Meet our New Regional Director, John Kelly

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John Kelly
John Kelly

[Editor’s Note:  John Kelly officially began working for NDY as a Regional Director on September 23.  We issued a press announcement on that occasion, but here’s a chance to get to know John better.]

Hello everyone, I want to introduce myself to the far-flung faithful readers of this blog and all the supporters of Not Dead Yet and our mission to halt the deadly discrimination of legalized assisted suicide and euthanasia. My role as Regional Director will be to assist Diane and represent Not Dead Yet throughout the region, such as recently in New Jersey where we are strategizing against an assisted suicide bill.

Getting to work for Not Dead Yet and Diane Coleman is a dream come true. I had the pleasure of working closely with Diane during the campaign in Massachusetts last year against Question 2, the “Death with Dignity” referendum. It was Diane and Stephen Drake’s years of work that laid the foundation for the efforts of our Massachusetts group, Second Thoughts. They boosted us early in our campaign with a Wall Street Journal op-ed with “Second Thoughts” in the title. Not Dead Yet supported us with finances and advice, as we tailored a winning message for the progressive voters of Massachusetts. Our victory in November 2012 was unexpected and especially sweet, given that legalization proponents were already counting their legalization chickens in other states.

I’ve been a disabled person since the age of 25, when I became a quadriplegic from a spinal cord injury. I am a “high quad,” or as some would say, “paralyzed from the neck down,” the dramatic way of saying the accurate “paralyzed below the shoulders.” I have the same amount of physical function as the suicidal characters in the movies “Act of Love,” “Whose Life Is It Anyway?” and the Spanish movie “The Sea Inside.” (The only time I get to see someone like me on the screen is when they want to die, or raise money for the cure.)

I got exposed to Not Dead Yet issues through the writings of the great disability scholar Paul Longmore, who wrote about Elizabeth Bouvia and Larry McAfee, so-called “right to die” cases in the 1980s to early 1990s. I saw myself in those stories, how the courts and the media took for granted that anyone with severe disabilities would want to die, deeming rational the desperate responses to impossibly oppressive circumstances (Bouvia had a miscarriage and marriage break-up, and was thrown out of school and denied services, while McAfee was warehoused in out-of-state nursing homes). Then Not Dead Yet articulated my rage at this prevailing willingness to have us die, at the same time we have to fight for the tiniest service, the most basic accommodation. And like many disabled people, I feel personally vulnerable to the common belief of “better dead than disabled.” (My father thought it would’ve been better if I had simply died in my accident.)

My first Not Dead Yet action was in Cambridge, Massachusetts, to protest an institute affiliated with Harvard giving Jack Kevorkian a “humanitarian” award. I was hooked, because Not Dead Yet understands the first rule of protesting, which is to have fun. Elaine Kolb came up from Connecticut and we sang songs and tried to infiltrate the award banquet. Then I joined the national action in my hometown of Boston in 2000, when the World Federation of Right to Die Societies held a convention. We protested all day in the rain (our classic chant: “We’re here, We’re wet, We’re Not Dead Yet!”). The Boston Globe published my piece on our clash with the death promoters. http://www.ragged-edge-mag.com/extra/ndykellyoped.htm

In the 1990s, I went to graduate school at Brandeis in order to study with one of the founders of Disability Studies, Irving Zola. I loved studying and learning, but realized that I preferred a life of activism to academia. My research led to a couple of articles in the Ragged Edge, on how fear of incontinence helps fuel the assisted suicide movement,  and an exploration of “inspiration.”

The op-ed’s we submitted during the 2012 Massachusetts campaign were group-written, even though they sometimes bore my name. Here is our op-ed that appeared in the Providence Journal just before the election.: http://blogs.providencejournal.com/ri-talks/this-new-england/2012/10/john-b-kelly-why-to-vote-no-on-mass-question-2.html

I am active in Boston on disability issues, especially streetscape accessibility and the horrors of brick sidewalks. I’ve always known, however, that the most important battle going on is the one being fought by Not Dead Yet. I would find myself thinking, as I was measuring whether a change of level was greater than ¼”, that inches and degrees are nothing compared to the right to be secure in our own continued existence.

