News on Minna Mettinen-Kekalainen: Home Care Resumed, But Problems Remain

Like many bloggers/advocates/activists, I have been awaiting word that Minna Mettinen-Kekalainen’s home care had actually resumed. The last news story about her situation was published when the first day of resumed care was still several days away.

Northern Life.ca has an update on Minna, a mixed bag of good news and progress still to be made:

A Sudbury woman facing a losing battle with Lou Gehrig’s Disease started receiving care once again Feb. 2 from the North East Community Care Access Centre (CCAC), but it was not the level of care she had been expecting.

In mid-November, Minna Mettinen-Kekalainen stopped receiving care from the local Community Care Access Centre after she refused to sign a contract that would prevent her from contacting the proper authorities if she wasn’t being given proper care.

When her care was reinstated Mettinen-Kekalainen had been expecting a nurse to provide care in the morning and afternoon. However, a nurse didn’t come until the evening.

She has written a letter to the CCAC about this. A representative of the CCAC said the organization cannot discuss issues with individual clients because of privacy legislation.

The print story has a link to longer video coverage, which can be viewed here.

Among other things (and I am paraphrasing/summarizing here), the nurse that arrived seemed to be doing the best that she could, but was operating from incomplete/incorrect medical orders. And the nurse, of course, is limited to what she can do – according to the instructions/orders she’s been given.

Hopefully, this is something that can be worked out fairly simply. Getting medical instructions corrected can’t be that big a deal – can it? Let’s hope not, anyway. –Stephen Drake

ABC’s GMA Helps Author Promote Memoir and Assisted Suicide

ABC’s Good Morning America appears to have pulled out all the stops in helping attorney John West promote his recently-published book, “The Last Goodnights.” The book is a memoir detailing how he “assisted” the suicides of both his parents about ten years ago.

Before I get into the specifics of the coverage, I’d like to offer several caveats in regard to memoirs. First, there have been several high-profile memoirs over the past few years that were revealed to contain significant fabrications – events that never happened, but that made better reading. A Million Little Pieces, by James Frey, is probable the most notorious example. “Angel at the Fence: The True Story of a Love That Survived” by Herman Rosenblat was another memoir whose central plot point was a total fabrication – making national news last December.

So it’s probably wise to be a little cautious in accepting the total veracity of any memoir that is as totally unverifiable as John West’s account of his role in his parents’ deaths. The only people who could verify his account – his mother and father – are dead. I doubt that it would be possible to verify they died through anything other than natural means, even with exhumation and autopsies. Ten years is a long time.

Today, GMA has done its best to make West’s memoir financially rewarding. The site has video, a written story and a book excerpt. Makes me wonder if ABC is already in negotiation for film rights.

From the story:

For attorney and author John West, his parents were lifelong sources of comfort, wisdom and pride.

But West has been keeping a 10-year-old secret about his parents from everyone, including his two sisters, which he is revealing for the first time in a memoir called “The Last Goodnights.”

West helped his terminally ill parents commit suicide, a crime in the state of California, where the deaths took place. In revealing his actions, West acknowledges he could face prosecution.

“I’m hopeful that that won’t occur, but there is the possibility,” West said in an interview that aired on “Good Morning America” today. “The statute of limitations for assisted suicide has run [out] but the prosecutors can charge you with just about anything. There is no statute of limitation for murder, for manslaughter, probably certain drug offenses.”

Nice drama, there, but as I noted before, it’s doubtful that anyone could prove these deaths were suicides or homicides at this stage, even if law enforcement was inclined to do more than yawn about the allegations he’s leveled against himself. Michael Phelps stands a far more significant chance of dealing with the wrong end of law enforcement than West does.

According to the book excerpt on the site, Wells’ relationship with his father was strained, due to his father’s long-term philandering, culminating with introducing an illegitimate son at gatherings of friends and family over the last two years or so of his life. Wells’ father had been diagnosed with cancer – according to Wells it was in an advanced state and he’d been given a prognosis of less than six months to live. Neither the story nor the excerpt make clear the nature or the extent of the “help” he rendered his father. According to Wells, the alleged suicide has been kept a secret – even from Wells’ mother.

In the same timeframe, Wells’ mother had been diagnosed with alzheimers. Admittedly depressed over the loss of her husband and the road ahead of her, she asked Wells for the same “assistance” given the father – assistance she knew nothing about.

Here’s one place the GMA brainiacs obviously glossed over the obvious. As someone recently diagnosed with alzheimer’s, Wells’ mother’s death was years away – far from a conventional definition of “terminally ill.”

They blow it here, too:

Assisted suicide, even if intended as an act of mercy, is still considered a crime in most states. Oregon and Washington have legalized it, and a Montana judge’s decision to do so is under appeal.

