Below, a story and a poem from Pulse, a very special online magazine that uses stories and poems from patients and health care professionals to talk honestly about giving and receiving care.

Pulse was launched by the Department of Family and Social Medicine at Albert Einstein College of Medicine/Montefiore Medical Center in the Bronx, New York, with help from colleagues and friends around the state and around the country. The magazine’s contributors are doctors, nurses, psychologists, social workers, patients, students, editors and writers.

I count its editor-in-chief, Dr. Paul Gross, as a friend. Here Paul describes how Pulse was born:

“While leafing through a medical journal some years ago, it struck me that the scientific studies that filled its pages bore only a slight resemblance to my experience of the practice of medicine. For one thing, the patients in the studies seemed to enjoy swallowing pills. They remembered to take them and didn’t seem to mind their accompanying side effects…

“For another, the studies assumed that the pills were readily available—and affordable…

“These journals had glossy images of smiling patients who were now leading active lives thanks to antidepressants or anti-inflammatory agents. My experience with these same pills was a little different: many didn’t work nearly as well as advertised…

“The health center where I worked at the time wasn’t making things easier for patients, who complained about doctors (myself included) who made them wait and telephones that rang and rang unanswered.

“What would it be like, I wondered, if there were a magazine that told about health care the way it really is? What if patients and health professionals alike got to tell their stories?

“Around the same time I had a stairwell conversation with a hospital director of nursing. It stopped me short. ‘For the first time in my long career,’ she said, “I’m ashamed to be in this business.’

“To me, this sounded like a cry for help; it sounded like a system in crisis. And yet, for the most part, popular magazines and medical journals seemed oblivious.

“It occurred to me that if we found a way to share our stories—the difficult moments along with the glorious ones—perhaps we could jump-start a national conversation about health care.

Hospice
They want to know: How much longer? Will she be in pain?
Joanne Wilkinson MD MSc

My patient's beagle is very quiet. He lies next to the brown leather living-room chair she used to sit in when I would come to see her at home. His nose is down on his paws, and his round eyes look up at me, up at the nurses, the home health aides, the family members who go back and forth between here and the back bedroom. He is very alert, but silent. He stays perfectly still.



My patient's sons want to know things. How much longer will it be, will she be in pain, what will the end be like, will she be conscious? Should they take the rest of the week off from work, should they call the son in California and ask him to come? Yes, I tell them. Bring the relatives from far away, call in sick to work, get the minister, the undertaker, the cousin with the good voice who wants to sing at the service. It won't be long.



They pace back and forth in the kitchen, stirring the air with their movement. Their footsteps shake the house's foundations. Would it have been different, they ask, if we'd caught it earlier, if she'd had the colonoscopy at fifty like you're supposed to, if she hadn't gone to Europe for two years and not seen a doctor? If they had visited more often, or nagged her about her health, or been nicer to her back in second grade when she told them to finish their homework? No, I tell them, no. Of course not, no.



She first showed up in my office not six months ago, a retired college professor proud of her good health, for a routine physical. Instead of just the cholesterol and HDL, I ordered some other things too–she hadn't seen a doctor in years, and I think of them as the "just in case" labs. A complete blood count. Electrolytes. Just in case she had something bad that no one knew about. And she did–severe anemia, with a hemoglobin of 8.5 when normal is above 12. 



We had literally two office visits after that–the one to plan her colonoscopy and the one where we went over her abdominal CT scan studded with metastases–and then I started seeing her at home.



My patient's nurses want to talk strategy with me. This much narcotic, for this long, and the drops that dissolve in the mouth? This many nurses, for this many days, and the oxygen with the bubbles in it so she won't feel too dry? Fine, I tell them, it's all fine, you guys do good work, just show me where to sign and who to call. I trust you.



My patient is quiet, sedated. She appears to be sleeping. I hold her hand when I go in to see her, and I don't use my stethoscope. The humidified oxygen hisses and bubbles gently, sounding like rain. I think of the four home visits we have had–first sitting in the living room looking at family photos together, later sitting on the foot of this bed, talking about getting the oxygen ordered. I've known her such a short time, but like her so much. She does not open her eyes, and I try to imagine what she is dreaming about. Long walks in Paris during her sabbatical year? Playing the piano for Christmas carols with the family? Touching the silky head of her dog? You did good, I tell her quietly. It's okay. You rest now

.

In the kitchen, before I leave, I tell them all that I am sorry. That I am only a phone call away, that they can call me at any time and ask to be put straight through. I know, though, that they won't, that my work here is done. In another hour I'll be back in my office prescribing birth-control pills for college students and cleaning wax out of ears and diagnosing allergic rhinitis–and remembering the watchful silence in that house, the tick of the kitchen clock under the fluorescent lights, the silky ears of the beagle as he mourns.




About the author:



Joanne Wilkinson decided to be a doctor when she was eight so that she could support her writing habit. "I told my pediatrician that I was going to be a writer, but that in order to make money I would be a doctor 'during the day.' He laughed…now I know why." Since then, Joanne has attended and led multiple writing workshops and has had short stories and essays published. Along the way, she graduated from medical school, practiced full-time for six years and is now a member of the academic/research faculty at Boston University Medical School.

   Story editor:   Diane Guernsey
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Rx
Veneta Masson RN

Politicians…were quick to rise to the defense 
of a particularly vulnerable population. As a group, 
dual-eligibles [Medicare-Medicaid] have incomes below 
the poverty rate…and take an average of 15 medications a day.


Washington Post
January 14, 2006



This is how it works: 

as wealth trickles down 

to the poor and old

it turns into pills.



So M and S, their slender portfolios

long since depleted, can still

compete for bragging rights.

I take twenty a day, says M.

Ha! counters S, I take so many

they had to put in a port.



G presides over the corporate enterprise,

his specialty, mergers and acquisitions.

With combined assets (his own and his wife's)

filling two cupboards, he allocates resources,

tracks inventory, restocks 
from Canada and Wal-Mart.



K can still indulge herself.

I'll start with one of the pale pink ones,

she tells the striped tabby,

but I might decide I need two or three.

I'll wait a while and see how I feel.

Maybe the purple would do me more good.



Honor is served.

Wealth is transferred.

The old have their pills.

And their health? 

That's another story.



About the author: 



Veneta Masson is a nurse and poet living in Washington, D.C. She has written three books of essays and poems, drawing on her experiences over twenty years as a family nurse practitioner and director of an inner-city clinic. Information about her new poetry collection, Clinician's Guide to the Soul, is available at www.sagefemmepress.com.

 Poetry editors: Judy Schaefer RNC, MA and Johanna Shapiro PhD