Archived Audio and Transcript for Diane Rehm Show with Stephen Drake, Frank Bruni, Joanne Lynn and Mickey MacIntyrye on Assisted Suicide Online NOW!

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Yesterday’s (August 13) Diane Rehm Show has both audio and a transcript available online now.

If you missed the discussion, please check  it out.  Among topics discussed: conflation of high morphine doses in hospice with the barbiturates used in assisted suicide; the ways in which the term “end of life” has expanded beyond usefulness – serving to obfuscate rather than clarify conversation; and if we’re really kinder to animals than to humans when it comes to killing them.

The audio is available at this link. (player should pop up)

The transcript is available here.

And please feel free to leave a supportive comment on the main page.  Accessing the page and leaving comments in support of the NDY viewpoint will encourage the show to get disability representatives on this and other topics in the future.  Link to the main page.

Diane Coleman Op-ed In NJ Trenton Times: N.J. assisted suicide proposal is dangerous prescription

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On August 10th, the New Jersey Trenton Times published an op-ed by Not Dead Yet President and CEO Diane Coleman.  Below is an excerpt from her op-ed, titled “N.J. assisted suicide proposal is dangerous prescription“:

As one of countless disabled people who have survived a terminal prediction based on a faulty diagnosis, I can’t help but become concerned when the accuracy of a terminal prognosis determines whether someone gets suicide assistance rather than suicide prevention.

The annual Oregon reports, stipulated under that state’s assisted suicide law, themselves show that non-terminal people are getting lethal prescriptions — up to 1,009 days have passed between the request for assisted suicide and death. One of the many things the reports hide is specifically how many lived longer than six months, but we do know that those people were disabled and not terminal when they sought their lethal prescription. We also know that there’s no consequence to the assisting doctors for this or any other mistake in the assisted suicide process.

Proponents also claim that 15 years of data from Oregon show that safeguards to ensure that assisted suicide is voluntary are working.

How would they know? The Oregon reports tell us only what the prescribing doctors indicated were the patients’ reasons for wanting assisted suicide when they checked off one or more of seven reasons on a multiple-choice state government form.

One of the seven reasons, feelings of being a burden on others, was checked in 57 percent of Oregon’s reported assisted suicide cases last year (39 percent over all the reported years).

But there’s no requirement that home care options that could relieve the burden on family caregivers must be disclosed as part of informed consent under the law, much less that these options must be offered or funded.

Although the Oregon reports admit that the state can’t assess compliance with the safeguards, some independent articles find that safeguards failed in individual cases (see, e.g., Hendin and Foley’s “Physician-Assisted Suicide in Oregon: A Medical Perspective,” Michigan Law Review, June 2008).

But the law includes no authority for investigating or enforcing the safeguard provisions, so nothing happens as a result.

Please read the rest of the op-ed at the Trenton Times.

NDY Research Analyst Stephen Drake in NY Times Frank Bruni Column on Aug. 10 and on Diane Rehm Show Aug. 13

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In case anyone missed it, Frank Bruni’s column in the NY Times on Saturday, August 10 featured comments from yours truly.  The subject was the possible prosecution of 57-year-old Barbara Mancini regarding her alleged assistance in her 93-year-old father’s suicide – although suicide attempt might be more accurate.

Here’s an excerpt from one of the most detailed accounts of the incident, from NPR:

Joseph Yourshaw was a hospice patient suffering from diabetes and frailty. According to an autopsy report filed by Dr. Rameen Starling-Roney, he stopped taking all medications in December 2011. “He drank regular soda, [and ate] two boxes of candy per week and multiple pastries,” the report notes — a diet that would be expected to worsen uncontrolled diabetes.

In January 2013, the autopsy report notes, an entry in Yourshaw’s hospice chart says he told his family “that he wants to die.” His wife, Marguerite, reportedly said, “Your daughter [apparently referring to Barbara Mancini] told you how to do that. Just stop drinking.”

Yourshaw became increasingly weak and short of breath. Hospice records show that Mancini called to request low-dose morphine for Yourshaw’s pain. On Feb. 6, he had a fall. The next day hospice nurse Barbara Cattermole paid a call to check on him at home and found Yourshaw unresponsive in bed.

Cattermole told authorities that Mancini said she had given an entire vial of morphine to her father to end his life, while Mancini says she was merely trying to relieve his pain.

The hospice nurse called 911 and reported an attempted suicide. Pottsville Police Capt. James K. Reiley, who responded to the call, wrote in a criminal complaint that Cattermole “told me that her client had taken an overdose of his morphine with the intent to commit suicide. Cattermole further stated that her client’s daughter was present and told her she gave him the morphine at his request so that he could end his own suffering.”

