Thursday, May 19, 2011

Breaking News: Jack Kevorkian in Hospital

From the Huffington Post:

ROYAL OAK, Mich. -- A lawyer says assisted-suicide advocate Jack Kevorkian is in a Detroit-area hospital with pneumonia and kidney problems.

Mayer (MAY'-uhr) Morganroth says Kevorkian was reluctant but agreed to go to Beaumont Hospital on Wednesday night. He predicts Kevorkian will be there for several days.
Mr. Morganroth wanted to assure fans of Kevorkian that things will be OK, though.:

Kevorkian turns 83 next week. Morganroth says his health is not in grave danger but "it's not a good thing right now."
I wouldn't put great faith in any health assessment by Mr. Morganroth.  This is the same guy who filed appeals for Kevorkian's early release from prison four years in a row - and in each brief claimed that Kevorkian had "less than a year to live."

Here's how that tidbit was made public, even though it was promptly forgotten by the press and the public:

Like the boy who cried "wolf," Mayer Morganroth claimed - year after year - that Kevorkian had "less than a year to live" in his efforts to win an early release for his client. This was laid out and confirmed in an Associated Press story that appeared on December 14th of last year (link is no longer operational):
Some object to Kevorkian's upcoming release from prison
12/14/2006, 5:34 p.m. ET
By KATHY BARKS HOFFMAN
The Associated Press

(excerpt)
Not Dead Yet, a national disability rights group based in Forest Park, Ill., also said it was disappointed that Kevorkian would be released in June.

"We won't forget the struggling disabled people he preyed upon. And we won't be silent," the group said in a statement.

It added that it expected that the 78-year-old Kevorkian, after leaving prison, will show a "near-miraculous `recovery'" from his health problems, which include diabetes, hepatitis C, high blood pressure, hardening of the arteries in his brain and vertigo, according to his attorney.

"We were suspicious his health problems were greatly exaggerated when his lawyer filed appeals for four years in a row claiming Kevorkian was essentially on the brink of death," the group said.

***

Granholm spokeswoman Liz Boyd said all requests to have sentences commuted for health reasons must first go to the Corrections Department and then to the parole board, which recommends to the governor whether the request should be honored.

Boyd said Morganroth already has made four such requests, in 2003, 2004, 2005 and earlier this year."In each instance he indicated that Dr. Jack Kevorkian had less than a year to live," she said.
So don't put any faith in what Morganroth has to say about Kevorkian's health now.  --Stephen Drake

Smart Ass Cripple (blog): It's All Over But the Bingo (Satire)

The Smart Ass Cripple Blog is written by friend, disability activist, humorist, playwright, and essayist Mike Ervin. (and I might have left a couple items off the list of hats he wears - and most of those hats are garishly colored - several hold one or more beers with straws.)

Mike Ervin's name is probably familiar to regular readers of this blog - his name is attached to a significant amount of the posts tagged "humor" or "satire."  There's even more of his stuff to be found in our archived collection of "humor" articles.

Mike's (or Smart Ass Cripple's) latest blog post is a send-up of those familiar stories about the unintended torment that can be inflicted on an incapacitated loved one and the guilt the decisionmaker has to live with - and all because the incapacitated relative never made out an advanced directive:

It's All Over But the Bingo

Excerpt:

Today’s lecture is on the importance of advance directives. What would you do if you were suddenly in a position where you were unable to make medical decisions for yourself? It’s vitally important that you think about this right away, while you still can. Write down specific instructions in an advance directive for your loved ones who will be your surrogate decision makers to follow. This will save everyone a lot of anguish.

Believe me, I know. I made a well-meaning but profoundly ill-advised medical decision on behalf of my aunt and now she must live with the consequences. Two years ago my aunt was hospitalized due to a sudden, unexplained but temporary wave of delirium. Within two months she was back home with her wits restored intact. But she remembered little of what went on those two months. As I pieced it all together for her- - the tests, the treatments, the surgery-- I mentioned that one day when she was in the nursing home for rehab, she played bingo. She looked at me with horror. “Bingo? ME?”
 It gets better - and worth the read and needed laugh.  Read the rest of "It's All Over But the Bingo" and bookmark Smart Ass Cripple so you can find it when you want or need a laugh in a world that can seem joyless at time.  --Stephen Drake

Monday, May 16, 2011

Daniel J Vance - "Drake Isn't Dead Yet"

It's official - I'm Not Dead Yet.  That's what the title of the column by Daniel J Vance says.  Vance writes a column that is published by a number of papers around the country - and he writes on disability issues.

