Press Release: Anita Cameron and Samantha Crane Join Not Dead Yet Board

January 13, 2014Our News & Commentary BlogDiane Coleman

[Editor’s note: For a pdf formatted version of this press release, including photos of Anita and “Sam”, go here.]

As the 2014 new year begins, Anita Cameron and Samantha Crane join the Not Dead Yet Board of Directors. The Board consists of ten members from across the United States and two from Canada.

Cameron is a long time disability rights activist who serves in the leadership of the direct action group ADAPT. She was invited to the White House on two occasions, has met three sitting U.S. Presidents and two Vice-Presidents, helped to organize a national disability rights march to Washington, D.C. Cameron became the first visually impaired instructor with the Community Emergency Response Team (CERT) for the State of Colorado in 2012, and in 2013, became a CERT Program Manager for the State.

Recently, Cameron commented on a public education initiative involving both ADAPT and Not Dead Yet. “I love the fact that ADAPT and NDY have collaborated on an ad on the CBS Super Screen in New York City’s Times Square,” Cameron said. “This ad could have a crucial part in changing the way people with severe disabilities are seen by the public. I’m excited that through it, millions of people will begin to learn that life with disabilities is wonderful, that we are better off and more productive and engaged when we are in our own homes rather than institutional settings, and that our community is fighting for liberty and justice for all and invites the broader public to join us in this fight.”

Crane is a 2009 graduate of Harvard Law School and currently works as Director of Public Policy at the Autistic Self Advocacy Network’s national office. She previously served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C., and as an associate at the litigation firm Quinn Emanuel Urquhart, & Sullivan, L.L.P., where she focused on patent and securities litigation. From 2009 to 2010, Samantha served as law clerk to the Honorable Judge William H. Yohn at the U.S. District Court for the Eastern District of Virginia.

During law school Crane also interned at the Civil Rights Division of the U.S. Department of Justice, where she worked in the Disability Rights Section. She also interned at the American Bar Association’s Commission on Mental and Physical Disability, the Disability Law Center of Massachusetts and Harvard Law School’s clinical programs in special education and in disability and estate planning.

“Not Dead Yet and ASAN have, in the past, partnered together to fight the deadly perception that the lives of people with developmental disabilities are not worth living,” said Crane. “In many cases, this has led to denial of lifesaving medical care and even murder by caregivers. By joining the Not Dead Yet Board, I hope to continue and strengthen Not Dead Yet’s partnership with the developmental disability community to ensure that disabled people’s lives are valued.”

“Sam and Anita bring tremendous strengths as well as diverse backgrounds and skills to the NDY Board,” said Diane Coleman, founder and CEO of the organization. “I’m very excited about working with them more closely in the years ahead, and know that their fellow Board members share my enthusiasm as we pursue our goals in 2014.”

Let’s Have a REAL Discussion: Bioethicists Preach, Fail to Teach on Brain Death

January 7, 2014bioethics, brain death, brain injury, media coverage, media issues, medical issues, Our News & Commentary BlogArt Caplan, bioethics, brain death, brain injury, Jahi McMath, Zack DunlapStephen Drake

By now, most readers of this blog are probably familiar with the story of Jahi McMath, a 13-year-old girl who underwent surgery on December 9, 2013 at Oakland Children’s Hospital. During post-op recovery, she started bleeding. Eventually, she went into cardiac arrest. She was then put on a ventilator. Two days later doctors made a determination that she was brain dead. Between now and then, the family has been involved in legal battles to keep their daughter on the ventilator, and followed that with demands to be able to move her to a long-term care facility. As of yesterday, the family reports that their daughter has been transported to a long-term care facility that was willing to take her.

