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One of our readers sent this link of an amazing website devoted to pain. Palliative Medicine is no stranger to pain and the Pain Treatment Topics site has a plethora of information regarding pain topics. What our reader pointed out, however, was the website's gallery devoted to patients' portrayals of personal pain.

The site is quick to point out that many of their pieces are borrowed from yet another website called the Pain Exhibit. The Pain exhibit is devoted to personal artwork related to pain. The brainchild of Mark R. Collen, who himself suffered years of under treated pain, he found that art did more to communicate about pain than words themselves. The site is organized into themes such as "Suffering", "God and Religion", and "Hope and Transformation" to name a few.

What I appreciate most about both websites are the inclusion of statements from the artists. It adds so much more to be able to read something from the person who created the piece and the one suffering from the pain.

I'm including just a few of my favorites here. But be sure to follow the links and do some exploring yourself.

Title: Self Portrait, Green Shirt by artist Sterling Ajay Witt.

Artist's comment: "Pain is the beginning and the end of every day for me. I have suffered from chronic pain for so long that I can't imagine life without it anymore. As by back pain increased and the brace came into my life, I found myself painting an increasing number of self portraits. Through them I try to express a feeling I cannot put into words, attempting to explain the torment I am going through. For me, creating art is just something I do to hemp me survive a life of constant pain. It's as if the paintings have become a record of my pain, giving a face to an otherwise faceless enemy." Copyright 2007 Pain Exhibit (PainExhibit.com)


Title: Chronic Pain - Life Distortion by artist Jenny Greiner

Artist's Comment: "I created my vision of what would represent my chronic pain. Beginning with the "eye being the window to the soul," I showed the clear, yet bloodshot eye, shedding the blood-stained tear. Then I realized that this whole living with chronic pain, is very disorienting. Things can start to spin out of control very easily. This represent my pain and the distortion and confusion it brings to my life." Copyright 2008 Jenny Greiner Http://www.drawthepaw.com

Title: CPII by artist Mark Collen

Artist's Comment: "This sculpture represents suffering from chronic pain." Copyright 2007 Pain Exhibit (PainExhibit.com)



This next piece below was actually featured on the cover of The Journal of Pain and Palliative Care Pharmacology (2007) Vol. 21 NO. 2 but is also found in detail at the Pain Exhibit website here.



Title: A Liar Is Not Believed Even Though He Tells The Truth by artist M.R. Shebesta

Artist's Comment: "The painting is a representation of the flesh being scraped from my body. Shards of metal appear to slide and cut into the fleshy oil painted canvas that is held into place by intricate lacing of fishhooks and taxidermy floss. The painting floats in the center of a custom wood frame similar to the visual effects of primitive tribes' techniques for cleaning and drying animal hides" Copyright 2007 Pain Exhibit (PainExhibit.com)

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I think I probably read more obituaries than the average person my age. They're mostly the obituaries of patients I have known. For the most part they are very similar. I've always appreciated the ones that are more creative. I've never thought of them as a form of art and I never really thought about who was writing them (don't families write them sometimes?). I recently discovered the Society of Professional Obituary Writers (SPOW), an "organization created for folks who write about the dead for a living."

I must admit, my first thought was, why? Is there a society for those journalists that write for every other section of the paper? But after perusing their website, their cause became more clear. "We want those who write articles about the recently deceased to regard obituaries as once-in-a-lifetime stories that should be researched, reported and penned with as much care and attention as any other newsroom assignment." Oh my! Well put. Could obituary writers be to journalism what palliative care is to medicine? I suddenly feel very sympathetic to the plight of the obituary writers.

Every year SPOW gives out awards for the best obituaries in different categories, such as Average Joe, Celebrity and even Broadcast media. Since I discovered their website, I've devoted some time to reading some of the award winning obituaries about people I've never met. I have been trying to appreciate them more as an art form, a work of nonfiction. I was amazed by how clear a picture some of these gifted journalists could paint even though I didn't know the subject of the articles.

Below is an excerpt from Fair Thee Well, Ex-Father-In-Law by Daniel Asa Rose (from Obit) which won for the Best Tribute/Memoir/Column (Long):

"So it's easy, is it not? To pick up where you left off. There is no earthly reason to stop communicating with a man just because you divorced his daughter, no reason in the world not to keep the dialogue going ad infinitum. Except one. For this bullying bruiser who was going to live to be 100 suddenly dropped, just like that. Before I could send off my package, this unstoppable man with his burly chest and nasty brilliance was cut down, the private nurse un-caught, the hurtful snare drum of a laugh shut down at last. I had meant to pick up where we left off: Now we were just leaving off. Wesley Love died, and what was music and what was not would have to wait some later debate.

