Barbara Mancini Case: Compassion & Choices Uses the Case as Opportunity to Launch “Legal Defense” Fundraising Drive

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For those unfamiliar with the charges against Barbara Mancini regarding her role in the death of her father, please check our previous coverage here, here and here.

The latest news on the case is that Mancini is still facing assisted suicide charges and awaiting a judge’s decision on a petition to dismiss the case.

Beyond that, the big news – beyond this case – is that C & C has used this opportunity to start a new line of fundraising.  From the article, “Philly nurse charged with assisted suicide gets help with legal bills“:

Compassion & Choices, a nonprofit focused on end of life choices, has started a legal defense fund for a Philadelphia nurse charged with assisted suicide.

Barbara Mancini administered morphine to her 93-year-old father in February at his request. He was in hospice care at the time and had a prescription for the morphine.

When he died four days later, his daughter was arrested. She’s now facing a 10-year prison sentence.

Mancini acted appropriately as her father’s legal decision maker, said Mickey MacIntyre, chief program officer for Compassion & Choices.

“Compassion & Choices established a general legal defense fund in order to help the families like the Mancinis who suffer legal costs, as well as to cover other advocacy costs,” said MacIntyre. (Emphasis added.)

Most donors probably aren’t going to be reading the fine print – and the article doesn’t expand on what “other advocacy costs” means.  Donors, though, can not be sure their dollars are going just to defense costs, judging from MacIntyre’s own words.  At the very least, there’s no doubt that this new fundraising tool will be useful in building a database of people who have shown themselves willing to donate to C & C’s advocacy.

I”m in this, too, btw:

According to Stephen Drake of Not Dead Yet, an organization opposing legalization of assisted suicide, barbiturates are more effective and more commonly used than opiates, such as morphine, for individuals intending to assist with a suicide.

The Mancini case shouldn’t be prosecuted, said Drake, because it doesn’t fit the parameters of assisted suicide and will be hard to prove.

“It helps to perpetuate the illusion that prosecutions like this are common and they’re not, they’re very rare,” said Drake, a research analyst.

Context:  Specifically, I said that one troubling aspect of the case is that it perpetuates the myth that generous morphine use in hospice shortens people’s lives – and it’s a myth that pro-assisted suicide advocates like to perpetuate.  Opiates aren’t “reliable” in causing deaths – that’s why barbiturates are used in the states that have legalized assisted suicide.

And I’ll say it again.  Prosecutions like this are rare.  And unless there’s compelling evidence that hasn’t been made public, the prosecutor will have an impossible time convincing a jury that the morphine Barbara Mancini’s father took actually killed him, let alone the issue of whether or not her giving him his own medication rises to a level of illegal assistance in a suicide – or attempted suicide.

Farewell to Alison Davis – Ally and Activist (1955-2013)

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(Editor’s note – I didn’t know Alison well. We met only once at a conference and corresponded a few times.  But I think she’s the only person I’ve met older than myself with lifelong treated hydrocephalus.  Alison had spina bifida, while I acquired hydrocephalus through other means.  She was a valued ally and a strong voice against the assisted suicide and euthanasia movement across the world.  She will be missed.)

We’ve lost another one.  Alison Davis – a campaigner against assisted suicide and euthanasia – died in the morning hours of December 3.  The news was sent out by Colin Harte,  her carer and close friend for over 20 years.  In the UK, Alison was also a passionate voice in the prolife movement.  NDY doesn’t engage on either side of the “pro-choice/pro-life” debate, but we have sometimes found ourselves working with pro-life activists like Alison – who was brilliant, passionate and disciplined.

Here are a couple of examples of her work:

In 2011, Vivre dans la Dignité / Living with Dignity in Quebec, Canada filmed and produced a short testimonial on euthanasia and assisted suicide by Alison:

 

In 2004, Disability Studies Quarterly published an article by Alison titled “A Disabled Person’s Perspective on Euthanasia“.  Here’s an excerpt:

When I have told my story in public, representatives of the Voluntary Euthanasia Society have always protested that under their proposed rules my request for euthanasia would have been denied because they claim I was “depressed.” Apart from the breathtaking arrogance of presuming to know my state of mind at a time when they did not even know I existed, the truth is that the supposedly “strict safeguards” to a euthanasia law that the VES promotes, do not even mention depression as a disqualifying factor. In fact, most requests for killing do stem from some form of depression, and the availability of euthanasia would simply mean that less attention would be paid to trying to treat it.

To learn more about Alison and her life, please check out this Memorial Page set up by her long-time friend and carer, Colin Harte.

