Virginia: Easing Standards for Declaration of Brain Death – and Increasing Errors

brain death, legislation, organ donation, Our News & Commentary Blog, reality check

I’ve been intending to write something about the complicated relationship between statutes governing brain death and the actual protocols used to determine when someone is brain dead. That will have to wait for another time. Right now, it looks like the state of Virginia is poised to streamline the requirements for declaring a patient “brain dead.”

According to the bill tracking information on Richmond Sunlight, the law currently requires two physicians to make a determination that brain death has occurred and that one of them has to be a specialist “in the field of neurology, neurosurgery, or electroencephalography.” SB13 changes that by adding “critical care” to the list of specialists who can make a determination of brain death.

First, the good news: it still takes two physicians to make a determination.  The bad news, of course is that neither of the physicians has to have any expertise in anything related to neurology.  That means that false determinations of brain death are a virtual certainty.

The reason I say that false determinations are a virtual certainty relates to the reactions from medical experts (not to mention common sense) that were quoted in a 2006 article published in The Star-Ledger, when New Jersey was considering even more drastic changes in the personnel allowed to make a determination of brain death.

Yesterday, I searched the newspaper archives and bought a copy of the 2006 article by Angela Stewart. For those who want to hunt the article down, it’s titled “Deciding when life has come to an end – Medical board to review who can declare when brain death occurs,” and was published on June 12, 2006.

Back then, NJ was also looking to expand the range of medical professionals allowed to make a determination of brain death – and to drop the requirement for two physicians.

Here are quotes from medical professionals about dropping the requirements for specialists related to neurology being involved in the determination:

Martin Gizzi, a neurologist who chairs the New Jersey Neuroscience Institute at JFK Medical Center in Edison,said he is concerned about brain death rulings coming from doctors whomay not be properly trained.

For example, it is important to decipher whether a patient’s response is the resultof real brain activity or a spinal reflex, he said. 

More…

Michael Williams, an associate professor of neurology at Johns Hopkins in Baltimore, believes most hospitals – including his – still prefer a neurologist or another expert doctorto make the pronouncement.

“Youjust don’t run in and look at the patient and say, ‘Yes, they are brain dead.’

It requires a thorough and detailed examination,” said Williams, who also is chairman of the American Academy of Neurology’s ethics, law and humanities committee.

Williams recalled a case study in the Journal of Critical Care Medicine involving apatient with Guillain-Barr‚ syndrome who was mistakenly thought to be brain dead.

“Fortunately,they did some testing before the second brain death examination that demonstrated the patient had EEG (brain wave) function. The patient actually got better,” he said. 

So why is this being pushed? I’m guessing, but here are some possibilities:

1. Unlike the other specialists in brain-related areas, critical care specialists are readily available in an emergency room – and probably the ICU.  This means that a determination of brain death can be made more quickly, freeing up a room and other resources – and getting any organ donation request much more quickly.

2. Given the sloppy usage of the term “brain death” regarding people who clearly were not (e.g. Haleigh Poutre and Dorothy Livadas) in some high-profile cases, it’s clear that at least some medical professionals don’t see much harm in erroneously labeling someone as “brain dead” if they think the person doesn’t have much of a chance of a “meaningful” recovery.

If people are declared brain dead under the new rules who would not have been under the old ones, it might also result in a small increase in available organs for transplantation.

There is at least one transplant recipient who isn’t celebrating this particular development.

Alison Hymes is a Virginia cross-disability activist who is an organ recipient from a person who died.

She says she would not have accepted a transplant if thislaw were in effect when she got hers.

Alison is the one who alerted me to this innocuous-looking piece of legislation in Virginia. –Stephen Drake

Clair Lewis: At the end of life’s tether (UK)

assisted suicide, clair lewis, euthanasia, medical killings, Our News & Commentary Blog, suicide, United Kingdom

There has been a lot happening in the UK in the past couple of weeks and I’ll be writing on it in the days and weeks to come.  There have been a couple of court cases, and two famous authors promoting euthanasia and assisted suicide – all of this in the UK and in a very short span of time.  The media is making a party of it – and there isn’t much attempt to be evenhanded in the treatment of the issues.  There’s a steamroller going full time across the pond, and our brothers and sisters in the disability movement are beginning to feel the rumblings.