Here's to you, ex-father-in-law. I'm sorry we never recognized each other for what we were. Probably you were not the ogre I thought, just a mortal straining to suck in your gut in your canary yellow La Coste shirt. I was just a kid trying to lock horns with one of the big guys. Why didn't we know that then? Why aren't we all more gentle with each other now?"

Although it's too long to post here, I appreciated Carol Smith's article (which won for Best Average Joe Obit Short) Dying vet planned a final mission.

So to all you obituary writers out there, my proverbial hat goes off to you. You do important work and I hope you have the appreciation and respect that you deserve.

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I came across this poem in The Pharos a few years ago. Dr Eugene Hirsch has been writing poetry since medical school. Although his background is in cardiology and geriatrics, He most recently has been teaching an end of life physician education program with residents and medical students in Pittsburgh. His teaching has enabled learners to reflect on their experiences in medicine and that of end of life care.

To the end of her life

Two flights up,
she cradled a swollen belly
in memorabilia,
in the bowels of her bed.

Her sallow face told me
how near to death she must be.

She paused and stared into space,
Asking not for medicine, but for prayers.
I led her to find those she knew.

I'd learned some, not others.
In my confusion, I searched
for a "likeness" of her God
(shaped with the palms of my hands)
to sit there beside her and smile. I led her
to tell Him what she wanted Him to know-
to take away her terrible pain,
to forgive,
to bless.

She wanted never
to be alone again, never
to die each day, never
to really die.

The poem describes an encounter, not unlike ones we've all had. A dying patient requesting a prayer. Instead of walking away the writer does the best he can. There is such honesty in the line "in my confusion I searched/ for "likeness" of her God". How true this is, for even if we attempt to join in the rituals of our patients, per their request, our attempt should be to find the likeness of their God. We know inherently that their comfort comes from their personal theology, and to bring maximal comfort we try to fit our words into their world view.

I love that his response then isn't to spout off his own words and prayers but to lead her to action. She is led to commune with her God, to ask, to cry out, etc.

At the end when the patient prays "never/ to die each day" I am struck with how deep her existential pain must be. I wonder how many of my patients feel as if the are dying each day, over and over again? And yet, she ends with the plea "never/ to really die", as if death will not bring the relief she is seeking either.

The skill in poetry is to take all of the emotions, thoughts, history and reality of an encounter and in very few words allow that situation to transcend to the reader. I'm sure the story of this moment could have been written out in prose, taking pages to recount. Yet, Dr. Hirsch leaves us with such a precise feeling of this patients struggle in just 22 short lines. Well done!

PDF version: Hirsch, EZ "To the End of Her Life". The Pharos. Winter 2007, pg 19

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In 2003, writer Joan Didion's husband died suddenly of a heart attack while sitting down for dinner. Didion wrote The Year of Magical Thinking detailing the year that followed his death. The book starts with the first words she wrote after her husbands death.

"Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends.
The question of self-pity."

While grieving for the loss of her husband, Didion is also dealing with the critical illness of their only child who is in the ICU with pneumonia. They had, in fact, just come back from visiting her when John had the heart attack. Quintana's lengthy illness is a subplot throughout the book. While the illness definitely complicates Didion's grieving, it also seems to serve as a distraction. (Quintana died shortly after the book was published.)

Didion seems to describe every impulse and emotion of the first year of grief.

" ...Grief has no distance. Grief comes in waves, paroxysms, sudden apprehensions that weaken the knees and blind the eyes and obliterate the dailiness of life."

She weaves memories of her life with John and Quintana together with her present day grief in a way that could have seemed choppy if done by a lesser writer. Didion's account flows very naturally as if we were reading straight out of her mind. It feels that honest as well.

She has a remarkable insight into her own thoughts and feelings, her magical thinking. Below, she describes the painful process of clearing out her husbands things.

"I stopped at the door to the room.
I could not give away the rest of his shoes.
I stood there for a moment, then realized why: he would need shoes if he was to return.
The recognition of this thought by no means eradicated the thought.
I have still not tried to determine (say, by giving away the shoes) if the thought has lost its power."