I look forward to working with and learning from Diane and Stephen and all the other activists and thinkers among us. My experience is mostly fighting the legalization of assisted suicide, so I have some catching up to do on other issues facing our community, like organ donation and POLST. I think our continued success lies in working together across disability with all our present and potential allies, such as the Autistic Self Advocacy Network (ASAN), the mental health recovery community, and the developmental disability community.

And I have a cat, Boris. 🙂

Arizona Daily Star: Derek Humphry and Columnist Push “New Frontier” on Assisted Suicide

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I have to preface this article with an admission.  I had a lot to do with how this article turned out.  Columnist Tim Steller called Diane Coleman Friday (Nov 1) afternoon wanting to interview her about an upcoming visit to the area by Derek Humphry, who would apparently be talking about assisted suicide for people with “mental illness.”  Humphry is, of course, one of the founders of the Hemlock Society.  He also runs his organization ERGO – which sells materials related to assisted suicide and euthanasia.  Most importantly, as far as this story is concerned, Humphry is the Chair of the Final Exit Network Advisory Board.  The Final Exit Network is a group of underground assisted suicide vigilantes who “help” people commit suicide with plastic bags and helium and then clean up the scene to make it look like the deceased individual died a natural death.

All of the above is relevant and important to any story about Derek Humphry discussing assisted suicide for people with mental health issues in Arizona.  See, what was probably the most notorious case involving the Final Exit Network was in Arizona – and it involved a woman named Jana Van Voorhis.  Van Voorhis had no serious physical health issues, but had a long history of emotional troubles.

When I talked with Steller, he was vaguely aware of the Van Voorhis case, but remembered none of the particulars.  He wasn’t familiar with the Final Exit Network and was unaware of Humphry’s role in the group.

It went like this: We discussed an email that Humphry sent to the area promoting two talks he’d be giving in which he spends a lot of space talking about assisted suicide for people with mental health issues.  I said that Arizona was a curious choice to push that particular envelope.  Steller didn’t have any idea it would be significant.  That’s when I explained the history of the Jana Van Voorhis case, the Final Exit Network, and even some less-than-compassionate comments by Humphry on the subject that appeared in a documentary.  Accordingly, I sent him links to articles and videos about the Final Exit Network, Humphry, Vanvoorhis, and some other material – much of which is used in the article.  I also had my own reactions, which don’t appear in the article, but which I’ll add after discussing the article linked and excerpted below, along with some other thoughts.  Steller’s column was published in the November 3rd edition of the Arizona Daily Star.

From the column “Right-to-die advocate pushes new frontier”:

Announcing his visit to Tucson for two Nov. 23 presentations, Derek Humphry, a pioneer in the movement for legal assisted suicide, broached this shocking notion: assisted suicide for those suffering from mental illness and unable to get better.

The idea, he said, came from his long experience in the movement. As right-to-die advocates have become more visible in their fight to establish physician-assisted-suicide laws, people with mental illness have been increasingly approaching Humphry and others seeking what he called “positive help” — in other words, assistance in killing themselves.

“From their point of view, the suffering is as great as a person dying of a physical illness,” he wrote in the announcement of his Tucson presentations. “And it probably is! They argue a terminal patient knows soon death will bring about the end of pain, whilst they are condemned to a lifetime of suffering. They report they have endured long hours of therapy and used mountains of prescribed medications. Still they would prefer death, they say.”

Tucson is an important place for Humphry, who rose to prominence with his 1975 book, “Jean’s Way,” about his first wife’s death by suicide in the face of terminal breast cancer. He founded the Hemlock Society in 1980, and Tucson was the first place in America with a local chapter.

When I spoke to Humphry Friday, he wasn’t willing to advocate directly for the idea and said it won’t be the thrust of his presentations here, but instead explored how and if it would work.

“If ever people wanted to pass laws for the mentally ill,” he said, “it would be done most carefully. There would have to be long record of treatment of illness for the individual” before suicide assistance would be permitted.

