The C2S blog draws on the arts, the social and biological sciences to explore the many meanings of health and "dis-ease." Designed to be a locus where patients, their families and professionals can meet on a level playing field, it is the natural off-shoot of the Cell 2 Soul Online Journal. We encourage the submission of ideas, essays, poems, stories, humor, and timely reviews relating to the humanities and health care.
she misses bicycling, on the boardwalk, the salt air renewing, her hope of a perfect love, constant as the returning tide.
In Memory of Marsha Abrams, who bore the weight of MS with dignity and grace and brought warmth and love to her friends.
(Photo from Amaze Art Gallery)
Whitman at Last
The IV drips, drips as I read, Leaves of Grass, reclining on a plastic chair, under a frayed blanket, soft as a baby's touch.
Here on a street of rocks and stones, illness lies, a detour between life and death, where we become like Whitman, all of the same flesh, one with earth, sea, sky.
The poet, Shirley Adelman, is a mother of two, grandmother of three, a breast cancer survivor, a former college teacher, and a writer of poetry and prose. Her work has been published in academic, literary, and medical humanities journals in the United States, Canada, South Africa, and Israel. Most recently her work appeared in Jewish Currents, Blue Collar Review, and Kaleidoscope.
Goal: To help, empower and support all adults to prepare for their future and take the initiative to talk to their doctors and their friends and family about what matters most to them at life's end.
Contemplating one’s own death and doing some basic preparatory work is certainly not an easy task. However, the emotional, physical and the financial toll of not doing so is exorbitantly high. People who do not clearly document their wishes and preferences for care at the end of life are often subjected to futile medical treatments that they neither seek nor benefit from. Their families are burdened by the medical bills accrued from the numerous ineffective treatments many patients get at the end of life. In fact, a large research study showed that 62 % personal bankruptcies are due to medical expenses. Over 75% of the people who became bankrupt due to medical expenses had some form of health insurance (i.e., having health insurance does not protect you and your family from medical expense related financial crises).
Letter Project Tools:
What Matters Most Letter: This is a letter template that allows anyone to document what matters most to them and what treatments they want in the future. This tool is free and is available in print, as an online fillable form and as an iPhone and Android App in eight different languages.
Letter Project Advance Directive: This tool allows anyone to answer a few simple questions in English. When they finish and click print, the tool will send them an auto-filled valid advance directive document and a supplemental letter to their doctor describing their preferences for medical care at the end of life. This tool is free and is available in print, as an online fillable form and as an iPhone and Android App.
A brief article, Ask patientsWhat matters to you?” rather than “What’s the matter? by Sosena Kebede in the British Medical Journal is well worth reading.
“A lot of what matters to our patients is outside of what we can offer them as physicians, and our success in meeting their needs demands our ability to integrate our care with their lives outside of our hospitals and offices.” As an example, the Dr. Kebede recently “asked one of her patients what mattered to her, after attempted pain control did not alleviate her distress. In between tears, my patient told me about her hobbies and family. This gave a new perspective on patient care.”
"Whenever Heather entered a patient’s home for the first time, she knew that she was walking into a long, long, complicated story that she understood nothing about, a story that was just then reaching its final crisis"
This longish and moving piece follows a hospice nurse on her rounds in Brooklyn. It is worth a close reading.
Gavin Francis is a Scottish physician and writer. He was raised in Fife, Scotland, and now lives in Edinburgh where he works as a GP. His new book, Adventures in Human Being is a real keeper.
From the Guardian review: "It is grand, eloquent stuff, occasionally humorous, frequently moving, and invariably informative. In other hands, Adventures in Human Being might well have become cluttered with cliche, detail or sentimentality but Francis has a lightness of touch that helps him avoid these pitfalls. His use of quotes is sparing but erudite and his lack of self-importance – not a characteristic in his profession – is welcome. The end result is a thoroughly entertaining, provocative work."
In this audio, Andrew Solomon tells the remarkable story of Cambodian woman he met while doing research in that country. He wanted to understand what happens when an entire nation has been subjected to a trauma. This Cambodian woman had survived the killing fields of the Khmer Rouge.
