San Francisco Chronicle Columnist Debra J Saunders Discusses Class, Race and Privilege in Assisted Suicide Debate

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Since Not Dead Yet started, we’ve seen that the proponents of assisted suicide consist of what we call the “4 W’s” – the white, well-off, worried worried well. That hasn’t changed.

Last week, columnist Debra J. Saunders discussed the role that class, income and race play out in the debate in that state over legalization of assisted suicide. Here are a couple of excerpts from her excellent column, “Assisted suicide: help the rich to not get too much care“:

The assisted-suicide movement is the rare self-proclaimed civil rights movement that exists to cater to the wishes of affluent Americans. Tuesday, the state Senate Judiciary Committee held a hearing on SB128, a bill to legalize assisted suicide in California. (Proponents don’t like the word suicide, so they call the measure the “End of Life Option Act.”) Supporters talked of their fear of medical personnel prolonging their lives, of pain and lack of autonomy; opponents fear that the bill’s passage would represent a callous act of cultural abandonment of the sick and disabled.

And then there’s the issue of race:

California has world-class medical care. This bill seeks to address a “First World problem,” noted Tim Rosales from the opposition. Rosales steered me toward Ken Barnes, a San Diego management consultant who used to be on the executive committee of the California conference of the NAACP. Barnes handily summed up SB128 supporters: They tend to be white, educated, affluent and able to navigate the health system. While they think they are “progressive,” they are as oblivious to the downside for “people of color and people who don’t know how to advocate for themselves.” They’re like white guys who don’t understand why black men are leery of police.

I want to reinforce this point. A Pew Poll published in November, 2013 reported that only 29% of Blacks polled and 32% of Hispanics polled supported legislation that would legalize assisted suicide.

The issues of race, class and privilege don’t get aired nearly often enough in this debate.

Please go to the original column and read it in its entirety – it’s truly excellent and deserves all attention it can get.

Maryland: Assisted Suicide Bills Killed Quietly in Committees – Updates on California and Rhode Island

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Good news – for now – in Maryland.  According to the Baltimore Sun:

Hope ended Wednesday for those who wanted Maryland to pass a “death with dignity” law this year.

Leaders of two key committees considering a bill that would have allowed doctors to prescribe medicine to help terminally ill patients end their lives decided not to vote on the proposal, effectively killing it.

But it’s highly likely the bill will be resurrected/reincarnated:

The move ends an emotional debate in the General Assembly — for now. House and Senate leaders plan to convene a work group that will present another proposal in January. That spares the legislature a complex floor debate in the waning days of the session this year.

NDY Board member Sam Crane is quoted in the article:

“We are absolutely delighted that the committees realized that this bill would not work for Marylanders,” said Sam Crane, director of public policy for the Autistic Self Advocacy Network and a member of the MD Coalition Against Physician Assisted Suicide.

Crane’s group, religious organizations, mental health groups and disability advocates had argued that the bill would sanction death for people who relied on others to care for them and could put some the state’s most vulnerable populations at risk.

Sam was one of many disability advocates/activists who testified against the bill, including Crosby King for Not Dead Yet and and Richard Davis, on behalf of the Arc of Maryland.

Next week, there will be hearings in California and Rhode Island on similar bills.  So far, we know that Emily Titon plans to testify in the Rhode Island hearing and Marilyn Golden plans to testify in California. Marilyn Golden testified before the Senate Health Committee in March – her testimony can be read here.

John Kelly and Alex Schadenberg on Radio Sputnik Radio’s “Brave New World”

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At the end of February, both John Kelly, the New England Regional Director of Not Yet Dead and Alex Schadenberg, Executive Director of the Euthanasia Prevention Coalition, were guests on “Brave New World,” a show on Radio Sputnik. Also on the show was Gert Huysmans, the President of the Federation of Palliative care of Flanders (Belgium). John Harrison is the host of the show.