But even in those states, physicians, not family members, are authorized to help carry out the act, by prescribing a dose of lethal pills to terminally ill patients who have been counseled and who have, in some cases, undergone psychiatric evaluations.

First, Oregon is the only state in which legal assisted suicides have actually occurred. Second, as readers of this blog know, psychiatric evaluations in Oregon have become nonexistent and a major study indicates that people with clinical depression have been given lethal doses.

Finally, West gives this as the motivation for writing his book (nothing about money, notoriety or speaking gigs, oddly enough):

West said he wrote “The Last Goodnights” hoping that it will spur debate about assisted suicide laws.

“I’m saying I don’t want you to ever have to do what I did and don’t break the law but change the law,” he said. “The law needs to be changed.”

Again, the ABC robots fail to challenge an obvious flaw in his logic here. His mother, even by his own account, wouldn’t have been “eligible” for assisted suicide in either Oregon or Washington. What will happen in Montana is anyone’s guess. Maybe the law West is advocating for is the one that’s been introduced in New Hampshire, that defines “terminally ill” so widely that his mother or anyone else with a serious disability or condition would “qualify” for assistance in offing themselves.

Maybe they’ll clarify some of this when ABC does the made-for-TV-movie. –Stephen Drake

New Mobility: NDY quoted in story on U.K. Airing of Ewert Suicide

Back in December, Roxanne Furlong called me. Roxanne is the Associate Editor of New Mobility, a magazine focused on the interests of wheelchair users. It covers the gamut of disability concerns – the arts, lifestyle, leisure, politics and advocacy.

Roxanne called me for comments on the airing of a documentary that featured the suicide and actual death of a “suicide tourist” – the name given to U.K. citizens who travel to Switzerland for the express purpose of killing themselves, using the somewhat expensive services of the organization Dignitas.

The short article, unavailable online, summarizes the situation concisely and also includes my own quotes on the issue. This is from the February 2009 issue of New Mobility, page 14:

Assisted Suicide Aired on Television

Britain’s Sky Real Lives broadcast station took reality TV to new lows by airing “Right to Die: The Suicide Tourist,” the assisted suicide of Craig Ewert, from England. The wife of the retired professor, who had ALS, told The Times that her husband wanted “to show that a terminal illness does not have to result in a painful death.”

“Only individuals who are old, ill and disabled get encouragement, affirmation, and ‘assistance’ in killing themselves when they express such feelings,” says Stephen Drake of Not Dead Yet. “If suicide is really about autonomy, then maybe we shouldn’t interfere with anyone who is serious about killing themselves. Coverage such as this establishes a double standard – in which the lives of old, ill and disabled people are held to be of less value than the lives of younger, healthier, nondisabled individuals. That’s not autonomy, but something somewhat uglier.”

My thanks to Roxanne and New Mobility for keeping readers of the magazine informed of the latest developments in the euthanasia/assisted suicide debates. –Stephen Drake

More on Brignell Column From William Peace at Bad Cripple

Just today, William Peace at Bad Cripple wrote his own thoughts in regard to Victoria Brignell’s column on assisted suicide, which I responded to yesterday.

Peace takes on a different part of the essay by Brignell and provides a long analysis of some issues that triggered his own thought processes. Here’s the introduction:

What I want to address is the questions Brignell posed with regard to assisted suicide and social change. Brignell points out that social practices evolve quickly and wonders “Could we reach a point where it is regarded as normal for a tetraplegic [quadriplegia] person to commit suicide? And as the population ages and pressure on social care services grow, could the authorities regard legalising assisted death for severely disabled people as a convenient means of reducing the demand on an increasingly tight care budget? It seems unlikely such a dystopian vision will turn into reality in the near future”. Brignell’s assessment may be correct in the UK but I think we have already arrived at this dystopian vision in the United States and elsewhere.

That’s just the intro. There’s a lot more and it’s well worth anyone’s time to read – anyone who cares about these topics. –Stephen Drake

U.K.: Brignell Column on Disability and Assisted Suicide Misses Several Points

Last week, New Statesman, a U.K. based magazine covering current affairs, published an essay by disability columnist Victoria Brignell. Unfortunately, “Assisted Death,” indicates she shares a lot of confusion with the very public she’s trying to educate about disability rights and “assisted death:”

In recent years the media spotlight has fallen on a number of disabled individuals who have expressed a wish for an assisted death – people like Diane Pretty, Debbie Purdy and Craig Ewart (whose death provoked controversy when it was shown on national television). What the Daniel James differs is that he was not terminally ill. He was only 23 and if he had not killed himself, he might have lived a normal lifespan.

Daniel chose to take that deadly concoction of chemicals not because he wanted to avoid a long, painful and distressing death but because he simply didn’t want to carry on living.

