Cell 2 Soul: The Humane Health Care Blog

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.

.

Marginal Notes: Wounded Healers

Henri Nouwen coined the phrase the wounded healer in reference to individuals who have developed the ability to empathize with the sufferings of others through sufferings that they have experienced themselves. >>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."

Touch Conveys Emotions

This is an important article documenting the ability of simple touch to communicate emotion non-verbally.  It has major implications for how we relate to others and how care givers (nurses, aides, physicians) can initiate the healing process.

Hertenstein MJ, Holmes R, McCullough M, Keltner D.  The communication of emotion via touch.   Emotion. 2009 Aug;9(4):566-73.

Abstract

The study of emotional communication has focused predominantly on the facial and
vocal channels but has ignored the tactile channel. Participants in the current
study were allowed to touch an unacquainted partner on the whole body to
communicate distinct emotions. Of interest was how accurately the person being
touched decoded the intended emotions without seeing the tactile stimulation. The
data indicated that anger, fear, disgust, love, gratitude, and sympathy were
decoded at greater than chance levels, as well as happiness and sadness, 2
emotions that have not been shown to be communicated by touch to date. Moreover,
fine-grained coding documented specific touch behaviors associated with different
emotions. The findings are discussed in terms of their contribution to the study
of emotion-related communication. (PsycINFO Database Record (c) 2009 APA, all
rights reserved).

They Also Serve

Evelyn Coke, Home Health Aide, dead at 74.  (NY Times, August 10, 2009)

"Year in and year out, Evelyn Coke left her Queens house early to go to the homes of elderly, sick, often dying people. She bathed them, cooked for them, helped them dress and monitored their medications. She sometimes worked three consecutive 24-hour shifts. She loved the work, but she earned only around $7 an hour and got no overtime pay.

For years Ms. Coke, a single mother of five, quietly grumbled, and then, quite uncharacteristically, rebelled. Ina case that reached the U.S. Supreme Court in 2007, Ms. Coke sued to reverse federal labor regulations that exempt home care agencies from having to pay overtime."This is an important, and sad Obit.  

"God doth not need

Either man's work or his own gifts. Who best

Bear his mild yoke, they serve him best. His state

Is kingly: thousands at his bidding speed,

And post o'er land and ocean without rest;

They also serve who only stand and wait."   Milton

and Thomas Gray:

Let not Ambition mock their useful toil,     
Their homely joys, and destiny obscure;     
Nor Grandeur hear with a disdainful smile     
The short and simple annals of the poor.

What kind of a country do we live in where the government and the Supreme Court sanctions robbing the poor and rewarding the rich?  We pay home health workers $7 per hour and deny them overtime pay.

There's a Yiddish proverb:  "If the rich could pay the poor to die for then, the poor would make a very good living."  Sadly, this is happening.

Marginal Notes: Fathers' Day

Rembrandt's "Return of the Prodigal Son"

 

Although we e-mail one another several times a week, my friend and I see each other but once a year.  Once a year he travels from the southwest to visit his boyhood home and reconnect with his eastern roots.  Once a year during his week-long stay we plan an afternoon rendezvous in a small town nestled in the mountains of eastern Pennsylvania.

Time, as always, is at a premium.  Only a few hours are allotted for lunch on the wide veranda of the antiquated red-brick inn on the square and a subsequent stroll about town, but the conversation is continuous as we jointly mine each rich vein that runs through the bedrock of our lives.  >>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."

A Caregiver's Story

Nell Burger Kirst, a 4th year medical student at the University of Michigan, tells a memorable and important story in the March 31st New York Times: Comforter and Comforted relates the story of a person who is called to be a "care giver."  Little is written about this important human subspecies, yet they are the substructure of the entire health care system.  Some are unlikely candidates. 

Please read Nell's vignette.  It's a keeper!