Cell 2 Soul: The Humane Health Care Blog

Caregiving's Imperative

Arthur Kleinman's recent Perspective piece in the New England Journal of Medicine deserves a wide audience.  Unfortunately, full access is open to only NEJM subscribers or those affiliated with academic institutions.  If, after reading the following quotes, you want to read the entire article, please email me and I'll send you a copy.

picture from http://kennonsburgumc.com

"Modern medical practice's greatest challenge may be finding a way to keep caregiving central to health care. The moral core of medicine may seem abstract, until you see health professionals passionately struggling to be useful, compassionate, responsive, and responsible while working with the indifference of bureaucratic rules, the cold counting and costing of institutional audits, and hard-to-balance personal demands on their time and concern. 

Looking at medicine [as a caring vocation] reinforced my belief that the structure and demands of medical schools and hospitals create obstacles to caregiving. How to revivify caregiving in medicine became the issue. Teaching about illness experiences remains important. Yet the moral–emotional core of those experiences deserves greater primacy — as does the social suffering that affects everyone, but especially marginalized people already injured by poverty, isolation, and other forms of structural violence."

From Illness as Culture to Caregiving as Moral Experience
Arthur Kleinman, M.D.
N Engl J Med 2013; 368:1376-1377April 11

Dr. Rakesh Biswas alerted us to an article in the Stanford Medical Alumni Magazine about Kleniman and his work -- especially his recent epiphany.  See:  Medicine: A Love Story.  The past few paragraphs are especially important.

Far Side of the Styx

"Soon your life will have flown like a bird from a branch!"

"A man in your fifties—and you still would be young?"  – Yehuda Halevi

You can cry in heaven if someone kills you against your will
You can take time to mourn before visiting your loved ones
back on earth to tell them you're ok.  It takes time
to come to terms with death even on the far side of the Styx
if it is you who has been killed.  "I wouldn't have it
any other way" reserved for those whose deaths were innocent

I have a lot of company here, you say, now that I have accepted my fate
kept apart ‘til then lest the other souls start remembering. . .
and couldn't leave the clouds to comfort you myself in pain
not of the bodily kind but of the soul but now I count my blessings

too and not just the mistakes and carelessness that brought me here
no more pain and I can move freely about the earth without my power chair
I don't have to hold on for the next medication or nurture false hope

It's done.

– Martha Deed
The Last Collaboration, p. 197

See PDF:  Download Martha Deed Selected Poems

The Last Collaboration, a chaos narrative, is a re-construction of Millie Niss's life and death in a community hospital ICU. Because Millie was intubated but alert, her side of every conversation was recorded in a series of notebooks she sent home with her mother, Martha Deed. Millie's notes, emails, the daily diary she sent home, and posts to her blog are set into frames constructed from her mother's log.  The Last Collaboration is a powerful document from which we can all learn.

Illness narratives (pathographies) may be broken down into three categories:  quest, restitution, and chaos stories.  The latter is the rarest and perhaps most important since there is much to learn from our mistakes.  The two former ones can be “feel-good” narratives.  For more on these types of narratives see: “From narrative wreckage to islands of clarity,” a fine article from Canadian Family Physician.  The Last Collaboration is a true “chaos story” and a narrative we can all learn much from.

 

Drugs, Death and God

by Chelsey Bartlett

(you can also read the PDF:  Download Drugs, Death and God

There are three standard reasons college students want to become a doctor: money (because they haven’t checked out how much you can make as a contract lawyer), a more-than-lukewarm interest in science, or the cliché tagline: “Because My Parents are Doctors”, which doesn’t really explain anything. Some common “exceptions” exist as sub-reasons, including the desire to help people while simultaneously having a more-than-lukewarm interest in science or “Because My Parents are Doctors and are Forcing Me to Be Pre-Med upon Threat of Disownment.” I find my motive to be a bit more distinctive than the typical ones: everything boils down to me being on my deathbed under the influence of hallucinogenic painkillers while God was giving me a sign that I am meant to be a doctor.

I’ve never been particularly overzealous in my religious pronouncements, but even as an 8th grader I knew that when God gave you a signal, He meant business. The end of middle school was approaching and the customary set of flu-like symptoms began bombarding me. My physician recommended, in a rather blasé fashion, to take some Ibuprofen and get more sleep, so I did. The symptoms stayed. And then got worse. My fever regularly spiked to 104 and higher, and I couldn’t even keep tepid Sprite down. Mom took me to my doctor again, and this time he realized his mistake: this was no snotty, vomity flu but a case of pneumonia gone sour.

My right lung had been completed infiltrated by the gooey crust that is pneumonia and my left lung was showing initial signs of surrender as well. The small-town hospital in which I helplessly dwelled for days was no match for this angry battalion of germs, so some nice Australian pilots flew me in a helicopter to the Children’s Mercy Hospital an hour away. I arrived dazed and surrounded by a large group of interns in the ICU, much like in Gray’s Anatomy. They wanted to put me on a respirator because my oxygen saturation was so low, but I screamed and cried in panic at the foreign machine and was eventually just given a giant oxygen mask instead. Crazed kids apparently aren’t worth the effort.

