Silence Kills: Speaking Out and Saving Lives

The twelve essays collected in Silence Kills present a compelling, and often frightening, insider look at the lack of communication and understanding currently plaguing the American health care system.

These stories explore a wide and complicated range of experiences—a doctor is pressured into sending a patient home from the emergency room but later must face his decision when the patient suddenly dies; a physician deals with the doubt brought on by a malpractice lawsuit and must come to terms with the fact that even doctors are fallible and human; a woman fights for her mother’s mental health against a system eager to over-medicate the elderly; and more—but all share one thing: a frustration with a system that hinders communication and often leads to unnecessary suffering.

As Abraham Verghese states in his introduction: “These essays strive to break the silence, to ask the questions that should be asked, that should have been asked. They illustrate how easily pride, misunderstanding, laziness, denial, poor data-gathering, avarice, expediency, selfishness and, above all, poor communication can undo the best of technology, the best that medicine has to offer.”

Inspired by groundbreaking research by VitalSmarts, a global leader in organizational performance and leadership, and the American Association of Critical-Care Nurses (AACN), and supported by the Jewish Healthcare Foundation, Lee Gutkind, editor and founder of Creative Nonfiction, has collected the essays in this volume. The hope is that these voices, speaking out, taking action and risks, will inspire others to make changes that will improve communication within our troubled health care system.

Table of Contents

"From the Editor," by Lee Gutkind

"Foreword: Toward a More Caring, and Curing, Health System," by Karen Wolk Feinstein

"Introduction," by Abraham Verghese

"The Good Doctor," by Helena Studer

"Missing," by Merilee D. Karr - read an excerpt

"Mrs. Kelly," by Paul Kelly

"Non Pro Nobis," by John Bess - read an excerpt

"Saving My Breath," by Tamara Dean - read an excerpt

"Watching My Mother Hallucinate," by Diana Hume George - read an excerpt

"Foreign Bodies," by Grace Talusan

"You Have the Right to Remain Silent," by Pamela Skjolsvik

"See the Difference," by Sue William Silverman

"Keeping Up Appearances," [special content found only in book!] by Leslie Einhaus

"Do No Harm," [special content found only in book!] by Pamela Lane

"In Praise of Osmosis," by Jill Drumm

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152 pages
Edited by Lee Gutkind
Southern Methodist University Press (c) 2007

Responses

“These essays illustrate how easily pride, misunderstanding, laziness, denial, poor data-gathering, avarice, expediency, selfishness and, above all, poor communication can undo the best of technology, the best that medicine has to offer.”

--Abraham Verghese, physician and author of
My Own Country and The Tennis Partner

 

“These vibrant stories—of an ophthalmologist who can’t forgive himself for missing his granddaughter’s eye cancer; of a daughter who must deal with her strong-willed mother who suffers from Alzheimer’s Disease; of a young ER doctor who, against his better judgment, sends a patient with chest pain home and discovers the next day that the patient died in the night—illustrate the vast implications of communication and miscommunication within medicine.”

--David Hilfiker, physician and author of
Healing the Wounds: A Physician Looks at His Work and
A Doctor’s Journey with the Poor

 

“An eye-opening account of the hidden cost of silence. This book pries open the door on the vulnerabilities of our society, and reminds us of the power of human communication.”

--Danielle Ofri, physician and author of
Incidental Findings

 

“Tantalizing for us patients and clinicians flattened by the way things are now in U.S. health care, this collection’s vision illuminates our need to choose, together, a way toward shared power, mutual respect, and deep healing.”

--Rita Charon, professor of clinical medicine and
director of the program in narrative medicine, Columbia Universtiy

 

“Silence Kills along with Rage and Reconcilliation… throws the current health care system’s under-recognized problems into high relief and adds a compelling, personal dimension to a formerly rhetoric-heavy subject.”

--Popmatters.com

 

Purchase Silence Kills

 

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from Missing
by Merilee D. Karr

I stared down at my desk, at my name neatly typed next to the word “Defendant.” Around it were numbers, names, and small print that I didn’t understand, on a form headlined “In the Circuit Court of the State of Oregon.”