For right now, disability activist Clair Lewis has written a good overview of recent events and what she sees coming at her.  Regular readers of this blog might remember an earlier essay of hers that was shared here last year titled “My life is unbearable – Don’t fix it, just kill me.”

Writing once again at Heresy Corner, Clair Lewis has written another important essay that should be heard above the voices of the affluent “advocates” who dominate the discussion of assisted suicide and euthanasia in the UK.  Below is the intro to “At the end of life’s tether“:

Two weeks ago I was utterly at the end of my tether, a wobbling mess of a person who was waking up every day wishing I hadn’t. Disabled people do struggle – profoundly at times. I can’t deny that, my own life proves it to be true. There are three people in my family with additional needs. One of them badly needs but doesn’t have adequate social care provision, I can’t find a member of care staff to get me out of bed most mornings who is willing to work for the allocated money in these circumstances. Life has become permanently stressful, draining every last spoonful of my energy, so I am now in constant pain, have daily migranes and keep falling asleep by accident. Then one of my girlfriends broke up with me – now the second long term partner I have lost citing ‘my circumstances’ as the reason. By anyone’s standards I was having a pretty bad time. I felt like I was grasping hold of the last strand of my sanity.

So.. just like non disabled people do, I nipped down to my wonderful GP who said ‘Oh you look VERY tense’, I blubbed like a baby and came home with a fistful of antidepressants (again) having been told it’s only to be expected with a life as difficult as mine. Thank goodness for his sensible approach.

In the UK this week, affluent writers like Terry Pratchett and Martin Amis are swamping the press with calls for death clinics (again!) for those with nothing else to worry about except their impairments, while those of us in poverty and lacking the services and resources we need know that should assisted suicide become legal here, people will end up being killed because of things which could be fixed.

But dying, with, or without the assistance of a death clinic or my family would not make this situation better, neither would killing one of my children. It would also not help me if when I had popped down the GP, I left with a Dignitas leaflet.

Please read the rest of the essay here. –Stephen Drake

The Song That Is Sung at Final Exit Network Meetings (Or Should Be)

final exit network, humor, Our News & Commentary Blog, satire

About two weeks ago, an interview with a member of the group “Fear Factory” included the news that the group’s new album includes a cut titled “Final Exit.” Below is an excerpt from the interview with group member Burton Bell:

KNAC.COM: “Final Exit” is a suitably grim note to end the album on, is that Jack Kevorkian’s voice in the talking snippets?

BELL: That’s actually Derek Humphry, the writer of the book Final Exit and a member of the Final Exit Network. It’s some dialogue from his Web site. The statement for “Final Exit,” it’s not a negative comment on the organization, it’s a statement about society and how it’s gotten to the point in the world of medicine where instead of trying to find cures they’re just not helping people at all. And this is a resort people have to take, assisted suicide to end their suffering.

Final exit is supposed to be an answer for people to relieve the pain. The organization is there to help people who are in extreme pain, debilitating pain, pain that they cannot bear to live with and that there is no cure for. To quote Chris Rock, “there’s no money in the cure.” The money’s in letting people linger, not matter how bad their quality of life has gotten. The message of the Final Exit Network is “we will help you. You have a choice.”

Well, no one ever said that an ability to engage in critical thinking – or even coherent thinking – was a quality necessary for success in the entertainment field.  No one trying to find cures?  Evidently Bell has managed to miss the Labor Day Telethon during his lifetime – probably hasn’t heard of “Autism Speaks” either.  He also doesn’t seem to know a lot about the Final Exit Network  (FEN) itself and just how broad the the group’s eligibility criteria is in terms of who it will “help.”