During this time, there has been a huge amount of angry, condescending commentary from bioethicists. Art Caplan, Division of Medical Ethics at NYU Langone Medical Center, has been the most prominent bioethics pundit and writer on the situation. (Note: several articles combine commentaries on Jahi McMath’s situation and the Texas case of a family fighting to have life-sustaining technology removed from a young woman – she carries a fetus and Texas law mandates that life-support be maintained until the fetus can be delivered, even in the case of brain death of the mother. It’s received less attention and we’re not addressing the issues in the case, which fall outside of NDY’s policy range.)

Here is some of what is being said about Jahi McMath, her family, and brain death in general:

From an Editorial in the Oakland Tribune: “There is no recovery from brain death. Ever. It is a uniform standard for being legally dead in California and nearly every other state.”
From a CNN story: “In Caplan’s view, it doesn’t do any families any good if hospitals ask them about mechanically continuing biological function in a brain dead patient. He says doctors should be more transparent about the finality of brain death.
“It just creates the possibility of a terrible scenario like the one that’s unfolded (in Jahi’s case), where the parents don’t really understand and then start to resist any removal of machines because they just want to hope that the worst possible thing did not happen,” he said. “I don’t think it’s kind to not be clear when death happens.”
Art Caplan and David Magnus in Times Ideas: “Jahi and Marlese are not injured or comatose or vegetative. They are deceased. They have been pronounced dead by multiple physicians who have conducted standard tests and diagnostic procedures. When a person is dead there is no longer any possibility of ‘life support’ by any technology or machine. When a person is dead there is nowhere to transfer them to recover. When a person is dead, life support has to end since regardless of what parents, judges or legislators might want to believe, no physician can do anything to treat death. When doctors say ‘brain dead’ instead of dead they confuse family members, the media, judges and the public. Calling someone brain dead makes it sound like they are almost dead, sort of dead, kind of dead but not really dead—which they are.”

Finally, in what he referred to in an email as a “screed,” Caplan cited the events and coverage involving the battles over Jahi McMath as one more example of growing ignorance about science in the American population.

I don’t really want to unfairly dump on Caplan here. There have been plenty of other bioethicists commenting in the media. And Thaddeus Pope has been covering developments regularly, sometimes with titles that refer to Jahi McMath as a “corpse.”

With all due respect, I’d like to suggest that almost every bioethicist weighing in on this story has added to the ignorance and confusion surrounding brain death.

There’s a lot the public should know in order for us all to have an informed and rational discussion about brain death and how to talk about it. In 2012, I wrote an op-ed with NDY President and CEO Diane Coleman that was published in the Wall Street Journal. We described one major problem with the statutes regulating brain death:

What most people are unaware of is that, under the Uniform Determination of Death Act (UDDA), hospitals get to set their own standards and specific protocols to use in making that determination. A study published in 2008 in the journal Neurology found widespread variation in protocols used in top neurology centers.

Imagine allowing individual housing contractors to decide what parts of the plumbing code they choose to implement. That’s what the UDDA has done with hospitals and determination of brain death—and it leads to the possibility that someone could be determined “brain dead” and eligible for organ procurement in Hospital A, and diagnosed as a severely injured person needing evaluation and treatment in Hospital B.

(FWIW, I know that Caplan has a copy of this op-ed and presumably read it.)

For those interested, the abstract of the study cited can be accessed here. The article paraphrases a key part of the ironically named “Uniform” Determination of Death Act regarding who gets to set the standards for determining brain death: “In accordance with the Uniform Determination of Death Act, guidelines for brain death determination are developed at an institutional level, potentially leading to variability of practice.” To a layman like myself, it would seem that problems in “quality control” would be an inevitable result of this deference to individual institutions.

A lot of the rhetoric being spun conflates science and law. Editorials and bioethicists have both proclaimed that saying Jahi McMath is alive is absurd because legally she became a corpse in the eyes of the law the minute the determination of brain death was made. I guess we’re not supposed to notice that this logic is circular. The law says that when a determination of death is made, the person is deceased in the state’s eyes. But the state lets individual hospitals set their own varying standards in regard to making those determinations, which means that no matter how sloppily, unprofessionally, or minimal the standards used to make the determination – a person becomes a corpse even if another facility would determine that the same person is alive. Who would have thought that individual hospitals held – or deserved – such a high degree of autonomy?