After the interns left, I calmed down enough to realize that the strangest knowledge had come over me. I knew that if I fell asleep at that moment, I could choose not to wake up again. I was legitimately dying. Of course, having been pumped full of drugs at the time, I instantly fell asleep at that precise instant of revelation. When I groggily began to awaken, everything was different. Ethereal children ran into the room carrying helium-filled balloons toward their father in a bed next to mine. He smiled. His gaze turned to mine, and somehow at that moment I knew I was his doctor and that, though I was confined to a bed, I had just saved his life. I smiled back at him, beaming with pride.

Hallucinations like this repeated in cycles throughout my next few days in the ICU, though the items the ethereal children carried ranged from balloons to stuffed bears to insanely unhealthy-looking cheeseburgers. I began to adore my own team of caretakers. The pregnant nurse who brought in the food I could never eat took on an aura of poised mystery. My respiratory therapist became the cheese to my metaphorical macaroni. And my doctor: well, he was a demi-god. Slowly my runaway lungs worked their way towards health, and by the time I left the ICU, I knew that my future was in medicine.

My idolatry of these figures faded in time, but one religious aspect of this experience never left me: God had used this time of sickness as an opportunity to give me my calling as a physician. Drugs and exhaustion certainly made their unique contribution, but never has my mind been as clearly made up as during and after my fierce battle with pneumonia in that ICU. Of course, to confirm this new love for medicine I did my homework: I witnessed my fair share of bloody knee-replacements and craniotomies, volunteered to wheel-chair wrinkly old people to and from radiology in the local hospital, and read everything ever written by Atul Gawande, Abraham Verghese, and my all-time favorite, Richard Selzer. Now I’m a gung-ho pre-medical student itching to start applying to medical school, all thanks to death, drugs, and a sign from God.

Author Bio: Chelsey Bartlett is a junior studying Human Biology at Stanford University. After graduation, she hopes to get a Doctorate in Psychology and become a clinical psychologist. In her spare time, Chelsey practices archery, works for a Huntington's Disease outreach group on campus, and tutors underprivileged middle school students. You can reach her at: chelseybATstanford.edu

Elyn Saks' Tale of Mental Illness

As a mental health law scholar and writer,  Elyn Saks speaks for the rights of mentally ill people. It's a gray area: Too often, society's first impulse is to make decisions on their behalf. But it's a slippery slope from in loco parentis to a denial of basic human rights. Saks has brilliantly argued for more autonomy -- and in many cases for a restoral of basic human dignity.

In 2007, deep into her career, she dropped a bombshell--her autobiography, The Center Cannot Hold.     In it, she reveals the depth of her own schizophrenia, now controlled by drugs and therapy. Clear-eyed and honest about her own condition, the book lent her new ammunition in the quest to protect the rights and dignity of the mentally ill.

This TED Talk by Elyn Saks is enlightening.

 

Walk a Mile in My Brace

by Donna Hoover Bechtler

"My Russian ballroom dance instructor pulled me toward him... My pink satin strappy stilettos made my unreliable legs look long, lean, and feminine. But I moved as though my left foot were embedded in the slick hardwood floor. Around me teachers and students gracefully swirled in Viennese waltzes or jived World War II style. I headed for a chair and my comfortable purple suede shoes." Download Walk a Mile in My Brace

This is the story of an orphan patient.  She has "lived with this [poorly defined neurological condition for seven years.  The doctors at Mayo and elsewhere do not have a name for it."  Her story exemplifies the old saying, "Fall seven times, get up eight."  To read more:  Download Walk a Mile in My Brace   

Author Bio: Ms. Bechtler lives in Charlotte, North Carolina, with her husband, Michael Gross, a poet with a day job, and with their cat. She has an undergraduate degree in English from Queens University where she graduated summa cum laude and subsequently earned her MFA.  Email DHB

A Patient Request

by Zena David

The night my brother, Steve, a long-time resident of a nursing center, was sent to the emergency ward, I expected him to be admitted to the psyche ward of a Chicago hospital.  It wouldn't have been the first time.  Occasionally, the medication he took to stabilize his schizoaffective behavior didn't hold. Medicare hadn't approved the new medication that might have helped in a timely fashion.   He walked the halls, refused to eat, had difficulty urinating, descended into a deep depression and heard voices.  This time, he would be a patient on the medical floor until his prerenal azotemia (impending kidney failure) and a blockage in the bladder could be treated surgically. He could not, in this state, enter the psyche ward. 

