Tuesday, February 23, 2010

Futile Care – Who's for the Blood and Gore?

Today the New York Times has a piece about the dilemmas of futile care.

What is futile care?

Glad you asked.

Futile care is essentially the idea that for many patients, there comes a point where medical treatment is useless, because it will not improve their condition. On its face, this seems reasonable, except for at least two points. One, we had better be careful about what we define as futile care. Why? Because, increasingly, feeding and hydration are being classified as medical treatments, ergo, they can be judged as medically futile and therefore withdrawn. Two, futile care arguments slip very easily into the realm of doing what’s cost effective. How so? Well, if there is an expensive medical intervention (and almost all medical interventions for these patients are expensive) wouldn’t the treatment be better utilized on someone who has a much better chance of getting better?

The NYT piece shows how biased the media has become when reporting on end-of-life issues, because it goes out of its way to tell us how awful and horrific end-of-life interventions can be.

The piece makes a stab at balance, noting that not all doctors think futile care is the way to go, and also acknowledges that sometimes it is more loved ones’ denial of the obvious, if painful reality. That’s fair enough – as far as it goes.

But read the opening sentence:

Aggressive treatment at the end of life — frantic CPR for a brain-dead accident victim, inserting a feeding tube in a dying Alzheimer’s patient — has become a staple of the health care debate. Critics argue that vast resources are squandered on care that is obviously futile.

No exactly nuanced, and it sets an unfortunate tone, especially entertaining the notion that it’s OK to starve Alzheimer’s people to death.

It goes downhill from there. Soon we are in the grimly grotesque world of a twenty-first century Frankenstein:

The subject of the first essay was a 2-year-old boy, severely brain-damaged from a birth defect. He was dead — his heart had stopped. His doctors and nurses knew that no matter how hard they might try to resuscitate him, they would never succeed. But they tried anyway; aggressively jamming large bore needles into his chest, pounding on him, applying paddles to shock his heart. One nurse was so upset she almost vomited.

Medically, this is accurate, I suppose. But you could couch open-heart surgery, drilling into a patient’s brain to relieve bleeding or even stitching up a gaping wound in exactly the same way – many medical interventions are gory, but that doesn't mean we don't do them. If we didn't, we'd never perform transplant surgery, amputations that save lives, or reattaching a severed limb, all interventions that are very often successful and for which patients are very grateful.

Later, in discussing CPR, the Times again prefers the gory option:

It’s a violent procedure, Dr. Helft said, “very invasive and disturbing.” Medical personnel press on a person’s chest with such force that they break ribs. They stab large bore needles into the chest to administer fluids and drugs. They shock the heart with bursts of electricity.

Well, not exactly. CPR does not necessarily mean ribs get broken. It's possible, and sometimes it happens, but suggesting that it's always the case is bunk. Emphasizing the gore betrays where the writer’s sentiments lie.

Here’s a further quote about that same little boy:

Dr. Helft explained why. “In a sense what it does is, it says that we are doing this procedure, using this procedure on the boy to benefit the family,” he said. “We are using this boy as a means to an end, an end unrelated to his own well-being. You will hear clinicians say this all the time: ‘Even though the patient is already gone, we are treating the family now.’ There are lots of other ways the family can be treated.”

OK, I see - the boy’s wellbeing was to be dead. That’s not a cynical observation. If you read much of the medical literature you can’t get away from the perception among many that death is a form of wellbeing over living and suffering.

Just like for your pet dog.

Let me be clear: There is clearly a time when reality means all medical efforts should cease. However, the trick is to know when to desist - and therein lies the judgment of the medicos, who are very far from perfect in what they can prognose.

The way they see it, however, Doctor Power should prevail.

Let’s look at the second reported case, DeeDee, an elderly woman with advanced Alzheimer’s disease who was subjected to “aggressive” resuscitation efforts and survived:

DeeDee was saved. She’s still demented, of course, and cared for round the clock by dedicated attendants.

See? What a waste of time, effort, and money. We still have to care for this demented woman around the clock, such a waste of energy and money.

Money spent on a demented old lady could have been better spent on people who are in their right mind.


Monday, February 15, 2010

“Finishing Off” Children with Disabilities

There’s a tabloid journalist in Russia making waves about lethal solutions for newborns (and others) with disabilities. Journalist Aleksandr Nikonov wrote an incendiary piece in a popular Russian tabloid, (caution, content may be offensive) Speed-Info, entitled Finish It Off, So It Doesn't Suffer.

As I say quite often here, I’m not sure why so many are surprised and outraged. Nikonov’s intent is no different than what the rest of the pro-death crowd say, just slightly more uncivilized.