Below my name, small print said, “You are hereby required to appear and defend the complaint filed against you—” What complaint? More neat typing filled in another blank line with, “the Estate of Helen F. Simmons, Deceased.” Helen? I knew her. Curly brown hair, funny lady. Deceased? Oh, no. She was only in her forties, but she’d already had at least one heart attack. I realized I hadn’t seen her for a while. Deceased? My god, what had happened?

That form was a subpoena. That’s how I heard about my first malpractice suit.

Finally I noticed the staple in the upper left-hand corner—there were more papers attached. The next page was a different legal form, with numbers down the left edge. This, too, repeated the heading “In the Circuit Court of the State of Oregon.” Just below the heading, in capital letters, was, “ESTATE OF HELEN F. SIMMONS, DECEASED, PLAINTIFF, VS. MERILEE D. KARR, M.D., DEFENDANT.” And next to that was the answer I was looking for, “Complaint: Wrongful Death Based on Medical Negligence.”

Oh, my god. Deceased. It was me. I killed her. My knees swam, I couldn’t breathe, and I wanted to dig a hole in the floor and disappear into it.

Finally. It was like I’d been waiting for this. I had finally screwed up. For real. Through medical school, residency training, and my own medical practice, up to that day and since—with every decision I’ve ever made in any patient’s care, I’ve grilled myself:

What if this is wrong? Isn’t there a better way to do this? What else might this person have that I haven’t heard of or thought of? What if I’m wrong?

We all do, on this end of the stethoscope. And now a woman was dead, and I was no longer the only one accusing me of negligence and malpractice. All the doubt that came with my diploma slammed home. Finally I knew. I just wasn’t good enough.

As I stood staring at the subpoena, the bustle and chatter of a workday swirled around me, and I suddenly realized that the whole clinic knew. The nurses, billing clerks, and lab techs detoured around my desk. I was in everyone’s path—the doctors shared a row of desks in a central work area. No one had spoken to me since the subpoena had captured my eye—under other circumstances I would have enjoyed such a long stretch of uninterrupted time. Even the other doctors hadn’t interrupted my ruminations. I wondered what they were thinking. I didn’t look up to see if anybody was staring at me. Didn’t want to embarrass anyone.

I was the new doctor in this group—I had joined fresh out of residency two years before—and now I had brought the clinic a malpractice suit. I was also the first woman doctor in the clinic, and one of only a handful of women physicians in semi-rural Clackamas County. When I finally looked up, Cheryl, our office manager, was standing next to me. She suggested we go into her office. Cheryl was the first one who asked me how I was doing. I told her I wasn’t sure, but she seemed reassured that I could give her any answer at all. I didn’t know her very well. We were both in our thirties, though she tried to look younger, and I tried to look older. I was a city kid with an M.D. after my name, and she had a diploma from the local high school plus business courses at the community college. I was married without kids and she had kids and an ex. In very different ways, we were both square pegs trying to fit.

Cheryl efficiently made the necessary phone calls. Our malpractice insurance company would have to assign a lawyer to defend me. Our office would have to make copies of the patient’s chart for the lawyer. I wanted a copy, too. I took it home and read it until late that night, and again and again over the following weeks and months, looking for one thing—what had I done wrong?

 

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from "Non Pro Nobis,"
by John Bess

The entire nursing staff was gathered in the Cardiac Care Center’s conference room. We were seated around a huge, oval table facing a bounty of coffee and doughnuts. We were all there but one: Maggie Shea, our senior nurse. She’d been let go the week before. The rest of the nursing office, we were told, would take up her duties. We would do more with less.

This was the mantra of Mike Spinogle, the fellow aiming a laser pointer at the screen in front of us. Several smaller cardiology practices in the region had merged and were literally giving us a run for our money. So the partners had brought Mike in from some big east-coast practice to make us more profitable.

It was his idea to fire Maggie. It was also his idea to stop our free prescriptions for indigenous patients. My officemate, Tom Keeley, who ran the indigenous patient program, was promptly let go as well. Everyone in the nursing office wondered who was next. People were dusting off their resumes and preparing arguments for their own necessity within CCC. It was this tense bunch that sat before Mike eating doughnuts and drinking coffee, because that’s what you do when you’re a team player. You eat the doughnuts. You drink the coffee. And you keep your mouth shut.

Mike was striding back and forth in front of the screen. He reminded me of George C. Scott in the intro to Patton, except Mike had Italian leather loafers instead of jack boots, a laser pointer instead of a riding crop.

