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

Activist and Friend Judi Chamberlin Died This Weekend

blog recommendations, hospice, Judi Chamberlin, National Empowerment Center, Our News & Commentary Blog, psychiatric survivors

Late last Saturday night (January 16, 2010), Judi Chamberlin died at home, with family at her side.  This was not unexpected.  Judi has been receiving hospice services for over a year as a chronic lung condition worsened to the point where she decided to enroll in hospice services.  She shared her thoughts and experiences as a hospice patient on her blog, “Life as a Hospice Patient.”

Judi is best known as a pioneer in the psychiatric survivors’ movement – or “Mad Pride.”  Judi and and a handful of others grew a movement that challenged the notion that a psychiatric label was a justification for denial of basic human rights, and leaving individuals at the often not-so-tender mercies of mental health professionals.

Readers of this blog – especially outside of the disability community – might have noticed that NDY doesn’t devote a lot of discussion or recognition to psychiatric terminology.  We also (I hope successfully) steer clear of sanctioning forced psychiatric treatment as our answer to people with disabilities who want to kill themselves or want help doing it.

Judi Chamberlin had a lot to do with that approach.  Early on, she challenged those of us working in NDY to be careful not to answer one perceived injustice by advocating another.  She was right and I hope we’ve done our best to avoid those traps.

Like many people in and out of the movement, I will miss her.  It’s not that we talked that much, but I often felt her looking over my shoulder, making sure I didn’t screw it up.

For more information on Judi, including links to recent coverage about her, please visit the The National Empowerment Center.

There is a page devoted to all things Judi Chamberlin.  –Stephen Drake

A Disability Perspective on the Issue of Physician Assisted Suicide – Disability and Health Journal

American Public Health Association, analysis, assisted suicide, carol gill, diane coleman, Marilyn Golden, Mercatornet, Michael Cook, Our News & Commentary Blog, research

Several blogs wrote about this issue late last month when a press release announced the publication of an issue of the Disability and Health Journal dedicated to articles on assisted suicide and disability.  I held back from announcing the issue on this blog for one very important reason: A snafu resulted in the press release being issued before the journal in question was available online.

I’ve mentioned before that I love it when people save me time and work when it comes to writing.  Writer and editor Michael Cook has just published a summary of the contents of the journal issue on Mercatornet.com – along with some interesting commentary – in “Is Death Better than Disability?“:

When assisted suicide is legalised most of the people who will die are disabled. And American disability advocates take a very dim view of it. This is the theme of a hard-hitting series of articles in the latest issue of the Disability and Health Journal.

The editor, Suzanne McDermott, of the University of South Carolina School of Medicine, writes that she changed her own mind after studying the issue. At first she believed that assisted suicide was solely a personal autonomy issue. But eventually she was persuaded that it is at the heart of the movement for disability rights: “Almost all people at the end of life can be included in the definition of ‘disability’. Thus, the practice of assisted suicide results in death for people with disabilities.”

The special issue is a response to a controversial 2008 decision by the American Public Health Association (APHA) to back “aid in dying” (ie, assisted suicide). This slipped almost completely under the media’s radar, but it means that the official policy of the “oldest, largest and most diverse organization of public health professionals in the world” – 30,000 of them – is to support assisted suicide to the hilt. Or, as they prefer to call it in Oregon, “patient-directed dying” or “physician aid-in-dying”.

Rather than worrying about some ambiguous language in the Obama administration’s health reform legislation or scrutinising the publications of his health advisors for a few indiscreet phrases, the elderly and their relatives ought to be worried about the 30,000 members of the APHA. They are the ones who could be sitting on the “death panels”. The authors of the articles in the Disability and Health Journal certainly are worried.

The journal issue has articles by authors familiar to readers of this blog.  Marilyn Golden, writing with Tyler Zoanni, provides a public policy analysis of assisted suicide and its impact on people with disabilities; Carol Gill deconstructs and rebuts some of the favorite “straw man” arguments used against disability activists who oppose legalization of assisted suicide; and NDY founder and president Diane Coleman, who gives a point-by-point rebuttal to the “Autonomy, Inc.” brief in Baxter vs. State of Montana. “Autonomy” is a pro-assisted suicide group. Its board is mostly people with disabilities. The group only seems to surface only when called upon to sign onto legal briefs or make a statement to the press related to assisted suicide legislation.

All of these articles are well worth reading.  The authors bring a wide range of experience and viewpoints in their explorations of the issues surrounding assisted suicide and euthanasia.

On a cautionary note, I would hope that academics, scholars and other professionals connected to disability take the lesson of the American Public Health Association to heart.  Most of the members of of the disability group within APHA had paid little attention to the intricacies of the assisted suicide debate until it was shoved on their plate.  This is likely to be a scenario that gets played out time and time again unless there is renewed interest in the debate from disability advocates.

In the end, these highly talented, committed and caring people lost the battle after an initial victory of stalling a vote on the decision to endorse assisted suicide for a year.  They had to learn everything about the debate from scratch while their opponents were unified, well organized and well-connected.

The consequences of that disadvantage can be seen even now in Gloria Krahn’s description of the struggle within the organization.  Among other things, she describes a “compromise” that was reached over terminology.  At the insistence of the Disability  Section members, “Death with Dignity” was rejected as a term for assisted suicide, but “aid in dying” was put in its place.

Those of us familiar with the marketing efforts of pro-assisted suicide advocates know that “aid in dying” is the preferred term promoted by the groups like Compassion & Choices.  Rather than being a “compromise,” this was just one aspect of the overall victory.  (Obviously, though, the rejection of “death with dignity” was a victory of sorts since the term has a direct bearing on people with disabilities, who get to be viewed as “undignified.”)

I don’t want that last word to get taken wrongly.  These individuals in the Disability Section of APHA did the best that could be expected under the circumstances.  Like everyone else connected to disability, they’re confronted with critical issues commanding a great deal of attention, especially in the current economic meltdown.

It’s time to recognize though, that this is one more critical issue for disability advocates, and maybe moreso because of the economic meltdown when people are looking for guilt-free ways to eliminate society’s “financial burdens.”

To access the journal issue, and its articles, go to this site.  For this issue only, there is no registration required.  It’s fitting, I think, to make a disability-themed journal issue so easily accessible.  –Stephen Drake.