If You’re Not Conscious, You’re Dead

Over the last few days the media have been marveling at the story of Belgian Rom Houben. In 1983, at age 20, Rom was severely injured in a car accident. He was diagnosed as being in a persistent non-responsive state (derogatorily often referred to as a persistent vegetative state).

Doctors using the standard diagnostic protocols reconfirmed Rom’s diagnosis several times over the years. Medical opinion was that he was severely brain damaged and permanently unconscious.

Doctors urged that his nutrition and hydration be removed so that he could die.

Thankfully, Rom’s mom refused.

For 23 years.

Then, enter Dr. Steven Laureys, who used state-of-the art diagnostic technology (unavailable until very recently) to examine Rom’s brain function.

Surprise, surprise.

Rom’s brain function was almost normal.

Bigger surprise: Rom was conscious.

He had been conscious for every one of those for those 23 long years, but was physically completely unable to move to tell anyone (he can’t even cry).

Using a fairly low-tech communication board and the tiniest movement of one finger, he’s now connected to his loved ones and the world.

Much of the media, and many bioethicists, are falling over themselves to spin this as the rarest of events.

Nope – there are hundreds of similar cases reported and validated worldwide.

Here’s the chilling part (after you get over trying to imagine what it’s like to be able to hear everything going on around you for 23 years but can’t let anyone know):

Bioethics is well on the way to redefining what death is. If some get their way, Rom would have most decidedly been pronounced ”dead” after his initial diagnosis years ago because others would have decided that (a) Rom had no quality of life and (b) because keeping people like Rom alive is futile, his organs could have been harvested for transplantation.

Making lemonade out of lemons, so to speak.

Imagine the unspeakable horror of being conscious and being starved and dehydrated to death, or euthanized for your organs.

No doubt in my mind that it’s already happened – repeatedly.

I’m also left with an even more heartrending question:

What might have been if Terri's husband had allowed Dr. Laureys to examine Terri Schiavo?

First They Came for the Mammograms….

There’s been a great deal of consternation over the last few days about the US Preventive Services Task Force recommending new guidelines for breast cancer screening and evaluation. Essentially, the task force recommends that routine screening begin at age 50 and is probably statistically useless after 75 or so. They further suggested that breast self-examination is so unreliable that women shouldn’t bother.

The history of when to begin screening women for breast cancer has a long history, as noted by ABC News. The guidelines have shifted over the years depending on what the latest studies showed.

It’s also important to understand that conflicting findings are very common in all forms of research and often leave the public confused or increasingly unwilling to believe in the accuracy of any research findings at all.

The task force’s report, however, concerns me for two other reasons.

First, the recommendations are based on statistical significance. All that means is that across all women, the most likely age for getting breast cancer is around 50 or older. Also, across all women, screening after 75 is not recommended because, statistically, they are near the end of their lives anyway.

See the shift? Breast cancer intervention based on probability, not individual medical needs.

Second, the recommendations will inevitably lead insurance companies to adopt the guidelines, which are obviously in their favor, because they can justify not paying for mammograms for women younger than 50 or older than 75. And if insurance companies know anything at all, it’s about probability and statistics.

Which brings us to rationing. The US Senate will debate its healthcare monstrosity tomorrow. Aside from all the other spending-into-oblivion by the current administration, the money to be spent in this bill will inevitably result in needed medical care far, far outstripping the resources to pay for it.

Decisions will have to be made. Some will get breast cancer screening, others will not. Guess what this will mean for your 76 year-old mother?

But the Obama administration didn’t wait for the prestigious semi-independent US Preventive Service Task Force. They have already set up an official government mechanism for using research to justify rationing: The Federal Coordinating Council for Comparative Effectiveness Research Membership.

A whole new bureaucracy to tell us what care we may or may not get by telling us that the “research” has made it so.

The government giveth, the government taketh away.

Death by Following Orders

Law enforcement types are well aware of the phenomenon called “Death by Cop.” Death by Cop is a way for some disturbed people to commit suicide without having to do the deed themselves. Do something threatening and dangerous in front of officers with their weapons drawn, and off you go.

I think we need a new term: Death by Following Orders.

Read on.

Two years ago, 26 year-old Kerrie Wooltorton killed herself by drinking auto antifreeze mixed with soda. By most accounts Kerrie had severe psychological problems of depression and suicidal ideation. As best anyone can piece together, it was mostly related to a medical condition that meant she could not have children. She had tried to commit suicide before but had always been revived by hospitals and doctors who got to her in time.

But Kerrie was determined to die – if only she could stop herself from getting saved. So Kerrie figured out how to do Death by Following Orders.

Here’s how she did it:

Kerrie knew that for the last several years the UK has been immersed in the assisted suicide and euthanasia debate. She surely watched as the pro-death lobby chipped away at the age-old social taboo of assisted suicide and euthanasia.

Kerrie also knew that in 2005 the UK’s Mental Capacity Act had introduced living wills (advanced directives) whereby those with terminal illnesses, as long as they were of right mind, could legally decline any or all future medical treatment. She also knew that if the directive was valid, its conditions had to be respected by all medical personnel under penalty of civil prosecution or even criminal charges.