Clearly, Russian tabloid journalism is short on subtlety, as is the 700,000-an-issue Speed-Info, with its copious photo layouts of scantily clad women and other lowbrow schlock. In this regard, we could simply ignore Nikonov’s message. However, tabloid sensationalism influences public opinion just as any other form of publication does – perhaps even more so.

Let’s begin with Nikonov’s own words of the title. Newborns with disabilities are suffering; therefore they should be finished off. Also, these newborns are its - not baby boys or girls, or even newborn humans, they are nonhuman. Harsh? Yes, but exactly the same sentiment that many Western countries are swallowing. (The Netherlands routinely kills disabled newborns as well as the elderly and the infirm. Scotland is talking about assisted suicide for children. Dignitas in Switzerland will help do you in for a fee. Canada’s medical community increasingly calls for the legalization of assisted suicide. The pro-death crowd in the US isn’t happy that only several states have already legalized assisted killing – they want more).

Nikonov hasn't learned the Western trick of making killing much more acceptable when it's prettified. The pro-death crowd would recoil in horror at the description of finishing people off. Instead, they talk about euthanasia, aid in dying, dying with dignity - making the ugly beautiful. Most people don’t like ugly, but they do like beautiful. It’s simply a matter of lying often enough that the lie becomes desirable truth.

However, the pretty-talking pro-death crowd is really down with Nikonov, because any way you slice it, finishing off is the intent of assisted suicide and euthanasia, warm fuzzy terminology notwithstanding.

Here’s what Nikonov said in a Radio Free Liberty interview:

Parents, in particular parents, should be free to decide the fate of their own offspring. If you want to bring up a child with Down syndrome, you can do it. But if you don’t, you can euthanize him. Why is prenatal abortion legal and post-natal abortion is not?

Well, he’s got a point: If we feel free to allow and legalize the abortion of unborn children with Down syndrome and other “defects,” as we have done, then why not allow and legalize killing after birth?

Logically, there should be no difference. At least Nikonov is consistent – kill - sorry, finish off children with disabilities wherever you find them, unborn and born.

Lest we ignore Nikonov, remember that he’s saying exactly what others in highly elevated university endowed chairs at prestigious universities are saying. For one, Peter Singer has noted that:

In any case, the position taken here does not imply that it would be better that no people born with severe disabilities should survive; it implies only that the parents of such infants should be able to make this decision. (Practical Ethics, 1999, p. 189).

I think post-natal abortion is way too pretty.

For the sake of honesty and transparency, I’m with Nikonov’s approach.

Call it what it is: Finishing off children with disabilities for their own and everyone else’s good.

Monday, February 8, 2010

Retard: Emanuel’s True Feelings About Those with Intellectual Challenges

It’s been interesting watching the media coverage of Presidential advisor Rahm Emanuel’s recent rant that included referring to some members of his own party as “f------ retards.”

Of course, the moment this was made public, Emanuel swung into damage control mode by apologizing to the disability community and meeting with several disability leaders to now, suddenly, begin working to expunge all federal documents of what the media called the dreaded “R-word.”

Mmm. The R-word. It has a long history.

Way back when, people with intellectual disabilities were called morons, idiots, and imbeciles, depending on the severity of their disability. Over the years those terms became as distasteful then as, apparently, the R-word is now.

So, instead of imbeciles, morons, and idiots, we talked about the feebleminded. That also became a term of derision often used as an epithet to describe anyone that the name-caller thought was, well, stupid.

Then came another iteration – retarded, and in three categories no less: Educable Mentally Retarded (children with intellectual disabilities who would be capable of some academic schoolwork), the Trainable Mentally Retarded (those who were not capable of academic schoolwork but who could be “trained” in personal self-care and some other life tasks), and the Severely and Profoundly Retarded whose intellectual functioning was so low that they almost always survived only in institutional and group care settings.

You’ve guessed it – retarded eventually became a derogatory term meaning stupid, incompetent, brainless, and not-very-smart.

So we changed the label again. Its latest iteration is Intellectual Disability, or perhaps Intellectual Challenge.

What Emanuel meant of course, was that the people he was referring to were stupid. Behaving like retards.

He would have been better off saying stupid than retard, obviously. But that's what he meant - retard.

Seems like for this administration it’s OK to deride those who, through no fault of their own, are intellectually different.

The most disappointing part? That it’s apparently open season on those with intellectual disabilities, with the administration leading the way.

Oh yes, and let's remember that Emanuel’s in the good company of his boss, President Obama, who a while ago yukked it up by telling a national television audience that he “bowls like a retard.”

They’ve merrily reinforced the ignorance that if you are intellectually different, you’re worth a joke or epithet or two.

Just so everyone gets the message.