According to John Kelly, this show was better venue than he is used to – venues in which news hosts are often openly hostile to any opponent of legalized assisted suicide and euthanasia. John said (and the show recording and transcript confirm this) “he (Harrison) gave each of the participants a chance to describe the situation in our own country, thereby giving us a chance to make our points without being asked the “what do you say to Brittany Maynard” type of gotcha question. When he asked me the devils advocate question it was about a person with a disability, not someone “about to die in pain” or some such nonsense.”

Here are a couple of excerpts:

Gert Huysmans: What you mentioned in Flanders and in Belgium, euthanasia is not a right. You have the right to request for euthanasia, and that’s a world of difference. So it’s not that you have the right to choose your moment of dying with euthanasia. You have to follow certain conditions that are mentioned in the law. You have to have unbearable suffering caused by a disease or an accident, and the physician you request your euthanasia [from] should have the internal persuasion that euthanasia is the only proper solution for your problems and in some cases and in some circumstances euthanasia is acceptable, but it is not a right as such.

And, as news of the law’s actual application has shown, practice is only as narrow as the broadest comfort zone of any given individual physician.

John talks about the long-term resistance to “right to die” laws from the disability community:

JK: We in the United States, the disability rights movement have fought [for] a generation against the arrogance being displayed by the doctor, where the doctors can presume to judge the quality of life, and when it is correct to end it. We have a history of being judged to not have high quality of lives, and whenever suffering is the subjective criterion for deciding who gets to die, people with disabilities will always be the ones who are targeted.

This show is an excellent one.  I encourage readers to listen to the show here or to read the transcript here.

Not Dead Yet, ASAN and NCIL Weigh In on IOM Report on Dying in America

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The Institute of Medicine recently solicited organizational statements of commitment in connection with its report on Dying in America.  The IOM is holding a meeting on Friday, March 20 that’s open to the public and accessible online.

Not Dead Yet committed to work on advance care planning and professional education.  To be honest, we aren’t necessarily doing what the IOM has in mind.  We are very concerned that health care providers don’t always discern the difference between providing “end-of-life” care and ending lives prematurely due to negative quality of life judgments about disability.  We are also concerned that advance care planning programs have incorporated negative societal stereotypes about living with disability into materials that encourage people to forego life saving treatment rather than survive with a disability.  There’s a right to refuse treatment, but it’s supposed to be based on informed consent.

Established programs for advance care planning (ACP) were developed without input from people with disabilities who have first hand knowledge of how to live happily and productively with significant disabilities or chronic illnesses.  As renowned palliative care physician Ira Byock said regarding the exclusion of the disability perspective from the “end of life” initiatives of the 1990’s, “It was a deliberate decision — and it was irresponsible.”  (A deliberate decision?  Does end-of-life group shut out disability perspective?  Ragged Edge Online, July 21, 2003.)

The result of that exclusion is that ACP was infused with common societal prejudices about disability, with materials often suggesting that disability is a fate worse than death and encouraging people to give up their lives by refusing life sustaining care rather than adapt to disability.  Whatever the good intentions of those involved, ACP materials are permeated with the “better dead than disabled” message.

To read the full NDY Statement, go here.

The Autistic Self Advocacy Network (ASAN) submitted comments which highlighted concerns about disability bias in connection with health care decisions by surrogates.

Many people with disabilities live long lives, punctuated by acute health crises that may be life- threatening. Often, whether or not a health crisis is seen as “the end of life” depends on whether a person – or the person’s surrogate decision-makers – decide to pursue life-extending treatment.

Recently, the Autistic Self Advocacy Network submitted an amicus brief in Disability Rights Wisconsin v. University of Wisconsin Hospital Centers, et al. One of the incidents giving rise to that lawsuit was the death of a thirteen-year-old boy with developmental disabilities, which serves as a stark example of how decisions about survivable illnesses can become “end-of-life” decisions as a result of doctors’ and substitute decision-makers’ negative attitudes about disability.

For the full ASAN Statement, go here.

The National Council on Independent Living expressed concerns about the risks that financial cost cutting pressures in the health care system pose risks to people with disabilities.

It is important to note that disability is a large component of many end-of-life discussions. Whether individuals are having end-of-life conversations due to aging, chronic conditions, or terminal illness, disability often accompanies these processes, resulting in functional losses that become pivotal in the decision-making process.