The only uncontested action on Barbara Mancini’s part is that she gave her father a vial of his own prescription medicine.  She didn’t mix or prepare anything – or measure out any kind of dose.  That has come to be seen as a low level of “assistance” and has failed to trigger any sort of criminal conviction in several cases (the definition of “assistance” is being fought out in several legal arenas right now).  There’s more:

“It’s nonsense to assert that one can die from morphine toxicity from a dose taken four days earlier,” Fanelli tells Shots. “It’s unsupported medically, scientifically, and it just doesn’t make sense. The fact is, after he was given narcotic reversal agents in the hospital, Joe woke up and was raising hell with everyone, [saying], ‘Why did you revive me and why is everyone picking on Barbara?’ “

If this is true, it’s hard to see how one could prove to any jury that any medication dose involving Barbara Mancini could have actually caused her father’s death four days later.

This provides some context for my comments in Frank Bruni’s column Fatal Mercies:

And the lightness of this alleged assist, coupled with the ambiguity of its connection to his death after he’d rebounded from the overdose, has not only provoked outrage from Compassion and Choices, an organization that supports more options in end-of-life care.

It has also prompted befuddlement on the other side of the issue, with a leading opponent of assisted suicide scratching his head about the way the case is being handled. “It is odd to see one like this prosecuted,” Stephen Drake, the research analyst for the advocacy group Not Dead Yet, told me.

He added that the case worries him, because if it gets significant publicity and informs what many people believe assisted suicide is, they’ll see it as a more benign act than he believes they should. “It’s going to make it even harder to prosecute ones that really call out to be prosecuted,” he said.

Bottom line: It doesn’t help our side to see an ambiguous case that will elicit maximum public sympathy get prosecuted to the full extent of the law.  And, in fact, before the advent of assisted suicide advocacy and even now, prosecutions of incidents like this were – and are – relatively rare.  Prosecutorial discretion has always functioned to handle these cases flexibly – in many cases too flexibly, we’d argue; but that’s a discussion for another day.  Heightened publicity for this case, along with the suggestion that Barbara Mancini could be prosecuted to the fullest extent of the law, plays right into the hands of Compassion and Choices.  Get people pissed enough, make it politically disastrous enough, and no prosecutor will want to touch a case like this again in the state – even when factors such as coercion and/or financial motives are in evidence.

Anyway, what my brief appearance in the NY Times on Sunday has done is to draw the attention of the Diane Rehm Show.  I’ll be on the show, representing Not Dead Yet, sometime between 10 am and 11:00 am ET on Aug. 13 on your local NPR station.  You can read more about the show here.

Diane Coleman Presents Comments on Futility at July 25 Mtg of National Council on Disability

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Many apologies for the delays in getting this out.  Last week, there were many activities and events to mark the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA).  One of those events was a meeting of the National Council on Disability.  Here’s the description and info from last week’s press release announcing the NDLA Statement and Diane Coleman’s Comments to NCD:

Among the disability community activities taking place this week Washington, D.C., the National Council on Disability, and independent federally appointed body that advises the President, Congress and federal agencies on disability policies, held its quarterly meeting. During the meeting, Diane Coleman, Not Dead Yet’s President and CEO, provided both spoken and written public comments urging the Council to address the problem of negative quality-of-life judgments made by physicians to justify denial of life-sustaining care to some individuals who both require it and want it.

Coleman focused on a legislative remedy that developed in Oklahoma to prohibit such quality of life judgments, the Nondiscrimination in Treatment Act passed in May of this year, which states: “A health care provider shall not deny to a patient a life-preserving health care service the provider provides to other patients, and the provision of which is directed by the patient or [surrogate] . . . on the basis of a view that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than extending the life of an individual who is younger, nondisabled, or not terminally ill.”

Coleman told the Council, “I like the sound of that,” but noted that the provision has already received “some pretty intense criticism.”

One critic is Professor Thaddeus Pope, who wrote about the Oklahoma law in a piece entitled “Defending Disability Discrimination.” Pope gave an example of an institutionalized person with mental illness who allegedly would not be able to handle his medications and other transplant care requirements to be eligible for a transplant. Coleman and other disability advocates challenge these sorts of claims, which assume that the necessary support services do not exist. Pope argued that the courts have a long history of permitting disability discrimination regarding life-sustaining treatment.

“I suspect that Pope is right about what the courts have been doing, and it constitutes a life-threatening problem for people with disabilities,” Coleman told the Council, urging them to take a leadership role in addressing this concern.

Below is the embedded video of Diane Coleman’s comments to NCD.  The full transcript of her spoken comments is here.  A longer written submission is available here.