Kerrie, in her psychological and emotional turmoil, got desperately and horribly creative. She was determined to kill herself but she didn’t want to suffer and she didn’t want to die alone.

So, three days before her death, she wrote out her advance directive that should she be admitted to a hospital for any reason, she would (legally) refuse all treatment.

The die was cast.

On September 18^th, 2007, Kerrie drank the antifreeze and then called an ambulance. At the hospital she presented her advance directive to the staff. As the Telegraph noted:

The will said that if she called for an ambulance it was not because she wanted life-saving treatment but because she did not want to die in her flat alone or in pain.

She died the following day.

Last week an inquest ruled that the doctors and hospital had acted exactly as the law intended in not treating Kerrie because had they done so, they would have been committing an illegal act. Here’s Coroner William Armstrong’s cold observation:

She had capacity to consent to treatment which, it is more likely than not, would have prevented her death. She refused such treatment in full knowledge of the consequences and died as a result.

Kerrie followed the rules.

The hospital followed the rules.

The doctors followed the rules.

The law ordered that Kerrie should die.

Kerrie knew that.

The hospital knew that.

The doctors knew that.

Tragically, Kerrie got everything she wanted.

She died.

She didn’t die alone.

She didn’t die in pain.

Death by Following Orders, indeed.

Death Panels: Can we Please be More Civil?

Sarah Palin’s coining of the term “death panels” stirred heated reactions from promulgators of the President’s healthcare proposals. However, what’s important about Palin’s term is not so much the actual wording, but the concept, something completely lost on the pro-Obamacare folks.

And the concept is very real.

Here’s why: We have finite medical resources so we have to make decisions about how those resources should be allocated. We either provide those resources to all people who need them, meaning that we’ll run out of resources before we’ve helped everyone, or we will need to decide who gets the resources and who doesn’t.

So, the question becomes: Who will make the decision? For ObamaCare, there’s absolutely no doubt that it will be a government entity if healthcare, or big chunks of it, becomes a government enterprise. Increasingly, doctors will be told what treatments they will be able to prescribe because the government will control all or most healthcare resources.

And what doctors will be told will be according to cold statistics. Some people will be worth the resources, others will not, plain and simple. The government will decide whether you are worth the treatment or whether others would benefit from the treatment more than you.

If others would benefit more than you (younger, healthier, more years of life than fewer), you lose.

Think this is far-fetched? It’s already in place, signed into law last February. The entity, grandly and chillingly Orwellian, is the Federal Coordinating Council for Comparative Effectiveness Research Membership.

What will this fine entity do? I quote from the official Obama Administration website.

What the Government says:

Authorized by the American Recovery and Reinvestment Act (ARRA), the new Council will help coordinate research and guide investments in comparative effectiveness research funded by the Recovery Act.

What the Government means: The government will determine, via “research” what is effective and what is not. Guess what? It’s not very effective to provide a hip replacement for a 100-year old woman, as the President has already admitted.

What the Government says:

Comparative effectiveness research can improve care for all Americans and is an important element of President Obama’s health reform plan,” said HHS Spokeswoman Jenny Backus.

What the Government means: “Improving care” will also include things already defined as medical “care,” like withdrawing food and water from severely disabled patients. See, in this twisted world, starving and dehydrating people to death is consider “care.”

What the Government says:

Comparative effectiveness research provides information on the relative strengths and weakness of various medical interventions. Such research will give clinicians and patient’s valid information to make decisions that will improve the performance of the U.S. health care system.

What the Government means: A medical intervention will be strong when given to someone who will get healthier and who has potential for many years of productive life. That same medical intervention will be considered weak for people who may not get healthier and who perhaps don’t have many years of their life still to live.

Long story short (see Ezekiel Emanuel, who’s a member of this Government entity), the lion’s share of treatment will go to those between mid-late adolescence and 40 year-olds, because these are the people most likely to be able to have “a good quality if life” after treatment.

So, in the interests of Government propaganda, I’ll reinvent the term “death panels” which seems to be so offensive to the pro-Obamacare crowd.

Instead of “death panels” let’s call them Research-Based Investments for Healthier Living.

That way, the Government will send many to their deaths without the pro-ObamaCare apparatchiks getting too offended.

President Obama’s Pro-Death Propaganda Machine: I’m Not Impressed

Several weeks ago, when a White House website overtly called for turning people in if they had “fishy” ideas about what the President was proposing about healthcare (read: your disagreement will be noted, officially, by the government) I spent a lot of energy restraining myself from blogging here to say something like this:

Mr. President: Given that Disability Matters is all over the web, one of your sycophants may well have turned me in for my “fishy” ideas.

If not, I’m here to tell you that I admit, confess, and am willing to sign a public confession (to be released to state media, of course, and where I will stipulate that I was not coerced) that I have “fishy” ideas about your healthcare proposals. Ahead of the signed confession, I have publically so confessed, and I consider it a badge of honor that as of this notification, I am on your government “Fishy List.”

Knocks on the door in the dead of night are half expected.

Bring it on.

