Steven Salmon: Wisconsin budget cuts will hurt the disabled

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From today’s edition of the Wisconsin State Journal:

Two days before Gov. Scott Walker won election, a gigantic splash rippled across the lagoon of Lake Mendota. Bystanders ran to the lagoon, calling 911 on their cell phones. Seconds later fire trucks and emergency vehicles soared across Northport Drive, sirens blaring. As local television reporters appeared on the scene, the electric wheelchair dangled from the hook and ladder. Then divers brought up the dead man’s body.

The usual questions were asked: Why was he alone? Where was his care attendant? Then people forgot about the disabled man – it was just another tragic statistic that the news media and disabled organizations tried to hide from the public, especially the disabled community.

But this suicide demands attention to keep another tragedy from happening. My nonverbal friend’s suicide was due in part to the bad assisted care he received. Care workers didn’t come on time or at all, leaving him lying in a urine-soaked bed. One attendant fed him four grapes at a time, almost choking him. Some call for a job interview, then come late or don’t even show up.

I urge everyone to read the entire essay by Steven Salmon, because the warning he’s issuing applies to just about every state in the country – in which the amount and availability of community-based services people with disabilities need are being cut or are severely threatened, while insitutions remain relatively unscathed – as do the most wealthy in each state, who are mostly getting their taxes cut.

Salmon describes how insufficient existing systems are for disabled people who have the “strange” desire to work and live in the community.

Salmon finishes his essay with this:

These are tough economic times, but cutting Medicaid isn’t an answer. Putting the disabled in institutions would be a disgrace. Walker would never want to attend a funeral for a talented, educated, physically disabled person, caused by suicide. It’s the hardest thing to witness, especially when it’s avoidable.

Don’t cut Medicaid – lives are at stake!

I don’t know enough about Scott Walker to venture a guess about how he’d react to someone whose life got so lousy they were driven to suicidal despair – at least partly due to Medicaid cuts planned.

I do know that other players will offer a different kind of “help” for those who find their lives to awful to bear with precious supports taken away from them.

Last week, for example, this blog highlighted New Hampshire legislator Steve Vaillancourt, a Tea Party/Libertarian Republican.  Consistent with his view of the world, he has contempt for the “Nanny” government – we can guess that includes supports like Medicaid.  We also know that his libertarian response to people who are suicidal is that the government should – intervene in those cases, to make sure that a botched suicide doesn’t cost the state more money.

If that seems harsh, we’ve seen it play out before.  Disability activist and author Marta Russell wrote the following account in a scathing essay asking why “humanists” were so in love with Jack Kevorkian:

Is it humanistic to assist in the suicide of a disabled man who has been waiting for nine agonizing months for a wheelchair from his horrible HMO? That is what Kevorkian did to Matt Johnson. Matt’s wheelchair came the day after Kevorkian’s visit – one day too late to free him from his seemingly permanent bed-ridden state and the actual permanent state of death.

So be doubly concerned.  Not only will cutting fragile supports drive more people into isolation and even to suicidal despair, but the ever-opportunistic groups like Final Exit Network will be sure to offer their own “help” for the coming crisis.  They won’t offer help that people need to live better lives – they’ll just tell everyone what we (disabled people) really need is help to make it easier to commit suicide.

On another note, I’d planned on a different kind of entry today, but events demanded the two items that have been posted.  Look for some long-ish pieces to go up tomorrow and Friday.  –Stephen Drake

Edit: Forgot to give h/t to Lawrence Carter-Long.

Vermont: VPR Debate on Proposed “Death With Dignity” Legislation

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Yesterday – March 8, 2011 – Vermont Public Radio aired a debate of the current bill that would legalized physician-prescribed suicide.  The entire program is about 30 minutes long.  You can listen directly in MP3 format here.  You can also download the program in MP3 format off of this page (I couldn’t figure out how to provide a direct link to the download).