 

Statement of the National Disability Leadership Alliance on the 23rd Anniversary of the Signing of the Americans with Disabilities Act

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For those who are unfamiliar with the National Disability Leadership Alliance (NDLA), here’s the description from the website:

National Disability Leadership Alliance (NDLA) is a national cross-disability coalition that represents the authentic voice of people with disabilities.

NDLA is led by 14 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.  The NDLA steering committee includes: ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Association of Programs for Rural Independent Living, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition for Mental Health Recovery, the National Council on Independent Living, the National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and the United Spinal Association.

Originally created as the Justice For All Action Network, over the 2011 Martin Luther King Jr. holiday weekend, members of the steering committee held a retreat to determine the future of the network.  The group formalized the network, adopted the new name and tagline, and adopted operational guidelines.

As indicated in the description above, NDY is one of the national organizations that leads the alliance.

We’re proud of our part in the Alliance and in the Statement on the 23rd Anniversary of the Signing of the Americans with Disabilities Act:

This week, people with disabilities across the country are celebrating the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA).  This was the first comprehensive federal civil rights statute protecting the rights of people with disabilities.  The ADA established that people with disabilities have equal opportunity in employment, state and local government, places of public accommodation, and telecommunications.

Despite the ADA’s promise of equal opportunity for people with disabilities, it is clear that more work must be done so that people with disabilities are to be valued as equal citizens and welcomed in all aspects of American life.  Today, far too many people with disabilities are forced to live in institutions, forced to receive unwanted treatment, denied programs and services, or to be paid less than minimum wage.  On a regular basis, our civil, constitutional, and parental rights are disregarded or stripped away.

Our lives and expertise are not valued equally – with dire consequences.  Healthcare professionals refuse to communicate with us, overrule the decisions we make or those made by our authorized surrogates; law enforcement and the courts too often fail to treat those who kill people with disabilities the same as those who kill nondisabled people, particularly when an individual has been killed by a family member.

Our very freedom of movement can be deprived and our rights stripped from us on the basis of arbitrary and capricious decisions about our capacity.  Furthermore, the voices of people with disabilities are frequently ignored in favor of parent and provider organizations that speak about us, without us.  Policymakers have ignored our expertise about our own lives, issues and desires, instead of allowing providers, academics and family members to speak for us even though we may have very different priorities and interests.  For those in the disability community from diverse communities, the discrimination that they face as people with disabilities is compounded by issues of race, gender, religious affiliation and sexual orientation.

The statement includes a Call To Action, asserting how we in the disability community must work together to assert our rights.  Below are the action items that will be of the most interest to people passionate about NDY’s issues, but I urge people to read all the action items, as the are all vitally important.

• We must end our broken and arbitrary system of guardianship and substituted decision making, in accordance with Article 12 of the UN Convention on the Rights of Persons with Disabilities. For too long, the legal capacity of people with disabilities who require assistance with their finances and/or healthcare or who have expressed desires inconsistent with those possessed by their family members have been permanently stripped and denied to them. By putting in place a stronger infrastructure for supported decision-making, our community can facilitate the provision of support where people require it while not requiring a loss of legal capacity as a pre-condition for receiving such support.  Additionally, we must work to restore the legal capacity and rights of the many people with disabilities who currently suffer under a system of guardianship with no acknowledgement of, or recognition for, the preferences of people with disabilities independent of their guardians.

• We must assure that the lives of people with disabilities of all ages are equally valued, protected, cared for and preserved as the lives of nondisabled people.  Healthcare providers must always communicate with persons with disabilities including through interpreters and other auxiliary aids and services to ensure equivalent healthcare services.  Healthcare providers must never use perceived quality of life judgments, the cost of care, or other factors to overrule the decision to receive life-sustaining healthcare made by a person with a disability or their authorized surrogate.  Healthcare providers must also zealously provide suicide prevention services for people with disabilities of all ages that are equivalent to the suicide prevention services they provide for nondisabled people.  As such, we should never encourage or provide the means for any individual to commit suicide.

• We must assure that violence in any form against people with disabilities is not tolerated, and the prosecution and sentencing for homicides of people with disabilities must be treated in the same manner as homicides of people without disabilities.  With the recent addition of disability as a protected class under the federal hate crimes statute, federal investigators and prosecutors must work to bring cases against those who take the lives of people with disabilities because of their disability, particularly when the perpetrators are a member of the victim’s own family.  We must assure that adequate funding is provided to support programs that assist people with disabilities who are victims of crime, including training for first responders, the creation of accessible shelters, and victim rights programs. We must ensure that the justice system is accessible to people with disabilities, using the ADA as a tool to support restorative justice.  We must develop strong working relationships between the disability community and the justice system to address violence against people with disabilities.

Please stay tuned – there is a lot happening these days.