NY Times Quotes Diane Coleman - but without context

Today, the New York Times published a long story on hospice and palliative care, and how doctors struggle with balancing the transition from active treatment to palliative care in the final stages of terminal illnesses. Some of it is worked within the context of the current "debate" around advance directives in the health care reform debate.

Here's an excerpt from "At the End, Offering Not a Cure, But Comfort":

Most doctors do not excel at delivering bad news, decades of studies show, if only because it goes against their training to save lives, not end them. But Dr. O’Mahony, who works at Montefiore Medical Center in the Bronx, belongs to a class of doctors, known as palliative care specialists, who have made death their life’s work. They study how to deliver bad news, and they do it again and again. They know secrets like who, as a rule, takes it better. They know who is more likely to suffer silently, and when is the best time to suggest a do-not-resuscitate order.

Palliative care has become a recognized subspecialty, with fellowships, hospital departments and medical school courses aimed at managing patients’ last months. It has also become a focus of attacks on plans to overhaul the nation’s medical system, with false but persistent rumors that the government will set up “death panels” to decide who deserves treatment. Many physicians dismiss these complaints as an absurd caricature of what palliative medicine is all about.

Still, as an aging population wrangles with how to gracefully face the certainty of death, the moral and economic questions presented by palliative care are unavoidable: How much do we want, and need, to know about the inevitable? Is the withholding of heroic treatment a blessing, a rationing of medical care or a step toward euthanasia?

Facing the end stages of a terminal illness is the focus of this very long article. And it comes as something of a non sequitur when NDY president Diane Coleman is quoted toward the end of the article:

In the political wars over end-of-life care, advocacy groups for the disabled are often as adamant as religious groups in challenging measures that could be seen as hastening death. “Health care providers encounter people at a time of crisis; they see the worst happening,” said Diane Coleman, the founder of an advocacy group for the disabled, Not Dead Yet. “They don’t see them get through it and say, ‘Even with my functional losses, I’m still having a good time.’ ”

In the wrenching context of imminently dying, Coleman's statements come across as irrelevant at best.

So what happened?

Diane Coleman was interviewed by this reporter for 45 minutes. And the context of that longer conversation covered much broader ground. For example, they discussed "futility" policies. They also discussed how advance directives can apply when someone is critically injured - and whether they live or die depends on the choices made and the treatments given or withheld. They discussed Peter Singer's essay on "rationing" - in which he suggested that people with significant disabilities could be legitimately be denied health care based on their disability status - an essay which was published in the NY Times Magazine. (Singer and his essay aren't mentioned in the article)

The end result of using this particular quote - accurate in the context of the conversation with the reporter - is that Coleman and NDY come off as being confused and off-the-mark.

That's a risk whenever you do an interview that will be edited - for print or broadcast media.

It would be interesting to know if the decontextualized quoting was the work of the reporter - or if it was her editor's pen at work.

After all, even if they didn't mention Singer's essay on rationing, they're well aware of NDY's role in enlisting disability advocates to denounce the piece - and the editorial choices that led to its publication. --Stephen Drake

Australia: Christian Rossiter wins the only "right" that society is willing to grant him

There were a number of developments over the past week or two that will need to be highlighted here. I am still catching up.

In a case of déjà vu (we've had similar cases in the U.S.), a man with quadriplegia has won the "right" to starve himself in Australia.

I was looking for the right source material to summarize the situation, and found what I was looking for when reading the blog Turner & Kowalski - it's relatively new but is written by some folks I've encountered elsewhere in the blogosphere. Here's an excerpt from the description of the blog:

We’re a bunch of disgruntled autistic self-advocates, who have been blogging under various guises on different blogs for some years now.

Disgruntled, because there’s so much rampant hatred and bigotry towards autistics.

They're serious - I've seen the harassment some of them have received.

In one of their latests posts, the authors of the blog featured a series of links under "Freak Week."

That's where I found the article - the blog entry - about this latest "victory" for the "right to die." Hoyden about Town's Lauredhel writes says everything we need to know about Christian Rossiter's right-to-die:

I’ve been trying and trying for many days to write about the Christian Rossiter “right to die” case, and I just haven’t managed more than an incoherent wargle. A chat with rb has convinced me that that’s better than nothing, so here it is.

If you haven’t been following along, that’s probably because all of this has been happening in Western Australia. Christian Rossiter is a forty-something year old bloke who used to climb rocks and cycle and do all sorts of physically active stuff. He now has a high spinal injury, and can no longer do those things.

