Monday, January 26, 2009

The Diving Bell and the Butterfly

I will say, with some shame, that the book The Diving Bell and the Butterfly has been near the top of my need-to-read list for some time, but I haven't ever gotten around to it. When I heard they were making it into a movie, I was very excited. Watching the movie is just as good as reading the book, right?

In case you're not familiar, The Diving Bell and the Butterfly (Le Scaphandre et le Papillion) is a book written by Jean-Dominique Bauby. Bauby suffered from a stroke and developed locked in syndrome. The only part of his body not paralyzed was his eye (one of his eyes had to be sewn shut). He communicated entirely by blinking. His caregivers developed a system in which they recited the alphabet (in order of most to least commonly occurring) and he blinked when they said the right letter. He wrote an entire book about his experience with just one eye.

The movie starts when Bauby first awakens and is trying to figure out where he is and what is happening. When he first finds out the extent of his injury, he wants to die. He is filled with regrets about his life. A recurrent theme in the movie is Bauby imagining he is trapped in a diving bell.

He then realizes that his eye isn't the only part of him that still functions. He still has his memory and his imagination. Through these he is able to escape from his prison, thus the name of the film.

This is an excellent story about someone managing to find meaning and purpose in a very bad situation. Beyond that, this isn't just a story about how it must feel to be trapped in ones own body. It is the actual account of what Bauby felt and what he experienced. Part of that is a complete loss of control. Just look at the TV. The annoying test pattern screen left on all night. The game he is watching turned off. (It made me think of some of the crazy things we leave on in dying patient's rooms. What if they hate old westerns or Law and Order? To my family and friends, please don't leave CNN on all day to cycle the same stories over and over, and any CSI should not come on in the room at all. Maybe TV preferences should be included on an advanced directive.) You don't often get first hand accounts of things like this.

Maybe I'm a bit biased but while watching this movie, I couldn't help thinking "Where's the palliative care team?" "Does he want to go back to the hospital?" "Why isn't anyone asking him?"

Monday, January 26, 2009 by Amber Wollesen, MD · 0

Monday, January 19, 2009

You're Going to Die

The amazing collaboration supported by the internet and user-created content never ceases to amaze me both in the inane and profound. The growth of video sharing sites has unearthed numerous media clips that would previously been lost to the ages or only held in the memory of a few people. A hat tip to Scott Lake for forwarding this clip titled "You're Going to Die" to me. the clip itself. I find it to be an exercise in opposites. Go ahead and watch it first and then I will demonstrate some off those points of opposition. (Note the meat of it doesn't start until after 40 sec in). (For email subscribers click the title above to go to the web page to view)

The narration is done by Vito Acconci , a NY-based performance artist, and the entire work is often credited to him, although the words were written by Timothy Furstnau, and the video itself was done by Dennis Palazzolo.

Furstnau explains on his site his "text uses a strategy employed in much of my textual work of exploring one monolithic idea ad nauseum bonum, but with a bit of a children’s story tone." I could not find any reference to ad nauseum bonum, so one assumes it means an argument by repetition for a good cause. The calling to mind a children's book also strikes an opposing conventional eisdom to the subject of death. The narrarator does set up a pretty even cadence as you listen to the video more.

Some of the text appears to be condescending to those who 'say nice things to you, or tell you wild stories.' But the narrator is only trying to demonstrate his world view which is true to him. The comments on You Tube devolve into: the existence of heaven, the atheist/agnostic vs. Christian debate, how this is depressing to watch. The great part about the dismissal of the 'stories' we tell ourselves, is the narrator usaully says 'But this is OK too."

The deep montone voice of Acconci is devoid of any emotion. He statements are meant to be as such to emphasize these are the facts. I would imagine most people see discussions about dying as emotional and here Acconci plays it to the opposite extreme.

In the end this potentially depressing video strikes a completely opposite tone by stating the knowledge of death makes life meaningful. Which is really the important message here. Some more learned readers might pick up on some Buddhist references in this clip, so feel free to post your insights in the comments.

Piece: You're Going to Die (2000) (video)
Text: Timothy Furstnau
Narration: Vito Acconci
Directed by: Dennis Palazzolo

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Monday, January 19, 2009 by Christian Sinclair · 1

Monday, January 12, 2009

Buried Alive

Researching for a former post on euphemisms and misnomers relating to death slang piqued my interest in the fear of being buried alive.