He interviewed me last week to get an update on NDY and some of the life and death issues facing the disability community.  We talked for quite awhile.  Not all of our discussion made it into the column, but he covered a lot of ground in a small amount of space.  I'll share the first two paragraphs from his current column, Drake Isn't Dead Yet.  This link is to the Rocklin & Roseville Today.  I'll add other I come across as they become available.

From the column:

When infant Stephen Drake was being born sideways breech in a New York hospital in the mid-'50s, a doctor wrongly used forceps to pull him from the womb. The resulting brain injury gave Drake hydrocephalus, which would require a lifelong brain shunt to manage. He also would have permanent challenges with nonverbal learning, tremors, body movement, and coordination.

Now Drake works for Not Dead Yet of Rochester, New York. In part, it's a nonprofit group for people with disabilities opposed to assisted suicide laws.
If you're interested in the rest of the column - and I hope anyone checking here is - please go to the link (which I'll add one more time below) to read the whole thing.  Newspapers keep track of how much internet traffic individual columns get and it's worthwhile to make sure we let them know that there are readers who have an interest in disability issues.

Please read the rest of Drake Isn't Dead Yet here.

Tuesday, May 10, 2011

Texas: Supporters of Texas "Futile Care" Law Continue to Maintain the Status Quo, Preventing Change

On Sunday (May 8, 2011), the Austin American-Statesman published an update of sorts on the continuing stalemate over the Texas "futile care statute," which translates as a "win" for supporters of the status quo.

It's a fascinating article - for many reasons.  But perhaps the most fascinating are the many contradictions contained in the article - but don't get recognized as contradictions.

Here's an excerpt from "Sensitive topic of futile medical care faces long road in Legislature" by Chuck Lindell:

For the fourth consecutive session, Texas legislators are struggling with the delicate issue of how and when doctors can allow patients to die by withholding life-sustaining treatment against the wishes of family members. 

But, a few paragraphs down, the law is described this way:

Texas' "futile medical care" law was enacted in 1999 and is unique in the nation for its efforts to protect doctors and hospitals from wrongful death lawsuits while trying to balance patient and family rights, legal experts say.
How do you get from the first sentence - which accurately states that doctors can "allow" patients to die through treatment withdrawal over family objections - to saying the law makes an effort to "balance patient and family rights"? 

How's this for "balance"?  Briefly mentioned late in this article is the fact that the current statute says that only two days notice is required to alert families about the ethics meeting where withdrawing treatment will be put forward.  In practice, that's led to at least one phone call to me - when we were back in Illinois from a man whose sister-in-law was to be the subject of one of these ethics meetings.  His message: We got a call yesterday that they are gonna have this meeting tomorrow

Anyone who is familiar with professional panel knows what is behind this kind of maneuver - have completely unprepared family members be overwhelmed in numbers and expertise by a "steamroller" masquerading as some kind of fair hearing.  In the case I mentioned, I was able to hook this family up with an advocate who could attend the meeting.  The gentleman called me the next week to say that the whole tune of the committee changed when they brought an outside advocate in.  (I think my remark was that "ethics committees are like vampires - they don't like the light.")

The author states that "end-of-life cases can also be stressful for doctors," and yet is followed by something very different shortly after in a discussion of one legislator's efforts to get the current 10-day limit (treat for ten days followed by withdrawal of treatment or transfer to a different facility or setting).:


This session, as in the 2009 session, debate over the state's medical futility law is being led by Rep. Bryan Hughes, R-Mineola, who again filed a bill that would require hospitals to continue treatment until a family finds an alternate caregiver, no matter how long it takes.

Known as "treatment until transfer," the policy would answer one of the law's most glaring problems — it doesn't specify that patients must have a terminal condition before doctors can halt care — by requiring family-ordered care be given to all patients, Hughes said.(Emphasis added.)
If  the patient doesn't have to have a "terminal condition" doesn't that beg the question of just what the heck is meant by "end of life"?  Does it mean one or more things to doctors and something entirely different to families?  Does it mean that a person is dying?  Does it mean the person's life is being ended? Both? Either?