So what have we, as a society, done for him? Set him up with communication devices such as a internet-enabled computer he can operate (he has talked about not being able to turn the pages of a newspaper)? Offered him opportunities for social inclusion, to the fullest extent that he can manage it? Equipped his home and supplied home nursing care so that he could live in his community and retain his social context? Provided any sort of life enrichment whatsoever?

No. We shoved him in a nursing room, in front of a television set. Oh, but it’s cable, so that’s alright, eh? We did all we could!

Now he wants to die. He’s been fighting for his right to refuse nutrition, because he can’t handle being shoved in a bed in a nursing home with nothing but Foxtel for company. Today, he won that right.

Everyone’s talking about this being a “good outcome”, a “win”. Apart from the folks who say that it’s not that great, because hey, we should be knocking him off quicker. They’re all talking about how obviously they would choose euthanasia too, if they couldn’t walk or eat or blow their nose. Because such a life could never be worth living. Because such a person is valueless.

All I can come up with is gurgles of rage and horror.

I have not yet seen ONE PERSON question his treatment, question the way we as a society have failed him – NOT in our lack of provision of a way to quickly bow out, but in our COMPLETE failure to support him in finding out whether maybe, just maybe his life could be worth living.

In my mind, she's nailed the issues around so many of these situations completely. No one cares about why an old, ill or disabled person wants to die. Might be too much bother and expense to find out what they really want or need.

Please read the entire post - and leave a comment. --Stephen Drake

RELEASE: Disability Community Denounces Rationing Argument in NYT

(Originally Posted on Justice For All Blog on 8/14/09 - and sent to media outlets)

August 14, 2009

Disability Community Denounces Rationing Argument in NYT

From Not Dead Yet (8/14/09):

FOR IMMEDIATE RELEASE

Media contact: Stephen Drake, Research Analyst, Not Dead Yet

Not Dead Yet and Coalition Denounce

New York Times Magazine Article

Coalition Sends Letter to NYT Magazine Asking for Dialogue on Disability Issues

WASHINGTON, DC – August 14, 2009 – Not Dead Yet, along with more than 40 other disability organizations, including the American Association of People with Disabilities (AAPD), has signed on to a letter to New York Times Magazine Editor Gerald Marzorati denouncing a July 15 article by ethicist Peter Singer. Singer’s article argued for rationing health care by denying treatments to people with disabilities based on the assumption that our lives have less value than the lives of nondisabled people.

“For The New York Times Magazine to publish an article calling for health care rationing that would discriminate against people with disabilities one week before the anniversary of the Americans with Disabilities Act shows how out of touch the leadership at The New York Times Magazine is,” said Not Dead Yet President Diane Coleman. “Peter Singer is a sloppy ethicist who should not be given a forum by a publication as credible as The New York Times. His piece, published at a key time in the health care debate, gives fodder to critics whose goal is to kill any reform by raising the specter of government supported euthanasia.”

The letter, written by Stephen Drake, Research Analyst for Not Dead Yet, states:

“…This is Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy that we have read. His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities are already well known.

While this is a bolder assault than we have seen from Professor Singer in the past, it’s hardly surprising. What’s surprising and deeply disturbing is that the NY Times editorial staff have sought him out as a writer on more than one occasion...”

The coalition has requested the following of The New York Times Magazine:

1. The NY Times staff needs to define and clarify its understanding of disability as a basic human rights issue.

2. If the current stance of the NY Times is that the lives of people with disabilities are, in fact, a drain on health care sources, it should be stated on record.

3. Discuss training in the basics of covering disability in news stories – beyond the “human interest” and “medical” angles.

4. Cover the difference between “analysis” and “appealing to bigotry” in public policy discussions.

To read the letter in its entirety, visit http://notdeadyetnewscommentary.blogspot.com. For more information about AAPD’s views on the Peter Singer piece in The New York Times, please visit www.aapd.com.

Not Dead Yet, 497 State St.,

Rochester, NY 14608

Phone: 585-697-1640; Fax: 585-697-1641; Email: sndrake@aol.com

http://www.notdeadyet.org

Catching Up - Followup on Singer, Etc.

Last week, I was on vacation and was fairly successful at staying away from work stuff, except for what was necessary in getting the NY Times Letter out.

Since the time it was made public, I've been contacted by a lot of people - through the blog, email and facebook - wanting to get added to the list of endorsers. This week, I'll coordinate with the folks at AAPD to figure out a mechanism for that to happen and a "master" list that will be the one with the latest updates.