There have also been repeated claims that there is “no recovery from brain death,” which evades the reality of those individuals who have been determined to be brain dead and “miraculously” recovered.

In 2008, there was the “miraculous” story of Zack Dunlap, who showed signs of movement shortly after being declared brain dead and being readied for organ harvesting. His recovery at the time was hailed as a miracle – and the hospital staff that made the declaration didn’t seem to inclined to argue. Here was my take at the time:

Me, I’m a little bothered by that particular leap of faith. Does this use of the word “miracle” simply give us permission to avoid asking bothersome questions about diagnostic procedures at the hospital – or maybe even about the “certainty” attached to the diagnosis of “brain death?”

Because calling it a “miracle” lets medical people off the hook. Calling it a “miracle” prevents us from asking if others who have been declared “brain dead” might have been like Zack Dunlap – only not as lucky as Zack, because they had no one looking to see if maybe they might be alive after all.

There have been others, too. A 2011 article by Carol Bengle Gilbert on Yahoo.com is one of the best mainstream articles I’ve read on the complexities surrounding brain death. She mentions Dunlap’s case – and 3 others from 2011, although not from the U.S. Here is an excerpt from the article citing some research I was unfamiliar with:

Doctors are not consistent in declaring brain deaths. “Determining Brain Death,” published by the American Association of Critical-Care Nurses in 1999, cited a study demonstrating that only 35% of 165 doctors likely to have to assess brain death could accurately describe the legal standard. Only 42% were consistent in applying their concept of death.

I guess that those people who claim no one who was truly brain dead has ever recovered would say that Dunlap and others were misdiagnosed and don’t count. That evades the fact that any determination of brain death – misdiagnosis or not – means that the individual becomes a corpse in the eyes of the law. Zack Dunlap was a corpse until his “diagnosis” was revised. When making sanctimonious statements about what brain death means, we should remember that.

Another feature of the coverage of the Jahi McMath story has gone largely unmentioned. That may be understandable since most of the commentators have been white professional males. The vast majority of the articles, columns, blogs, etc. carry a picture of Ms. McMath – with or without her family – a young Black teenager. You’d think that might give white professionals pause for thought about the history, mistrust, discrimination, etc. between people of color in the U.S. and the field of medicine. It hasn’t.

So I want to share parts of “Jahi’s Family Reflects Deep Mistrust of End-of-Life Decisions” written by Janell Ross and published on The Root:

But where Moreno sees evidence that hospitals are doing a better job communicating with black patients and their families, University of Pennsylvania legal scholar and sociologist Dorothy Roberts does not.

Hospital officials have publicly referred to Jahi as a “dead body,” insisting that treating her would be unethical, Roberts said. Stories about Jahi’s situation have implied that the family’s position is connected to scientific ignorance, irrational combativeness and superstition.

The reality is that African Americans are aware of the often limited value of black life in America, Roberts said. In early America, the value of African-American life was typically defined by what sort of loss their death or injury would cause a slave owner, said Roberts, who studies race and bioethics.

Some of the country’s earliest human experiments were conducted on enslaved black women. Beginning in the 1930s, government-funded researchers withheld treatment from patients suffering from syphilis to study the disease’s effects. And until the 1970s, several states maintained programs that forced poor, disabled and African-American women to undergo sterilizations.

In 2002 the Institute of Medicine found that African-American patients are more likely to receive undesirable medical treatments, such as lower-limb amputations, and less likely to receive lifesaving cardiac bypass treatment, dialysis and other treatments than white patients with the same health challenges, insurance status, income and age.

(This really is an excellent article – and a sadly missing part of the discussion until now. Please go read it.)