. . . Of particular concern is the recommendation that “frequent clinician-patient conversations about end-of-life care values, goals, and preferences are necessary to avoid unwanted treatment”, and equally concerning is the recommendation that these conversations be incentivized. A significant fear on behalf of the disability community is that incentivizing these conversations could in turn incentivize doctors to base conversations and recommendations on cost-cutting measures.

For the full NCIL Statement, go here.

The webinar is of the March 20 IOM meeting is free and does not require prior registration.

Not Dead Yet Applauds Second Thoughts Connecticut As Disability Advocates Prepare to Testify Against Assisted Suicide Bill

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[Editor’s Note:  A PRWeb version of the press release below is online in pdf format here.]

Not Dead Yet applauds Second Thoughts Connecticut, as disability advocates held a press conference Monday and now prepare to testify against an assisted suicide bill (HB 7015) at a Connecticut House Judiciary Committee hearing being held on Wednesday, March 18, 2015. Not Dead Yet’s New England regional director John Kelly is also submitting written testimony opposed to the bill.

Both proponents and opponents of the Connecticut assisted suicide bill held press conferences on Monday at the state capitol. One speaker who opposes the legislation was Maggie Karner, a woman with brain cancer, who was quoted saying “if we endorse patient suicide as our statewide policy for dealing with pain and the financial burdens at the end of life — we’re going to end up embracing a whole new ethic that confuses compassionate medical care with a prescription for death.” (Both Sides Get Ready To Debate End of Life Issues, CT News Junkie, March 16, 2015.)

One of the leaders of Second Thoughts CT, Cathy Ludlum, was interviewed extensively about her concerns as a person with significant physical disabilities regarding the potential for “unintended consequences” and the difficulty of providing adequate safeguards. She noted that terminal prognoses can be incorrect. Regarding safeguards, “Ludlum pointed to studies that indicate as many as one in 10 seniors are victims of elder abuse. ‘If you’re introducing a deadly prescription into that family situation, where no one is going to be there to see what happens, you don’t know what happened,’ she said.” Ludlum also noted that cost cutting pressures in health care and social services could “push some people toward ending their lives.” (On polarizing end-of-life issue, what changes minds? CT Mirror, March 16, 2015)

Second Thoughts CT disability advocates have been also preparing for a hearing on the bill before the House Judiciary Committee. The testimony of Stephen Mendelsohn, another Second Thoughts CT leader, raises serious concerns about suicide contagion in Oregon, where assisted suicide is legal. “According to the Centers for Disease Control, Oregon’s already high suicide rate has increased much more than the national average; from 1999 (shortly after the Oregon Death with Dignity Act took effect) until 2010, the rate of increase for people age 35-64 was 49% in Oregon versus 28% nationally. . . . Mercilessly bullied autistic and LGBT youth can pick up this message that ‘my death’ is ‘my choice’ . . . and act on it. Those of us on the autism spectrum can take messages like this quite literally.”

Mendelsohn’s testimony also points to the dangers of future expansion of eligibility for assisted suicide beyond the parameters in the current bill, based on public comments by assisted suicide proponents:

“When Compassion & Choices president Barbara Coombs Lee came to Hartford last October, she declared her support for assisted suicide for people with dementia and cognitive disabilities unable to consent. CT News Junkie quoted her saying, ‘It is an issue for another day but is no less compelling.’ (Compassion & Choices Draws Full House at Real Art Ways for Panel Discussion, Film, Oct. 10, 2014) Dr. Marcia Angell, leading proponent of the defeated Massachusetts’ assisted suicide ballot question, recently wrote in The New York Review of Books that she now favors euthanasia as well as assisted suicide. (“A Better Way Out,” Jan. 8, 2015.) Oregon is currently debating legislation (HB 3337) that would extend eligibility for assisted suicide from a six month prognosis to one year.”

The Disability Rights Education & Defense Fund’s senior policy analyst Marilyn Golden submitted a compilation of “Some Oregon and Washington State Abuses and Complications.” Hearing testimonies on HB 7015 submitted in advance are available online on the Judiciary Committee’s website.