Here’s a brief excerpt printed on the main audio page:

Supporters call it “Death With Dignity” and opponents call it “Physician-Assisted Suicide.” For both sides, the debate over whether physicians should be able to help people die is emotional and contentious. And new legislation introduced last month in the Vermont House is bringing the issue back to the forefront. Already dvocacy organizations on both sides are coming out in force. Dr. Diana Barnard is a physician who for the past year and a half been has been practicing strictly home-based palliative care. She is also on the board of Patient Choices Vermont, which supports the legislation. And Ed Paquin is the President of the Vermont Coalition for Disability Rights, which is opposed to the bill. They have opposing views on how issues including personal choice, ethics, and a physician’s role relate to the question of whether doctors should be legally allowed to help patients die. 

There is also a longer print story of the debate that can be accessed here:

(Host) Vermont is once again facing a debate over whether terminally ill patients should have the right to end their own lives with help from a doctor.

VPR’s Samantha Fields has more:

(Fields) A bill was introduced in the House last month. Supporters call it “Death with Dignity” or “Right to Die” legislation… opponents call it “physician-assisted suicide.”

Diana Barnard is a physician who focuses on end-of-life palliative care, and who supports the bill. She says that it really comes down to patient choice and control.

(Barnard) “The important thing to stay focused on is the right of an individual to have decision making ability at a point in their lives when death is certain. Death is coming”
 
(Fields) But the Vermont Coalition for Disability Rights is opposed to the legislation. The group’s president is Ed Paquin . He says the bill would be bad public policy, and would send the wrong signal.

(Paquin) “The message to wider society that perhaps having someone toilet you, having your mobility impaired is a life without dignity, and it’s time to get out when that happens, it’s broader than the individual suffering.” 
 
(Fields) A bill similar to the one currently in the House was defeated in 2007. But advocates are more optimistic about its chances this year. Both House Speaker Shap Smith and Governor Peter Shumlin support the legislation.

Windsor Democrat Donna Sweaney  is one of the lead sponsors of the House bill.

(Donna Sweaney) “I think we have enough votes in the house to pass the bill. As I asked people to sign on with me, they would agree that this was something they supported”.
 
(Fields) The legislation is currently in the Human Services Committee.

House Speaker Shap Smith has said he will not bring the bill to the floor for a vote unless he’s sure it will pass. Sweaney says she believes that is likely to happen this session.  

I’m pleased to report that  Ed Paquin is just one of many Vermont disability rights activists actively engaged in the coalition to oppose the latest incarnation of this legislation.  –Stephen Drake

NH: More on Steve Vaillancourt, Libertarian/Tea Party and Incrementalist/Slippery Slope Strategies

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Some people might have figured that it was possible that Rep. Steve Vaillancourt might have been simply blowing off steam when he was quoted in the March 1st Union Leader as having said:

“If it were up to me, I would say anybody should be able to end their life,” he said snapping his fingers, “just like that.”

In my previous blog entry, I suggested he was “engaging in misinformation and misdirection,” since people end their lives every day in this country – literally thousands of people take their lives in the US every year without any outside help.

I stand corrected.  Vaillancourt really does seem to understand that many, many people take their own lives.  More importantly, he knows that many – most, actually – fail in the attempt. As explained below, when you get his rationale in full, it makes a certain kind of “fiscal” sense.

Vaillancourt felt it important to clarify and amplify his views on “death with dignity,” writing on the NH Insider blog on the same day as the Union Leader article:

Yes, I was animated when I testified before the Judiciary Committee on Rep. Chuck Weed’s “death with dignity” bill (HB513) yesterday.   In fact this is one area where liberal Democrats like Rep. Weed and libertarian-minded Republcans like me enthusiastically come together.

 As a Libertarian who believes in personal freedom and responsibility, I can think of no reason why governement should be able to tell you when you should end your life.  Rep Weed’s bill would allow doctor-assisted suicide similar to Oregon and Washington.  While I would prefer that government not get involved in death decisions at all (in other words, totally legalize suicides), this bill is a reasonable attempt to address medical ethics involved.