Meanwhile, all that the leading bioethicists think is necessary for the public to know is that “brain death is death” and that once you’re brain dead you’re a corpse – because the law says so. Any of the messy debates, embarrassing misdiagnoses, professional conflicts, etc. are unnecessary for us to know, apparently. This seems less to me like education than preaching a gospel to large audience of potential converts whose souls you want to save.

To be fair, the American Academy of Neurology issued new guidelines regarding determination of brain death in 2010. Somehow, the Academy believes this will reduce the alarming variability that was found among institutions in the 2008 study. The rest of us – we’re supposed to take the efficacy of the “fix” on – pardon the expression – “faith.”

Second Thoughts” Abound at Assisted Suicide Hearing – Part 2

December 31, 2013Our News & Commentary BlogDiane Coleman

Part 1 of this blog introduced the Massachusetts Statehouse hearing held on December 17 about legalizing assisted suicide. The Joint Committee on Public Health heard testimony on Bill H 1998, introduced as always by Democrat Representative Louis Kafka of Stoughton.

Geriatric social worker and peer advocate Cassie Cramer drove home the point that it is social oppression that causes people distress, that the answer is social supports, not suicide. Cassie said:

I’d like to imagine that the choice to end one’s life would be made without any influence of guilt over the cost of care, hopelessness due to failure of systems of care, or loss of self-esteem due to living in a society that values youth, productivity and independence. But, this is not the world we live in. My experience as a geriatric social worker parallels physician Ira Byock’s observations, that “much suffering of people with advanced illness is preventable and the indignities are imposed.”

Second Thoughts Connecticut leader Cathy Ludlum defended the rights of disabled people to stay alive:

Once someone has a disability, there will likely be times where problems arise and survival is not assured. Add to that the very strong cultural assumption that death is preferable to life with a disability, and you have a recipe for disaster. Most of us have stories about how doctors treat us differently from our nondisabled counterparts, asking us if aggressive treatment is really what we want or need. For us, physician assisted suicide looks like a new way to die from our practitioners’ unconscious biases.

Stephen Mendelsohn of Second Thoughts Connecticut proclaimed our intimate social connections by quoting John Donne’s famous line that “no man is an island; any man’s death diminishes me.” Riffing on the primitive individualism of the proponents, Stephen said:

“My Life. My Death. My Choice.” What does that message, plastered on billboards and worn on stickers, send to an autistic or LGBT teenager who is being mercilessly bullied? When you give a societal go-ahead for suicide under the Orwellian term “compassionate aid-in-dying,” it becomes contagious, especially in a society obsessed with me, myself, and I.

Stephen recounted the story of a severely disabled man, a very happy man with a rich work and family life, being asked by a 16-year-old girl, “If it’s okay to shorten the life of someone because of their suffering—well, I’m also suffering, and I’d rather die than live.”

Ruthie Poole, President of the Board of MPOWER, a statewide membership organization made up of people with lived experience of mental health diagnoses, spoke to the limitations of personal autonomy in the presence of severe depression. Ruthie said:

Absolute hopelessness and seeing no way out are common feelings for those of us who have experienced severe depression. Personally, as someone who has been suicidal in the past, I can relate to the desire for “a painless and easy way out.” However, depression is treatable and reversible. Suicide is not.

MPOWER joined ASAN in making public statements against legalization.

Allegra Stout, Community Organizer with the Boston Center for Independent Living (BCIL) reiterated its position taken last year against assisted suicide.

Bill Peace, board member of Not Dead Yet, was signed up ahead of time for the first panel, but got inexplicably passed over. Adding to an oppressive string of inaccessible experiences, Bill got overheated by the hot hearing room air. Only after he insisted was he called to testify.

Bill recounted his hellish experience in a hospital of being approached at midnight by a strange doctor. Bill was ill but fully expected to recover from a serious skin ulcer when a man appeared at his hospital bedside inquiring whether Bill understood the gravity of his condition.

He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.