Here’s why, Mr. President. I grew up as a privileged white person in apartheid South Africa. I was raised as an English-speaking minority within the white minority. I was raised in the understanding that apartheid was evil, but that there really wasn’t much that could be done, on an individual level, to change it.

As a college student, I disagreed.

I spoke up.

It cost me.

The apartheid regime’s security police followed me for years. They rode by and took my photo. They opened my mail. Thugs all. Somewhere in the dusty vaults of the previous South African regime there is a fat folder with this label: “Mostert, Mark P., Fishy Ideas.”

So, Mr. President, I understand propaganda and state coercion. I believe we have seen it in the healthcare debate.

We’ve seen it in the just-reported coercion of the National Endowment for the Arts commandeered to strong-arm the arts for your healthcare agenda.

And, Mr. President, be aware that there are many of us, the Fishy Family, who understand that in the House bill, H.R. 3200 the forces of death, aka the former Hemlock Society, and (no aka) some members of Congress who never saw an assisted suicide they didn’t like, are preening and chattering about how they helped write the parts of the bill endorsing killing, and, dare I say (gasp) death panels.

I understand in this new season of change and hope that the change is a shadowy pro-death process whose authors cannot contain their glee at what they might accomplish.

And that hope, Mr. President, leans precariously toward the chilling idea that our most vulnerable, our elderly, sick, veterans, and disabled, will be disposed of because, after all, (as the former Hemlock Society, and members of your party in Congress would say) they don’t have a good quality of life.

The Government giveth. The Government taketh away.

Terri Schiavo’s Father – In Memoriam

I only met Bob Schindler Sr. twice. He could not have been nicer.

The first time was at a conference where I turned up determined to help out against the unspeakable evil of euthanasia and assisted suicide.

I was there because, like many of us, I had watched Bob’s beloved daughter, Terri, starved and dehydrated to death at the behest of a black-robed executioner, Florida’s Judge Greer.

After checking in, I walked around the hotel to see if there was anyone I knew. Of course, I recognized Bob Sr. as he left the building for a few minutes of quiet outside. I was compelled to follow him, and, in some small, very innocuous way, to express my condolences.

His face was weary, lined, tired. His shoulders slouched.

A heartbroken man.

I offered my deep condolences, and the reassurance that Terri didn’t die in vain.

He was most gracious and appreciative.

As I left him, I could not help but wonder whether my empathy was a curse or blessing.

Terri was murdered. Legally.

What else is there to say??

The next time I saw Bob was at another convention. As these things go, he, along with Mary, his devoted wife, was minding a table in memory of Terri.

As before, I expressed my feelings. Again, a warm graciousness, appreciation, and caring.

I’ve since come to know Bobby and Suzanne, two of the most ardent defenders of humanity that you will ever find.

I am blessed with two beautiful children, and three grandchildren. Often as I play with them, laugh at their wonderment in the world, and shake my head indulgently at childhood, I can’t but help think of Terri and the dreams destroyed.

Mr. Schindler, thank you for defending your family to the last moment.

Never, ever, think you were ineffective.

While the hooded black capes crumble to dust, your Terri, and your fatherly love for her, will not crumble.

Indeed, they will go from strength to strength, because, in the end, earthly death has no sting, paltry earthly graves no victory.

Life Not Worth Living? The Obama Administration Thinks So – at Least for Veterans

We have a rule in our family: Whenever we see members of the US military, we stop, shake their hand, and thank them for their service. As a naturalized citizen, I add my own piece: The United States has offered me immense opportunity that even as a (then) privileged white South African, I could never have had, and that it is the service of our military that has kept me safe and free to pursue the American Dream.

However, it’s getting difficult to keep thinking that our government actually appreciates our veterans just like my family does, after reading the Veteran’s Administration’s (VA) end-of-life booklet, “Your life, Your Choices.”

The document, written by the Clinton Administration, was later withdrawn by the Bush Administration, but it’s been in play since being reintroduced by the Obama Administration this past February.

With some parts of the media beginning to sniff around the document, the Obama Administration, trying to head off another PR disaster, today hastily added a note to the booklet’s webpage (the page has since disappeared altogether):

The document is currently undergoing revision for release in VA. The revised version will be available soon.

Nonsense. The administration got caught on the wrong foot, when somebody noticed what it really thinks of the value of Vet’s lives - as policy, in black and white, for everyone to see.

It’s a disturbing document, because woven among many paragraphs that are informative and clear, is the rather ominous notion: Veteran’s lives might, at some point, no be worth living.

Yes, you read that correctly.

A powerful branch of the Obama Administration, the VA, is now clearly in the business of helping citizens decide whether they should live or die.

Lest I be accused of “fishy thinking,” let’s go to the actual document, p. 21, where your government asks our sick veterans:

What makes your life worth living?

Think I’m stretching things? Read on.

After asking this question, What makes your life worth living?, the document tries to “help” Vets answer it. To do this, the VA thoughtfully provides a series of sub questions to be answered on a scale from

Difficult, but acceptable, to

Worth Living, just barely, to

Not worth living.

