Business

You can read the latest installment of my "Patient Body" column at The Revealer! I look at the current cases pending in the US Supreme Court, brought by Hobby Lobby and Conestoga Wood Specialties, that challenge employees' rights to full health care coverage. Here's an excerpt:

Conflating Conestoga Wood Specialties with the Hahn family, which the repeated use of “closely-held” means to do, is a way to erase the separation between the family and the corporation. Non-profits are exempt from some general laws that are otherwise meant to protect the rights of workers. Why aren’t “closely-held” corporations? The real question before the US Supreme Court then, despite the other many arguments for and against the “contraception mandate,” is this: whose beliefs are more important, an employer’s or an employee’s?
The Conestoga appeal states:
The question presented is exceptionally important. Our nation was founded on freedom of religion, and our free-enterprise system allows entrepreneurs to pursue profit while also serving the common good. But the decision below puts these two foundational principles at odds. Must religious believers check their consciences at the door of their businesses, or may they generally live integrated lives of faith at work?
In other words, you own the business, you decide what “lives of faith” look like there. In a dissenting opinion of the district court decision Judge Kent Jordan wrote, “The government takes us down a rabbit hole where religious rights are determined by the tax code, with nonprofit corporations able to express religious sentiments while for-profit corporations and their owners are told that business is business and faith is irrelevant. Meanwhile, up on the surface, where people try to live lives of integrity and purpose, that kind of division sounds as hollow as it truly is.”
But what of Conestoga employees’ “integrity and purpose?” What must they check at the door? While contraception–and abortion, for that matter–are legal, and discrimination against employees for race, gender, disability or religion is clearly illegal, the question of an employee’s rights is swept away in the structural details of the case.

Wednesday, November 13, 2013

Articles Update.

I have a new column, “The Patient Body,” at The Revealer, a publication of The Center for Religion and Media at New York University, where I was editor for three and a half years. When I stepped down in June, I was delighted to initiate the column which examines issues at the intersection of religion and medicine.
You can read the first installment on assisted suicide, “An Irresistable Force,” here and the second on kidney donations, “What’s a Kidney Worth” here. The fantastic Kali Handelmann is The Revealer’s new editor; I remain a contributing editor.
I’ll have an article in the New York Law Review in January 2014 that takes off from my Guernica piece earlier in the year and examines two places in the US where a patient can be fed against their will: a US prison and a Catholic hospital. The article has been a long time coming and is adapted from a talk I gave at the law school last year. I’m excited to see it in print!
My essay on race, class and hospice use will appear in Living With Class: Philosophical Reflections on Identity and Material Culture, a new book edited by Brian Seitz and Ron Scapp (Palgrave Macmillan, December 2013). You can pre-order Living with Class here.
In September I wrote about a controversy regarding stem cell research and the Vatican for Religion & Politics. The article, “The Vatican’s New Clothes: Very Small Embryonic-Like Cells and Faith in Evidence Not Seen,” examines new research the Catholic Church invested one million dollars into, VSEL cells that, if properly harnessed, could prevent the use of embryonic stem cells which the church opposes. Scientists have debunked the research, claiming that it is false and ideologically driven. I interviewed leading bioethicists as well as Catholic and non-Catholic opponents of embryonic stem cell research. The piece was picked up by the Sidney Hillman Foundation. You can read it here.
From May:
It’s been exciting to watch a recent article I wrote for Waging Nonviolence (prompted by their brilliant editor, my friend Nathan Schneider) get picked up around the web.  “Guantanamo is not an anomoly” was picked up by Common Dreams and Salon!
After writing about Bill Coleman for Guernica magazine in January, I saw the (necessary, exciting) media explosion in April highlighting treatment of Guantanamo prisoners–and wondered why an essential part of the story was missing:  force-feedings, considered torture by most of the world, are done in U.S. prisons all the time.  That’s, in part, the point of my story on Bill.

Saturday, March 23, 2013

EOL Links

Michael Cook, editor of BioEdge, the Australian "bioethics" website that likes to think of itself as "pointed" and "edge"-y, wrote this after the new pope was selected earlier this month, clearly qualifying any positions they may take on bioethics issues as applicable only to... Catholic leadership:
The fact that about 6,500 journalists were reporting on the white smoke suggests that his ideas on bioethics ought to be taken into account, whether or not you agree with them. I hope that my own sympathies don’t colour the articles in BioEdge.

Australia continues to have a lively discussion about euthanasia.

Friend Ashton Applewhite will be giving a talk, "How Ageism Warps Our View of Long Life," at Cooper Union on Monday, April 8th at 6:30.  I don't necessarily agree with Ashton's premise but that doesn't mean we shouldn't go.  More details here.