I will also try to fix the weird coding issues on the entry I linked above. I was trying to save time, took a short cut and lived to regret it.

I'll also try to start replying to comments here within a day or two.

More later today... --Stephen Drake

Peter Singer in NY Times Magazine: Disability Community Responds!

Today, a letter has been sent out via postal mail to Gerald Marzoratti, Editor of the New York Times Magazine. The letter conveys complaints about the content of the magazine's recent essay, "Why Must Ration Health Care," which offers up people with disabilities as sacrifices in the efforts to rein in health care costs.

The letter was composed by NDY in collaboration with the JFA Action Network, which also worked to enlist the organizations and individuals who have cosigned the letter.

If you read this and agree with this, we will be more than happy to add the names of organizations and individuals to this already long list of endorsers.

August 11, 2009

Mr. Gerald Marzorati

Editor, New York Times Magazine

620 Eighth Avenue

New York, NY 10018

Re: Peter Singer “analysis” on health care rationing and people with disabilities

Dear Mr. Marzorati:

Was it the New York Times Magazine’s intention to assault or diminish the basic tenets of the disability community's civil rights law virtually on the eve of its 19th anniversary? The New York Times Magazine’s decision to publish Peter Singer's latest long essay entitled 'Why We Must Ration Health Care' (7/15/09) less than two weeks before the anniversary of the signing of the Americans with Disabilities Act demonstrates either deliberate malice or reckless disregard of the reality of disability as an important demographic representative of nearly 20% of the American population.

As anyone who has read ‘Why We Must Ration Health Care’ knows, Singer spoke “hypothetically” of assigning a life with quadriplegia as roughly half that of a life without any disability at all. On this “hypothetical” basis, Singer lays out a case for denying health care to people with significant disabilities on the basis that our lives have less value than the lives of nondisabled people.

This is Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy that we have read. His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities are already well known.

While this is a bolder assault than we have seen from Professor Singer in the past, it’s hardly surprising. What’s surprising and deeply disturbing is that the NY Times Magazine’s editorial staff have sought him out as a writer on more than one occasion.

To be fair, the NY Times Magazine has published some excellent articles in the past that have covered the disability experience as more than a mere medical issue. The late Harriet McBryde Johnson had several thoughtful articles published in the NY Times Magazine describing the historical oppression directed at people with disabilities, contrasted with the wonderful opportunities that unfold if that oppression is lifted. When Harriet died, many of us were taken aback when the NY Times Magazine editors passed over Harriet’s friends and colleagues to write an end-of-year tribute in the year she died. That honor was bestowed on Professor Singer. Perhaps we should have taken that as a sign of things to come.

Reluctantly, we have to suspect that the NY Times Magazine accepted this piece because of its content, agreeing with Singer that our lives have lessened value and that we represent a drain on the collective economic and health care resources of our country. It’s hard to imagine the NY Times Magazine green-lighting an article that targeted any other group in such a way – e.g. immigrants, the poor, or other groups who have been targeted as scapegoats in the health care debates. Did the editor in charge of publishing this issue even notice that Singer used no factual information at all to support his devaluation of people with disabilities?

We have to wonder what went through the heads of the editorial staff when they thought about the reactions of readers – with or without disabilities – to the large graphic that read “__ YEARS OF A NONDISABLED LIFE IS WORTH __ YEARS OF A DISABLED LIFE.”

Contrast this with Senator Edward Kennedy’s essay on the fight for universal healthcare in the current issue of Newsweek. Talking about people with disabilities he said, in part:

Social justice is often the best economics. We can help disabled Americans who want to live in their homes instead of a nursing home. Simple things can make all the difference, like having the money to install handrails or have someone stop by and help every day.

Obviously, the definitions of justice that Senator Kennedy uses are very different from the definitions favored by Peter Singer and the NY Times Magazine.

Without using the term, Senator Kennedy is also describing the social model of disability. In the traditional medical model of disability, the “problems” of disability are all situated within the person. The medical model defines people with disabilities as having a lower “quality of life” than their nondisabled peers. In reality, most of the limitations put on people with disabilities are socially defined – and can be remediated in the same way. The Americans with Disabilities Act is built on the principles of that social model, acknowledging that disability is a natural part of life and that society has to reflect that reality in an inclusive and supportive way.

