[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
I feel both anger and sadness that it is so difficult to explain to the legislatures and the policy makers that the state’s affirmation of assisted suicide as moral public policy because of the legalization of physician assisted suicide under state law is a huge step backward by the United States in the affirmation of human rights and in the protection of individual rights in free democratic capitalistic republics.
While the federal laws still on the books suggest that public policy will not encourage assisted suicide, euthanasia, mercy killing, our cowardly Congress refuses to clarify the 1991 Patient Self Determination Act and the Americans with Disabilities Act, and the elderly/disabled become the targets of Big Insurance and Medicare to reduce the expensive end-of-life costs for our growing population of elders.
How can we, as a nation, justify the sacrifice of our own young troops and the increase in our own disabled population to protect the human rights of citizens in other countries, while, at the same time, we turn our backs on the increase in disability and suicide in the ranks of the armed services and in our general population? Isn’t it insane to suggest that physician assisted suicide is a solution to these problems?.
If the only value that is ultimately protected by the State is the value of dollars and profits for the health care industry as it exists today, we can see that “assisted suicide laws” will sweep the country as a fast and easy solution that serves fiscal expediency and profits. The elderly and the disabled will be targeted and made to feel that it is their obligation and duty to shorten their lives and die as quickly as possible to serve the so called public good.
We can see how the loud noise of “the right to die” a “dignified death” with physician assisted suicide has enabled and encouraged both physicians and hospitals to believe that they are safe and protected from the force of the law when they remove the autonomy of the elderly/disabled and covertly and overtly unilaterally shorten life, and hasten death for fiscal expediency ——to protect profits —–but under the guise, of course, that “the patient is better off dead” even as the life-extending procedure withheld is not determined to be “medically futile” under any existing due process procedure developed by the hospital and approved under state law. .
.
The elderly and the disabled have been under attack for many years now because they appear to be the easy target for budget constraints in the Medicare and Medicaid programs. Unfortunately, their individual rights and autonomy, both, as to the “educated” choice to LIVE and the “educated” CHOICE to die, as is NOW supposed to be protected under federal laws such as the Patient Self Determination Act and the Americans with Disabilities Act of the early 90’s are being circumvented for fiscal expediency and to protect private profits. .
. .
I have never understood WHY Compassion and Choices don’t use any of their influence or funds to expose or WARN the legislatures and/or the public about the long-standing misuse of unilateral DNR Code status by hospitals/physicians to shorten the lives of the elderly/disabled who have been over treated for profit, or who are the victims of mistakes, omissions, and errors that are NOT reimbursed by Medicare and/or its private partners, Big Insurance.
WHY has Compassion and Choices made no effort to influence the state legislatures to clarify the rights implied in the 1991 Patient Self Determination Act that is already federal law. The PSDA already makes legal a form of suicide for “terminal patients” that doesn’t involve a lethal prescription for instant death that is sanctioned by the State. In reality, Compassion and Choices undermine “the right to live” in their zeal to involve physicians is fast and easy and legal suicide that is sanctioned by the state. .
We see NOW in the beginning of 2014 how far we have strayed far from the public policy goals of the Congress in 1990 and 1991 when The Patient Self Determination Act (PSDA) and the Americans with Disabilities Act (ADA) were passed into law . In 1997, Congress confirmed that public funds will not be used for the purpose of assisted suicide, euthanasia, mercy killing.
NOW, the elderly and the disabled will be in even greater danger as Big Insurance and Big Hospitals engage in a power struggle to control the Medicare Public Purse. It appears that Hospice may not remain an optional entitlement after the trials planned by HHS are completed in 2015 and Congress changes the Medicare law again to protect the private for-profit interests who control the Medicare Purse.