John Kelly Talks About the Tim Bowers Case

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On December 5, 2013, NDY’s John Kelly talked about the Tim Bowers case during public comments he provided by telephone to the National Council on Disability.  Bowers is the Indiana hunter who was injured in a fall and died the next day when he told doctors to stop life support.  John requested the Council’s help in saving the lives of newly disabled people who are increasingly subjected to a medical “rush to judgment”, a premature doom-and-gloom prognosis that feeds the fears and prejudices of newly disabled people and their family members about life with disability.

The following is John’s three-minute comment, which is also available on video (with the audio and visual slightly out of synch).

NCD Comment John Kelly, December 5, 2013, Topeka Kansas

“New Disability and the Rush to Judgment”

My name is John Kelly and I am the New England Regional Director for Not Dead Yet.  I want to speak to NCD’s long-standing commitment to the essential principle of self-determination.

Last month, Indiana hunter Tim Bowers fell from a tree and broke his neck. Bowers breathed on his own until help arrived, 5 or 6 hours later.  At the hospital, he was intubated, placed on a ventilator, and put under sedation to spare him physical discomfort.

Less than 24 hours later, news reports had doctors predicting that Bowers would “likely spend the rest of his life in a hospital bed, attached to a respirator unable to hold his soon-to-be-born child. “

Bowers’ wife Abbey said “The last thing he wanted was to be in a wheelchair. To have all that stuff taken away would probably be devastating. He would never be able to give hugs, to hold his baby. We made sure he knew that, so he could make a decision. Even if he decided the other thing, the quality of life would’ve been very poor. His life expectancy would be very low.”

“We made sure he knew that so he could make a decision,”  his wife said.  But what Tim Bowers was led to accept as truth about his future was false.  His tragically unnecessary death is another in a line of “rush to judgment” cases, in which newly disabled people are immediately steered towards death.

I have almost exactly the same injury as Bowers and I know that reliable prognosis requires the passage of time.  Weeks or months under ventilation was typical at my rehabilitation hospital.  In the spinal cord injured community, we know people who weaned off ventilation.  We also know many people who have led thriving lives with breathing assistance, whether by ventilator, oxygen, or continuous pressure CPAP/ BiPAP.

Tim Bowers deserved to get the same suicide prevention services offered to any other person in the throes of trauma.  Instead, he was given an incomplete and hasty prognosis and false certainty of future suffering. No one told him about all the opportunities open to him, or about the adjustment and adaptation that follow in time.

Based on this misinformation from doctors, and his and his loved one’s fears about  life in a wheelchair, Tim Bowers gave his consent to dying on the first day after his injury.  In no way was his decision based on informed consent.

We urge NCD to investigate the ways in which state health laws are being distorted and abused.  Meaningful self-determination gets bypassed and obstructed in favor of a rush to judgment that cuts short the lives of newly disabled people based on ignorant and outmoded judgments about quality of life.  We urge NCD to come up to speed on health care decisions laws because national guidance is needed to help reshape these laws to prevent discrimination in these life and death judgments.  My written comments include action steps.

We also understand that NCD has been cultivating relationships with state legislators; and just like your great work with parenting rights issues and others involving state laws, we urge you to be ambassadors to state policy makers and ask you to help us share our concerns with them.

Thank you for your time today.

John B. Kelly

New England Regional Director

Not Dead Yet

 

John Kelly Quoted in NPR Thanksgiving Day Article on POLST

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As regular readers of the NDY blog know, the disability community has concerns about Physician Orders for Life-Sustaining Treatment (POLST).  (For NDY’s overall take on the subject, go here, and for NDY’s summary policy paper on POLST, go here.)

For one thing, even though it says “for” life-sustaining treatment, it would be more accurate to say “on” or “re(garding)”.  And if you really want to be accurate in reflecting the medical profession’s intent in promoting POLST, you’d say “against” or “vs” because there seems to be a far from subtle POLST bias against life-sustaining treatment.

In fact, as NPR’s After the Cranberries and Pie, Let’s Talk About Death by Nancy Shute explains:

“Because it’s signed by a doctor or other provider, a POLST has teeth. It overrides the legal obligation of an EMT or a hospital to provide CPR and other emergency care that for old and sick people can lead to a long, miserable hospital stay.”

Besides the inherent bias against treatment, the disability community is deeply concerned about the inappropriate use of POLST on people with disabilities who are nowhere near dying.  John Kelly described his experience with MOLST (the Massachusetts version of POLST) in his recent online response to a survey by the Institute of Medicine’s Committee on Approaching Death.   So Shute contacted John when she was preparing her article for NPR’s Thanksgiving edition.