As I read Didion's book, I couldn't help but think that writing it must have been painful but also like therapy for her. A way to process through her thoughts and her grief. While some may come off as self-absorbed, writing a book entirely about ones grief experience, I think Didion comes off as generous for sharing something so personal with us. At the end, she doesn't offer any answers to her grief, no big bright light at the end of the tunnel, but sort of sums up her life with John.

"I think about swimming with him into the cave at Portuguese Bend, about the swell of clear water, the way it changed, the swiftness and power it gained as it narrowed through the rocks at the base of the point. The tide had to be just right. We had to be in the water at the very moment the tide was right. We could only have done this a half dozen times at most during the two years we lived there but it is what I remember. Each time we did it I was afraid of missing the swell, hanging back, timing it wrong. John never was. You had to feel the swell change. You had to go with the change. He told me that. No eye is on the sparrow but he did tell me that."

References: The Year of Magical Thinking. Joan Didion. 2006.

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SURVEY CLOSED WED MARCH 18, 2009

Results posted on Pallimed Main blog in April

(re-posted from the main Pallimed blog)

Dear Pallimed Readers,

Thanks so much for joining us here at Pallimed. Last January we had our first annual survey to get some more structured feedback from the readers. (Here are the results from the 2008 Pallimed Readers Survey.) This year we ask you for a few minutes to complete this year's survey. (Last year the survey took less then 6 minutes on average.)

It is even shorter then last year's, since we took out some questions! Blame it on the economy, we cannot even afford more questions this year. Drew, Amber, Amy, Tom and I appreciate your feedback very much.

The survey is open for just one week. Please complete it only once. It is the same survey regardless of which blog (Main, Arts, Cases) you access it from.

We will not sell your information. We pledge not to bombard you with survey pop-ups, or separate emails asking you to finish this. It is a voluntary survey.

We are expecting to provide our readers with some feedback from the survey by the end of March.

Thanks,

Christian Sinclair (on behalf of Drew, Amber, Amy, Tom and Pallimed)

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There are many movies out there with palliative themes, as we can attest to with our top 10 movie post, which garnered much comments. One of my all time favorites, also made number 1 on Amber and I's original list; Wit.

I first saw this movie in medical school. In fact, according to the IMDb, this movie is known for being shown at medical schools as an example of how not to practice medicine. Also, the plot deals with dying, so it's all the more relevant to those of us who care for dying patients.

The plot is this: An English lit prof., known for her high expectations and little compassion in the classroom is diagnosed with ovarian cancer. The movie shows her experiences from diagnosis to death. Her last weeks are spent in the hospital, undergoing rigorous treatment. She is alone, except for the nurses, attending and fellow who treat her. Through her reflections and memories there is a definite parallel between her heartless days teaching and the heartless medical system she is now in.

The movie is based on a play by Margaret Edson and this monologue, play-like background is the inspiration for the screenplay, making it unique. The soundtrack is simple with only 4 pieces listed. My favorite piece is "Speigel im speigel" or 'Mirror in a mirror' by Arvo Part. It is played often in the movie, the simplicity of the cello and piano is also melancholy, leaving the viewer with the feeling of being alone, just as the main character is.

I love this movie not just for it's ability to pierce me with its sad realities of the medical world, but also for it's subtle sub theme about death. All through out the movie we are bombarded with a certain text from a John Donne's Holy Sonnet 10. The main character was a John Donne expert and specifically recalls the punctuation differences pointed out at the end of this poem by her mentor.

The last line of the sonnet entitled "Death be not proud" is "And death shall be no more, Death thou shalt die." The version our main character had found was different "And Death shall be no more; Death thou shalt die!"

Here is the discussion with her mentor on the punctuation differences, talking about the version with the comma:
"Nothing but a breath, a comma separates life from life everlasting. Very simple, really. With the original punctuation restored Death is no longer something to act out on a stage with exclamation marks. It is a comma. A pause. In this way, the uncompromising way one learns something from the poem, wouldn't you say? Life, death, soul, God, past present. Not insuperable barriers. Not semi-colons. Just a comma. "

If only the main character's death could have been so simple. Yet of the many ways death is portrayed in films, her portrayal is haunting. No one should have to die like this, without dignity and respect (ignoring her DNR)...alone in a hospital. Yet it is haunting, because of how real this type of death is. It is the antitheses of a palliative care death.