We should live up to New Hampshire’s “live free or die” motto, fully realizing that living free is only half of that slogan.  Freedom to die should be equally important to those of us who oppose nanny state government, who recoil at government intrusion into our lives (and our deaths).

But there’s a contradiction in a libertarian wanting “nanny state” government sanctions and medical intervention into the private choice to end your own life, which isn’t really a medical matter – and as a libertarian, I’m guessing he doesn’t support guaranteed health care in any case.

It turns out he has a reason.  As a libertarian, he’s very concerned about limiting the amount of (his) money the government spends supporting people, as he explains here:

The problem of course is that if I attempt to kill myself without the help of a doctor, I may botch up the effort.  I may leave myself in a maimed condition and live on at state expense.  That’s why the assist from doctors is important. (Emphasis added.)

I’m guessing he’s not a fan of the “too big to fail” concept that led to the huge bailout of the banks.  However, he does seem to be articulating a “too expensive to let them fail” concept here.

He’s right about the failed attempt, of course.  According to the 1999 Surgeon General’s Call to Action to Prevent Suicide, overall, “there are an estimated 16 attempted suicides for each completed suicide.”  And – yeah – a lot of those survivors might have no insurance and be in need of services that the government would need to pay for.

Obviously, the current bill he’s cosponsoring isn’t what Vaillancourt ultimately wants, and he says so:

Rep Weed’s bill notes that only terminally ill patients would be eligible.  It’s a step in the right direction of allowing individuals to control their own destiny.

When Vaillancourt says this nominally narrow bill “is a step in the right direction,” I feel it’s safe to say that Vaillancourt will be looking for opportunities to expand the scope of “eligibility” for assisted suicide.

That is what you call an “incrementalist” or “slippery slope” strategy.  In this instance, from Vaillancourt’s perspective, it would be using a “wedge issue” – “there are people with very unpleasant terminal illnesses who want help to end their lives early” to gain wide support for an initial step toward a final goal.

Vaillancourt could pursue his final goal more directly – introduce bills preventing law enforcement and health care professionals from interfering with someones suicide; forbidding health care providers to treat people who survive suicide attempts.  But those attempts wouldn’t get very far.  It’s more realistic to get everyone used to the massive change you want in small incremental steps.

There’s nothing new about “slippery slope” strategies – they’re used widely and by groups of all political stripes.  There’s a good overview and discussion of the “slippery slope” strategy at the site Political Strategy.

Remember – in the world of political struggle, don’t let anyone corner you with the idea that the “slippery slope” is nothing more than a logical fallacy.  It’s also an effective – and common – political strategy and it’s up us to redefine it.

I’d also advise folks to keep a sharp eye on this new crop of “Tea Party” elected officials.  They all tend to share the same combination of libertarian outlook and disdain for supporting people through tax-supported government dollars.  In other words, I doubt that Vaillancourt’s take on assisted suicide is unique among those who identify with the Tea Party.  –Stephen Drake

NH: After Hearing on Assisted Suicide Bill, Sponsor Says Bill is “DOA”

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Yesterday, February 28th, the NH House Judiciary Committee held a hearing on a “Death With Dignity” Bill.  The outcome was not to the sponsors’ liking.

From the Union Leader:

CONCORD – It should’ve been called the “Live Free or Die Free” bill, Rep. Charles Weed said of his bill to allow the terminally ill to end their suffering.

“Death with Dignity” was his initial title. The Keene Democrat said he was asked to change it to tamp down on any political combustibility. And a twist of the state motto was just too much. After Monday, you might want to call it: Dead on arrival.

That’s Weed’s prognosis, anyway.

The other sponsor was a libertarian-leaning (or falling) Republican:

Co-sponsor Steve Vaillancourt, R-Manchester, promised he would not go so quietly, at one point shouting at a member of the House Judiciary Committee holding a public hearing on the bill. He urged his colleagues to stick up for the state’s Libertarian tradition of limited government and personal liberty.

“If it were up to me, I would say anybody should be able to end their life,” he said snapping his fingers, “just like that.”