Humphry’s disclaimer seems disingenuous at best.  The email that went out promoting his talks consisted mostly of a copy of a 2009 blog entry by Humphry (I tracked the source using google) titled “Realistically, assisted suicide for the troubled is not available“.  There’s just a relatively few sentences at the end talking about Humphry’s former ties to the area and where he’ll be appearing.  Since the column’s publication, Humphry has gone farther in denying he’s pushing the envelope in regard to “mentally troubled people” in messages to his “right to die email list“.  For example, in a message containing Steller’s column, a note is included from Humphry: “D H writes: I have never pushed, or even suggested, for assisted suicide for mentally troubled people, as this headline and article imply. Terminal or hopeless illness is my field. It is sufferers and journalists who constantly put the ‘mental’ question to me.”   Personally, I think he’s protesting way too much – anyone receiving  the promotional email I was shown would expect Humphry to be talking and promoting the topic of expanding assisted suicide “eligibility.”

In his column, Steller reported reactions from 3 people regarding expanding the idea of assisted suicide as an “option” for people with mental health issues: a man identified as having bipolar disorder and who runs supports groups; a psychiatrist; and the sister of Jana Van Voorhis, the woman who died with the “help” of the Final Exit Network.  All of them think it’s a very bad idea. He also writes:

The issue is not just hypothetical. An American advocate of assisted suicide, George Exoo, claimed in a British documentary to have assisted more than 100 people in killing themselves, including a severely depressed Irish woman and others with mental illness. Irish authorities issued an arrest warrant, and he was arrested by FBI agents, but his extradition was denied.

The link is to the first of nine parts of a 2008 documentary by Jon Ronson that aired on the BBC.  It has never been aired in the United States.

At about 4:30 into this video segment Derek Humphry – one of many people interviewed by Ronson – talks about getting calls from people without serious physical issues.  The transcript of his remarks are below. They don’t exactly reek of compassion, but seem to express annoyance with having to deal with these callers – and a lack of concern regarding whether or not they live or die:

Once or twice a week I get very strange people on the telephone and they’re anxious to commit suicide because of their depression or their sad life or something.  When you get one of these people gets on to your number they want to talk talk and call again call you adjectives and pursue you … and they call all the other right to die groups.and they would say ‘oh we can’t help you it’s not really in our parameters, but George Exoo will probably help you’. You see, and that gets them off the phone and on to George.

If you’re able to watch and hear the video, Humphry’s dismissive and callous demeanor comes across even more clearly through tone and body language.  I recommend seeing the entire documentary, in fact.  Exoo – the main subject of the documentary – is still out and about.  And the parts featuring other “right to die” leaders aren’t exactly flattering to them.

Back to Steller, now on the Final Exit Network and Jana Van Voorhis:

In April 2007, members of the Final Exit Network — inspired by Humphry’s 1991 suicide self-help book, “Final Exit” — assisted Phoenix resident Jana Van Voorhis in killing herself. Van Voorhis, 59, had long suffered from mental illness, her sister, Viki Thomas, told me Friday. They helped her kill herself anyway.

In 2009, then-Maricopa County Attorney Andrew Thomas brought charges of conspiracy to commit murder against the group. One man, Final Exit’s then-medical director, was acquitted at trial, but the other three pleaded guilty to lesser charges.

Humphry, who chairs the Final Exit Network’s advisory board, told me Friday the group acknowledged “that was a blunder on their part.”

“She said she was terminally ill and described her terminal illnesses,” Humphry said. “The Final Exit Network accepted that. If they had investigated, they would have found she was mentally ill, not terminally ill.”

As I reported at the beginning of this post, Steller had no idea that the VanVoorhis suicide had anything to do with what he was writing before he talked to me.  He might not have caught up enough on all the details to properly fact-check Humphry. The statements from Humphry regarding the Final Exit Network and Van Voorhis go beyond misleading – they’re pretty close to outright lies.  There was no “blunder.”  And, in fact, the “exit guides” had been told that her claims had been investigated by their so-called “medical director,” Lawrence Egbert.  Here is some info on that from the transcript of  “The Suicide Plan,” a documentary aired on PBS on the series Frontline:

WYE HALE-ROWE: She certainly had disordered communication and it took some work to help her complete the sentences, but she certainly had thinking behind it. Sometimes an illness itself has some cognitive components, and people have difficulty communicating.

And so my concern about her cognition was, does she understand the consequences of what she is requesting? Does she understand finality? Does she know what’s going to happen? And she explicitly knew.