I've included two clips from youtube. (For email subscribers click the title above to go to the web page to view) In the first, our main character (Emma Thompson) is thinking out loud. It's a lovely introspection of what's she's dealing with. The second is a beautiful moment when our character actually gets her one and only visitor, her old hard-nosed mentor. The simplicity of human connection in the clip, with the Arvo Part soundtrack accompanying, makes me tear up every time.





I'd also suggest reading John Donne's Holy Sonnet 10 "Death be not proud" (This version uses a semi-colon and no exclamation!)

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This is not what I originally intended to post this week. Just something I felt like I needed to write today. Some self care.

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The beauty of art is its uniqueness. Art is by definition an expression of the artists' ideas, emotions, ideas and thoughts. Taking this in mind I thought it would be interesting to take an idea and include a myriad of different works expressing that same idea. We'll likely do this from time to time on this site. It will be like our own themed gallery exhibit. For this first art group I've chosen the title "Last Breath" (with occasional variations).

All these works were found by browsing the internet, and often it is only the title and work itself that I have been able to find. This leaves the interpretation completely to our imaginations.

This first piece on the right "Last Breathe"(1989) is by Petar Mazev (1927-1993). He is a Macedonian artist who did this piece during a time of self-isolation, grieving the death of his eldest son. This, more than the other pieces, seems violent. The colors are very bold and to me I see a wolf or something attacking a figure on the left.

Cathy Woo is a fine artist who lives in Seattle. Her website states that her paintings "reflect a lifetime spent walking outdoors". This piece to the left "Last Breath"(2007) is of rice paper on plexiglas. The circle reminds me of a mouth, or the breath itself, shaped like a ring of smoke.

From the opposite coast is Helen Hawes who also finds inspiration from nature. She lives in Vermont and her website says she is pursuing an advanced degree in Walking in the Woods. Her work to the right, "Last Breath" is part of a series called "Earth and Sky Lineage". I appreciate the face, expelling that last breath. I see the blue parts in the lighted area as the actual last breath. Though representing more than air perhaps?

I found this work to the left on an Austrailian arts site. The piece entitled "Last Breath ??" is by artist Adrienne Conway who won an award for this piece. Reading the judges comments for the award I realized this was actually depicting a whale's breath. When I think about a visual representation of breathing, there is nothing so magnificant as a whale's breath.

Contrast Adrienne's piece visually to the digital art piece by ISO25 on the right. From a compostition stand point they are similar. The center is filled with the idea separated by a void of blackness. Both depicting the concept of breath, however, one is an enormous last breath, giving the impression of loudness, while the other a tiny ember of a breath. ISO25 wrote below his piece "Last Breath" the following: "ashes to ashes/dust to dust/the body is mortal/the spirit eternal". His piece along with comments was found here.

And finally 2 other similar pieces from nature. The first on the left and on top is a photographic art piece by Colin Shafer called "Last Breath" taken in Mount Kinabalu, Malaysia. The artist writes "An old tree reaches out into the clouds on this great mountain". Very similar to this is Rahul Chandel's digital art piece "Last Breath" to the left on the bottom. Interesting that both artists have used the idea of a barren tree and cloudy skys to represent the ending of life, or the last breath.

Collectivley all 7 of these pieces bear the same title, yet they are conceptually quite different. Ironically, I think if I entered an exhibit hall with each of these pieces and no titles, I'd have a hard time looking at them all and coming up with "Last Breath" as the theme.

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In 1918 when the influenza epidemic hit Philadelphia, Isaac Starr was a third-year medical student. With so many medical practitioners away in the army, the third and fourth year students were called upon to act as nurses and interns. Starr wrote about his experiences in an essay that was published in 1976 then republished in 2006 (free PDF) in the Annals of Internal Medicine. (Picture: Emergency hospital during 1918 influenza epidemic, Camp Funston, Kansas)

As a third-year, Starr was assigned duties of head nurse. The epidemic started mildly with most of his patients admitted with just a febrile illness because their families were all ill and there was no one at home to care for them. This soon changed. He vividly describes the progression of the illness.

"As their lungs filled with rales the patients became short of breath and increasingly cyanotic. After gasping for several hours they became delirious and incontinent, and many died struggling to clear their airways of a blood-tinged froth that sometimes gushed from their nose and mouth."