Here’s a sample of the sub questions to be answered through the scale above:

d. I am in severe pain most of the time.

p. My situation causes severe emotional burden for my family (such as feeling worried or stressed all the time).

q. I am a severe financial burden on my family.

I am not making this up.

Go just two pages later to the section entitled “Hope of Recovery” (p. 23). Here the quality of life issue is raised again in terms of chances for recovery from a serious illness.

(Sidebar: It doesn’t say a terminal illness, just that you won’t get back to where you were before your turn for the worse):

Imagine that you are seriously ill. The doctors are recommending treatment for your illness, but the treatments have very severe side effects, such as severe pain, nausea, vomiting, or weakness that could last for 2-3 months.

I would be willing to endure severe side effects if the chance that I would regain my current health was:

high (over 80%) [Yes, Not sure, No]

moderate (50%) [Yes, Not sure, No]

low (20%) [Yes, Not sure, No]

very low (less than 2%) [Yes, Not sure, No]

There's plenty more of the same in its 54 pages.

It's not unreasonable, based on the document, to observe at least some of the Obama Administration's thinking:

1. Life is not always worth living.

2. We can help you decide if life is not worth living.

3. Your life might not be worth living because your being alive may be a burden to others.

4. Your life might not be worth living because some treatments are painful, have side effects, and might only provide a small chance of “getting healthier.”

There have been other governments who have defined groups of their citizenry as having lives not worth living.

Is the current administration populated by a bunch of Nazis? No, the only people who were Nazis were the Nazis.

However, there’s no question that our government, at least as far as its war heroes go, officially acknowledges that under a whole bunch of circumstances, some citizens’ lives might not be worthy of living.

I wonder which group will be next?

Because, for governments unchecked, there’ll always be a next group, trust me.

Caution: House Healthcare Bill 3200 Means What It Says

President Obama, ever-present in every form of media imaginable, continues to struggle mightily to articulate what exactly he means by healthcare reform.

I’m not impressed, because I don’t think the President knows what he means - the messages are just too garbled.

Ditto his cabinet and top party officials, who routinely issue statements that are quite contradictory, both to each other, and to the President, and are then followed by the usual retractions, clarifications, or by attacking the messenger.

This message mess is understandable, because the President has delegated what his reform means to the lawmakers who have drafted several sets of legislation both in the US Senate and the House.

The proposal drawing the most interest has been H.R. 3200, which aims to:

To provide affordable, quality health care for all Americans and reduce the growth in health care spending, and for other purposes.

Unlike my President and many lawmakers, I’ve read the bill. It’s not that difficult to understand, and no, you really don’t need to be a lawyer to understand it. It’s boring reading, but hardly incomprehensible.

Many of us don’t like what we see.

But proponents keep insisting that what the bill actually says is, well, not what it says, and that many of us who know exactly what it says (and implies) are perpetuating “myths” or “misinformation.”

Really? Let’s look at just one example:

Proponents of H. R. 3200 insist that the now-notorious Section 1228 of the bill, beginning on p. 424, describing ‘advance care planning consultation,’ is not mandatory. It’s simply, so they say, that the bill provides for people to discuss their end-of-life preferences with their doctor, and that this consult will now be paid for by the government.

I searched the bill. The word “voluntary” appears 7 times.

Now, that leads me to think that the word “voluntary” is written those 7 times because the bill means for those particular parts of the bill to be, well, not mandatory. Ergo, voluntary.

However, there’s absolutely no “voluntary” mention in the section related to ‘advance care planning consultation.’

In fact, at the very least, even if we can explain away the rest of the “voluntary’ canard in the bill, read this, from page 428 (italics mine):

(B) An advance care planning consultation with respect to an individual may be conducted more frequently than provided under paragraph (1) if there is a significant change in the health condition of the individual, including diagnosis of a chronic, progressive, life-limiting disease, a life-threatening or terminal diagnosis or life-threatening injury, or upon admission to a skilled nursing facility, a long-term care facility (as defined by the Secretary), or a hospice program.

See any mention of ‘voluntary’ in Section B?

Yes, folks, even if you can somehow dodge the end-of-life consultation while you’re at home, once you’re admitted to a medical facility that is reimbursed by Medicare, you’re going to get it whether you like it or not.

Is it really too much of a stretch to think that if something, in proposed legislation, is meant to be voluntary, that the legislation so stipulates, and that where something is not voluntary, that the word “voluntary” (or the clear implication of voluntariness) is absent?

If you think it is, indeed too much of a stretch, go read the bill.

Show me where it stipulates, in black and white, that the ‘advance care planning consultation’ is voluntary.

Palin’s "Death Panels" Are Already Here

Former Alaskan Governor Sarah Palin made some comments on Friday that seem to have gotten the pro-death healthcare reform side in a bit of a dither.

Here’s what Palin said:

The Democrats promise that a government health care system will reduce the cost of health care, but as the economist Thomas Sowell has pointed out, government health care will not reduce the cost; it will simply refuse to pay the cost. And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.

Apparently the pro-healthcare reform lobby took exception to Palin’s assertion of a “death panel.”

