Blog Recommendation: Two to Read from the Flanoor Blog by Adrian Rhodes

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A couple of days ago, someone sent me a friend request on Facebook.  After I accepted, we exchanged a few pleasantries and info – and then he mentioned something about a blog.  I’m always happy to find other thinkers and writers on the net that I can read and that I can point others to.  I’m happy to say that my newest Facebook friend Adrian Rhodes is also the newest of those bloggers I can point to – and read for myself.  Adrian describes himself as a social commentator/researcher/person of hidden disabilities – and his blog covers a fairly wide range of topics.  Two recent ones are centered on the assisted suicide/euthanasia debate in Canada.  The full title of his blog is “Flanoor blog: observations on life.”

Just yesterday, Adrian posted a response to an op-ed that appeared in the Toronto Star earlier this summer.  Here’s an excerpt:

Last week, I wrote about Gifford-Jones’ piece in the Toronto Sun extolling the virtues of assisted suicide/euthanasia.  I pointed out that there were problems with his position: namely, lack of real-world connections, saying there were no problems with medically provided death.
In this post, I point out there is an alternative way of looking at the issue: cost savings.  It is said that our medical system is broke.  So when Thomas Walkom ran a column in the Toronto Star on Saturday June 15, 2013, he made some good points no-one else ever seemed to make: it’s all about the money.  Walkom provides a more cogent argument than Jones: he does not resort to name-calling or ad hominem attacks in his piece.  This apparent distance makes the tone of his article a little easier to take.
For example, Walkom points out that “Quebec, however, is talking about more than assisted suicide.  Its Bill 52 would allow doctors to administer the lethal dose.” [A8]  This is different than standing by while an infant is starved to death over a course of days or weeks.  It is this activity that some doctors find unpalatable: the notion that killing has become part of curing.  And that is how Bill 52 is stated: euthanasia is now considered part of palliative care in Quebec’s Bill.
Read the rest of the blog entry here.
Just today – August 16th (I said these were recent, didn’t I?) Adrian has posted a review of Tom Koch‘s recently published book, “Thieves of Medicine: When Bioethics Stole Medicine.”
(Confession – for reasons that escape me, we haven’t ordered a copy of Tom Koch’s book yet.  That will be rectified this weekend.  Tom Koch is a friend and supporter of Not Dead Yet and we have great respect for his work.)
Below is an excerpt of Adrian’s review of Tom Koch’s recently published critique of bioethics:
This was a difficult review to write, not because of the topic of bioethics, nor because of the potential emotional impact of the subject, but because this book is hard to categorize.  Is it history, ethics, anthropology or philosophy?  It is in fact all this, because Tom Koch, a gerontologist and ethicist, is so far-ranging over this topic at hand.
His  basic thesis is simple: the promises of professional ethicists have not come true.  The reason is also simple: ethicists convinced us that traditional ethics of care first for patients has been hijacked in the favour of money and research.  This is a theme to which Koch returns time and again in his book.
For anyone interested in ethics, medical care, life issues or the patient experience in a theoretical perspective, this is a good book.  It helps that Koch is Canadian, because he has a Canadian awareness that is sometimes lacking in books of this type.  Koch takes us through a potted philosophy course, highlighting Kant and Mill, showing how these philosophers were misinterpreted to suit the ideology of ethicists in favour of research and money.
Please read the rest of the review here.

 

 

Guest Blog by Amy Hasbrouck: The Thrill – Spoiler Alert

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I am not a theatre buff, so I won’t try to write a review of Judith Thompson’s play The Thrill, currently at the Stratford Festival in Ontario.  It is a “what if” play, taking its inspiration, starting point, and much of its material from a New York Times Magazine article by Harriet McBryde Johnson entitled “Unspeakable Conversations.”  The 2003 article describes Johnson’s exchanges with Princeton bioethicist Peter Singer between 2001 and 2002, when she spoke at Princeton on assisted suicide.

In her article Harriet Johnson made a throw-away comment about her “head being turned” by Singer’s polite, respectful and appropriate behavior on their meeting at Princeton.  The playwright spins out the scenario of “what if” the two fell in love.