As interesting as these aspects of the article are, it looks like the main purpose was to introduce to new public relations players for supporting the status quo and opposing the rights of families through "treatment til transfer."

Unlike other articles, in which the main supporters quoted have been ethicists, physicians or hospital representatives, the main defenders of the current "futile care statute" are two allegedly "pro-life" organizations.:

"Such a policy is not in the best interest of patients because it only prolongs patient suffering and artificially delays death with no real benefit," said Jennifer Allmon with the Texas Catholic Conference.

"A natural death with dignity is part of our teaching. Aggressive medical treatment interferes with God calling a patient home, and that is not our role," she added.
I wish I could say I was surprised by this, but quite frankly the Catholic Church has been all over the board on "right to die" issues from Larry McAfee to Terri Schiavo.

Also defending the "futile care" statute is the Texas Alliance for Life.  I've been suspecting that some of the larger "family values" organizations that put fiscal conservativism on as high a plane as other issues might start to fall this way.  I mean, how long can you rail against universal health care and yet fight "futile care" decisions, which typically involve fairly involved and expensive healthcare?   Texas Alliance for Life has made its choice, as you can see from remarks Joe Pojman, representing the organization:


Texas Alliance for Life is opposed because the policy would ignore the ethical integrity and judgment of doctors and caregivers, Pojman said.

"I have had numerous pro-life physicians come to me saying, 'Please don't let the Legislature require that we do everything, all the time, that families want, because that would be doing harm, too,' " he said.
That first sentence is crap.  Just how would "treatment until transfer" ignore the ethical integrity and judgment of caregivers?  Unless of course, he's talking about medical caregivers - and he's just ignoring what families think is best.  And since when does his organization stand behind the concept of the ethical integrity and judgment of doctors? It's certainly not evident when it comes to women's reproductive medical care.

To be fair, there are plenty of Democrats and so-called "progressives" supporting the status quo on "futility" decisions.  But most of them also support the idea of universal access to healthcare.  It looks like at least some on the Right want to gives us the worst of all worlds.
 

UK: Poll shows disabled people's fear over assisted suicide

Scope is a charity (or what we would call "non-profit" in the US) that provides services for people with disabilities, and also engages in advocacy - the organization's primary focus in on people with cerebral palsy.  (This is what I was able to gather from the website - if I've gotten it wrong, please write me a note and I'll correct it.)

Yesterday - May 9 - Scope issued a press bulletin highlighting the results of a survey of disabled people the organization commissioned.  Below is the bulk of the content of the press bulletin, "Poll shows disabled people's fears over assisted suicide":


Findings from a new Scope commissioned ComRes survey of disabled people also reveals some 56% feel the legalisation of assisted suicide would be detrimental to the way that disabled people are viewed by society as a whole.

The news comes as the BBC announced that it is to screen a documentary where novelist Sir Terry Pratchett, a supporter of euthanasia, follows a man as he travels to Swiss clinic Dignitas to end his life.

Meanwhile actor Sir Patrick Stewart has thrown his weight behind the Dignity in Dying campaign. On the other side of the debate Care Not Killing has slammed the BBC as a “cheerleader for assisted suicide”.

Assisted suicide is the act of helping someone else to end their life. It remains illegal in the UK, but in recent years there have been calls to ‘clarify’ or change the law.

A commission on assisted dying has been set up to gather evidence on the issue – but it is not an official Government commission and there have been questions raised about its impartiality.

At the same time, high-profile members of the legal and medical profession have waded into the debate.

Scope commissioned the poll of disabled people in a bid to get behind the headlines and make sure disabled people’s views and opinions were heard amid the increasingly polarised debate.

Richard Hawkes, Chief Executive of disability charity Scope, said: “Assisted suicide is a complex and emotional issue, and there are loud and passionate voices on both sides of the debate. But while high-profile lawyers, doctors and celebrities such as Terry Pratchett and Sir Patrick Stewart grab the headlines, the views of the thousands of ordinary disabled people who could be affected by this issue are rarely listened to.

“Our survey findings confirm that concerns about legalising assisted suicide are not just held by a minority, but by a substantial majority of those this law would affect.

“Disabled people are already worried about people assuming their life isn't worth living or seeing them as a burden, and are genuinely concerned that a change in the law could increase pressure on them to end their life.
You can download a pdf copy of the survey here.