But it was deeply disappointing to find out, for me, that none of those physical diagnosis, medical diagnoses, were real, and that this had not been validated by the medical committee of Final Exit Network.

TOM THOMAS, Jana Van Voorhis’ Brother-in-Law: The man that was supposed to be the medical director of this Final Exit Network organization received actually nothing from any medical personnel, nothing from a hospital, nothing from a doctor. He received a little handwritten thing about her exposure to rat poisoning, bugs eating her, and some of the illnesses she did have over the previous 20, 25, 30 years.

How this so-called medical director didn’t say, “Something is really wrong here. Let’s— let’s step back, let’s take a look at this lady and see what’s really wrong with her”— How that happened is— I don’t know. I don’t know.

LAWRENCE EGBERT, Medical Director, Final Exit Network 2004-2009: We accept, at least theoretically, any individual patient with a disease that’s causing unacceptable suffering, by their definition, not by our definition, and that, of course, would include mental diseases.

Jana Van Voorhis, it was so clear what her problems were. It was also very clear, even on paper, that she’d done a lot of suffering for a lot of years. I was told she wanted to die, and then evaluated the case, thought it was acceptable, and wrote “accepted,” told the coordinator that she was accepted medically, and that’s all I did.

Wye Hale-Rowe, one of the defendants who agreed to a plea bargain, obviously felt misled by Egbert, who in turn seemed to be doing very little “medical evaluation” at all.

As to reactions from the sister of Jana Van Voorhis, they’re mentioned, in part, here:

While Thomas objected to Final Exit’s helping her sister kill herself, she said something surprising Friday that made me stop and wonder: “She’s in a better place, I know that.”

That comment, similar to many people trying to come to terms with a tragedy,  leads to an “epiphany” of sorts for Steller, that runs counter to all of the lousy history, negative reactions and hasty retractions associated with this type of expansion of the – to put it euphemistically – the “right to die.”:

That, in a nutshell, is what makes Humphry’s flawed suggestion worth talking about at all — the suffering of people with serious mental illness is real and torturous enough that sometimes death seems better than life, even to loved ones. It might be a discussion worth having if we were doing the more basic work of ensuring that seriously mental ill people get the treatment they need.

Not only does this conclusion go contrary to most of the rest of the article, but the two sentences contradict each other.

Which brings me back to other parts of my discussion with Mr. Steller.  I described assisted suicide rhetoric as being an unholy mix of both libertarian and paternalistic arguments – on the one hand, “people should end their lives how and when they want” but OTOH “they need help to make sure they don’t have to deal with an undesired outcome.”  These two stances are normally diametrically opposed.

For NDY’s part, we’re against any public policy that sanctions the encouragement and facilitation of some suicides, while treating the suicides of other individuals as “preventable tragedies.”  I added that disability activists were far more concerned with the excesses exercised in terms of suicide prevention – with people’s lives and bodies being violated by forced treatment and institutionalization.  And that there are many people in the movement who have experienced such harm at the hands of the mental health system that they’d rather die than be within its control again.

And how about those suicide prevention groups? I’ve already written about the political, ethical and moral cowardice they’ve exhibited through their collective silence in terms of the promotion of suicide for old, ill and disabled people.  Will they maintain their silence on this topic?  It seems less likely, if only for the most cynical reasons – Too many careers and financial interests involved in diagnosing, labeling and treating (even if its unwanted) people with “mental health” issues.

Obviously, whether or not Derek Humphry wants it to be a major topic when he hits Tucson later this month (now that there’s been fallout), it’s almost assured it will be at the top of the list of things people want to talk about.  Stay tuned.

Click here for  exhaustive NDY coverage of the Final Exit Network.

Click here for NDY coverage of George Exoo.

 

 

Last Day to Submit Input to IOM Committee on Approaching Death – Personal Story

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Today, November 1st, is the last day to provide input to the Institute of Medicine’s Committee on Approaching Death via their online survey, the subject of a previous blog. 

Yesterday I took the opportunity to submit the following personal story involving some disturbing communications from medical professionals a couple years ago when I had some acute respiratory problems.