But that isn’t really the song I want to talk about.  Since the FEN surfaced, with its helium-based suicide guidance and assistance, I have believed they already had an organizational song. 

OK, maybe not – but I found the perfect song for a bunch of whacky, goofy, “special” folks like the ones who make up the membership of the FEN.  This song would be perfect – and would require the FEN members to sing while taking tokes off of their own helium tanks – led by Derek Humphry, looking something like the hookah-toking caterpillar in “Alice in Wonderland.”  (I’m not usually this visual – but the cinematic picture I get of this is like something out of one of the movies by Mel Brooks.)

So I’d like to share my selection for the theme song for the whimsical folks at FEN, with a link to an mp3 recording of the song “Helium” by John Forster:

Click to access mp3 of “Helium.”

For those who cannot access the mp3 for whatever reason, here are the lyrics from Forster’s website:

Cocaine Bill & Morphine Sue–
Get out the way. Here comes Helium Hugh.
Helium [inhale]…runnin’ round my brain.

A ten buck bottle on the street
Gets you about a hundred fifty cubic feet
Of helium…running round my brain.

I’m all through with blow and boo,
Bourbon, cigarettes and airplane glue.
I no longer waste my breath
Crying “Give me Librium or Give me Meth.”

Breathe it in/ Up ya go.
Nice and slow/ When you’re done
And down ya come/ Cause helium
Is really um-believable stuff.

Float in space, your mind’s a blank.
The only pressure is in the tank.
Nothing can upset this tranquil mood.

[Break: Kazoo on helium]

Father James says all the monks
Got helium hoses in their bunks.
“Et com spiritu tuo helium”

Crack is bad and smack is bad
And so is LSD.
And I vaguely recall that pot
Does…something bad to your memory.

So when I die, Oh please don’t skinp.
Bury my body in the Goodyear blimp
I got to got to have that helium…runnin’ round my brain.

Yeah, it’s a little sick – but let’s get real.  What’s really sick is a bunch of folks who devote themselves to arranging and managing the suicides of total strangers. 

I believe in treating them with all the respect and dignity they deserve.  😉  –Stephen Drake

NBC Dateline: “A Matter Of Time” (Ruben Navarro)

bioethics, media coverage, organ donation, Our News & Commentary Blog, Ruben Navarro, safeguards

When checking the blog stats this morning, I noticed a huge jump in hits yesterday.  It took me a bit to figure out why, since it’s been a few days since I’ve posted anything.

It turns out that NBC Dateline broadcast a story on the death of Ruben Navarro and the trial of Dr. Hootan Roozrokh last night.  A bunch of folks found this blog using their search engines.  (Ruben Navarro died after an aborted attempt at Donation after Cardiac Death – DCD – in a nightmarish scenario that has been described in this blog and elsewhere.)

The story contains some important updates and leaves many important questions just hanging.

First, though, it’s probably most important to share the news that not only was Dr. Roozrokh exonerated by a jury, but Ruben Navarro’s mother now sees him as someone who did the best he could in a bad situation.

From the transcript to “A Matter of Time“:

After the trial, the California medical board, which had also launched an investigation of Dr. Roozrokh, quietly withdrew it. And Rosa withdrew her lawsuit. And this is rare.  Her lawyer attached a letter of apology: “We believe you acted ethically and in good faith society will be best served if you are allowed to apply… your talents as a transplant surgeon and continue saving lives. “

That doesn’t mean that what happened with Ruben Navarro was acceptable or that there aren’t important questions left hanging that will now never be answered:

  • Rosa Navarro claimed that she was told that Ruben could only be on a ventilator for five days and then would be taken off; Who told her this?  Was it hospital policy?  No hospital representative in coverage has confirmed or denied this claim.
  • What happened to the medical chart containing the minute by minute recording of Ruben Navarro’s vital signs that night?  Why was nurse Carla Albright, the transplant coordinator who had a heavy hand in this mess, never called as a witness?
  • Was Ruben Navarro really dying?  Dr. Roozrokh himself noted how hard his body rallied to continue to live even after ventilator removal and the administration of morphine and ativan.  Was Rosa Navarro misled in some way?