“Everyone gets the tunnel,” he said, referring to the imaging tunnel of the CT scan. “We’ve got studies upon studies that allow us to order MRIs or CTs on every patient. Congenital Heart Disease?” he paused for effect and turned on his heel. “MRI.” He looked at me and pointed, “High lipids?”

“CT Angiograph?”

“Bingo!” He snapped his hand back and pumped his fist. “Nurses, if you think someone needs an echocardiogram, order a function MRI.” He hit a button on his laptop, and his Power Point screen changed to show a list of prices. “Insurance only pays $178 for an echo, but they’ll give us $312 for an MRI. So we’re phasing out our echo lab. We’re going to create two new exam rooms to increase our patient flow. An extra hundred patients a month will allow us to generate unprecedented revenue for the practice.”

I left the meeting feeling like I’d just been subjected to a fast food training film. Would you like an angiogram with your Coronary Artery Disease? Super Size that EKG?

I retreated to my office and listened to my voicemails. Half of them were for Tom. The operators didn’t know what to do with the frustrated patients now that Tom and his program were gone, so they were sending them to me. I wrote down the names and phone numbers and began calling them back. The first number I dialed was for an elderly patient living on the Navajo reservation. I held my breath while the phone rang and sighed deeply when her answering machine picked up.

“Hello, Mrs. Yazzie? This is John Bess from the Cardiac Care Center returning your call.” Mike was passing by my office and stopped in my doorway. He leaned on my doorjamb, waiting. “In regards to the free medications you were receiving, I’m sorry to inform you that our practice will no longer be offering that service. You can apply for help directly from the manufacturers, and if you’d like, I can help you get those forms filled out.”

Mike leaned in over my monitor, whispering. “Don’t forget the CT.”

“I’d also like to tell you that we are now offering cardiac imaging, both CT and MRI, exclusively to our patients. Feel free to call us if you’d like to set up an appointment.”

Mike gave me a thumb’s up and a healthy nod as I hung up the phone. “Good work. Hey, I heard you had some extra room in here,” he said looking around my office. “Yeah, this will do. We’re going to move you over to the records room, set you up a phone and computer there. We can get another exam room in here, increase our flow. How’s that sound?”

“Sounds great, Mike.”

I wanted to tell him what it really sounded like—one more plan to shaft the patients in order to make a buck. I wanted to tell him how I had come to despise the healthcare system. I wanted to tell him that I couldn’t look myself in the eye anymore. But I knew my words were pointless. There was money to be made, and somewhere along the line, some people would be helped. But some would be lied to. Some would die. All I could do was make sure it was never again a result of something I did, or, as in Johnny Segura's case, failed to do.

As Mike walked away, I picked up my stethoscope and left my office. I wandered around the building for a while. I slowly headed towards the administrative offices. No one was around, and all the doors were locked. I pulled out my heart-shaped Plavix post-its, scribbled a letter of resignation, and slapped it on Human Resources' door. I packed up my office and, without fanfare or explanation, walked away from medicine for good.

 

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from "Saving My Breath,"
by Tamara Dean

The neurologist was haughty and young and his waiting-room reading material consisted of nothing but medical journals, which were unintelligible. The art was Miro, poorly framed. After the first office visit, during which he questioned me and performed a number of simple tests, he recommended an EEG. When that came back fine, he prescribed a sleep-deprived EEG. When that came back fine, he prescribed an MRI.

I earned $13,500 per year in a job with the federal government. My health insurance paid 80% of medical expenses, but the remaining 20% of my hospital and doctor bills that year, before the seizure, had purged my savings, and new charges remained unpaid. My share of an MRI would cost hundreds of dollars.

“No,” I said. “I can’t afford it. And I don’t need it.”

Some alternative healers call asthma the disease of self-suffocation, a manifestation of the inability or unwillingness to express oneself, to speak up. I had never thought that was my problem (wasn’t I merely saving my breath out of self-preservation?), but then, I was shaking as I contradicted this neurologist.

He looked up from his desk, brow lifted. He stared for a moment. “What state do you live in?”

“Maryland.”

“You’ve had a seizure. Legally, I could have your driver’s license taken away.”

I stared back.

“What if you were driving a car when you had that seizure?” he demanded. “What if you were driving a car and hit another car? Huh? And what if, in that other car, there was a little baby? And what if you killed that little baby when you hit that car? Then what?”