The proposed treatment – or nontreatment – of people with disabilities also violates the UN Convention on the Rights of Persons with Disabilities, which was signed by US Ambassador to the United Nations, Susan Rice. She signed the Convention on July 30th at the direction of President Obama. While the Singer essay violates the spirit and vision of the Convention in numerous ways, the most pertinent section of the document is spelled out in Article 25 (f), in which obligates signatories to “prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.” This is important. Article 4(d) states that countries that have signed the Convention agree to “refrain from engaging in any act or practice that is inconsistent with the present Convention.”

The American disability community, Senator Kennedy and an ever-growing majority of the international community all recognize that public policy has to embrace the inherent equality of the lives of people with disabilities – and public policy must reflect that in practice. The NY Times Magazine and Professor Singer stand opposed to the more progressive voices of social justice, inside and outside of the United States.

We, the undersigned, protest this treatment of people with disabilities within one of the most important public policy debates in our time. The New York Times Magazine has failed in its public responsibility to treat citizens of the United States with the simple respect we deserve by serving up people with disabilities as a drain on public resources and to legitimize the denial of medical care to those of us who need that support the most.

The editorial staff of the New York Times Magazine needs to meet with representatives of disability advocacy groups, with the following goals:

1. The NY Times staff needs to define and clarify its understanding of disability as a basic human rights issue.
2. If the current stance of the NY Times is that the lives of people with disabilities are, in fact, a drain on health care sources, it should be stated on record.
3. Discuss training in the basics of covering disability in news stories – beyond the “human interest” and “medical” angles.
4. Cover the difference between “analysis” and “appealing to bigotry” in public policy discussions.

Urgently,

Organizations

National

Not Dead Yet

ADAPT

American Association of People with Disabilities (AAPD)

Association of Programs for Rural Independent Living

Bazelon Center for Mental Health Law

The Community Consortium, Inc.

Concrete Change

Edmonds Institute

Feminist Response in Disability Activism

Hearing Loss Association of America

Little People of America

National Coalition of MH Consumer/Survivor Organizations

National Association of the Deaf

National Center for Environmental Health Strategies

National Council on Independent Living

National Youth Leadership Network

Nonviolent Choice Directory

TASH

The Autistic Self Advocacy Network

The Center for Self-Determination

State/Regional

Access to the Arts, Inc.

ADAPT Chicago

ADAPT Montana

Californians for Disability Rights, Inc.

Center for Disability Rights

Center for Independent Living - Fresno

Community Resources for Independent Living - Alameda County, CA

Disability Options Network

Disabilities Network of NYC

Fair Shake Network

Green Country Independent Living Resource Center

Independent Living Center of Southern California

Independent Living Resource Center - San Francisco

MetroWest Center for Independent Living

Michigan ADAPT

Michigan Disability Rights Coalition

Oklahoma Association of Centers for Independent Living

Placer Independent Resource Services

Respect ABILITY Law Center

Services For Independent Living - Columbia, MO

Silicon Valley Independent Living Center

Students and Citizens Against Futile Ethics

The Whole Person, Inc.

Topeka Independent Living Resource Center

Individuals

Ana Acton

Susan Rushing Adams

Kirk C. Allison, PhD

Eliza Anderson

Navidad Arnett

Judith Badner

Rosa Barragan

Janine Bertram Kemp

Steven Black

Arthur W. Blaser

Mark Boatman

Marc Brenman

Lawrence J Brick

Elizabeth I. Burns

Brian Burrows

Josie Byzek

Maria A. Cabrera

Catherine F. Calhoun

Allie Cannington

Dr. Mary C. Cerreto

Carol Grosik Clark

Molly Cisco

Haddayr Copley-Woods

Mary Krane Derr

Margaret K. Dore, Esq.

Steven M. Eidelman

Meg Evans

Philip Ferguson, Ph.D.

Jill Gerrie

Clark Goodrich

Lisa M. Gwinner

Dustin J. Hankinson

Dr. MJ Hardman

Laura Hershey

Margaret Holt Baird, Esq.

Rev. Nan Hildebrand

Susan Houston

Dania Jekel

Bob Kafka

Neil Kapit

Denise Karuth

Tom Keogh

Molly King

Joseph F. Kras, MD, DDS

Sandra Gail Lambert

Sharon Lamp

Aubrie Lee

Jessica Lehman

Miriam Levine

Victoria Lewis, Ph.D.

