Tweet

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)

Tweet

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.

Tweet

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

Tweet

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.

Tweet

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)

Tweet

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!)