I tell myself now that had I not felt so ill and weak, I would have laughed at his awful histrionics and walked out right then. But the truth is that I can still picture that imaginary car (a grey sedan), the curve section of road just north of my apartment, woods thick on either side, where the accident would occur, and the way the cars would strike and crumple on impact. I still picture the baby seat (navy blue, upholstered), too, though curiously, the seat has always been empty.

In a 1987 study published in Social Science Medicine, researcher Irena Heszen-Klemens wrote that in taped conversations between physicians and non-compliant patients, physicians relied most frequently on “authoritarian tactics” and “medical threats [to convey] the doctor's point in an indulgent atmosphere.” She also found that not only were these tactics ineffective, but they actually reduced patient compliance. Yet in her study groups, she concluded, the doctors’ “ego-defensive tactics predominated.” In a similar study from that time doctors questioned admitted that at least 50% of the time they relied on authoritarian tactics to urge compliance.

            Cooperative, concordant, coordinating, co-healing. These words have been suggested to replace “compliant,” which was introduced into the medical lexicon in the 1970s. Perhaps because of research such as Ms. Heszen-Klemens’, doctors are now educated in ways of gaining a patient’s trust, like honoring needs and lifestyles, taking time to answer questions, and explaining why a treatment is well-advised. All of which seems like plain common sense.

I did have the MRI, though I was in tears when I left the neurologist’s office, hating the doctor and agonizing over the cost. Results from the test showed nothing abnormal. Dr. T. never mentioned the seizure again. I stopped taking the anti-seizure medication, just as I stopped taking the anti-heartburn medication I’d required because of the anti-seizure medication, without asking permission or telling him what I’d done.

 

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from "Watching My Mother Hallucinate,"
by Diana Hume Georg

            “You look so much like your mom,” says the starched, very pregnant nurse at the rehab unit where Mom has been sent to recover from her hip surgery, “only younger.”

            My pulse skips whenever someone says this. The first half of my life was devoted to being nothing like her. I thought we were not members of the same species, never mind the same family. Even now, decades later, when I feel close to her and am her primary emotional support, even now, when I have reclaimed her last name as part of my own, even now, when I no longer twitch after an hour in her presence, and do not bolt for the door as soon as I can, but stay as long as I am able, still the idea that our relationship shows on our faces makes me uncomfortable. When I hear her tones in my own voice, I want to take back whatever I said, for it will surely have been admonitory (“Be careful”) or blaming (“If you hadn’t done that--”) or authoritative (“I know all about it”) or high-handed (“You listen to me, mister-man”). It happens when I am tired and witless, and lately that’s a lot.

Which is when I am likeliest to slip in other ways. I felt scared and sad a few years ago when Mom first called me her mother instead of her daughter. “This,” she said with a grand introductory hand-gesture involving the wrist, “is my mother, Alice Ruth.” That time, after saying hello to the health care worker and exchanging a secret look with her, I excused myself, went into the bathroom, and sat down on the toilet seat to have the briefest possible identity crisis. Mom was losing her grip, and I’d known it, but there’s nothing quite like that first time the role-reversal comes out of their mouths. It rips you up.

            Now, though, I’m used to it, or I think I am. Reminded of how much I look like her (only younger), I extend my hand to introduce myself to the new doctor at this rehab center. “Hello,” I say, my grasp firm and in control of this institutional situation, “Janice is my daughter.” But I do not know that I have said this. It simply slipped out. He and the nurse glance at each other, then laugh. I hear the echo of my words and emit a mirthless chirp, do my best Gilda Radner eyeroll, excuse myself, go into the bathroom, and kick the toilet. Too tired to choke up. I’ll do that later while I’m driving home from this place that I’ve left her, where I promised I’d never leave her, this rehab unit of a nursing home, to the residential wing of which I shall consign her permanently next week.

            She’s my daughter, all right. I’m her mother, all right. And like her when the situations were reversed, I make arbitrary decisions to control and tame her, to confine and isolate her, to make her life miserable for no good reason, or so it must seem to her. She feels I am against her, even though I explain that it’s all for the best. Where have I heard that one before? I dust off the worn phrases she threw at me and I throw them back, moldy and lame. “This has to be done. It’s for your own good.”