Question 1:  If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. Your stories may include how you have talked with health care providers, your family, and friends; how you have discussed and reviewed your spiritual or religious needs, your finances, or any other issues. Your stories may also include what you liked and did not like about communication with your providers and others who gave you support, treatment approaches, or any other aspects of care.

I have a serious, progressive neuromuscular disability.  For most of my life, doctors thought I had spinal muscular atrophy, but now there’s a DNA test for that and last year we learned that I don’t have the SMA gene.  So now I have a generic neuromuscular disability labeled congenital myopathy.

I have friends with similar conditions, as well as friends with post-polio syndrome, many of whom use BiPAP machines at night to breathe.  No doctor in my first 45+ years ever mentioned that I might one day need a BiPAP but, fortunately, my friends and I talked about these issues and I learned from them what to look for in terms of potential symptoms.  When I noted a symptom and requested a sleep study, it revealed that I needed breathing support during REM sleep.  I got my first BiPAP about twelve years ago.

I could never understand why I had to be the one to bring it up.  Over the years, I lost three friends to acute respiratory failure who did not have the benefit of my friend’s knowledge and support.  In two cases, their doctors gave them oxygen without mechanical breathing support, which is the wrong answer for people like us.

My current doctors include some with the relevant expertise in neuromuscular disabilities.  I don’t think that the importance of specialty knowledge related to specific disabilities can be over-estimated.  But the other quality that my current doctors have is a willingness to listen to me, talk with me, and engage in dialogue that takes my experience with managing my disability into account.

About two and a half years ago, I caught what I thought was a cold that turned out to be viral pneumonia.  I started going into respiratory failure and my husband called 911.  When the EMTs arrived, I was sitting in my wheelchair and using my BiPAP, but it was not enough to keep my oxygen level up.  I later learned that, as the EMTs were taking me to the ambulance, out of my hearing, they asked my husband if I had a DNR.  Something about they way they asked the question led him to not only say “no” but also to explain to them that I have a full time job.  He felt that this changed their tone.

I was in the hospital for a week, but about a month later, had severe chest congestion that resulted in another 911 call.  I received oxygen with my BiPAP while I coughed through the congestion and, several hours later, I was fine again.  But when my chest x-ray was being discussed, one doctor questioned whether I would want to treat something that might be life threatening.  He looked at me in my wheelchair with what I’m sure he viewed as sympathy for my condition and a genuine concern to be sure that he knew what I wanted.  But I also felt sure that he wouldn’t have spoken that way to a non-disabled woman at age 58.  I said, “I have a full time job,” and he essentially backed off, stopped talking and left.

That was when my husband told me about the EMT experience a month earlier.  We both remarked that we had felt threatened by the medical professional’s tone and both brought up my job as a response.  We also both felt regret about mentioning the job, as though whether someone has a job should determine how they are treated by medical professionals.  Our professional careers include a fight against such oppressive attitudes.  Yet we both felt that mentioning that I work full time changed the dynamic of the communication.

Shortly after these two experiences, I learned about and got a cough assist device and since then I have been able to manage respiratory congestion without resorting to emergency treatment.

But these experiences were a brush with the perhaps subtle forms of devaluation that medical professionals sometimes visit upon people with chronic, serious disabilities.

More blatant forms of discrimination are also common.  . . .

***

I then referred the Committee to Not Dead Yet’s public comments on the nondiscrimination regulations under the Affordable Care Act, and pointed to the Disability Rights Education and Defense Fund (DREDF) comments and other health care resources.  Assisted suicide advocates have also promoted their political agenda to the Committee, so I finished by pointing them to the disability rights opposition to legalization of assisted suicide articulated on the NDY and DREDF websites.

We all know that medical professionals get far too little education about disability in their training curricula.  Please tell your story by going to the online survey.  It’s guaranteed to add to their knowledge of disability, and they need that far more than they realize. – Diane Coleman

 

Not Dead Yet UK: “Real Disability Activists and Masquerades” by Dr. Kevin Fitzpatrick OBE

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(Editor’s Note – you can read this article at the Not Dead Yet UK site – that version includes a couple of links absent here.  Click title to go to original article.  Please read to the end – I’ve added a couple of links of my own on similar issues we’ve dealt with in the U.S.)