It seems that in the Victorian era, this fear was wide spread. Edgar Allen Poe wrote a story entitled "The Premature Burial", 1st published in Dollar Newspaper in 1844. It was a first hand account of a man with an intense fear of being buried alive, who actually has this happen. His story tells tales of people who've been buried alive. However unlikely these stories were in truth, the fear was very real...and perhaps for Edgar Allen Poe himself.

Besides literature themes abounding with this fear during the mid to late 1800's, the patent offices showed a spike of "Safety Coffins" during this time. They are all fairly similar, providing some way to either signal or escape the coffin. There's an article here listing all the patent descriptions with illustrations linked.

One of my favorites is this device by John Kirchbaum, from 1882. There is a bar actually placed in the corpse's hands when they are buried- so that if they awake they can turn the bar which turns a pointer in a glass box at the surface. I can just picture the grave yard attendant walking the rows looking to see if these pointers were now pointing to different numbers. The patent states that the device is used for “persons buried under doubt of being in a trance.”

There were editorials written in this time discussing the topic as well. In an 1893 issue of Science a man writes a personal account of an accidental burial entitled "Buried Alive: One's Sensations and Thoughts". Although not someone who was pronounced dead, but accidentally fell into a grave, readers would surely have walked away with this frightening experience on their mind.

In 1998 JAMA reprinted an editorial from 1898 that spoke about premature burial. The point of the editorial was to debunk the myths, helping us believe that the fear was public enough to lead a medical journal to address the issue. Part of the reassurance was that the average coffin had so little oxygen, that asphyxia would precede any return to consciousness. How comforting.

In case you thought this issue was long gone, consider an article published in the Journal of Palliative Medicine in 2006 entitled "Buried Alive; an Unusual Problem at the End of Life". In this case report the medical team dealt with a woman who was so frightened by the thought of being prematurely buried, that she requested immediate amputation of her hands at death, to ensure a "true" death. Read the article to find out the solution to this demand by family here.

While some fears of being buried alive may still exist, the height of social anxiety in this matter seemed to fade in the early 1900's as the practice of embalming became more widespread and technology began to provide methods marking the cessation of life.

Moorehead, WK "Buried Alive, -One's sensations and thoughts" Science Feb.3, 1893. Vol. 21:522 (p61)
The Journal of the American Medical Association (1898;30:273-274, reprinted JAMA 1998;279(3):182)
Polizzotto, MN et al "Buried Alive: an Unusual Problem at the End of Life" Journal of Palliative Care. Summer(2006). Vol 22:2(p117)

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Monday, January 12, 2009 by Amy Clarkson · 1

Monday, January 5, 2009

"Scrubs" and Palliative Care

I recently caught a very palliative care rerun of Scrubs that I had previously forgotten about. For those of you not familiar with this comedy, it premiered in 2001 and follows three interns and their friends through residency and now into their careers. In 2001, I was a medical student and I watched the show through my residency. It always seemed to capture some of the emotions I was dealing with at the time.

This episode entitled "My Five Stages" is about dealing with the death of a patient. In the clip below, the concept of the five stages of grief is introduced to a dying patient by a very interesting grief counselor. The episode goes on to follow the two doctors, JD and Cox, as they go through these stages themselves and come to terms about the loss of one of their favorite patients. Note the description JD gives about what it's like to die.

I have often thought Scrubs is the most realistic medical show. I never really got into any of the other medical shows because I hated all the drama. (How many bombings and shootings can one ER have anyway?) I know Scrubs is a comedy, so definitely exaggerated, but there is usually an element of truth in all of their humor. The situations and conversations may be over the top but I think it gets the emotional aspects right (always in a funny way).

Because it deals with the day to day struggle of the medical staff, there are frequent palliative care topics that come up. This scene from "My Long Goodbye" addresses the difficulty we have delivering bad news.

Another episode, "My Number One Doctor" deals with the ethical dilemma one of the doctors has when she discovers that her ALS patient had attempted suicide and was planning on trying again.

Scrubs is still coming out with new episodes but has changed networks from NBC to ABC. If you're interested you can see old reruns frequently on Comedy Central and other networks.

Monday, January 5, 2009 by Amber Wollesen, MD · 9