The physicians he had supervising him were mostly retired specialists. "I recall a laryngologist who seeing herpes labialis on a gasping cyanotic patient was much interested in it and prescribed application of guaiac." He was taught "cupping" by another physician. He was reprimanded for not leaving the windows open as this was the practice of the time for treating pneumonia (perhaps treating the dyspnea associated with it?).

Starr had few therapeutic options available. "When the pulmonary froth endangered life I gave atropine; when the patient was moribund and the pulse weak I injected camphor in oil." At the peak of the epidemic, the death toll was over 25% per night.

Starr wrote his account of the 1918 epidemic to share his experiences so that we might be better prepared if this should happen in the future. In reading his essay, I can't help feeling the helplessness they must have been experiencing. To see such death and suffering and know that there wasn't much that you could do to make it better, or even slow it down. I can't imagine what it was like to be still in medical school and charged with caring for a ward of dying patients. Even with all our medical advances, I find Starr's descriptions to be terrifying. It seems that an influenza epidemic is just as much a threat today as it was in 1918.

Reference: Starr, Isaac, Annals of Internal Medicine 2006; 145:138-140

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We've taken time in past posts to explore composers who have used their music to explore themes of grief in their personal lives. This grief is usually directed at someone close who has died, or the composer's own mortality as they are diagnosed with a life limiting illnesses. It is rare that composer's have been lucid enough on their deathbed to actually compose a piece related to their dying experience.

Johann Sebastian Bach, is one such rarity. Born in Germany in 1685, JS Bach is considered one of the greatest composers in Western tradition. He began his musical education at the age of 10, when he moved in with his eldest brother, after both of their parents died.

His composing style, in the Baroque form, was considered "old fashioned" by his contemporaries. However, his skill as an organist helped gain him fame while he lived. His most well known works include the Brandenburg concertos, the Well-Tempered Clavier, Mass in B Minor and Toccata and Fugue in D minor.

Medical historians have pieced together a probable medical course through examination of letters, portraits, etc. It seems that Bach had a minor stroke around 1746 which contributed to some facial palsy and vision loss. By the end of 1749 he was no longer writing music but dictating all of his compositions. He had 2 eye operations in March and April for complete blindness, which were unsuccessful. In mid-July 1750 he had yet another stroke with a complicating pneumonia. In the hours prior to his death he was said to have regained his complete vision (or perhaps was "seeing" the unseen as often occurs in the last days of life). He died July 28 1750 at the age of 65.

His last composition was completed on his deathbed. He was blind, had just had yet another stroke, suffering respiratory complications from the CVA, and yet lucid enough to somehow communicate his final piece. The piece, started prior to the stoke, was a chorale prelude first known as "When we are in Deepest Need". It was in those last days that he finished it and changed the title to "Before Thy Throne I Now Approach."

The piece in itself isn't complex like a multi instrument symphony. The lone organ plays both melody and harmony. Listen to either the entire 4 min piece on YouTube below, or the video clip of just the ending. In the short clip I've added my own thoughts on what's being heard in the melody and harmony.






References:

Breitenfeld, Tomislav; Solter, Vesna Vargek; Breitenfeld, Darko; Zavoreo, Iris; Demarin, Vida (2006-01-03). "Johann Sebastian Bach's Strokes"Acta Clinica Croatica (Sisters of Charity Hospital) 45 (1)
http://en.wikipedia.org/wiki/Johann_Sebastian_Bach

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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?"

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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.

Anyway...to 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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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.

References:
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) http://www.personalmd.com/news/a1998012212.shtml
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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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.

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Married couple Ed Kashi, a photojournalist, and Juli Winokur, a filmmaker/writer, spent years working on their book "Aging in America: The Years Ahead". The book and photos, worthy of viewing, deal with the challenges facing the population over 65, but is also about America's collective denial of aging. Both agree that it was their experience with the project that helped them cope when they found themselves personally affected by the reality of aging in their own family.

Julie's father, diagnosed with end stage dementia, got to a point he couldn't live alone. The couple, with their 2 kids in tow, opted to move from California to New Jersey, so they could become his full time caregivers. They became one of the estimated 15 million known as the sandwich generation, taking care of both their own parents and children at the same.