Real disability activists and masquerades – by Dr. Kevin Fitzpatrick OBE

 

Have you heard of the new Disabled Activists for Dignity in Dying? And the interesting claim that 75% of disabled people support assisted suicide/euthanasia? Is that really true?

 

And why should DiD feel there is even any need for a ‘disability voice’ FOR euthanasia? There is no special pleading necessary for disabled people under their proposed law. Or are they arguing for disability rights for euthanasia? That makes no sense.

 

DiD have always claimed their campaign is not to change the law for disabled people, but for those with only a few weeks or months to live.

 

Therefore, is DiD really a lobby for assisted suicide for all disabled people and sick people, rather than people who are very sick and soon to die?

 

Who are these activists?

 

It is true they are all disabled people. However they are individuals with a point of view, not representatives of any Disabled People’s Organisation. For example, this new arm of the rather aggressive lobby DiD, is led by wheelchair user Greg Judge, who is listed as a member of staff and is therefore paid by DiD to represent that organisation’s core mission and values.

 

NDY UK, on the other hand, is a network of disabled people working largely pro bono and who have been mandated to represent the views of many disabled people. There is a difference.

 

And still, too date, the majority of disabled people I know are either entirely against or have huge reservations about such a law.

 

The others involved in DiD are Lucy Aliband who impairments resulted from a traumatic road accident; she joined this year after her experience of her mum’s death and like Sally O’Connor, who was diagnosed with the progressive condition MS, is naturally dealing with constant personal changes which will inform her view. The last is Melanie Reid, a journalist who became quadriplegic two years ago and who thinks it makes no economic sense to ‘keep people alive’. You can read her other opinions in the Times (March 27, 2012) where she indulges herself, in name-calling and rant. No evidence, no counter-argument. Melanie Reid refused to engage with me in any kind of honest debate.

 

This is the basic line up of Disabled Activists for Dignity in Dying. Is it really representative? Just calling them ‘activists’ does not make it so.

 

Baronesses Campbell and Grey-Thompson, others involved with Not Dead Yet UK, have a long and collective history of representing large numbers of disabled people’s rights through democratic structures and processes.

 

In the world of legitimate disability activism one thing is clear: we are required to seek the views of large numbers of disabled people in order to speak on their behalf – it is called democracy! That’s what we do.

 

Therefore I question the legitimacy of this new group of disability activists because of the self-appointed members who are also the spokespeople.

 

And where has this crazy figure of ‘75% of disabled people want their right to die’ come from? So far as I can make out, DiD source it in the British Social Attitudes Survey 2007.

 

Now why the BSA 2007 and not say the latest available survey of 2012? The BSA’s own search tool reveals the following results for keywords/phrases: ‘assisted suicide’ 0; euthanasia 0; dignity 0; dying 1 (but that last appears in the report about relationships and nothing to do with assisted suicide).

 

So if there was any truth in the 2007 survey they are promulgating, have disabled people actually changed their minds away from assisted suicide/euthanasia despite DiD’s best efforts in the intervening period?

 

BSA conducted 3,248 interviews, and asked 4 questions in the disability ‘section’ of the 2012 survey none of which related to assisted suicide/euthanasia but were about prejudice and whether disabled people can live full lives. The number interviewed was around 2,100 for each of these four.

 

Think on that – it appears that 3,248 people were interviewed in 2012 – and in 2007 the ‘Number of units: 4,124 cases’ (whether that means actual individuals I don’t know), carried out ‘by computer assisted personal interviewing’ in which ‘some questions are asked regularly, others less often’. The earlier report cites categories like ‘care of the disabled’ – no activism (nothing about us without us) here then.

 

So 0.003% of the population answered unrelated questions in 2013. Therefore I challenge DiD to explain how they have come up with this figure on 75%. I believe this to be propaganda unless and until proven otherwise.

 

Now I have raised this question before but I think it bears repeating: what is DiD’s real motive?

 

By Lord Falconer’s own admission any law would affect about 1,000 people a year. I would bet a great deal that a number of those would have serious second thoughts if offered the very best in palliative and social care.

 

Any law must, by its nature, be general covering everybody which is why it makes no sense to make a special case for disabled people. The law will be there for not just the fewer than one thousand, but each and every one out of the six hundred thousand who die in the UK every year. So where are the voices of the majority who do not wish to commit suicide? Again, where is the democracy?