Now, I’m not sure what else you call proposals for government apparatchiks to monitor and control the treatments doctors hand out, and who may well refuse to allow doctors to use some treatments, thereby resulting in the death of some of their patients.

But, as much as I think Palin’s comments are right on the money, let’s remember that we already have such death panels operating in hospitals all over the country.

And we’ve had them for quite a while.

Exhibit A: Texas.

When former President George W. Bush was Governor of Texas, he signed into law the Texas Advance Directives Act of 1999, the provisions of which allow exactly what Palin suggested – a panel that decides if some patients should die.

Here’s what the law allows: Any hospital can, legally, give notice that it is stopping all patient treatment 10 days after the decision has been conveyed to the patient’s loved ones.

The reason for stopping treatment? The hospital has decided that any more care is considered futile. That is, any more care is essentially useless and wasteful, because the patient will never get better.

This decision is made exclusively by the hospital panel. Loved ones have no say in how this is decided.

Not a word.

This decision can be made even if the family is able and willing to pay for all care themselves, and the law overrides any advance directives the patient may have had, saying, for example, that all treatment should be continued until death.

Utilitarian? As Palin might say, you betcha!!

The logic’s pretty simple, actually:

You’re not getting healthier; it’s a waste of money to spend any more treatment on you. We will use those expensive treatments on people who will have a better chance of getting better.

In other words, hurry up and die.

That’s what happened in the fight to keep treatment going to poor Emilio Gonzales in 2007, and to many others like him across the country.

In the interests of fairness, of course, loved ones, once informed of the hospital’s decision, may then “appeal.” That means hiring lawyers to get a court injunction to delay the end of treatment.

Yes, folks, in Texas you will need to hire a lawyer to prevent the hospital from killing your loved one.

If this isn’t a version of a “death panel,” I don’t know what is.

President Obama’s Medicare Welcomes the Grim Reaper, Part II

The healthcare debate is gathering momentum because people are beginning to understand what the government is intending.

What the government is intending, of course, is controlling who lives and who dies, who gets treatment and who doesn’t.

I’ve already addressed this intention via the President’s repeated public statements, and how certain phrases are repeated, mantra-like, so that they will become embedded in the public mind.

That’s why the President is constantly in media-blitz mode, repeating the same themes time after time. He does that because he wants you to believe certain things and not believe other things. He’s intent on bending public opinion to his will.

My favorite propaganda theme? Well, the President has a way of explaining things about healthcare in terms of “making people healthier.” Over and over again, in print, all over television, town hall meetings, and YouTube chats, the drumbeat is healthier is the administration's goal.

However, as far as I can tell, nobody has ever challenged the President with this question, so let me try:

President Obama, you repeatedly emphasize how your heathcare proposals will “make people healthier.” What does that mean for people who have no hope of becoming healthier? What of people with chronic conditions, disabilities, and the elderly?

I’m not holding my breath for an answer.

So, we need to look for clues. Let’s say among people on Medicare (the elderly, people with disabilities, and those with chronic health conditions).

Let’s go to HR 3200, the 1,017 behemoth healthcare bill that many of our public representatives arrogantly admit to not reading.

Despite what some of our representatives say, the language of the bill is quite plain. The clues are there, but you must read carefully not only for what is said, but for what is not said.

Exhibit 1: Advocates insist that the bill says absolutely nothing about end-of-life counseling being “mandatory.” Well, the bill first describes what this ‘advance care planning consultation’ will look like, and then says this:

the term ‘advance care planning consultation’ means a consultation between the individual and a practitioner described in paragraph (2) [doctor, nurse, or nurse practitioner] regarding advance care planning, if . . . the individual involved has not had such a consultation within the last 5 years . . . An advance care planning consultation with respect to an individual may be conducted more frequently . . . if there is a significant change in the health condition of the individual, including diagnosis of a chronic, progressive, life-limiting disease, a life-threatening or terminal diagnosis or life-threatening injury, or upon admission to a skilled nursing facility, a long-term care facility (as defined by the Secretary), hospice program.

So, if you’re “healthy,” such a consultation will be every 5 years. If you get less healthy, you might have more consultations as your state of health declines.

Here’s the deception that the pro-death lobby doesn’t want you to understand: If this bill becomes law, there is no way that it will not be a mandatory requirement.

Why??

Because nowhere in the bill does it say that the “consultation” is OPTIONAL.

Now, if a law says something is not optional, then there’s only one other way to interpret its legal intent: Yes, mandatory.

Wouldn’t surprise me at some point, if this becomes law, and people finally wake up, they might hear the administration say the following:

Well, we never said it would be mandatory, I think we can all agree on that. We just made sure that it wasn’t optional.

Gotcha!!!

Doublespeak is not new, but it’s still chilling.

President Obama’s Medicare Welcomes the Grim Reaper

The healthcare debate is raging.

It should.

But it’s not raging enough, if you ask me.

Think about it: Politicians voting on bills they admit they haven’t read (healthcare will be no different), and a President pushing a healthcare bill that, by his own admission, has provisions that he’s “not familiar with”

No matter.

For President Obama, it’s all urgent, urgent, urgent. The time for talk is over. The time to act is now.