They spent the 18 months he was in the home documenting the experience in film and photos. They offer a 2 part short documentary entitled "The Sandwich Generation" that can be viewed freely online. Part I is 11 mins and takes place in the first months of his arrival. Part II is 16 mins and summarizes much of Part I, but then goes on to show a wiser, more tired family.

This is one of Ed Kashi's photos from the movie of Herbie Winokur, who died Jan. 5, 2008 in the family's home.

I was struck by three things in this wonderful documentary. In Part I, Herbie is taken to the hospital after a fall at home and seems to have a prolonged stay, meanwhile deteriorating. The family becomes restless with the hospital and at one point Ed Kahsi says "Get him home, make sure he eats and is stimulated, who cares what the diagnosis is". I thought how true this sentiment can be with the people we work with. There comes a tipping point at times when it's more important to be home than to have all the why's answered.

There is also a lovely contrast seen between part I and II with the granddaughter. She speaks in part I about how good it is that "poppy" is living with them. But in part II says to her mother "Should I be honest? Because I wasn't in the first part." Her mother then draws out some resentment and awareness of "how much things changed" in the household when Herbie came to live.

Finally, an emotion caretakers often have, frustration and anger comes out with Ed on a day that Herbie gets confused while out on a walk and doesn't want to go home. Ed gets in his face, frustrated that he doesn't remember the hired caregiver who's worked with him for 2 years. It's a very honest moment, and a good reminder on how tough care giving can be.

If you have the time, check out the links for the movies. I think it's a realistic look into care giving and causes me to be more aware of the stresses the families that I see everyday are going through.

References: The non profit group that houses much of Ed Kashi and Julie Winokur's work "Talking Eyes Media" at http://www.talkingeyesmedia.com/
Part I can be seen at http://www.mediastorm.org/0009.htm
Part II can be seen at http://assets.aarp.org/external_sites/caregiving/multimedia/LifeWithHerbie.html

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The worst thing about death must be the first night.—Juan Ramón Jiménez


Before I opened you, Jiménez,
it never occurred to me that day and night
would continue to circle each other in the ring of death,
but now you have me wondering
if there will also be a sun and a moon
and will the dead gather to watch them rise and set
then repair, each soul alone,
to some ghastly equivalent of a bed.
Or will the first night be the only night,
a darkness for which we have no other name?
How feeble our vocabulary in the face of death,
How impossible to write it down.
This is where language will stop,
the horse we have ridden all our lives
rearing up at the edge of a dizzying cliff.
The word that was in the beginning
and the word that was made flesh—
those and all the other words will cease.
Even now, reading you on this trellised porch,
how can I describe a sun that will shine after death?
But it is enough to frighten me
into paying more attention to the world’s day-moon,
to sunlight bright on water
or fragmented in a grove of trees,
and to look more closely here at these small leaves,
these sentinel thorns,
whose employment it is to guard the rose.

Someone (to give credit, Christian) recently forwarded me a link to this poem by Billy Collins from The Good Death blog. The poem was inspired by the line "The worst thing about death must be the first night." from Spanish poet Juan Ramon Jimenez.

In Collins' poem, he wonders if night and day continue after death or if that first night is forever. Do we continue on after death, much as we did in life, or is death "a darkness for which we have no other name"? When I read The First Night, I wondered if Jimenez meant that the first night was the worst for the deceased or the worst for those left behind. It made me think more about grief and the lives that have to continue after a loss. Can my life really go on without him/her in it?

Collins expresses a lack of words when trying to describe death. "[H]ow feeble our vocabulary in the face of death". I think he means there are no words profound enough to describe it, nor could we even know what we are describing. There is so much we don't understand. "[H]ow can I describe a sun that will shine after death?"

The last few lines of the poem, remind us to stop and enjoy life and notice the "small leaves" and "sentinel thorns" that are part of life. Is death the thorns that guard the rose (life?)? Could we really appreciate the good times if we didn't have the bad as a point of reference? Could we really appreciate life if we didn't have death?

Poems are so open to interpretation. Does anyone hear something different when you read this poem?

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Coming across a piece entitled "Call of Death" (1934/5 ) by Kathe Kollwitz (at bottom of post), I was struck by the earnestness of the sketch. Surely, I thought, this is from an artist who's experienced death and grief herself. My look into her life confirmed that she spent much of her life as an artist trying to portray grief.