In a resettlement camp, she started a group to help shattered women refugees rendered lifeless by the horrors of Pol Pot’s regime. This is a moving video with many teaching points.
"Do you want the closest thing to a wonder drug? Try exercise."
In this excellent article by Aaron Carroll in the New York Times Journal of Medicine, June 21, 2016 one will find a valuable introduction of this topic. Unfortunately, no references are given but they can probably be retrieved at PubMed.
Studies have shown that exercise is as good as drugs for conditions as diverse as:
Many people will be surprised lo learn how little exercise they need to do to achieve the results. The recommendations are 150 minutes per week of moderate intensity physical activity for adults or about 30 minutes per workday. Walking at 3 to 4 miles per hour qualifies.
from health enews
This form of therapy has been shown to be effective and it's cheap. Warning: it can be addictive!
Aaron Carroll's essay is a great introduction to this simple therapeutic modality. He draws heavily from a British Medical Journal editorial: “Exercise: not a miracle cure, just good medicine.” BMJ 2015; 350:1416. Download Exercise BMJ editorial "A study of representative samples of clinical practices in the United States found that the proportion of physicians recommending exercise to all patients fell from 14% in 1995 to 11% and 2007."
Physical activity remains the best buy for public health.
by Jane E. Babin (We published a version version of this in 2006 on the precursor to C2S Blog) It may be easier to read as a pdf: Download My Singing Angel Babin
When I entered Massachusetts General Hospital last April to have a feeding tube placed in my stomach, I was very apprehensive. Don't get me wrong. I had every confidence in the surgeons and staff at this prominent facility. Also, this procedure is done routinely.
My cause for concern was my ALS, aka, Lou Gehrig's disease. At the time, I had not yet had my tracheotomy. Because ALS is a neuromuscular disease that had begun to affect my diaphragm, I was afraid of any sedation that could compromise my already weakened ability to breathe. Try as they might, the medical staff, with their confusing medical jargon, could not allay my fears. I became more and more anxious as the night approached.
It was then that a singing angel entered my life. As I lay on my bed I heard this wonderful sound fill my ears. A nursing assistant had come to make sure I was settled in for the night. A beautiful Haitian woman with large, dark eyes was singing to me. "Is that gospel I hear?" I said, smiling up at her. "Uh-huh. Do you like?" I nodded my head.
She proceeded to tell me that she sang in a church choir in Boston. I responded that her voice was beautiful and that it must be some choir! She smiled and seemed to study my face. "Are you afraid of what's going to happen to you tomorrow?" All my fears came flooding back in that moment and a few tears trickled down my face. "Don't worry, honey," she said, "everything will be okay. Would you like me to sing another hymn?" I nodded, and she went soulfully into another song.
I'm not sure of the name of the hymn or its melody. But its refrain, Till the storm passes by, will remain with me forever. Over and over, with increasing passion, she repeated this refrain.*
My tears subsided and when she finished she said, "There, now, there is nothing to fear. Go to sleep." She then asked if I would like her to sing to me before my procedure the next day. I smiled and said that, yes, I would love it. She patted my hand and walked away. I soon fell fast asleep.
The next morning, true to her word, she appeared at my bedside and sang the same hymn as the night before. At once, I felt all my anxiety melt away. A few minutes later, I was wheeled into surgery a changed woman.
Sometimes medicine is indeed the best medicine. Sometimes it is the song of an angel.
* A friend later told me the words are from Till the Storm Passes By, a Methodist hymn, music by Mosie Lister. The moving words of the refrain:
Till the storm passes over, Till the thunder sounds no more, Till the clouds roll forever from the sky; Hold me fast, let me stand In the hollow of Thy hand, Keep me safe till the storm passes by.
[Editors note: To enhance your reading experience, we urge you to click on the link below to hear the hymn that the nursing assistant sang to Ms. Babin] Till the Storm Passes ByMoises Lister (1939)
Jane Babin was a remarkable woman. She died in March of 2015 after enduring ALS for over a decade.
A recent article "Tidying rooms and tending hearts" described the important role ward cleaners can play in patient care. It reminded me of Jane Babin's vignette from ~ 10 years ago. Download Cleaning Staff