The doctor urged Bill to die. It is hard to describe the feeling of betrayal, when you realize that the professional into whose care you have been placed believes that you would be better off dead and should die.

It took Bill years to write his story, but when the Hastings Center Report published it, his honesty induced an outpouring of similar stories. Once again, we realize how powerful our own stories are, how political the personal actually is.

Barely had Bill Peace finished when news swept through the room that the Statehouse was about to close, as a second batch of snow was falling. So with about 20 assisted suicide supporters waiting to speak, Chair Jeffrey Sanchez gaveled the hearing to a close and ordered everyone out.

Like bookends, disability discrimination framed the meeting. What began with the exclusion of people impacted by the bill under consideration was brought to a close by the prerogatives of those who are able to travel by car. When people have to stay indoors for sake of their physical safety, the exclusion does not seem to bother our elites. But when their cars might be slowed down, everyone go home.

Statehouse reporter Christine Lee for WWLP-22NewsSpringfield did a story on the hearing, and briefly interviewed me. She grabbed one quote:

But bill opponents fear the law could be abused to coerce the disabled and elderly into dying.

“What people should be doing instead of searching for suicide as an answer is making sure that good palliative care and early enough hospice is available to everyone,” John Kelley (sic), director of Second Choices Mass.

There is more testimony! Because of the snow, some people could not make it to testify. Here is the NDY press release that links to a collection of testimony, including Eileen Feldman’s and Dusya Lyubovskaya’s who could not attend in person, along with a letter I sent to a local disability rights group. – John Kelly

“Second Thoughts” Abound at Assisted Suicide Hearing – Part 1

December 30, 2013Our News & Commentary BlogDiane Coleman

[Editor’s Note: If you’d like to make a year-end contribution to support the work of great Not Dead Yet activists like John Kelly who wrote the post below, please donate here.]

A year after helping defeat assisted suicide at the Massachusetts polls, it was a broader and stronger cross-disability coalition that came to testify at the recent Statehouse hearing on assisted suicide bill H 1998. Revealing formal statements of opposition from the national group Autistic Self Advocacy Network and the local MPOWER, advocates with Second Thoughts Massachusetts gave legislators even more reasons for “second thoughts” about legalizing assisted suicide.

Without apology, the Joint Committee On Public Health held its scheduled hearing despite the impassable state of local sidewalks. Many supporters of Second Thoughts Massachusetts were snowbound, denied the right to participate in the democratic process. Those of us lucky enough to get to the Statehouse came from across the region. Cathy Ludlum and Stephen Mendelsohn traveled from Connecticut to represent Second Thoughts Connecticut, and Bill Peace traveled from New York on behalf of Not Dead Yet. Unlike last year’s hearing, no accommodation had been made for the influx of wheelchair users, so we filled the entrance aisle in front of one of the doors.

I was going to save my complaint for the end of my testimony, but after traveling in the street like an automobile and hearing stories of people injured by icy sidewalks, I began my testimony with:

“Being stuck inside for days on end without relief is another way that disabled and older people get the message that we are not as valuable as other people. If we were as valued, the sidewalks would either be clear or the hearing would be postponed.”

When the snow picked back up, threatening automobile traffic, the hearing was cut short by state order.

Suicide proponents, meanwhile, were met by designated greeters and plastered with green stickers proclaiming “My Life/My Choice/My Death.” Belying their natty appearance, proponents were surprisingly rowdy when Second Thoughts was testifying. In appearance and style, H 1998 supporters came directly from the Compassion & Choices catalog: a spry group of the older white upper-middle class that we call the 4-W’s, the “white well-off worried well.” One dual-cane using curmudgeon electrified the crowd by concluding a story with the words “but I would shoot you!” Chair Representative Jeffrey Sanchez immediately called for order. Two state legislators, one each from Massachusetts and Vermont, extolled assisted suicide.