Vaillancourt is engaging in misinformation and misdirection here.  People can and do kill themselves – every day – “just like that.”  That’s not the same thing as saying that everyone who wants to kill themselves should be able to get medical assistance to do that – and that seems to be what Vaillancourt is implying here.  (BTW, this should be a cautionary note to folks who think that all those cost-cutting, libertarian Tea Party people who were elected to Congress are going to be allies in opposing legalized assisted suicide and/or euthanasia.)

Those testifying in person against the bill came from religious groups, prolife groups and hospice entities.  No NH disability activist was able to attend the hearing – between real-life scheduling conflicts and the barriers to affordable accessible transportation in that state, getting folks to an event can be a great challenge.

Nevertheless, NDY president and founder Diane Coleman submitted written testimony on behalf of NDY.  Here is an excerpt:

Disability concerns are focused on the systemic implications of adding assisted suicide to the list of “medical treatment options” offered to seriously ill and disabled people.  The disability rights movement has a long history of healthy skepticism toward medical professionals who are assisted suicide’s statutory gatekeepers.  Our skepticism has grown to outright distrust since the values of managed care have dominated the health care scene.  Anyone who asserts that money will not influence the treatment options offered to people, or that the impact of out-of-pocket costs on an individual’s family will not influence the individual’s feelings of being a burden, is at best unrealistic and at worst dishonest. 

Pro-assisted suicide advocates call it “choice” but, with or without the purported safeguards, the so-called “autonomy” of assisted suicide is not being offered to healthy, non-disabled people.  According to the U.S. Surgeon General, 16 of every 17 suicide attempts fail, and most don’t try again.  (U.S. Public Health Service, “The Surgeon General’s Call to Action to Prevent Suicide,” Washington, D.C.: U.S. Government Printing Office, 1999.)  Assisted suicide is not about parity in the opportunity for suicide.  It’s about a government and a health care system guaranteeing that certain suicides don’t fail.  That’s discrimination. 

Hopefully, for now, the NH legislature figures there are more important priorities to focus on right now.  In the meantime, please make sure that co-sponsor Steve Vaillancourt isn’t let anywhere near a suicide hotline.  He doesn’t sound like someone you want to get close to someone deciding whether or not they want to kill themselves.  –Stephen Drake

Milwaukee Magazine: NDY featured in profile of elderly couple who died through a suspected suicide pact

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Back in November last year, I was contacted by a reporter at Milwaukee Magazine in preparation for a feature story on a local elderly couple who had allegedly died through a “suicide pact.”  I succeeded in a few things during our conversation:

  • Made the point that if the death was a suicide pact, it was atypical of elderly homicide/suicides;’
  • Referred him to Donna J Cohen to discuss her research on elderly homicide/suicide cases;
  • Was able to document that assisted suicide supporters in this country want broader “eligibility” for assisted suicide than what is available in Oregon and Washington state.

The article was published in the March edition of the magazine earlier this week and is available online.  Those who are familiar with pieces that report on the (alleged) double suicides of a respected elderly couple will find what you generally expect – family and friends who saw it coming and who defend the action as brave or admirable.

But reporter Kurt Chandler found room to fit in some broader context in the story Tender is the Night.

The opening is typical of these pieces:

On that Saturday summer night, Daniel and Katherine Gute made the short drive from their River Hills home to the Milwaukee Country Club for an early dinner. They held hands walking into the restaurant and sat at a table near a window overlooking the Milwaukee River. They sipped chardonnay and shared a bowl of vichyssoise, a favorite soup of theirs, having a quiet, romantic evening.

But they must have known it was their last meal together.

It was July 17, 2010, just four days after their 53rd wedding anniversary.

The broader discussion on assisted suicide – and the players in the debate – is better than we generally get:

Physician-assisted suicide is only legal in three states. Oregon in 1997 became the first state to pass a law allowing residents who are terminally ill – certified that they have six months or less to live – to end their lives with lethal medications prescribed by a physician. A similar law was passed in Washington in 2008, and a state Supreme Court ruling made assisted suicide legal in Montana in 2009.