The Journal of General Internal Medicine recently included an article by Amy S. Keller titled, "Out-of-Pocket Spending In the Last Five Years of Life," is a goodread!  For those banking on Obamacare to clean up our impending crisis regarding end of life care, this will be a call to consider the breadth and depth of social, economic and medical challenges we continue to face.  Care at the end of life is surely rationed, but not only by insurance companies.  Economic constraints and a failed social commitment to elders and the most vulnerable is catching up with us.  (via the excellent GeriPal)

Speaking of GeriPal, their March 21 email included this fascinating tidbit:

AAHPM decided to keep the "H" (for hospice), as reported by Tim Quill in the fall AAHPM quarterly (online for members only).  See this previous post introducing the controversy. The process of deciding about the "H" was thoughtfully done, including focus groups and a member survey.  Only 11% of members responded (guilty as charged) but 87% of those who responded felt the current name describes "who we are and what we do."

For those of you who haven't been watching the discussion, the H has been contested by some who felt that hospice was too strongly associated with death and therefor tainting the care and benefits of the rest of the organization... palliative care.  Long there has been a move to make palliative care an overall standard of care for every patient.  The fact that it has in some ways come out of the hospice movement, some felt, conveyed to the public that palliative care was really only for the dying.  Essentially, it was a bit of a branding conversation.

Don't miss Aanand D. Naik's argument, also at GeriPal, of "Why Choosing Wisely Will Have Limited Success."  The Choosing Wisely campaign is aimed at doctors, whose "decisions ultimately account for for over 80% of all health care expenditures."

Elizabeth Dzeng writes at "The Health Care Blog" about a recent case that illustrates how the Hippocratic call to "do no harm" is often confused with "do everything," "Hippocratic Hypocrisy: When it Comes to CPR, Is Less Care Actually Better":

Doctors at another hospital said there was nothing more they could do, but his family desperately wanted him to live so they brought him to our hospital.
The fistulas in his abdomen were so large, his bowels were open to the air. Blood frequently gushed out of his wounds, necessitating blood transfusions and other desperate measures. The only way to stop the bleeding was to push hard on these wounds, which inflicted excruciating pain. Despite these aggressive treatments, there was no hope of long-term survival.
 His family was not ready to let him go and so they told us to take any measures possible to keep him alive. In order to do this, I would have to crack his ribs during chest compressions and electrocute him in an attempt to restart his heart. Regardless of whether we could keep the heart beating, the rest of his body would still be irreparably consumed by cancer.  This was, in my view, the wrong choice from an ethical and clinical perspective.  It was anguishing to be forced to inflict this sort of violence on this dying man. How could I uphold my oath to do no harm when I knew he was leading a tortuous existence, and yet I was instructed by his family to keep him alive and in this state?
Read the rest of Dzeng's brilliant article, then catch this one from today's New York Times about the FDA and regulation of defibrillators.  Clearly the author is contributing to the public's belief that resuscitation, whether by manual CPR and/or defibrillators, is guaranteed recovery.

The devices, which can be found in malls, airports, casinos and churches in addition to medical settings, re-establish cardiac rhythms in patients whose hearts have abruptly stopped or lost their regular beats.  Such cardiac arrests kill as many as 400,000 people a year in the United States, according to the American Heart Association, more deaths than caused by Alzheimer's disease, diabetes and accidents combined.

Did "automatic external" defibrillator manufacturers pay for this plug? Ok, just kidding.

Also at The Health Care Blog, Elaine Warples talks about impending death, "Truth at the End of Life."

At his Medical Futility Blog, Thaddeus Pope points us to three upcoming presentations on consciousness in persistent vegetative state patients.  The issue is particularly appealing to those who oppose the removal of artificial life support from persistent vegetative state patients like Terri Schiavo, including the Catholic Church leadership.

Remember when coverage for voluntary advanced care planning was removed from Obamacare without so much as a struggle?  Representative Blumenauer has introduced HR 1173 to institute coverage for such planning with a physician into the Social Security Act, via Medicare.  Blumenauer is from Oregon, where Death with Dignity is legal, and has been a constant advocate for end of life issues. (also via my smart friend Thaddeus Pope at Medical Futility Blog)

British Columbia's federal court is hearing an aid in dying appeal case right now.  Here's one ruffling headline:  "Banning assisted suicide akin to 'torture'"

Former governor of Washington State, Booth Gardner has died.  He was a champion of aid in dying.  Gardner was 76 and died of Parkinson's disease.  Read more here and here.

"Belgium Becomes World Leader in Harvesting Organs after Euthanasia," writes hyperbolic LifeNews.  Well duh.  Euthanasia's basically only legal in Belgium and a couple US states.  While methods of "harvesting"organs can be controversial, this piece is too ideological to be helpful to the discussion.