Patricia Lockwood MS

Madonna Long

Ruth Deale Lowenkron

Calvin Luker

Tricia Luker

Liz Lyons

David K. March

Patricia A Martin

Theresa A. Martinosky

Ben Mattlin

Julie V. Maury

Ryan McDuffee

Eileen McGinn

Tina Minkowitz, Esq.

Jacinda Moore

Heidi J Moore

Carolyn Morison

Brian Mosley

J. Kenneth L. Morse

Janet Norman-Bain

Hector Ochoa

Tom Olin

Kay Olson

Stephen Pate

Alicia Paterni

Rob Pedlow Ph. D

Kathy Podgers

Andrew P. Porter

Edith M Prentiss

Sarah Pripas

Adarsh Pyarelal

Amy F. Robertson

Ralph Savarese, PhD

Phil Schwarz

Jeff Shannon

Alice Sheppard

Thomas K. Small

Eleanor Smith

Laura Smith

Phil Smith, Ed.D.

Raphael J. St. Johns, MS

Lorraine Stephens

Robin Stephens

Maria Strong

Lynne Tamor

Nathan D. Turner

Michael Volkman

Joy E. Weeber, Ph.D.

Kathi Whittaker

Rob Wilson

Alison Young

Tony Young

Lynn Zaritsky

Health Care Reform Hysteria - and My Own Version of Reality

As readers of this blog might remember, last May I was confronted by a representative of Lyndon LaRouche's organization at an anti-euthanasia conference. I felt compelled to address his rather shrill attack on what he termed Obama's "Hitler Health Care" from the podium and followed up the next day.

Since then, it seems a lot of folks are taking their lead from Lyndon LaRouche. I've grown tired of reading and deleting the references to Nazis and Hitler in emails and blog entries from right-wing opponents of the Obama administration - and of any kind of health care reform.

Backing off from the extreme fringe have been the accusations that certain proposals regarding the funding of counseling sessions for advance directives are actually a form of stealth euthanasia aimed at the elderly population. According to factcheck.org, the claims are demonstrably false.

Nevertheless, the continued the alarm about the promotion of advance directives seems to be reaching a bigger part of the population than those inclined to believe the worst about anything coming out of the Obama administration and a Congress controlled by members of the Democratic party.

Frankly, I think part of the reason that the public is nervous about the pitch on advance directives is that they've been promoted in a way that encourages mistrust.

To be fair, the first person I read to express alarm at one of the ways in which "end of life care" gets promoted was from Donald Gibson, writing in the journal Mental Retardation 25 years ago. Here is an excerpt from the article, which I used in an essay I wrote several years ago:

A careful examination of the hospice movement reveals the following. First, justifications for the hospice program are similar to those offered for non-treatment or active euthanasia of the individuals with mental retardation. Generally, these justifications are based on "quality of life" and economic cost considerations. Second, hospices may become the basis upon which a national death establishment is to be constructed. Third, the rejection of medicine's obligation to preserve life which is contained in the hospice literature and the tendency in the hospice movement to broaden the categories of people eligible for "care" suggest the possibility that hospice programs might be used for people with mental retardation who are denied medical treatment.

Some of what Gibson predicted has come to pass. We've seen court cases in both Pennsylvania and Wisconsin that were fought to reinforce the protections for people with intellectual disabilities - after one or more persons had been denied lifesaving care even though they weren't terminally ill.

Most of the concern, though, is about the growing population of elderly people. And that's where the marketing of advance directives becomes a problem for the Obama administration and Congress.

Over the past decade, advocates of advance directives and "end of life" care have increasingly touted advance directives in terms of expected savings of health care resources. So, on the one hand, the public is being told to fill out an advance directive as an exercise in autonomy while on the other hand, policymakers are being told that an advance directive results in less money spent during someone's final months of life.

For many of us, that raises a red flag, or at least a yellow flag of caution. I don't think that most of us think that the insurance companies, medical organizations, hospitals or the government value our autonomy that much. If they do, they're certainly good at keeping it secret.

Guess what? Touting advance directives as a way of reining in health care costs makes a lot of people nervous - even suspicious - about filling them out. If this comes as a surprise to the ethicists, medical professionals, policy wonks and legislators it just goes to show that they're not as smart as they think they are.

As to health care reform itself and what it will mean for people with disabilities...

For years, we've been finding ourselves fighting the advance of "futile care" policies and health care policies that threaten our health and safety. Personally, I expect those trends to continue. We'll be fighting those fights no matter which political party is in power or whether or not we get health care reform.

In the meantime, it might be nice if fewer people were excluded from affordable access to medical care. --Stephen Drake