Kathe was born in a province of Prussia in 1867. She was said to be affected by anxiety as a child after the early death of her younger brother. With the encouragement of her father she immersed herself in art at the age of 12. She was married at 24 to a physician who served the poor of Berlin. Her two sons Hans and Peter were born in 1892 and 1896. Her inspiration originally came from the struggles of the peasants that she lived amongst. To the left is the etching "Death(Poor Family)"(1900) as an example of what she witnessed on a daily basis.

In 1914, her 18 year old son Peter was killed on the battle field during WWI. She subsequently entered a time of deep depression. She worked for several years through different media, attempting to represent her grief. Lithography was not satisfying, so she moved to wood cut which allowed her to slash and gouge the wood, heightening the emotion of grief. She also worked during this time on a monument for her son, which now stands above his grave in Vladso, Germany. To the right are the three different media; lithograph, wood cut, and stone and three different themes relating to her son's death. In order are "The Parents"(1919), "The Parents (War)"(1921), and "Grieving Parents"(1925-32).

Kathe's charcoal drawing "Call of Death"(1934/5) was one of her last works of art completed. The features of the woman are of the artist herself. I am struck that after all her works showing hers and others grief, how ready she seems when death calls her. Her look over her shoulder is one of expectancy and perhaps relief.

Kathe died 2 weeks before the end of WWII. Gerhart Hauptmann, Nobel Prize winner in Literature 1912, said of Kollwitz "Her silent lines penetrate the marrow like a cry of pain; such a cry was never heard among the Greeks and Romans."

To explore more of her works check out these two websites with many pieces: A_R_T and Artnet. Also, you can see a short 1 minute movie clip from a documentary on her life from the Roland Collection.

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After re-watching this movie today, I had to go back to our original Top 10 Palliative Care Movies post to remember if we had included it in our list. We didn't, but maybe we should have.

The Savages is an independent film released in 2007 and has been called a "coming of maturity" story. It's a very real picture of a family dealing with the illness of a parent. Siblings Jon and Wendy Savage are busy with their own complicated lives when the death of their estranged father's girlfriend forces them to back into his life. Their father, Lenny, is diagnosed with dementia and Parkinson's. In a short time, they have to move Lenny from Arizona to New York and find a nursing home to place him.

Below is the movie trailer.

One of my favorite scenes is when Jon and Wendy have to discuss advanced directives with Lenny.

Wendy: Okay. In the event... In the event something should happen- Um- How- How do you want us to... Um-
Jon: Dad, what if you were in a coma? Would you- would you- would you want a breathing machine to keep you alive?
Lenny: What kind of question is that?
Jon: It's a question we should know, in case.
Lenny: In case what?
Jon: In case something happens.
Wendy: Nothings gonna happen. Right now. Nothing new.
Jon: Right, it's- it's just procedure. It's something they want for the records.
Lenny: Who?
Wendy: The people who run the place. The Valley View.
Lenny: What the hell kind of hotel is it?

Jon and Wendy sort out their own social lives while, for the first time, having to take on the responsibility of caring for their aging parent. I found that this movie hits pretty close to the mark of the normal American family. It's very realistic how Jon and Wendy deal with a crisis in completely different ways, one more logical, one more emotional. Wendy has a lot of guilt over placing Lenny in a nursing home, even though she know it's really the only choice. Below is Jon talking to Wendy as she tries to get Lenny into a more exclusive nursing home.

"...You are the consumer they want to target. You are the guilty demographic. The landscaping, the neighborhoods of care; they're not for the residents, they're for the relatives. People like you and me who don't want to admit to what's really going on here...People are dying, Wendy! Right inside that beautiful building right now, it's a f***ing horror show! And all this wellness propaganda and the landscaping, it's just there to obscure the miserable fact that people die! And death is gaseous and gruesome and it's filled with shit and piss and rotten stink!"

I was struck by all the losses Lenny experienced: his girlfriend, his mental faculties, his independence, his dignity, his privacy... Another very realistic aspect of the movie.

On a side note, the nursing home staff has a very interesting prognostic sign. Apparently toes curling under means someone only has a few days left.

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At a gathering recently, mentioning someone's wake that was upcoming, a friend blurted out, "Doesn't that term come from the superstition that someone could "wake" up, having been mispronounced dead?" As the supposed expert on death lore, all turned to me for the answer...which I really didn't know. Thus, a post was born. I thought we could look at some common phrases we use and find out what's really behind it all.