 

I have engaged in many debates against many people, especially on moral questions like this: usually, I can see the integrity of my opposition. I may not agree with them, but I can see how they might have arrived at their position honestly. I can respect them in some ways (depending on the extremity of their moral position).

 

But how can I or anyone respect an organisation hell-bent on introducing laws that are by their own estimation for a tiny number of people, but who know very well (evidence from Holland, Belgium and Oregon), who know full-well that any such law will mean that innocent people die, and first among equal candidates are disabled people. How can I respect those who use sheer propaganda to bully people into believing them?

 

What is their real purpose?

(Editor’s note:  We’ve had similar issues here in the U.S. with assisted suicide proponents saying, on the one hand, that disability has nothing to with assisted suicide, but finding disabled people to put forward to attempt to counter our message.  You can read a description of “Autonomy, Inc” here (note – the leader of the group – Paul Spiers – passed away a short time ago.)  In 2011, Compassion and Choices (C&C) published a newsletter claiming that “Key Disability Rights Leaders” support assisted suicide. The only “disability organization” to support assisted suicide is Autonomy, Inc., which was formed as a chapter of Compassion in Dying.  We have a response flyer to C & C’s “key disability rights leaders.”  You can view a version of the flyer – without pictures – at this link.  The complete version is located here, but it downloads directly to your computer when you click on it.  We’re trying to fix that.)

 

 

RELEASE: Canadian Association for Community Living Relieved at Dismissal of Appeal in Rasouli Case

Our News & Commentary Blog, , , 
The Supreme Court of Canada has dismissed an appeal that would have permitted 
doctors to end life support for a severely brain-damaged man without the consent 
of his family or a substitute decision maker.

Under the Health Care Consent Act, doctors who want to withdraw life support 
from an incapacitated person without the consent of their authorized health care 
decision-maker must take the issue up before the Consent and Capacity Board.  
The burden is on the doctors to push their case for withdrawing care, rather 
than on the individual’s family to block the doctor.  The Board’s decision can 
be appealed to the courts.

Canadian Association for Community Living Relieved at Dismissal of Appeal in Rasouli Case

For Immediate Release

October 18, 2013

Toronto

The Canadian Association for Community Living (CACL) is relieved that the Supreme Court of Canada (SCC) has dismissed the appeal in the case of Cuthbertson v. Rasouli where Mr. Rasouli’s attending physicians sought to override the wishes of his family and withdraw life support measures.  In a majority judgment, the Supreme Court clearly affirmed that life support is medical “treatment” within the definition of the Ontario Health Care Consent Act (HCCA).  Thus disputes over whether or not it should be withdrawn are disputes about consent to health care treatment or about acting in the best interests of the patient in respect of health care decisions. The regime in Ontario provides a process for resolving such disputes through the Consent and Capacity Board, and the SCC judgment asserts that is the place to resolve them.

Had the SCC ruled otherwise, it may have opened the door to physicians acting unilaterally to withdraw life sustaining treatments, unless their patients or their substitute decision makers or supporters could get to court to request an injunction.  Such requirements would impose significant barriers to justice for older persons and persons with disabilities who, as the SCC has already acknowledged, face historic and systemic disadvantage.

CACL has been involved in a number of cases where medical professionals have attempted to override the wishes of individuals and their families with regard to continuation of life-sustaining treatments, often for infants born with complex health care needs. These cases demonstrate the perilous position that people with disabilities can find themselves in when they enter the health care system. These have taken many forms—from inappropriate use of “Do not resuscitate” orders, to pressure from physicians to terminate treatment.

Today’s decision is welcomed by CACL in preventing potentially disastrous implications of granting blanket decision making authority to physicians.  Only providing recourse to apply for court injunctions is not the way to resolve decision-making challenges.  In making clear that legislated procedures under the HCCA govern decision making, the Court has ruled against further barriers to justice and equality for people with disabilities and older persons.

– See more at: http://www.cacl.ca/news-stories/blog/canadian-association-community-living-relieved-dismissal-appeal-rasouli-case#sthash.eVYBsWR6.dpuf