I suggest part of the urgency is a sleight of hand to enshrine the culture of death in law.

Why? Because bureaucratized death stalks the droning sea of its thousand-odd pages.

I’m referring, of course, to H.R. 3200, the “healthcare” bill, euphemistically described as a bill “To provide affordable, quality health care for all Americans and reduce the growth in health care spending, and for other purposes.”

George Orwell, wherever he is, must be very proud.

Like my President and many of our representatives, I haven’t read the entire 1,017 pages of the bill, but I did find a chilling section that we’d better talk about.

Now.

If we don’t, and this bill becomes law, people will die at the behest of the administration’s apparatchiks, the new foot soldiers of death by paperwork, decided in dingy government offices.

Cold, remote-controlled death. 8 to 5. In your best interests, of course.

Buried on pages 424-434 of the bill, in a section headed “Advance Care Planning Consultation” the first target are those covered by Medicare.

Pop quiz: Who are the people covered by Medicare in the US?

Answer: People over 65, people with disabilities, and specifically (more in Part II) patients with end-stage kidney disease and those with ALS (Lou Gehrig’s Disease).

Among the usual, pious explanations about advance care directives (living wills) and health proxies (someone to decide on your behalf if you are unable to do so) is the true intent: Killing off people who cost too much.

Now it’s not written that bluntly, but it’s there, nevertheless.

Side bar: Remember that the President is on record explicitly saying that decisions are going to be made about who gets care and who doesn’t, and that the elderly and disabled will just have to suck it up when they’re on the losing (sorry, cost-effective) end.

I’ll say more in Part II, but here’s a taste:

Citizens receiving Medicare (elderly, disabled, etc.) will be required to have a mandatory “Advance Care Planning Consultation” every 5 years. That’s if you are healthy but over 65. If your medical condition deteriorates, then these consultations will become more frequent.

These “consultations” will include advice on “the continuum of end-of-life services.”

Stay tuned – “end of life services,” as defined in the bill, will include withdrawal of “artificial” nourishment and hydration.

Just saying: Let’s assume you’re in a coma. Some desk jockey reads your file. (That is, when they’re not on their union-sanctioned lunch and other breaks). You can’t eat, you can’t drink. You are on “artificial” nourishment and hydration.

This costs money. Your quality of life is poor. Others, who have a better chance at a “quality of life,” will benefit more. Rules must be followed. The law must be obeyed. The checklist must be diligently filled out. Thumbs up, thumbs down. Gotta watch the clock. Five o’clock traffic is bad.

A final thought: There’s nothing explicit about assisted suicide being on the continuum of “end-of-life-services.”

BUT: Don’t forget, in Oregon and Washington, and, for now in Montana, assisted suicide is most certainly a state-sanctioned legal “end-of-life-service.” Ask Barbara Wagner, who was denied expensive meds to comfort her terminally ill condition, but whose state commissars offered to pay for a much cheaper alternative: The drugs that would help her to commit (legal) assisted suicide.

Stay tuned for Part II, especially if you have, or will have at some point in your life, involvement with Medicare.

UK: Might You Die Because You are Unable to Say You Want to Live?

There is no doubt that Baroness Campbell of Surbiton made the difference in a very important debate in the UK House of Lords last week.

Speaking in opposition to an amendment proposed by Lord Falconer, which sought to decriminalize the actions of people who help others commit suicide, the good Baroness delivered a compelling speech that was the main reason the amendment was defeated.

Baroness Campbell, born with a degenerative muscular condition, understood the implications of the amendment, which was generated by the intense reporting over the last few years of many UK citizens, who, accompanied by others, had travelled to Switzerland for assisted suicide at the Dignitas clinic (here, here, here, here).

Ahead of the debate, Baroness Campbell penned a persuasive public letter laying out her position. ISDB, along with a number of other US and UK disability advocacy organizations, was a signatory to the letter.

Last Sunday, Baroness Campbell detailed her struggles and her ultimate conviction that her life was worth living.

She also noted that in one hospital emergency, where she was unable to speak for herself, she was lucky to have had her husband Roger there to speak for her, because it was clear that the doctors were going to let her die, and had already agreed on a “do not resuscitate” order, ostensibly because of her poor quality if life.

I was horrified to learn that it was only after Roger showed the doctors a photograph of Baroness Campbell getting an honorary doctorate in law from Bristol University that they were persuaded that she did, indeed, have a good “quality of life.”

That’s what we’ve come to: Having to prove to our doctors that our lives are worth living, and therefore worth saving.

Is there still anyone who thinks that, had Roger not been at his wife’s side, that she would be giving an interview in her sunny garden last Sunday?

Is there still anyone who doesn’t think that among the many thousands of people with medical and other disabilities that turn up alone in UK hospitals in similar circumstances, that many are allowed or encouraged to die even if they want to live?

ISDB Signatory to Baroness Campbell’s Letter Opposing Proposed UK Pro-Assisted Suicide Amendments

Last week, in London, a motion was introduced in the House of Lords to strike down legislation that allowed for the prosecution of anyone helping another commit suicide. The motion was introduced by Lord Falconer to protect those who travel with another person seeking assisted suicide in foreign countries, and who then risked prosecution when they returned to the UK.