Here’s how she conveyed John’s concern:

Some members of the disability community have questioned whether POLST is being too broadly applied. Rather than give people more control over end-of-life medical care, they say, it could mean interpreting “disabled” to mean “on death’s door”.

“Our concern is that it’s being used with non-terminal people,” says John Kelly, a 54-year-old quadriplegic who lives in Boston. He was taken aback when a nurse showed up with Massachusetts’ version of the form, called a MOLST. “I joke that I’ve got my pink MOLST on the fridge, and I’m afraid that the firemen will come in and glance at the refrigerator and say, OK, he’s got [a do-not-resuscitate order]. They interpret it as meaning no treatment at all.”

Shute also spoke with Dr. Susan Tolle, identified as “director of the Center for Ethics in Health Care at Oregon Health Science University”, though not mentioning that Tolle is also a member of the executive committee of the National POLST Paradigm Task Force.   According to Tolle:

“We would encourage doctors to reach out to patients if they would not be surprised if they died in the coming year,” Tolle says, “or if they had advanced frailty. The little old lady hunched over their walker, that’s the definition of frailty.”

***

POLST is almost certainly inappropriate for someone disabled but otherwise healthy, Tolle says. “People are handing out the form a little too early sometimes, and we want to push back on that,” she says. “It’s for people who we can say are in the winter of their lives. They have advanced illness and frailty. They have declining health.”

The definition of who’s appropriate for POLST is a significant aspect of Dr. Tolle’s work over a period of years, and this vague, overbroad and confusing description appears to be the best she can offer.  No wonder that mistakes are being made that put our lives at risk. – Diane Coleman

Not Dead Yet in the Smithsonian

Our News & Commentary Blog

This is old news, but good news.  On June 25, 2013, a Smithsonian press release announced that:

The Smithsonian’s National Museum of American History will launch “EveryBody: An Artifact History of Disability in America” to explore themes and events related to the history of people with disabilities in the U.S. and offer a new perspective on American history. This online exhibition is a first-of-its-kind image compilation that provides access to objects and stories related to the history of disability that have been collected at the museum for more than 50 years. The information is presented in English and Spanish, and the website is designed to be accessible to all users, including those using specialized software for vision or hearing impairments. All pages on the website follow federal accessibility guidelines, which are outlined on the site’s Accessibility Statement page. The website is available at everybody.si.edu.

Several Not Dead Yet artifacts are included in the online exhibit, something long planned by its curator, Katherine Ott,  who also curated a physical exhibit of these artifacts over a decade ago.  A note from Ms. Ott posted with the online exhibit states, “This exhibit physically existed in the gallery from July 2000 to July 2001. Now it is only available on the web.”

I got to see it once, and was very glad to find it displayed right next to the exhibit of lunch counter protests in the Civil Rights Movement.

In no particular order, here are links to the NDY items.

NDY button – I think this was part of the 1997 US Supreme Court rally and was included with a larger collection of disability rights buttons.

NDY knit hat – (Scroll down the displayed items.)  Bunny McLeod of New Hampshire ADAPT and NDY used a hand held knitting machine and designed this hat for NDY to sell to keep NDY and ADAPT activists warm during the cold weather protest actions.

NDY Lapel Pin:  T4 Never Again – (Scroll down the displayed items.) “T4” is short for the street address Tiergartenstrasse 4, the location of a group of German psychiatrists and physicians in charge of killing more than 100,000 people with disabilities in the eugenics program conducted during the time leading up to World War II.  We designed and made this pin for our protest against Princeton University for hiring Professor Peter Singer, an advocate of euthanasia of disabled newborns as well as a cognitive test for “personhood” that could be applied to determine the status and legal rights of individuals with intellectual disabilities, severe brain injuries or dementia.

NDY t-shirt – This display includes the first NDY t-shirt, which about 45 disability activists wore on June 21, 1996 in our first protest action, targeting Jack Kevorkian, the Michigan pathologist known as “Dr. Death” for the assisted suicides or euthanasia deaths of about 130 people, with a second day of protest focused on a bioethics conference.

And just for fun:

ADAPT Photo – A much younger me is on the far right next to Cassie James, blocking an inaccessible bus with ADAPT.

Hopefully, one day, there will be a permanent physical exhibit of disability history at the Smithsonian.  Meanwhile, we thank the curator, Katherine Ott, for her long term efforts to see beyond the medical model of disability and document our disability rights movement as a central part of disability history. – Diane Coleman