Let's start with the Wake Ceremony. This is a time before the burial that friends and family gather. Originally in the home of the deceased, though now often in funeral homes and churches. Although sometimes only a viewing, it is often a mixture of mourning and celebrating the life of the deceased. Why do we call it a "Wake"? The word derives from anglo-saxon origins meaning "to watch or keep vigil". It was important to have someone with the body, partly to protect from animals and other pests, as preservation methods weren't like they were today. As for this idea that "wake" derived from a belief that someone might wake up - NOT TRUE.

This idea of being mispronounced dead must be widley prevalent, with the belief that the term Dead Ringer comes from a string attached to a bell placed on a corpses foot or wrist that would ring if the person was really alive. This is another misnomer and is NOT TRUE. Dead Ringer is used to mean "exact duplicate", but what's the root of the words? Ringer was first used in the late 1800s to describe a horse used as a substitute to fool bookies and throw races. As for the word dead, well it does have more meanings than the cessation of life. Another meaning for dead is exact or precise, as in "he's a dead shot". So in this case the word dead ringer literally means exact duplicate.

Along those lines, people often think that the term Graveyard Shift comes from people actually sitting aroung waiting for one of those bells to ring indicating someone was buried alive. Again, NOT TRUE. There were caretakers for the grave sights, but their watchfulness was for grave robbers.

Here's an interesting one; Kick the Bucket. This is often thought to have roots from the idea that someone would stand on a bucket to hang themselves and need to kick the bucket out of the way at the end. NOT TRUE. The word bucket actually used to mean beam or yoke, to carry items/animals. In fact, when animals were hung to slaughter, the wood frame used was called the bucket. Often as the animals died, in their final spasm they'd quite litterally "kick the bucket".

Ever wonder about Six Feet Under ? Well this one is TRUE. We often use the phrase as a synonym for death. Most believe it comes from the practice of burying people six feet underground. But where did it orginate from? It seems like this one came from the time of the plague. The Lord Mayor of London set rules with the outbreak of the plague in 1665, stipulating that bodies must be burried six feet underground to reduce the spread of disease. Is this still true today? Absolutly not. Each state sets it's own rules now on minimum depth to bury. For example, in California, you only need 18 inches of dirt.
Let's conclude with the Tombstone. I was surprised to find that many believe the origin of the tombstone came from a fear of spirts/ghosts. In order to weigh the soul or ghost down, heavy stone markers were used...leading to the modern day tombstone. Sorry to say, this is NOT TRUE. The idea of marking a grave with stone actually appears early in the bible. In the very first book, Genesis 35:20, Jacob erects a memorial to his deceased wife in the form of a pillar. This idea of honoring the deceased with a marker of some sort in quite ancient and prevelent in most societies.

If you know of more quirky lore, please share. Otherwise it's up to us to set the story straight when we hear these urban legends.

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While looking through recent articles in Obit Magazine, I came across one about a cancer blogger, Leroy Sievers who died August 15, 2008. (I think blogging is a form of contemporary literature that we haven't brought up yet.) Sievers, who was an executive producer for Nightline, began blogging about his cancer experience in 2006 when he started writing commentary for NPR's Morning Edition.

Sievers was diagnosed with colon cancer about 4 years earlier. In 2005, he was found to have cancer in his lung and brain and was given 6 months to live. He participated in a Discovery Channel documentary entitled "Living with Cancer".

He used his blog to discuss his experiences with the medical community and how his diagnosis effected him emotionally and physically.

"My doctors are trying to poison me. Oh, they have the best intentions. They call the process chemotherapy. The idea is to poison the body enough to kill the cancer, but not quite kill the patient. Best I can tell, it's a difficult line to walk. " May 11, 2006

His commented on a lot of the daily issues and life changes that his cancer brought. Some of these topics included outliving his prognosis, keeping clean, giving up his beloved Jeep that he could no longer drive, and making the decision to sign on to hospice. The post below describes another big change.

"It pretty much fills the room. It took four of us, actually five of us, to get me into it.
It's my new bed.
The only really scary part was when I slipped and almost fell on the floor.
The bed's electric. It lets me do things I couldn't do before.
But let's be honest, too. It's a hospital bed. It was not an easy decision to bring it into the house.
But here I am, in it.
Cancer World brings another change." August 11, 2008


Sievers' wife Laurie Singer continues his blog.