The motion was defeated, in part, because disability advocates and organizations in the US and the UK, including ISDB, joined as signatories to an opposing letter written by Baroness Campbell, a member of the House of Lords who has a disability.

Open Letter from Leaders of Disabled People’s Movement in UK and USA

Dear Sir,

As leaders of the disabled people’s movement in the UK and the USA, we are extremely concerned about how the proposed amendment to the Coroners and Justice Bill will impact on the lives of disabled people.

If Lord Falconer’s amendment succeeds in the House of Lords on Tuesday 7 July then those who assist ‘terminally ill’ people to go abroad to end their lives in ‘suicide clinics’ would be immune from prosecution.

The phrase ‘terminally ill’ is not defined in the amendment, and could apply to people with a very wide range of chronic progressive illnesses some with life expectancy stretching to decades. Disabled people who experience progressive conditions understand far more than non-disabled people about what it is live with these pressures. We know what is acceptable as disease or disability progresses, and for the huge number of us who say no to assisted suicide, it is because we fear the changing culture such an amendment would bring. People without experience of disability, including our friends and families cannot predict what each stage of our personal journey will mean. Furthermore, financial and emotional conflicts of interest will always present an added burden to the situation. A law decriminalising assisted suicide would undoubtedly place disabled people under pressure to end their lives early to relieve the burden on relatives, carers or the state.

These concerns are not side issues that only affect disabled people. We are like society’s ‘canaries in the coalmine’ who can often see the dangers of potentially discriminatory legislation before others, as it impacts on us even before the deed is done. We are scared now; we will be terrified if assisted suicide becomes state-sanctioned.

The existing law, with the penalties it holds in reserve, causes potential assisters and those wishing to die, to think very carefully before acting. The discretion within the current law enables judges to exercise compassion in hard cases. What is not broken does not need fixing.

Disabled people have been largely silent in this debate which has been carried out in the media by clerics, non-disabled commentators and a small handful of individuals with terminal conditions who are supported by Dignity in Dying. Until people like us are present to engage in this highly complex and ethical debate, we must strongly oppose any device such as Lord Falconer’s amendment to get assisted dying in through the back door.

Baroness Campbell of Surbiton

Crossbench Peer

Liz Sayce, CEO, RADAR

Julie Newman, Chair, United Kingdom Disabled People’s Council (UKDPC)

David Morris, Chair of Independent Living Alternatives

Haqeeq Bostan, Director of New Disability Policy Forum

Diane Coleman, President, Not Dead Yet

Rachel Hurst, Disability Awareness in Action

Mike Smith, Chair, National Centre for Independent Living

Colin Revell, CEO, NeuroDiversity International (NDI)

Marilyn Golden, Disability Rights Education and Defense Fund (DREDF)

Alison Davis, National Coordinator, No Less Human

Dr. Mark Mostert, Director, Institute for the Study of Disabilities & Bioethics (ISDB)

Alice Maynard, Director, Future Inclusion

Linda Burnip, Executive Health and Safety Officer for Warwickshire and Coventry CDP

Liz Crow, Roaring Girl Productions

Stephen Drake, Research Analyst, Not Dead Yet

Adrian Whyatt, Chair, NeuroDiversity International (NDI)

Keith Armstrong, Historian, writer, musician and video maker

Dawn Willis, Activist/Trainer affiliated to RETHINK

Professor Colin Barnes, Centre for Disability Studies, University of Leeds

Louise Clifford, Daughter of Max Clifford

Leonard Zandrow, General Counsel, National Spinal Cord Injury Association

Ann Macfarlane OBE, Kingston CIL

Andrew Bruce, East Sussex CIL Development Worker

Tara Flood, Director, Alliance for Inclusive Education

Andrew Little, Director, Ahead Disability Equipment & Consultancy LLP

Alison Cater, Director, Ahead Disability Equipment & Consultancy LLP

Janice Ollerton, Disabilities Studies Researcher/Activist (Australia)

Joseph M. Camilleri, CHAIR, Kummissjoni Nazzjonali Persuni b'Dizabilità (Malta)

Julie McNamara, Activist / Director Crossings Theatre

Kate Nash, Not Dead Yet

Roxanne Homayoun, Direct Action Network

Dr Ju Gosling, Chair, Regard

John W. Smith, Coordinator Disabled Peoples Alliance, Northamptonshire

Kelly Buckland, Executive Director, National Council on Independent Living

Tolerance Ends, Animus Arises Where Disability Begins

Cyberspace has been alive with discussions of a hit piece written by the Huffington Post’s Erik Sean Nelson. Nelson used the now well-worn epithets of being retarded in commenting on Sarah Palin’s resignation as Alaska Governor last week.

The piece was pulled almost immediately, but not before several media watchdog groups had downloaded screen captures. Nelson swiftly offered an apology for what he wrote, but not for the way he thinks about people with disabilities.

I’ve decided to share the piece in it’s entirety because it reveals the palpable animus toward people with disabilities that’s alive and well in the US.