The issue is hotly contested. On one end of the spectrum, the Final Exit Network argues the Oregon and Washington laws are inadequate because only those who are terminally ill are allowed to receive lethal drugs. The 3,000-member group, an outgrowth of the Hemlock Society, believes people who are not terminal should also be permitted to end their lives.

“There are many illnesses, awful illnesses, with no time limit,” says Jerry Dincin, Final Exit’s president. “And you can suffer for years and years – Parkinson’s, Alzheimer’s, ALS, Huntington’s disease, strokes.”
Members of his group who wish to hasten their own deaths must provide a letter from their doctor corroborating their medical condition, Dincin says. With approval from a Final Exit Network committee, made up of three physicians, patients can request voluntary “exit guides” to advise them. Two guides will visit the patient’s home to discuss methods. At the patient’s request, the guides also can be present for the suicide. Dincin emphasizes that an exit guide is not allowed to purchase, operate or handle any equipment – pill bottles, syringes, helium tanks. Guides legally can attend a suicide as long as they don’t actively assist or participate.

Since 2004, between 200 and 250 people have died in the presence of an exit guide, Dincin says. “More than 50 percent of the people we have supported are religious. They rationalize their action by saying they believe in a loving God, and a loving God would understand.

“We feel very keenly this is a human right, that your life is your own,” he adds. “Given dire medical circumstances, there is no public interest in keeping you alive if you don’t want to be.”

On the other end of the spectrum is the group Not Dead Yet, operating within the Center for Disability Rights in Rochester, N.Y. The group was formed in 1996 after the acquittal of Dr. Jack Kevorkian, who facilitated the suicide of two nonterminal women with disabilities.

“We felt assisted suicide statutes, as they were being proposed by advocates, were targeted for old, ill and disabled persons,” says Stephen Drake, research analyst for the group. “Since then, what’s been put on the table has expanded dramatically.”

He cites a 2007 case in Arizona, where four exit guides were criminally charged after helping a 58-year-old woman kill herself with helium. The Phoenix woman suffered from chronic mental illness but was not terminally ill. Two of the guides pleaded guilty last year to facilitation to commit manslaughter.

To Drake, the right-to-die movement is heading down a slippery slope, pushing for assisted suicide of people who are nonterminal or physically unable to commit suicide on their own – including those with disabling diseases.

“When it comes to the euthanasia of children and adults unable to express a wish to die, I believe the goal for many is to have some sort of medical panel evaluate the request for killing the individual,” he says. 

The article also shares some doubts that Katherine Gute – who had alzheimer’s disease – could have had the cognitive capacity to consent to her death (through asphyxiation) and how that fits the larger context of elderly homicide/suicides:

An autopsy report released by Dr. Brian Peterson, Milwaukee County medical examiner, lists Dan Gute’s manner of death as “suicide.” Kitty’s death is classified as “undetermined.”

“It’s a hard one,” says Peterson. “If they agreed to do it together, it’s a tandem suicide. If someone’s demented, can they give consent, can they understand what they’re doing? In the world of forensic pathology, there are two equally valid possibilities, and we have no way to choose between the two.”

“If indeed she had the capacity to consent and sign, it’s a pact,” says Donna Cohen, a University of South Florida professor who has studied assisted suicide and suicide-homicides among the aged. “Suicide pacts are extremely rare. They account for less than one-half percent of all suicides” – just 150 of some 30,000 suicides annually in the U.S.

Cohen, however, questions the state of mind of the Gutes in their last days. “Even though they were strong-willed about living and dying arrangements, it’s quite possible they were depressed,” says Cohen, a former editor of the Journal of Mental Health and Aging. “The questions I would want answered in this situation: Were they getting the right help in dealing with depression? When men caregivers perceive there is nothing else they can do, [depression] could precipitate this act.”

We always wish there was more of our side represented in any coverage of these issues, but if more reporters exercised due diligence in the way Kurt Chandler did on this report, the coverage of these issues might be recognized as far more complex than they generally are.  –Stephen Drake