            The circle is unbroken, by and by, Lord, by and by. I watch her like she used to watch me. I keep a zealous eye on her meds in particular. Last year I copy-edited a book on the overmedication of the nation’s elderly. Seventeen meds is typical, one prescribed for the side effects created by another, created by another. That would never happen to my mom, not while I am in charge. (Even in this, I see her high hand upon my personality in my illusion of control: no one’s going to get away with this on my watch.)

            She’d been on only one med for the previous two years, a mild dose of the anti-depressant Paxil. One time we upped it to see if it might affect her obsessive use of the emergency call button at her assisted living facility—up to 20 times a day she demands attention, wants the curtain open, no, shut, the window open, no, closed, the clock angle changed, the Chapstick located, the bottle of alcohol removed from the table occupied by the radio for fear of spontaneous combustion, the leftover milkshake disposed of because it undoubtedly has a high bacterial count from the hour it’s been unrefrigerated, the water level checked on her room-size humidifier. The water is always at the same level, but that does not matter, she must have it “checked” to prevent fire. That window matter is crucial, for what if a deer jumped through the window (it is open three inches) into her room, perhaps biting her and spreading rabies? But when the increased dosage made no difference and caused her discomfort, I had it cut back. I mean to say, I am on top of this meds thing. Calcium, Tylenol for arthritis, an anti-inflammatory when her system can deal with it, mild laxatives when needed. No big bad pills with columns of side effects. I will not permit it. Or wouldn’t if I knew about it. But the medical people don’t always tell you what they’re doing.

Here’s what happened. When she fell down and was hospitalized for x-rays and tests, my control over her medications dissolved. I didn’t know that the moment you enter a hospital, all bets are off and any meds the doctors order are on. Nothing was broken that time, but they decided to do other tests it would have been irresponsible of me to disallow. They also evaluated her psychologically and found her “mildly paranoid.” When I inquired as to how that diagnosis was reached, it emerged that they’d asked her if she ever felt people were against her, and she’d answered “Yes, sometimes.” How to tell them that this isn’t paranoia, it’s reality, because Mom’s an impossibly demanding person and some of the aides are “against” her, with good reason—at minimum wage, perhaps her correction of their grammar is not welcome. “Don’t say I seen, say I saw,” she instructs them, and refuses to sign paperwork if it contains a misspelled word. “Write it over again,” she demands, “and then perhaps I shall sign it.”

Because of that “diagnosis,” one of her doctors ordered three psychoactive meds, and upped the dosages daily without informing me. Mom, authority-identified, would take anything given to her by a man in a white coat—and it would have to be a man, because like many women in her generation, she does not trust women. On these new medications, she became truly paranoid. Moved from the hospital to rehab for her merely bruised hip, she became convinced she’d been drugged and kidnapped by a “ring” of evil people. Was she not spirited away in a car by strangers? Was she not placed in a bed with high sides, effectively imprisoning her? (A friend points out that considerable evidence supports her interpretation of events.) “By the way,” she whispers to me on the phone, “the kidnappers are homosexuals. Maybe that’s all right with you, dear, but it’s certainly not my cup of tea.” They were trying to involve her in their “shenanigans,” in which patients and staff disappeared behind closed doors, from whence issued both laughter and moaning.

            “You’ve got to get me out of here, they’ve got me in a prison bed.”

            “It’s for your protection, Mom, they’re trying to help you.”

            “No one will receive any help in here, they’re trying to kill me! Maybe you’re in on it, too. If you won’t get me out, I’ll have to escape myself.”

            “Just hang on a bit longer, I’ll come and take care of you.” I live hours away, and with two jobs and a family, packing up to stay with her for a while will take a couple of days. But she does not wait. That night she tries to escape, a valiant act that involves squirming through the small gaps between the safety bars. She crashes to the floor hard, this time really breaking her hip.

 

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Links

For more information about the genre, the journal, and the mission of
Creative Nonfiction, visit www.creativenonfiction.org

For more information about prize-winning author, editor, teacher, and
speaker Lee Gutkind, visit www.leegutkind.com

For more information about the other programs and projects funded by the Jewish Healthcare Foundation, visit www.jhf.org

For more information about the other services and resources provided by VitalSmarts, visit www.vitalsmarts.com

For more information about the American Academy of Critical Care Nurses, visit www.aacn.org