In the first act, Thompson introduces Elora Dixon, a lawyer and disability rights activist with strong beliefs, smarts, southern style and the heart of a poet.  Her personal assistant, Francis, is a devoted friend and counselor who shares her earthy sense of humour.  Compared to Peter Singer, the character of Julian Summer is “more of a humble pop philosopher with one mega-hit book” who teaches at McGill University.  Elora and Julian meet when he stops in Charleston, South Carolina to promote his book and visit his aging mother, Hannah.  Julian’s book describes the short life of his youngest sister who died of a neuromuscular disease.  Julian’s mother Hannah has mild dementia and is living with her daughter.  Julian often uses the threat of sending her to a nursing home as a lever to force Hannah to behave.

The actor playing Elora does a very good job, but she does not have a disability.  She is shown being spoon fed, having her hair brushed, and having her torso washed while clothed.  All the same, my companion Liz Carr said the mostly non-disabled audience seemed withdrawn into their seats as they watched.  Whether they were trying to avoid the subject of death, the frank talk about disability, or both, we couldn’t tell.  The heavier topics were offset by laugh-lines delivered mostly by Elora, Francis and Hannah.

As the second act opens, Elora has had to accept a feeding tube, which she believes is the “beginning of the end” for her.  Her doctors have told her she will lose her sight, her hearing then her mind before she dies; she does not question this.  Though she is in love with Julian she still mistrusts his motives, and rejects him when he returns after his book tour.  Meanwhile Julian decides his mother is a danger to herself and puts her in a nursing home, where she soon dies.

Afraid to face her worsening illness, Elora decides she wants to die.  She asks Julian to “put his money where his mouth is” and kill her, by kissing her until she suffocates.  Julian doesn’t want to do it but is eventually convinced because Elora claims it is “her choice.”  He tries, but can’t go through with it, saying he loves her too much to do it.  Elora decides to soldier on until the end with Francis at her side, sending Julian away for the last time.

In her essay about writing the play, Judith Thompson says she had a seizure disorder during adolescence, and wore the identity of “an epileptic.”  And while it’s clear she admires Harriet Johnson, the play seems like it was written by someone whose understanding of disability rights is skin deep.  We talked afterwards with someone involved with the production, who said that the group really struggled with the ending, and changed it many times.

Elora’s sudden desire to die seemed a truly bizarre choice (except when viewed from a non-disabled perspective), chock full of dangerous subtext.  It reinforces the view of non-disabled people that somewhere deep inside, disabled people really hate their lives and want to die.  Worse still, it suggests that disabled opponents of assisted suicide really think about assisted suicide exactly the way non-disabled people do.

I knew Harriet Johnson, who died in 2008, through phone meetings and her writings; I may have met her at one of the early Not Dead Yet actions, I’m not sure.  I can’t speak for her.  Like all people with disabilities who face constant oppression, she probably had moments of depression, frustration and rage which when turned inward, can become self-hatred and even a wish to be done with it all.  I know those feelings, we all do.  But it’s a long stretch between feeling worn out and defeated, and asking someone to kill you.

I also think that people who work against assisted suicide who become suicidal would kill themselves rather than asking someone else to do it for them.  The distinction between suicide and assisted suicide seems lost on the playwright, who opts to have Elora betray the cause as soon as the issue touches her personally.

While it’s good for non-disabled people to see a character based on Harriet Johnson, (even if she’s a little over-the-top and short on substance) make the disability arguments against assisted suicide, the plot twist in the second half undermines the credibility of those arguments.  In the end, it’s the non-disabled character’s unwillingness to go through with it that sets her straight, another tired plot device to show that people with disabilities can’t run their lives and need a non-disabled person to guide them.  The play leaves me very worried about its effect of the play on non-disabled audiences.

The author refers to Not Dead Yet several times during the play, with an NDY banner on the back of Elora’s wheelchair, even showing her assaulting Julian with the chair during a demonstration.  Ms. Thompson should have had the courtesy to contact NDY before borrowing the name and image, and to learn more about Harriet and NDY’s philosophy and tactics.  NDY uses non-violent tactics and NDY activists do not use their wheelchairs to threaten anyone.

The Thrill is part of a larger “forum” within this year’s festival that features performances and discussions on the “right to die.”  The only person with an identified disability involved in the forum is a workshop moderator.  Alex Bulmer is a playwright with a visual impairment who is leading a panel discussion on August 15 entitled “writing about the right to die.”  The forum is a perfect example of the problem with the debate on end-of-life issues – disabled people, whose lives are at stake, are not leading the discussion. – Amy Hasbrouck

Amy Hasbrouck is a member of the Board of Directors of Not Dead Yet and heads up Toujours Vivant/Not Dead Yet (Canada).

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.