Cell 2 Soul: The Humane Health Care Blog

Three Vignettes by Susan Blevins

Susan Blevins writes: “It appears that my ministry in this life is to care for the sick and the dying. These are vignettes honoring my mother and my friend, Carla.  It was a privilege for me to be there for them, to hold the space for them, and I hoped, to offer them guidance as the end approached.  The most important things in life are love and service.”

Silver Curls  Download SILVER CURLS copy

Willing Humor:  Download WILLING HUMOR

The Scream:  Download THE SCREAM

They also serve who only stand and wait.  Milton

The Daughter Care System

“The best long-term care insurance in the United States is a conscientious daughter.”

“As medicine advances, people are surviving longer and longer with chronic conditions, and will need more and more caregiving.” It seems clear that women will continue to shoulder a disproportionate burden of the care. “A lot of women have been in caregiver roles traditionally. They may have that skill set, or intention, or a feeling of obligation.”

This is a concise and important article from the NY Times, by Roni Caryn Rabin. For full article, go to: The Daughter Care System.

One thing it does not cover is the negative health effects that family care-givers suffer. Katie Butler describes those in her landmark book, “Knocking on Heaven’s Door.” Here are some notes on Butler’s book.

Stay With Me

Our colleague, Dr. Rakesh Biswas from Bhopal, India, forwarded us a link to a memorable essay in the current issue of The Lancet.  Thank you, Rakesh!

(from the Lancet’s comments on this essay) “We share the same space, but not the same time”, writes Naaheed Mukadam about a patient with dementia in her essay “Stay with me”. The essay, which won the Lancet’s 2016 Wakley Prize, examines the way dementia disrupts life not only for the patient but also for the family and carers.

To say more would spoil the impact of this sensitive, articulate and important article. It well-deserves the prestigious Wakely Prize.  Your time to read or listen to it will be well-spent!

Read it: Download WakleyPrize_StaywithMe

Listen to it: Stay With Me MP3.

My Singing Angel

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 By     Moises 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

Caring Not Curing

To Cure Sometimes, To Relieve Often,
To Comfort Always

 

Photo taken from "The Raw Story."

 Shaving William is something like performing surgery, and when the weather permits, our back porch becomes our operating room.

 So begins "Caring for William," a recent New England Journal of Medicine essay by Robert Jones.  It will resonate with many of you for some time to come.

Robert Jones is an unusual medical student.  He has chosen to divide his life between two very different worlds: a hospital, where I'm a medical student, and a homeless shelter, where I live and work... the boundaries often blur...

The New England Journal of Medicine's articles are often stodgy, pedantic and dense.  Occasionally, a piece blazes with poignant insights.  Caring for William is one of these.  Because this link may not work for you since most NEJM articles are not free open-access,  I have provided access to the essay here: Download Caring for William  (but I will remove it in three days, so as not to incur the wrath of NEJM). If you want to read it later, contact me and I'll send you a pdf (it's the equivalent of a photocopy and should be okay with the publisher).

Regarding the Open Access question see Digital Activist's Suicide Sheds Light on Open Access Movement.

Jonah Zuflacht, a first year medical student at Columbia P&S has this comment: "Robert Jones' essay artfully portrays his relationship with a schizophrenic, homeless man. It serves as both a window into the absurd nature of the system in which he (and other soon-to-be physicians) will practice and a reminder of what drew many of us into medicine to begin with."

 

The Hospice Nurse

by Kathryn Norcutt email author

I saw Agnes, one of my first hospice patients, die before my eyes.  It sounds more dramatic than it actually was, but there was no last minute speech peppered with coughs, or a slow death. It was more like one minute she was there, and the next you could just tell she wasn’t.  She had terminal breast cancer, which she had beaten six years earlier and then it resurfaced, all too quickly. She decided not to go through with any treatment and enjoy what life she had left. I was there in her last of month of life to handle her quality of life, and it disappoints me to know that such a wonderful spark of humanity had been snuffed when she still had years left.

  It was because of her that I became acquainted with the same phrase I now see many hospice organizations use on their sites: "When you cannot add days to your life, add life to your days."

For entire essay see: Download The Role of Hospice Nurse-C2S

Photo credit: will add later

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.

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.

Marginal Notes: Hands of a Surgeon

 

A young Vietnamese immigrant wandered into the inner city clinic where I trained as a student and subsequently worked for several years.  Although he spoke little English, his chief complaint was obvious:  an unsightly mass protruded from the right side of his face along the jaw.  He had been to a number of medical facilities for treatment, but no one wanted to excise the cluster of bumps just beneath the skin.  In retrospect, the reason was obvious—he had no medical insurance.

 

Several of my classmates in PA school elected to pursue careers in surgery.  I opted for a track in general medicine instead.  Even so, I found myself standing over this young Vietnamese man that afternoon, excising a mass that other clinicians more experienced than I had refused to touch. >>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."

Pupil as Teacher

Daniella Lamas was an intern when she met a young man with terminal heart failure on I.C.U. rounds.  Through Facebook she learned  "[h]e was 'single,' and he liked Radiohead and Tom Clancy. He’d been sending upbeat status updates from the I.C.U.; to read them, you’d never know he was so sick, but to me they were missives from a dying man"

Her essay, Friend Request, is as moving as any I've read.  I know you will appreciate  it.

Osler wrote:  "The pupil and the teacher working together on the same lines, only one a little ahead of the other.  This is the ideal towards which we should move."  Daniela Lamas, medical intern, with this essay is the professor for all of us: her colleagues, professionals and laypeople alike.

.