It’s vital, when discussing assisted death, that we distinguish between those disabled people who are terminally ill and those whose disability is not life-threatening. The ethics involved are very different.

Brignell seems to think there’s a clear bright line here that should be obvious to everyone and that no on is trying to erase, if it actually exists. Perhaps it would be clearer to her if she had the benefit of our experience with Jack Kevorkian in the U.S. Several studies have documented that only a minority of the people who died at his hands were terminally ill. In spite of that documentation, there is a new wave of surprise on the parts of the public and the press when the information surfaces in the news again. In fact, most of Kevorkian’s body count consisted of people with chronic conditions and disabilities – and the nonterminal “clients” were more likely to be women. The muted – to put it kindly – tone of public outrage in reaction to the facilitation of Daniel James’s suicide by his own parents means that there is no real cause for optimism for more accurate and thoughtful analyses across the pond.

As we’ve pointed out before, the worldwide euthanasia movement doesn’t have an interest in limiting “eligibility” for euthanasia or assisted suicide to people who are “terminally ill,” but typically introduce legislation as a “door-opening” strategy. In fact, here in the U.S. the latest move – in New Hampshire – is an attempt to redefine “terminal condition” to encompass any “incurable” condition that will result in “premature death.”

According to the Foundation for Spinal Cord Injury Prevention, Care & Cure, having any degree of tetraplegia does, in fact, reduce one’s life-expectancy (see chart below):

Life Expectancy for Persons who survive at least 1 year post-injury
Age at Injury No SCl Motor Functional at any Level Para Low Tetra (C5-C8) High Tetra (C1-C4) Ventilator Dependent
at any Level
20 yrs 58.4 53.3 46.3 41.7 37.9 23.3
40 yrs 39.5 34.8 28.6 24.7 21.6 11.1
60 yrs 22.2 18.3 13.5 10.8 8.8 3.1

Brignell’s biggest failure in analysis occurs here, IMO:

An able-bodied person can take their own life without anyone else’s assistance but it is almost physically impossible for someone who is completely paralysed to die by suicide. If a tetraplegic person wants to end their life and society denies that person an assisted death then society is forcing that disabled person to go on living against their will.

This seems to undermine a disabled person’s independence – their right to make choices for themselves. So according to this argument, the professionals who helped Daniel to die were correct in supporting his right to self-determination. As Daniel James’s mother wrote so movingly: “Our son could not have been more loved… This was his right as a human being. Nobody but nobody should judge him or anyone else.”

These two paragraphs buy into some of the biggest lies/myths perpetrated by the euthanasia movement and others who argue for a “right” for assistance in suicides for people with disabilities.

The claim that “it is almost physically impossible for someone who is completely paralysed to die by suicide” is false. Several disability activists with quadriplegia have told me they can come up with a long list of ways they can commit suicide without assistance – and have shared some of them.

I won’t share them here. This isn’t a “how to do it” site.

What supporters of the so-called “right” of Daniel James and others with physical disabilities are calling for is access to a specific means to commit suicide. In fact, the controlled substances used by Dignitas or used in other instances of euthanasia or assisted suicide aren’t available to the general public – except through a licensed medical professional.

So this isn’t about the right to commit suicide, but commit it in a certain way – a way that is unavailable to the vast majority of nondisabled people.

I’ll digress for a moment to talk about the choices of two people who committed suicide by different means. Gonzo journalist Hunter S. Thompson took his own life using a gun in 2005. Thompson was well-known for his ability to obtain drugs – without a doctor – that are generally unavailable to more law-abiding citizens. A gun, though, was what he chose as a means of suicide. Daniel F. Gunther, one of the “Ashley X” physicians, committed suicide by asphyxiation in his garage. As a physician, he could presumably have used controlled substances to end his life.

This points up the largely ignored importance of talking about what the debate about “assisted suicide” is really about. Is it about access to suicide or access to a certain means to that end? (no pun intended)

Suppose, for example, that a person with quadriplegia wanted to end her life by hanging. Does that mean she is entitled to have someone set up the rope and noose, put it around her neck, and then strangle her with it?

Suppose someone with tetraplegia wants to use a gun. Is he entitled to have a chosen “friend” hold a gun to his head and pull the trigger.

Sound absurd? Not if the assisted suicide debate is really about suicide itself.

But it’s not about suicide, is it? It’s not about autonomy, either. If it was about autonomy, it assistance would be offered to anyone who wanted to commit suicide by whatever means he or she chose.

Maybe we should all try to figure out exactly what this debate is about. It sure doesn’t look like autonomy from where I sit.

But the first step to figuring out the debate is to reject some of the absurd slogans, mantras, myths and outright lies coming out of the euthanasia proponents – and reframe these issues in our own way and on our own terms. –Stephen Drake