Cell 2 Soul: The Humane Health Care Blog

About Illness Narratives

We have been interested in Illness Narratives for decades.  These are also called pathographies or autopathographies.

Composing your illness narrative can help your health care provider to make a more accurate diagnosis, and order more targeted tests and treatments.  It will also enhance most providers' empathy.

Here is some background information on Illness Narratives: Download The Stories Patients Tell

and a guide to composing your own Illness Narrative: Download Autopathography Guide

If you have specific questions please email DJ Elpern.

Empathy: A poem

By Shirley Adelman

 

My daughter suffers
for another's suffering.
Shadows of eyebrows
on a mother,
with more tumors
than fingers can count.

Her daughter,
ashamed of suffering,
confides only in mine,
knowing
    I was lucky.
Cancer left me   left me

with a scarred breast:
tattooed dots,
a frame to radiation,
beamed
so early in the morning,
birds sang their thanks,
for another day.

Previously published in: "Canadian Woman Studies," Women and Cancer, A York University Publication, Spring/Summer 2010, (Volume 28, Numbers 2,3 ) p.29.

The author writes: “When my children were in their teens, I was diagnosed and treated for breast cancer, which greatly impacted upon them.  Years later, my daughter became the confidant of a colleague whose mother had late stage cancer.   The young woman was ashamed of her feelings, yet was able to share her suffering with my daughter, knowing I had been treated for breast cancer.  She did not know that my daughter's enormous capacity for empathy was provoked by the feelings of suffering she felt when I had cancer.  It was heartbreaking to see her so distressed.”

Wounded Healers

There was a moving essay in the NEJM this week by a young woman, studying for a doctorate in psychology, who received chemotherapy while doing medical research on a gap year between college and graduate school.

“I stuck Post-It notes on the wall behind my bed, revealing data unrelated to my chronic illness but vital to my humanity, such as “I am a big sister” and “I climbed Machu Picchu” and “I like cupcakes” — so that anyone coming to round on me could see who I was, under the hospital gown…”

Her illness enabled her to recognize that “provisions for a supportive companion might make an enormous difference in patients’ experience of care. As a researcher, I wanted to do something about it. So I decided to write a grant for chairs in the infusion unit.”

“’The chair grant,’ as I came to refer to it, seemed to encapsulate the chimera that I was the fusion of patient and researcher. “

“It was not about chairs: to me, it was about comfort, compassion, dignity, and support. It was about not being only a patient or only a researcher…”

Many of you will be inspired by Jennie David’s short essay. Here is the pdf: Download The Chair Grant

The day after reading Ms. David’s memorable piece, I saw an article in the NY Times on “Doctors with Disabilities,” that is a fine lagniappe to Jennie David’s poignant viewpoint.

A few of you may be interested in these articles. The Wounded Healers is a big and important topic.

The Interpreter

by Ranjana Srivastava

NEJM, March 2, 2017

This is a moving and important essay. As physicians, we do not often wonder how caring for patients impacts on our ancillary staff.

“It dawns on me that in all these years I have never wondered how an interpreter copes with giving bad news.”

“Everyone sympathizes with stressed doctors and nurses, but who ever considers interpreter burnout?”

Download The Interpreter

Comments from Ling Poliandro, Mandarin medical interpreter:
Thank you also for forwarding this heartfelt article.While we often were made known of the appreciation of our work, the author strikes me as exceptionally respectful and sensitive. I often thought of becoming an onsite interpreter in the hospitals to be 'most' helpful but I realize the advantages of working at home over the phone far outweigh any in person situation at this time of my life as I can log in and out anytime when I need to, which I've used a few times after some very difficult encounters. 

Giving You Drugs Won't Help Your Husband

“Are you not giving me any medicine?” her patient asked?

Ms. Shahab was silent for a moment, and then said with a sympathetic gaze, “Medicine for you will not cure your abusive husband.”

"The therapist was born in the isolated Afghan village she still lives in, in 1987 or 1988 — she is not sure. Her father was shot and killed at his mosque shortly before she was born. The reasons for the killing remain unclear, but it shattered their family and forever changed life for Ms. Shahab and her two siblings.

Ms. Shahab and Client (NY Times)

"A marriage was arranged to a man almost 20 years her senior when she was only 13. But the marriage did not stop her from completing her education. She took two of her youngest children with her to school, placing them at the kindergarten as she attended classes."

She is now a therapist in the village, caring for women battered by family and war.

This is an inspiring article:  Afghan Therapist Finds Empathy is Good Medicine.

 

The PA, the Prison and Paws

It takes a village…and sometimes a prison. – Ania Laver

by Rhianna Flanagan, PA-C

For easier reading  Download PAs for PAWS  Email Rhianna.

As a physician assistant student, I was randomly assigned to a federal prison for my psychiatry rotation. I was apprehensive and fearful, as a five-foot tall, 24 year-old woman, to contemplate spending five weeks at an all male federal lock-up. Before this rotation, I could not have fathomed that not only would I be sad to leave, but that the experience would leave a dramatic stamp on my life.

Three weeks into the rotation, I learned there were inmates training future service dogs. NEADS  (National Education for Assistance Dog Services) “is a non-profit organization that was established in 1976 and is based in Princeton, Massachusetts. [Their] Assistance Dogs become an extension of their handlers and bring freedom, physical autonomy and relief from social isolation to their human partners who are deaf or have a disability.”¹ I asked the NEADS liaison if I could observe the inmates in a puppy class and was thrilled when she said yes! At this class inmates received a brand new batch of three month-old puppies. I watched as grown men, some with intimidating stature, melted to the ground as they knelt and spoke in their “puppy voices.” The liaison explained to me that NEADS partners inmates with puppies as handlers to train them as service dogs. These puppies leave the prison every weekend with weekend puppy raisers (WPR) for socialization outside the prison walls.

