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

[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

(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.

[Ed. Note:  For a PDF formatted version of this Press Release, and links to eight testimonies submitted by NDY Board member William Peace as well as members of Second Thoughts Massachusetts and Second Thoughts Connecticut, go here.]

Disability rights activists from across the region will be speaking Tuesday before the Massachusetts legislature’s Joint Committee on Public Health in opposition to H 1998, which would legalize assisted suicide in the state.  The group called Second Thoughts was instrumental last year in the defeat of the assisted suicide referendum, Question 2.  The hearing begins at 10:00 AM in Room A-1 at the State House.

Second Thoughts director John Kelly said, “This dangerous bill enables a doctor to misdiagnose you as terminal, decide that your depression doesn’t impair your judgment, and give you a prescription on the same day.”

Ruthie Poole, Board President of member organization  MPOWER, said “As someone who has suffered from major depression in the past, I can relate to the desire for ‘an easy way out.’ Depression is treatable and reversible. Suicide is not. I look forward to testifying against H 1998.”

William Peace, the Jeanette K Watson Distinguished Visiting Professor at Syracuse University, is driving from New York to talk about the time the doctor in a hospital tried to convince him to choose death over treating a dangerous infection.  “I was not in any way terminally ill. Yet a physician I had never met deemed my life not worth living. Disability in this physician’s opinion was a fate worse than death.”

Second Thoughts member Karen Schneiderman said that “Abuse of older and disabled people is already a problem.  With no safeguards and no waiting period, people’s lives will be endangered.”

Cassie Cramer, a geriatric social worker with experience working in Protective Services, plans to submit written testimony stating “that elder abuse, caregiver neglect or financial exploitation is widespread and that the wrong-doing is typically not glaring or easily identifiable by providers.”

Kelly, who is also the New England regional director for Not Dead Yet, a national disability group, emphasized that, under current law, people have the right to refuse or stop medical treatment, including food and water.  People also have the right to adequate pain relief, even to the point of sedation if necessary.  “What’s clear from Oregon is that pain is not the issue – prescribing doctors report patient concerns are psychological and social factors like physical dependence on others, feeling like a burden,” Kelly said.  “Those are disability issues and we have a problem with using these concerns to justify state supported suicide.”