It was great to see Barbara Rockett affirming the opposition of the Massachusetts Medical Society. Elaine O’Reilly continued to represent the long-standing opposition of the Hospice & Palliative Care Federation, which Second Thoughts was proud to work with last year.

I started off our testimony by talking about the history of Second Thoughts, how we helped stop Question 2 by demolishing two main arguments put forward by prominent proponents like Dr. Marcia Angell. Last year, her first argument narrowed the difference between life and death by insisting that people with a terminal diagnosis are (actively) dying, suffering needlessly in the process. The only question left, so she argued, was the exact timing and manner of the death. This argument collapsed under the weight of our own life experience, bolstered by the timely revelation that Edward Kennedy had initially been “given” 2-4 months to live, but lived 15 more productive and meaningful months.

Marcia Angell’s second argument, that assisted suicide is necessary to relieve suffering and protect dignity, evaporated under closer inspection. People learned that the real issue wasn’t physical pain but emotional and social distress.

Palliative care has demonstrated that physical pain is a medical issue that can be addressed, I said, whereas proponents want the state to approve their suicides when they are experiencing disabling conditions many of us know well. They call it “death with dignity.” I pointed out that this particular notion of “dignity” is specific to a narrow social class of almost exclusively white people. According to a poll recently taken by Pew, whites support legalized assisted suicide by 53%-44%, but 65% of both blacks and Latinos oppose it. I concluded:

“We have a public health problem, but it isn’t certain people’s lack of dignity, it’s the turn to suicide as a social solution by a powerful social class. Legalizing assisted suicide would only entrench this suicidal tendency as the preferred social norm.”

Second Thoughts Massachusetts member Kate Ryan represented the local Autistic Self Advocacy Network (ASAN) chapter in opposing H 1998. Kate summed up the essence of ableism when she said:

“When physician-assisted suicide is presented to a person with a disability, they are not just making a simple choice to live or to die. They are also being pressured by society, by their family and friends, and by medical providers, to admit that their life is not worth living.”

Kate Ryan also worked with national ASAN to develop an official statement against assisted suicide and H 1998.

The Autistic Self Advocacy Network, ASAN, is against physician-assisted suicide and specifically, H 1998. We believe that both the practice and the bill discriminates heavily against those with physical and developmental disabilities… If you pass this law, you will be putting the power of who lives and who dies out of the individual’s hands and into that of an unscrupulous society, who do not think that we have lives worth living. We say we do, and we say to please vote against this bill.

At this point, Mike Martinignetti, who uses a wheelchair because of Parkinson’s disease, testified in support of H 1998. He said that John Kelly doesn’t represent disabled people, and that he wanted to be able to die when he felt like a burden. He was a person used to giving, he declared, and did not want to be on the receiving end. Not Dead Yet and our allies have never claimed to represent the views of all disabled people regarding legalization of assisted suicide. However, all of the major national disability organizations that have taken a position on the issue oppose legalization.

Second Thoughts member Denise Karuth told her personal history of total body nerve pain, which she said made:

. . . me feel like my body has been immersed in scalding water from the neck down all the way to my bones, every day, all day long, 24/7. Because the damage also causes my heart rate, blood pressure and body temperature to fluctuate widely, I have no doubt that, if I lived in Oregon, where PAS is legal, I could have found a doctor from Compassion and Choices to say I had six months or less to live and received a lethal prescription.

Instead, Denise tried various experimental pain treatments until she teamed up with a doctor to implant a pain pump using the only medication that could work, concentrated anesthetic. Denise proves once again that hope is an important part of life, and that by continuing to treat her pain, she not only helped herself but other people with a similar situation. Society benefited further when Denise went on to write $160,000 in successful grants for a Stavros program to help disabled people stay in their homes.

If assisted suicide had been available to me, none of these things would have happened. A lethal prescription is not a medical treatment. It is, literally, killing with what people mistakenly think is kindness. All people, even people who are nearing the end of life, deserve suicide counseling and compassionate, life-affirming health care and supports, including adequate pain medication, not a lethal prescription.