That day, I was inspired to become a WPR myself and have witnessed the healing these animals are capable of. Every weekend I pick up my puppy for 48 hours of walks, field trips, and socialization. During field trips to stores or the park these pups bring a smile to the faces of everyone we meet. I’ve observed first-hand the ability these puppies have to brighten, not only my day, but also the days of total strangers!

As puppies, they provide “free time” and stress relief while teaching the values of patience and discipline to inmates. The puppies serve as companions and sources of constant adventure during weekends with their WPRs. As service dogs they are calming, helpful, and hardworking best friends to their owners. NEADS dogs give their companions every-day assistance and function as a social connection between their humans and the world around them.

NEADS dogs are true healers. As a PA I am inspired to take the nod from these amazing pups.  I continue to learn from these pups and strive to emulate their qualities of patience, empathy, and dedication in the practice of medicine.

Rx: The Quiet Revolution

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
Modern version of Hippocratic Oath

PBS April 2, 2015

In this inspiring 90-minute documentary, filmmaker David Grubin takes his camera across America to focus on the challenges and triumphs in our country’s health care delivery system. The four segments that comprise Rx: The Quiet Revolution introduce us to a diverse group of doctors, nurses, and health care professionals who are transforming the way we receive our medical care: lowering costs by placing the patient at the center of their practice.

Rx: The Quiet Revolution shows us what’s happening from Maine to Mississippi, California to Alaska.  You will see physicians, nurses and other healthcare professionals placing the patient at the center of their practice — transforming the way medical care is delivered while lowering costs and improving outcomes.

Filmmaker David Grubin brings you these compelling stories: 

• In Maine, we meet Dr. David Loxterkamp, who practices family medicine with a team of doctors working to treat patients with chronic illnesses.

• In Mississippi, a state with more diabetes cases than any other, Grubin finds a rural health clinic fighting diabetes with the aid of an electronic communications device that provides greater access to medical care, helping patients take responsibility for managing this devastating chronic disease.

• In San Francisco, Grubin visits a health care facility for seniors called On Lok, dedicated to making it possible for frail, elderly Americans in need of nursing home care to live with dignity in their own homes.
  
  
• In Alaska, the documentary follows Native Alaskans who own and operate their own health system, caring for 65,000 people across 107,000 square miles. In spite of the number of patients and the vast distances between them, they are determined to foster an empathetic relationship between patients and their health care providers.

At 90 minutes, this may seem a daunting investment in time, but Rx: The Quiet Revolution will speak to you in powerful and compelling ways.

On Pride and the Struggle

There’s an old French saying: to cure sometimes, to relieve often, to comfort always.  It could serve a mantra for all health care professionals. It reminds us that it can be more important to treat the person who has the disease than it is to treat the disease the person has.

Two recent vignettes were sent to us that illustrate these points.

Croina’s Pride by James Channing Shaw and

My Struggle by Lee Thompson

Both provide valuable insights for patients, their families and all care givers.

They appear in The Online Journal of Community and Person-Centered Dermatology (OJCPCD), a free, post-publication peer-reviewed, full text, open-access, online publication.

Heart Matters: Katherine Treadway, M.D.

Katherine Treadway teaches medical students about the patient-doctor relationship at Harvard.  She will give a free talk in Lenox, MA next week.

Heart Matters:
The Patient-Doctor Relationship
Thursday, October 11, 2012 at 6:00 p.m.
Shalespeare and Company
Founder's Theater
70 Kemble Street, Lenox, MA
Sponsored by BMC

Treadway has written extensively on this topic. "I watch the second-year students file into the Ether Dome for their first day of my “Patient–Doctor 2” course. For me, this course marks their true entry into medical school. Here, they will refine their history-taking skills, building on their knowledge of pathophysiology and disease; they will learn how to perform a physical examination; and they will touch a living stranger's body as clinicians for the first time. For them, right now, these are just skills to be learned. They do not see how they will be transformed by them. They know that these newfound abilities will open the door to clinical medicine. They do not know how utterly changed they will be by crossing that threshold."  Full Article

If you wish to attend, please email Sue Kelly at BMC or call 413-447-2775 by October 9 

Dr. Treaway’s advice to students:
As you acquire more medical knowledge and responsibility, there will be times you will focus more and more on the problem and forget the patient attached to it. As you strive to take a good history, get the facts straight, perform a good physical exam, and put it all together into a comprehensive clinical picture, you will find that with all the anxiety involved in wanting to do it right, the patient becomes further and further away...
While I am busy treating the bodies of my patients, I try to remember to treat the patients as well — to touch them in small ways as well as large.

Cure for the Common Cold

A fine essay by David Watts appeared in a recent issue of the New England Journal of Medicine.  Unfortunately, it is not available free to the public.  It begins with this paragraph.

image from migraine-livinginpain.blogspot.com/

"Rumor has it that the medical profession suffers from too many cold and distant doctors. Studies have attempted to subject this notion to the scrutiny of science, and although we could argue over their degree of success, we know it's true. We need only ask our patients in order to be regaled with stories confirming the accusation. Cold. Yet we didn't start out that way."

 

Some of you will have access to NEJM, but those who don't can contact Dr. Watts for a copy.  Congratulations, Dr Watts!  This is an article that all of us will mull over and benefit from reading.

Cure for the Common Cold
David Watts
New England Journal of Medicine, September 27, 2012, p. 1184-85