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.


Saturday, January 19, 2013

The Longest Hunger Strike

For the past year, I've been researching the case of William Coleman, a Connecticut prisoner who hasn't eaten solid food in more than five years.  Bill is hunger striking to bring attention to what he says is a wrongful conviction.  When his health becomes dire, the prison medical staff force feed him.

Last week Guernica Magazine published my article, "The Longest Hunger Strike,"which was edited by the amazing journalist Jina Moore.  I'm delighted that Longreads and The Sidney Hillman Foundation have picked up the story.  

Here's a clip:

“I would add, for what it’s worth:” Appel continued, “Once in my life, I put a feeding tube in someone who didn’t want it.” An elderly person had, when competent, said that he wanted everything done to continue his life. Then he became demented.

“Ethically, it wasn’t a transgression—we were honoring his wishes—but practically it was one of the most unpleasant things I’ve done in my life. I would never do it again, even if somebody wanted me to.”

“Tell me how unpleasant,” I said.

“Rape is actually a very reasonable analogy. You feel like you’re physically protruding… putting something in someone’s body they are actively resisting. Eventually somebody has to hold them down. It turns your stomach.”




Sunday, November 11, 2012

New York Law School Symposium on End of Life

I'm speaking at a fantastic symposium at New York Law School on Friday.  You really should come by!

Here are the details:


Symposium: Freedom of Choice at the End of Life
Patients' Rights in a Shifting Legal and Political Landscape

A Justice Action Center Symposium
Friday, November 16, 2012
New York Law School
Additional support provided by the American Bar Association Commission on Law and Aging; the National Academy of Elder Law Attorneys; the Elder Law Section of the New York State Bar Association; Compassion and Choices of New York; and Collaborative for Palliative Care, Westchester/NYS Southern Region
The concept that individuals have the right to choose the manner and time of their death and the right to decline unwanted treatment has been a relatively recent development, as is the law that a person does not lose these rights upon incapacity. Individual rights are not uniformly recognized in practice, however, and there are many limits on when and how they can be enforced. This conference will address a broad range of issues including impediments to honoring those rights, advance planning tools for persons to ensure compliance with their choices and how to enforce them, legislative and decisional developments, surrogate decision-making for patients whose wishes are not known, pain management and palliative care, hospice, aid in dying, ethical dilemmas in decision-making, medical ineffectiveness of treatment (“futility”), concerns of persons with disabilities, the effect of religion on law and policy, and how the media treats these issues.
If you have questions about this program please contact JAC@nyls.edu.

CONTINUING LEGAL EDUCATION
This program has been approved for a maximum of six (6) credits of continuing legal education (CLE) credit in professional practice for both transitional and non-transitional attorneys. There is no charge for CLE above and beyond the normal cost of registration.

REGISTRATION
Conference registration is now open. Click here to register now.

CONFERENCE SCHEDULE
All events will take place in the Event Center, New York Law School
8:15am–9:00am
Check-in for pre-registered guests

Continental breakfast will be available in the Event Center.
9:00am–9:45am
Welcome
  • Peter J. Strauss, Symposium Chair, Adjunct Professor, New York Law School
  • Kathryn L. Tucker, JD, Director of Legal Affairs, Compassion & Choices, Adjunct Professor of Law, Loyola Law School/Los Angeles

9:45am–11:00am
Panel I: Taking Control and Preserving Autonomy

This panel will discuss the need for advance planning and one’s rights to do so, available advance directive tools: health care proxies, living wills, POLST (MOLST); enforcement of patient rights and emerging issues, trends and new legislation.
Attendees at this panel are eligible for 1 CLE credit in professional practice.
  • Moderator: Peter J. Strauss, Symposium Chair, Adjunct Professor, New York Law School
  • Nadia N. Sawicki, Assistant Professor, Beazley Institute for Health Law & Policy, Loyola University Chicago School of Law
  • Lisa Comeau, Attorney, Appellate Counsel
  • David C. Leven, Executive Director, Compassion and Choices of New York
  • Mary Beth Morrissey, Esq., Ph.D., M.P.H.; President, Collaborative for Palliative Care, Westchester/NYS Southern Region

11:00am–11:15am
Break

11:15am–1:00pm
Panel II: Real Time Critical Issues

This panel will explore best practices in End of Life Care: palliative care, pain management, the “double effect”, hospice and transitional care. In addition, the panel will discuss the conflict between family and physician over medically ineffective treatment (“futility”) and the ethics of decision making for persons with dementia.
Attendees at this panel are eligible for 2 CLE credits in professional practice.
  • Moderator: Carlin Meyer, Director, the Diane Abbey Law Center for Children and Families, Professor, New York Law School
  • David Muller, M.D., Professor of Medicine and Dean for Medical Education, Mt. Sinai School of Medicine, New York; Director, Visiting Doctors Program
  • Gabrielle Goldberg, M.D., Assistant Professor, Geriatrics and Palliative Medicine, Mt. Sinai School of Medicine, New York; Education Director, Hertzberg Palliative Care Institute
  • Thaddeus M. Pope, JD, Ph.D., Director, Health Law Institute at Hamline University, Adjunct Associate Professor, Albany Medical College
  • Bonnie Steinbock, Ph.D., Professor of Philosophy, University at Albany/SUNY
  • Paul T. Menzel, Professor of Philosophy Emeritus, Pacific Lutheran University