By the time I flew to Chicago from California, I saw my brother pulling out the IV's before being physically restrained. The psyche ward did not have the capability to handle patients with certain medical conditions so even though Steve's  doctors tried to get him into the ward, they were unable to do so. Never having been operated on, confused as to what was happening to him, and often being addressed in the third person, my gentle and gentlemanly brother became uncooperative and at times belligerent, ripping off the bandages protecting the fistula. Two operations later, my brother left the hospital having taught the staff that a smile and a kind word are as crucial to the healing process as the medicines that were injected into his veins.

“Whoever survives a test, whatever it may be, must tell a story.  That is his {her} duty,” said Nobel Peace Prize winner and Holocaust survivor Elie Wiesel.  My brother, Steve, never won a prize, but he is noble. And his story must be shared.  Within his living nightmare, he found his voice sounding it out so that it could make a difference to those who heard him.  I wanted him to know what he went through. I wanted him to know how proud I was of him.  I wanted him to know what he taught me.

 Robert Frost said, “The only way out is in.” Steve orbited in and out of consciousness and sanity and into traumas that frightened me.  Then he surfaced to a place where our words could meet and be understood not only by me but also by the medical staff.  This is our story.  See: Download A Patient Request

My Brother Steve

Author Bio: Zena David, a former public school educator, was awarded several Los Angeles Educational Partnership Grants which enabled her to develop interdisciplinary projects  and publish articles about the programs for middle school students.   She encouraged her English and drama students to share her philosophy, “love what you do and feel that you matter.”  The English Council of Los Angeles honored her for her achievements as outstanding English classroom teacher in 1986.  The next year, she received a Global Teaching Award for her children's Museum exhibit and her production of  The Diary of Anne Frank led to a correspondence and an invitation to visit Miep Gies at her home in Amsterdam. She became an assistant producer for a Dramalogue award winning theater and an associate director for the UCLA extension musical production about the second half of life.  Zena also has also written plays  and acted in several small theater as well as community productions.  She has facilitated a creative writing workshop in a women's prison. Her most recent speaking engagement was this year at the Yom HaShoah Observance and Photo Exhibition, “Through Your Eyes:  Holocaust Memorials Around the World.” As a writer, actress, and director, she is most interested in using the creative arts to integrate issues and heal traumas. Email:  Zena

A Grisly Narrative of Love

"Nobody asks [us] dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high."  So writes, Emily Rapp in an Opinion piece about her child with Tay-Sacks disease.

Wilh all the fanfare about Tiger Moms -- Ms. Rapp's essay is an important glimpse of reality, far from the ivied halls of the Academe.

See Notes from a Dragon Mom.

Dysmorphia

"Dysmorphia is less of an illness and more of a lifestyle.

A vaguely Greek etymology cloaks the shapeless disorder in ancient allure. Even the word, stolen from my second psychiatrist, hisses through the teeth – diss  and erupts in the mouth MORPH before finally sputtering out eeaa to coat the tongue in thick, paralyzing ash. I swallow down the sediment. Appropriate: the word is trapped in my mouth as this mind is trapped in my body.

This is an important piece."  Full text here: Download Dysmorphia

For more information see:  Dermatology Central and the book "The Broken Mirror: Understanding and treating body dysmorphic disorder by Katharine A. Phillips,  Oxford [Oxfordshire]: Oxford University Press. 1996. ISBN 0-19-508317-2.

 

Marginal Notes: The Naïve Narrative

 

In his recent column In Defense of Naïve Reading, Professor Robert Pippin speaks to the state of literary criticism as it is taught on university campuses.  His contention is that, although the current trend is to scrutinize the literary arts through the lens of the natural scientific research model — with the ultimate end of developing a “science of meaning” — creative works themselves were never crafted to serve research.  Rather, their authors penned them as works of art, works meant to speak to us at the deepest level of our being. I was reminded of these words during small group discussion at our recent Cell2Soul gathering on Nantucket. more»

 

Brian T. Maurer has practiced pediatrics as a Physician Assistant for thirty years.  His "Marginal Notes" column appears periodically in the Cell2Soul Blog. The title "Marginal Notes" is taken from a quote by Henry David Thoreau: "I love a broad margin to my life."

The 75-year-old Lady Reflects Upon Her Condition

by Judith Bruder

When I was in the hospital
(she said)
with this last illness ---
and I was delirious ---
(she said)
people were kind.
They were very kind.
You see those flowers?
Yellow flowers, over there?
My neighbor sent them; those are only part of what he sent,
(she said)
and there were many more,
so many flowers.

This is a fragment.  Download Bruder Lady Reflects.

"The poem dates from 1985 and almost wrote itself," Ms. Bruder tells us.  "I simply transcribed and shaped an experience recounted to me by my friend, an extraordinary lady, now long gone. She was Irish, which perhaps explains its everyday poetry."

Author Bio: Judith Bruder is a free-lance philosopher whose published works include a novel, a memoir, a translation from the French, and numerous articles and short stories. She trained in addictions counseling and chaplaincy, and worked for eight years in Campus Ministry at Fordham at Lincoln Center.

J.B. has recently emerged in the Blogosphere with: Touch 2 Touch and A View From the Woods.