Edit to add: from tigrlily AKA Amy Hasbrouck: On the Scope site, the presentation of the link to the press release gives the most important figure which is not in the press release, that 70% of PWDs surveyed think a law legalizing assisted suicide would put pressure on people with disabilities to end their lives. That should be the lede of the press release.

Good Catch, Amy.  Thanks!  --Stephen Drake

Monday, May 9, 2011

Letter: Gutting Medicare Will Create Need For "Death Panels"

It seems like only last week that I was writing that cuts to health care services that millions of Americans depend on would result in people with disabilities of all ages asking for help in killing themselves as they faced increased impoverishment accompanied with a withdrawal of supports that they rely on.

Oh - it was last week that I wrote something along those lines.

It looks like others are thinking along those lines as well.

Yesterday's (May 8, 2011) edition of the Concord Monitor published a letter by a concerned citizen named Michael Evans titled "Gutting Medicare.":

Across the country, people are analyzing the Paul Ryan budget plan, including changes that the House passed - with the help of the Reps. Charlie Bass and Frank Guinta - to the 45-year-old program called Medicare, the health plan for those 65 years and older guaranteeing reasonable health care through the end of life.

The voucher plan will change things dramatically and will cost seniors billions more in health care expenses so that millionaires and billionaires can be given more tax-cuts, even though the evidence shows that giving tax cuts to these people does not generate new jobs or new investment in the USA, no matter how often the Republicans claim they do. China and India are doing well though.

The Ryan/Bass/Guinta vote to cut the American senior health care system will force many to make difficult choices. One thing that has not been mentioned in all this talk, and which will be desirable if this goes through, is a law that gives seniors the right to euthanasia. Many will be forced to make this choice as their money runs out and their homes are lost. The Ryan/Bass/Guinta Medicare voucher insurance system fails in its coverage of medical care in the last years of a citizen's life. Dignity in death is as important as tax-cuts for billionaires.

Sarah Palin opened our eyes to death panels. The Ryan/Bass/Guinta plan will create the need for death panels. It should therefore include a euthanasia option because, as we are told by Republicans, choice is an American value.
To be honest, I think that this letter-writer isn't a serious euthanasia proponent, but merely trying to make a strong point about the consequences of the Ryan Medicare Plan - and which also applies to proposals regarding Medicaid that are being discussed right now as well.

But even if Mr. Evans isn't serious, there will be serious proposals that will come; the pro-euthanasia movement is adept at seizing opportunities.  And it will be all too easy for them to sound like a genuinely compassionate voice.  I can hear the pitch now:

"The Conservatives have torn your safety net to shreds.  You've used up your life savings and sold your home.  There's nothing left for medical care or decent housing.  The least you deserve is to die on your own terms."
And the truth is, I'll blame Eric Cantor, Paul Ryan and their "Ayn Rand wannabe" Congressional supporters at least as much as I'll blame the pro-euthanasia groups for this sales pitch.

Thursday, May 5, 2011

Candor From Eric Cantor - Government Healthcare Rationing Bad, But OK if Private Sector Does It

I've long suspected that many - maybe most - of the Congressional conservatives posturing about "Obamacare" and decrying hypothetical healthcare rationing don't really object to "rationing" at all - they just object to the government setting standards and limits that apply to everyone.  As most of the people I deal with on a daily basis are well aware, private health insurance already rations healthcare, and the cheaper your plan is, the more your healthcare is rationed.

For the most part, conservatives have been careful to avoid saying that they're OK with "free market" rationing - rationing that is determined by how much you're able to pay for private insurance.

House Majority Leader Eric Cantor - in a rare (for almost any politician) honest moment, made his true feelings on "rationing" very clear, as first reported on The Hill:

House Majority Leader Eric Cantor (R-Va.) said Tuesday that private healthcare plans ration care for profit but that consumers should be free to buy whatever coverage they can afford rather than depend on government rationing.

In remarks to the College of American Pathologists, Cantor warned that Democrats' healthcare reform law mandates benefits that are too generous and will bankrupt the country as the government ends up having to offer ever increasing subsidies. That can only lead to government rationing, he said.