1:00pm–2:15pm
Lunch and Keynote Speaker

Attendees at this panel are eligible for 1 CLE credit in professional practice.
  • Introduction: Peter J. Strauss, Symposium Chair, Adjunct Professor, New York Law School
  • Honorable Sol Wachtler, former Chief Judge, New York State Court of Appeals

2:15pm–4:15pm
Panel III: Special People, Special Issues

This panel will discuss the issues of concern for people with disabilities and the conflict between organizations dedicated to protecting their rights and end-of-life advocates. The panel will discuss the views of some of the major religion and whether conservative theological values can co-exist with patient choice. Finally, the panel will conclude with a discussion of the quality of medical care provided to prisoners and how their end of life choices are treated.
Attendees at this panel are eligible for 2 CLE credit in professional practice.
  • Moderator: Sue D. Porter, Compassion and Choices
  • Alicia Ouellette, Associate Dean for Student Affairs and Professor of Law, Albany Law School; Professor of Bioethics at Union Graduate College/Mt. Sinai School of Medicine Program in Bioethics
  • Rev. Dr. Martha R. Jacobs, BCC, Adjunct Professor, New York Theological Seminary; Chaplain, New York Presbyterian Hospital - Columbia Campus; Author, A Clergy Guide to End of Life Issues; Blogger: Huffington Post
  • Ann Neumann, Editor, The Revealer, The Center for Religion and Media, New York University
  • Honorable Brian Fischer, Commissioner, New York State Department of Corrections
  • Carl J. Koenigsman, M.D., Deputy Commissioner and Chief Medical Officer, New York State Department of Corrections and Community Supervision

4:15pm–4:45pm
Plenary Session: How the Media Affects Policy and Individual Rights, From Schiavo to Death Squads
  • Sherrie Dulworth, R.N., Healthcare Management Consultant and Freelance Reporter

4:45pm–5:00pm
Closing Remarks
Reception to follow

Saturday, July 7, 2012

Quick Links: You should be reading...

It's been one hell of a long spring, one unnaturally stretched to the front edge of July by a conference at work and a conference in Chicago.  The later was the product of efforts by Compassion & Choices to gather and motivate the troops (the former was a gathering of religion and media luminaries hosted by my employer, NYU).  In Chicago I got to hang out with some of the folks who are busy working at the intersections of faith, advocacy, ethics and medicine.  The trip out there payed off in a chance to cavort with people I've been in touch with since I started paying attention to end of life issues, participation and attendance of some informative panels, a new research location for my book, and one particularly interesting panel invitation (NY Law School, I'll keep you posted).

As I prepare to head out on a longer research trip in a few weeks (Montana, Seattle, LA) and, god willing, getting some rest after two whirlwind work years, I'll be hanging out here more often.  I hope you'll join me.

And while you're at it, read Bill Peace's comment to my prior post!  Bill and I are friends; he's disabled and I'm not; we disagree on a number of things--and not always respectfully, of course--but we keep the friendship going.  My response to his comment is:  What--legislatively, practically, pragmatically--does his experience as a discriminated member of society have to do with the legalization of aid in dying (or even removal of terminal patients from unhelpful treatments, etc)? 

I think I know what Bill's answer would be.  Discrimination is real and so is fear.  People confuse and conflate disability with terminality all the time.  I would never take him to task for how he feels.  Or over not seizing his autonomy from hypothetical others, including "pro-life" organizations that have worked very hard to recruit disabled individuals and groups to "their side"--with scary threats of a "culture of death" just waiting around to kill off the "abnormal."  But--and this is really, really important to my point--Bill's had to fight his entire life to make his own health care decisions, to convince everybody that his pain and his life are worth something to him.  Individuals wanting to do the same are no threat to Bill.

Some good links I came across this week:

Alex Smith at GeriPal on how to explain what hospice is new medical students, interns...

What's wrong with eradicating breast cancer in newborns?  Or Down Syndrome?  I want a real answer that doesn't romanticize disability and doesn't compromise the respect given to those currently living with disability.

Simon Rippon at The University of Oxford tries to pull apart the three strands of what we now call persistent vegetative state (PVS):  "locked in," minimally conscious, and PVS.  The reason for his diligence?  To ask who can end their life.

The August issue of the Journal of Hospice and Palliative Nursing is now available.  Note that you don't have to subscribe or be a member, you can purchase individual articles.

Don't miss the recent flare-ups about aid in dying in Canada (and here and here).