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.

Maryland Disability Rights Advocates Make Strong Showing In Hearing on Assisted Suicide Bill

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On Tuesday, March 10, the Maryland Senate Judicial Proceedings Committee conducted a hearing on Senate Bill 676, which would legalize assisted suicide in the state of Maryland if passed.

Crosby King testified on behalf on Not Dead Yet.  Below is an excerpt of his written testimony. The full text is available here.

We already see innocent people feeling pressured and pushed towards assisted suicide for the sake of their family.  Last year in Oregon, 40% of assisted suicide users were reported as feeling like a burden on family and caregivers.

As proponents themselves admit, and as Oregon’s physician reporting form demonstrates, it is social factors that make up the suffering this bill talks about.  Doctors report people choosing suicide because of loss of dignity, loss of autonomy, feeling like a burden, and loss of control of bodily functions.

These reasons suggest a meaning of dignity that is fragile and easily lost through disability and dependence on others.  The people acting on these views, proponents admit, tend to be wealthier, better educated, and people with a strong preference for control.  This is presented as a good thing.

Assisted suicide proponents are also overwhelmingly white.  97.1% of program suicides in Oregon have been white, in a state 22% nonwhite.  The Pew Research Center found in 2013 that, while whites support assisted suicide 53%-44%, black and Latino voters register 65% opposition.  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.  High rates of white suicide are already a social problem.

Samantha Crane, who is on the NDY Board of Directors, testified before the Committee on behalf of the Autistic Self-Advocacy Network in her role as the Director of Public Policy of that organization. Below is an excerpt from her written testimony. The full text can be found here.

ASAN believes that physician-assisted suicide legislation like HB 1021 discriminates against people who are aging, ill, or disabled. During the course of its advocacy for people with disabilities, we repeatedly encounter attitudes that life with a disability – including not only developmental disability but also disability caused by age or illness – is “undignified” and that people with disabilities cannot live happy lives at home among their loved ones.

The belief that it is better to die than to depend on others for assistance is central to arguments in favor of so-called “death with dignity.” Much of the testimony you hear today will focus on the “indignity” of needing help to eat, move, or take medications. In Oregon, which passed nearly identical legislation, 93% of those who died from physician-assisted suicide in 2013 cited “loss of autonomy,” or disability, as a motivation. Less than 28% cited concerns about pain control.

Also testifying was Richard Davis, Director of Public Policy for The Arc Maryland. Below is an excerpt from his testimony, with the full text available here.

The Arc Maryland’s concerns include lack of protections, historic discrimination in the medical field based on perceived ‘quality of life’ of persons with disabilities, and lack of treatment and other options for individuals with I/DD (such as palliative care, suicide prevention, mental health services, support services, etc.). Our constituency is unduly vulnerable to coercion by trusted individuals and professionals.

The bill provides no guarantees that persons who are terminally ill (including those with and without I/DD) will have rights to access all available options, and there is no guarantee that once a person is given their diagnosis, that they will also have the right to access mental health care in order to process the grieving cycle that may take place before making a potentially life-ending decision.

 

 

“New Scientist” Reporter Goes Over Oregon Assisted Suicide Data With NDY’s Diane Coleman

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A newly-published article in New Scientist includes a section in which reporter Clare Wilson reports on actual Oregon data on assisted suicide after a go-through with NDY CEO and founder Diane Coleman. It’s rare – almost unheard of – for a reporter to go into this kind of detail on assisted suicide in Oregon. The same is true of bioethicists weighing in on the topic. Here’s the section of the article dealing with data in “2015 a watershed year for assisted suicide in the US“:

Diane Coleman, head of advocacy group Not Dead Yet, which opposes assisted suicide, says the Oregon Health Authority’s annual reports on the practice show the law there isn’t working as intended. She points to the motives people gave for choosing this option. According to the latest figures, released on 12 February, only a third of people who took a prescribed lethal dose of medication in 2014 cited pain or fear of pain as one of the reasons for doing so.

Supporters of assisted suicide often cite pain as a primary reason why people should have the legal right to die. But the state’s report showed that people’s concerns tended toward loss of autonomy (91 per cent), loss of dignity (71 per cent) or being a burden on their family (40 per cent). Coleman is particularly concerned that people are choosing assisted suicide because they feel they are a burden. “To me that feels more like a duty to die than a choice to die,” she says.