"That doesn't mean those kinds of decisions aren't being made now by the private sector," Cantor added, "because they are."
Even that last statement by Cantor is generally more than conservatives are willing to admit.  In and of itself, the statement wouldn't be that important.  IMO, it's what he said next that we should all take note of - and make sure that this gets included in any discussion of  healthcare rationing:


Cantor appeared to go further than Republicans have in the past by acknowledging that not all patients are certain to get optimal healthcare under a system of private insurance.

"I think that the fundamental nature of our system of third-party payer is the problem," he said. Patients, he added, too often are left with "no decision about what they want and what they can afford."

Later, Cantor said Republicans want a safety net for people who can't afford care but that "we're not for everyone having the same outcome guaranteed." (Emphasis added.)
Let's put that last bit into plain English.  What Cantor is saying here is that he and his colleagues are for people having different "outcomes" regarding their access to healthcare, with affluent people having good outcomes and middle class and below having pretty crappy ones.

In other words, if you've been thinking that the Republican proposals on healthcare are going to result in much poorer access to healthcare, Eric Cantor just told you that you are not paranoid at all.

This will hit the population of people with disabilities especially hard.  We tend to need more from the healthcare system and earn a lot less than the general population.  Here's an excerpt from a report on Poverty in the United States for 2009, prepared for "members and committees of Congress":

In 2009, persons who had a work disability  represented 10.6% of the 16-64 year old population, and 23.5% of the poor population within this age range. Among those with a severe work disability, 33.5% were poor, compared to 15.2% of those with a less severe disability and 11.2% who reported having no work-related disability.
This, of course, underestimates the financial hardships faced by people with disabilities, who often have significant expenses related to our disabilities that aren't covered by any insurance or government program.

But I expect that people can get the idea here.  Those with significant disabilities and health conditions have lower incomes and won't be able to afford insurance that provides a great deal of healthcare.  Affluent people, like Eric Cantor (whose assets are in the millions), will be able to get the "cadillac plans."

In real terms, that means that people of modest means or less won't be able to afford treatment for cancer, or surgery for heart conditions or any of a myriad of other health issues that can give us many added and enjoyable years.  Those will only be for the Eric Cantors who can afford the best insurance and associated deductibles.

On the bright side (sarcasm alert), it should put an end to "futile care" disputes.  Very few people will have insurance that would cover the type of intensive treatment usually at the center of those disputes.  My guess is that medical professionals and facilities will swallow their principles and tolerate those few affluent folks who insist on "futile" care.

I know that Republicans and conservatives hate the term, but this sounds an awful lot like "class warfare" to me.  But I guess it would be rude of me to call it that, wouldn't it?  --Stephen Drake

Wednesday, May 4, 2011

ADAPT in DC This Week

This week, ADAPT, the national grassroots disability rights group, has been in Washington, DC.  Some 500 members of ADAPT - most of whom have significant disabilities - are there to let Congress know that this group of stakeholders knows exactly what's at stake with current budget proposals, especially the cynical and draconian budget proposal being pushed by Paul Ryan.

So why are we writing about it here?

First and foremost, NDY is a disability rights group - and without ADAPT's example and longstanding leadership on disability rights issues, NDY might not exist at all.  Second, NDY's concerns aren't limited to opposing legalization of assisted suicide and euthanasia.  We oppose any policies or practices that threaten the lives of people with disabilities.  And make no mistake - the proposed cuts to Medicaid and Medicare - under the laughable guise of "shared sacrifice" represents a big threat to the lives and welfare of people with disabilities of all ages.

I guess the idea of cutting off people's supports for employment and living at home are more palatable than hypothetical "death panels" for some people.  The idea that people can be forced to be warehoused and quietly die in institutions as those supports are withdrawn can make the body count harder to ignore.

Enough from me, though.  Here's some info on what ADAPT has been doing this week, including today:

Press Releases:

Press Coverage:

Remember - early deaths through withdrawal of life-sustaining supports and healthcare is every bit as much a government-sponsored "backdoor euthanasia" plan as any rationing plan you could come up with.  It's also 100% predictable that, faced with being forced to living in institutions or living without support or treatment in the community, there will be a big increase in people with disabilities of all ages asking for euthanasia or assisted suicide as a more "humane" option.  People who want to yank supports from the old, ill, poor and disabled will bear responsibility for that when it starts to happen.  --Stephen Drake