Penned as a “humorous” piece (it’s not), had this been written about almost any other group of people (take your pick: minorities, women, on and on) there would have been nothing less than a media firestorm that would have had the potential to wipe the Michael Jackson coverage from our TV screens.

However, Nelson is in good company. It wasn’t too long ago that Rep. Charlie Rangel (D-NY) repeatedly said, on the record, that Sarah Palin was retarded. And don’t let’s forget President Obama cheerfully noted that he bowls like a retard.

Just so that it’s clear: Palin is targeted in this way because Trig has Down Syndrome.

Funny, I don’t recall anything like this ever being said about a person in the Kennedy family who had mental retardation.

Here’s Nelson’s vitriol:

Palin Will Run in '12 on More Retardation Platform

In Sarah Palin's resignation announcement she complained about the treatment of her son Trig who always teaches her life lessons. She said that the "world needs more Trigs, not fewer." That's a presidential campaign promise we can all get behind. She will be the first politician to actually try to increase the population of retarded people. To me, it's kinda like saying the world needs more cancer patients because they teach us such personal lessons.

Her first act as President: To introduce a Pre-K lunch buffet that includes lead paint chips. Sort of a Large HEAD-START Program.

She will then encourage women to hold off on pregnancies until their 40's just to mix up some chromosomes.

She now is in favor of abortion only in case of diploid birth.

Her policies will increase jobs because Wal-Mart is building new stores each day and someone has to be the greeter.

This will lead to smaller government because fewer Americans will have the cognitive ability to hold a government job.

Look, she says she's resigning as governor because people are making attacks on her and Trig. If she ever did become president, all Osama bin Laden would have to do to defeat the United States is Photoshop a picture of Trig and she'd surrender the country that night. As she said, "That's not politics as usual." It isn't. Politicians don't usually quit for so stupid of reasons.

I’m sure you’re all laughing your heads off.

A final thought: A raft of disability advocacy groups have been stunningly silent on this issue. They get their alerts, they read the blogs every day, and are lightning quick to defend against the kind of bigotry that Nelson showed.

They’ve been AWOL here.

Why? Do they believe that for Sarah Palin and her son Trig this kind of nastiness is OK?

President Obama: Potential for Getting Healthy? You Win!!

Let’s be clear: President Obama’s push for healthcare reform will significantly change the way people with serious medical conditions, especially among the elderly, those with disabilities, and the terminally ill, will be treated.

Well, not treated, actually.

There’s no doubt that the President’s message, hammered relentlessly at every turn, is made in starkly economic terms – that medical care is very expensive, costs need to be controlled, and resources have to be allocated in new ways.

That’s half the pitch.

Here’s the other half: Because of this problem, it’s important to see which groups of people disproportionately consume the lion’s share of medical care dollars.

We already know: People with disabilities, people with serious chronic illnesses, the terminally ill, and the elderly.

The president hasn’t gotten around to making his economic case about people with disabilities yet, but he has in terms of the elderly and the terminally ill. My take is that among the targeted groups, it’s the disability community that will raise stiff opposition. The elderly and the terminally ill are more vulnerable, and are less likely to protest.

Let me put the president’s strategy more bluntly:

"Medical care is expensive. Some people get a lot of care, others very little. Many people who get a lot of expensive care are the elderly, those with disabilities, and those who are probably not going to ever be as healthy as they used to be. We don’t have the money to pay for every expensive procedure for everyone, so we need to decide who gets the care that’ll give us most bang for the buck."

The President doesn’t say it this way, instead he uses a euphemism it’s hard not to like: Health. We must give medical care to make people healthier.

Note what’s not said: If you have no prospect of getting healthy, then the government needs to step in and decide whether or not you are worth getting the treatment.

President Obama drive this point home in his interview to the New York Times in April (all italics are mine):

And part of what I think government can do effectively is to be an honest broker in assessing and evaluating treatment options. And certainly that’s true when it comes to Medicare and Medicaid, where the taxpayers are footing the bill and we have an obligation to get those costs under control. And right now we’re footing the bill for a lot of things that don’t make people healthier.

The president drummed the “Health” theme again in his ABC News Health Care Forum at the White House last week:

But here's the problem that we have in our current health care system, is that there is a whole bunch of care that's being provided that every study, every bit of evidence that we have indicates may not be making us healthier.

And later:

And in terms of how doctors are reimbursed, it's going to be the same system that we have now, except we can start making some changes so that, for example, we're rewarding quality of outcomes rather than the number of procedures that are done. And this is true not just for doctors, it's also true for hospitals. One of the things that we could say to hospitals is, reduce your readmission rate, which is also often a sign that health outcomes have not been so good.

Now, we've put forward some specific ways of paying for the health reform that we talked about. About two-thirds of the cost would be covered by re-allocating dollars that are already in the health care system, taxpayers are already paying for it, but it's not going to stuff that's making you healthier.

Prediction: If the President has his way, expensive medical care will be redirected to the winners in this money game, those who have the potential to be healthier.

If you have a disability, if you’re elderly and in poor health, or if you have a severe chronic or terminal condition, you lose.