What’s more, according to the data available for Oregon, some people waited longer than six months between asking for the overdose and taking it. It isn’t stated how many times this happened, but at least some people lived a few years after obtaining the drugs. Coleman is concerned that this means people are being accepted for assisted suicide who don’t meet the criteria of havingless than six months to live. “Those people were not actually terminally ill,” she says.

What do the supporters have to say? Not much of substance, really. But please go read the entire article at the source. This is a good article – especially as it pertains to Not Dead Yet. It should be rewarded with a bump in people accessing the article. Please click here to read the entire article.

Belated Update on Wisconsin Case: ASAN Files Second Amicus Brief for NDY and 13 Other Disability Groups

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[This announcement is from the Autistic Self Advocacy Network (ASAN) and originally appeared on Feb. 2, 2015.]

On Monday January 26, the Autistic Self Advocacy Network, Not Dead Yet, and 13 other disability rights organizations filed a second amicus brief in a case defending the rights of people with disabilities to basic medical care.

Disability Rights Wisconsin filed the initial lawsuit, Disability Rights Wisconsin v. University of Wisconsin Hospital Centers et al., in 2009 after one thirteen-year-old died and one adult – both of whom had illnesses that were easily treatable – were denied care for treatable illnesses like pneumonia. University of Wisconsin Hospital physicians had advised families to withdraw antibiotics, nutrition, and hydration, citing their patients’ supposedly low quality of life as individuals with disabilities. When the teenager’s regular caregivers objected to withdrawing treatment, UWHC physicians allegedly encouraged the family to have him transferred to the University of Wisconsin Hospital, where he was taken off of antibiotics, nutrition, and hydration, and transferred to hospice care. He died the next day. In both cases, doctors had made assumptions about their patients’ “quality of life” without speaking to them or to the people they spent the most time with. They also had failed to seek approval from a court or hospital ethics committee.

“If these people hadn’t had developmental disabilities, there is no question that they would have been given this basic medical care,” said ASAN’s Director of Public Policy, Samantha Crane, who authored the brief. “Instead, these doctors used acute illnesses as an opportunity to take away the medications, food, and water that their patients needed to live. This essentially amounts to opportunistic euthanasia of people with disabilities.”

ASAN’s amicus brief was authored in collaboration with Not Dead Yet, a disability rights organization that advocates against legalization of assisted suicide, euthanasia, and non-voluntary denial of lifesaving treatment for people with disabilities. The brief argues that UWHC’s policies are emblematic of pervasive, nationwide medical discrimination against people with disabilities and that legal protections are necessary to protect vulnerable individuals from deadly denials of care.

“The concern that many of us with lifelong severe disabilities have is that children with disabilities are not receiving the same legal protection as nondisabled children,” said Diane Coleman, Not Dead Yet’s President and CEO. “A disabled child with parents who prefer to withhold medical care that would save the child, or who succumb to pressure from hospital doctors to withhold care, should not be permitted to deprive their child of a future just because the parents and doctor harbor common prejudices against life with disability.”

The Wisconsin Court of Appeals had rejected Disability Rights Wisconsin’s claim that UWHC doctors had violated patients’ rights under the constitutions of either Wisconsin or the United States, leading to this appeal to the Wisconsin Supreme Court. ASAN had filed an amicus brief with the Appeals Court in May. Under Wisconsin law, the Court can decide whether or not to accept the appeal for review.

Under Wisconsin law, parents of nondisabled children are required to provide medical care when necessary to save the child’s life. In 2013, the Wisconsin Supreme Court upheld the homicide convictions of parents who had failed to seek medical attention for their child, who died of untreated diabetes.

UWHC Ethics Committee Chair Norman Fost, who is also a defendant in the lawsuit, has taken multiple controversial positions on the rights of children with disabilities, including his defense of the use of electric shocks to modify the behavior of children and adults with disabilities and his support of the “Ashley Treatment,” which involves removing the reproductive organs and artificially stunting the growth of children with developmental disabilities.

ADAPT, American Association of People with Disabilities, American Council of the Blind, Association of Programs for Rural Independent Living, Autism Women’s Network, Bazelon Center for Mental Health Law, National Association of the Deaf, National Council on Independent Living, National Disability Rights Network, Quality Trust for Individuals With Disabilities, United Spinal Association, and the Wisconsin Board for People With Developmental Disabilities also joined the amicus brief.

Click here to download a copy of the brief, or click here for an accessible version in Word format.