It’s frustrating that as I read the transcript over, almost everyone involved in the story seems more concerned with this story’s negative impact on organ donation than the particulars of Ruben Navarro’s death.  It would be nice to see some indication that some of the professionals felt a little worse about that.  –Stephen Drake

The Guardian (UK) – Charlotte Raven: Should I take my own life?

assisted suicide, euthanasia, huntington's chorea, media coverage, Our News & Commentary Blog, suicide, United Kingdom

Honestly, a lot of what I get to read for my work is pretty dreary stuff.  Disabled people who want to kill themselves, family members who want to kill incapacitated “loved ones,” and elderly guys getting a pass from the legal system when they kill their ill wives are just some of the fun things that come through my news feed in the course of a month or particularly bad week.

Once in awhile, I’m pleasantly surprised – astonished really – at a breath of fresh air in what often seems like a steady tide of “better dead” than disabled propaganda coming at me through various media.

Last week, The Guardian published one of those blasts of fresh air.

Below are a few excerpts from “Should I take my own life?” by Guardian writer Charlotte Raven:

In 2006, 18 months after the birth of my baby, I tested positive for Huntington’s disease. The nurse who delivered the news hugged me consolingly and left me with my husband and a mug of sweet tea to cry. In the days that followed, I began to realise why so few of the people at risk of inheriting this ­incurable neurodegenerative ­disorder chose to find out.

This incuriosity had seemed to me irresponsible. Having discovered the previous year that my ­father had the disease, I had been offered a test that would tell me for certain if I, too, had i­nherited the gene. In the months of debate I’d had with my husband about whether to take the test, I’d always been on the side of enlightenment. I calculated that the trauma of finding out would be offset by the satisfaction of being able to make informed decisions about my life.

I thought taking the test would be like finding out the weather before you go on holiday. If the outlook was gloomy, at least I’d know what to pack. In reality, it was more like finding out there was a bomb on the plane when you were already airborne. I felt impotent and envious of the ­uninformed majority. I wished I didn’t know.

Thoughts of suicide offer relief, at first:

My first suicidal thought was a kind of epiphany – like Batman figuring out his escape from the Joker’s death trap. It seemed very “me” to choose death over self-delusion. Ah ha, I thought. For the first time since the diagnosis, I slept through the night.

I was shocked to read the figures for HD-related suicide. One in four people with the illness tries to kill themself. I was surprised it wasn’t more. Rationally, you would have thought that everyone with the condition would realise the futility of continuing. Yet three-quarters of sufferers ­carried on. Why? Had they been duped by family members into believing they were not as far gone as they felt? Or were they falling for some ­misplaced belief in the sanctity of life? Their ­decision to cast the destruction of their ­identity and descent into madness as a challenge rather than a disaster seemed irrational, yet weirdly threatening.

Raven is familiar with the euthanasia/assisted suicide movement, listing their rationales for helping people like herself (or the one she will become) kill themselves.  Eventually she analyzes them to the point of dissection, which paints a less than pretty picture of the arguments.

While Raven’s thoughts centered on suicide, her husband was of a different mind.  Mulling on that barrier and the fact that her own father’s late-onset condition is the only experience she’s had with the disease, she goes on a journey:

Apart from my dad, I’d never seen anyone with HD. His affected relatives were all kept under wraps. I became fascinated by Wexler’s report of a ­community of HD sufferers in Venezuela where, through an accident of history, HD has ­become endemic. Her account of the inhabitants of the fishing villages on the shores of Lake ­Maracaibo was shocking and compelling, and eventually I decided to go there myself. En route to Barranquitas, I worried my curiosity might prove ill-­advised. An article in Business Week said the town was “like something out of the Twilight Zone“.

What she found in the community around Lake Maracaibo affected her profoundly.  It also changed the way she envisions her own future.

It’s a long article about a long journey – both literally and figuratively. 

Please go read the entire article – now.  –Stephen Drake