Unless an assisted suicide bill were to consider everyone eligible, the bill would inevitably have a discriminatory impact. As Denise notes, either we give everyone suicide prevention counseling or we declare that certain people’s deaths are for the best. We know that everyone’s life has value.

This is the end of Part 1 of this report. Check back tomorrow for the second half, including Second Thoughts Connecticut leaders Stephen Mendelsohn, MPOWER Board President Ruthie Poole, and Bill Peace of Not Dead Yet. – John Kelly

Press Release: Disability Rights Organizations Led By Not Dead Yet Issue Open Letter Criticizing Respecting Choices Program for Bias Against Feeding Tubes and Breathing Devices

December 20, 2013Our News & Commentary BlogDiane Coleman

(Editor’s Note: For a pdf version of the PRWeb release, go here.)

Led by Not Dead Yet, eleven national and twenty-three state and local disability organizations, as well as individuals, have sent an open letter to Respecting Choices, a prominent advance care planning program operated by Gundersen Health Systems in LaCrosse, Wisconsin. The letter criticizes two “Fact Sheets” distributed nationally by the program because they discourage people from choosing to use feeding tubes, “BiPAP” breathing devices and ventilators, despite the fact that the alternative is usually death.

The documents, entitled “Tube Feeding: What You Should Know” and “Help With Breathing: What You Should Know”, have been posted with permission on the website of an Ohio hospice. They are sold on the Respecting Choices website for use in advance care planning.

The Gundersen documents express a strong bias against long-term use of feeding tubes, BiPAPs and ventilators, discouraging health care consumers and medical professionals from using these life-sustaining devices except for short-term recovery and not as part of a viable disability lifestyle. The Not Dead Yet letter was signed by twenty-five individuals who have successfully used one or more of these devices for years, and in some cases for decades.

“By their own explicit terms, these advance care planning documents are not only for people who are close to death no matter what they do, but also for people who could live a long time if they choose to use these health care devices,” said Diane Coleman, president and CEO of Not Dead Yet who has used a BiPAP breathing device at night for twelve years.

Cathy Ludlum of Manchester, Connecticut, who uses both a feeding tube and BiPAP, was involved in drafting the letter. “Feeding tubes and breathing devices are portrayed in these so-called fact sheets as uncomfortable and ineffective, especially for those of us with long-term, progressive conditions,” said Ludlum, a leader of Second Thoughts Connecticut. “But I have lived many healthy and happy years with the help of a feeding tube and a BiPAP.” Both Coleman and Ludlum have neuromuscular disabilities.

“Not every technology works for everyone, and people should certainly make their own choices,” Ludlum added. “But choice is only possible when people receive full, accurate, and unbiased information.”

The disability advocates hope that the letter will serve as a first step in a process to resolve the their concerns. They call on the Respecting Choices program to take four steps to address the disability community concerns:

Stop marketing and distributing “Tube Feeding: What You Should Know” and “Help With Breathing: What You Should Know.”
Send a formal notice to all known purchasers and users of these documents directing that they no longer be used due to their misleading nature and offering to refund any related payments received for their purchase.
Issue a press release and post an announcement on the Respecting Choices website about the “recall” of these products due to their misleading, biased and harmful content.
Convene a Task Force to consider other corrective action steps that must be taken to remedy the harm done by these documents. This Task Force should be composed of a majority of individuals who use these technologies, as well as suppliers and professionals with significant knowledge and experience with their long-term use.

National organizations that signed on to the letter include the American Association of People With Disabilities,  Association of Programs for Rural Independent Living,  Autistic Self Advocacy Network,  Disability Rights Center,  Disability Rights Education and Defense Fund,  Little People of America,  National Council on Independent Living,  Not Dead Yet,  National Disability Rights Network,  The Arc of the United States  and United Spinal.