We must learn to use our voices, "however small, and sometimes weak and ineffective," writes physician and ethicist Dr. Linda Peeno, "to understand and change the sources of suffering."
TFP is honored to publish “Voice Lessons,” an important essay by physician and ethicist Linda Peeno. Some of you may already be familiar with her. Laura Dern played Dr. Peeno in the 2002 docudrama “Damaged Care,” and she was featured prominently in “Sicko,” Michael Moore’s 2007 documentary about the U.S. healthcare system. In the 1990s, Peeno’s medical expertise was used by corporate healthcare to deny care that would have saved a patient’s life. Consequently, she quit her high-paying job and has devoted herself over the following decades to defending patients against the sophisticated managed-care machinery that she knows from experience contributes to untold harm. Testifying before Congress in 1996, she asked, “What kind of system have we created when a physician can receive a lucrative income for adding to the suffering of patients?” But “Voice Lessons” is far from a straightforward case for moral heroism. It grapples with the huge toll that Peeno’s advocacy has exacted on her and clears the way for rethinking what the practice of medicine can be. If you’ve ever asked yourself if and how your voice can make a difference, this essay will complicate your question and give you a luminous answer. — MJ
"Weak is my voice, but my resolve is steady." — Anna Akhmatova
By Linda Peeno
Gail can hide the pain, but not the limp. She needs a hip replacement. Though she works six, sometimes seven days a week, she has no benefits, no insurance. Medicine is a luxury she can’t afford. Smiling anyway, Gail calls my name—she always remembers names—and leads me and my daughter Brie to a table.
We’ve come to celebrate. After years of social work, my daughter went back to school at night for certification to teach. It’s been two long years of juggling social work, new baby, marital upheaval. Now she has her own classroom, bursting with fourth graders, whose energy and excitement justify the difficulties. Lunch at this local diner is a splurge for us. Over the past few years, we’ve exhausted our combined resources on unplanned family and work changes. Whoever first said money doesn’t buy happiness didn’t have student loans, medical bills, and insufficient income to meet basic needs. But life is tough for many. Looking around, I suspect nearly everyone here harbors some hardship.
Brie’s phone rings. “The insurance company,” she says quickly, “I have to take this.” By the time we sit, she’s pleading with someone on the phone. Piecing together the details, I figure her company has refused to pay for a recent surgical procedure.
At first this doesn’t make any sense. I am a former medical director—one of those physicians who works for insurance companies to control how money is spent on patients. After leaving my last corporate job, I have used my inside knowledge to help physicians and patients decode harmful insurance practices. When Brie was first told she needed an expensive test and surgery, I got to work reviewing her contract, gathering information, and making calls to get her approval letters and authorization numbers. I did everything that could be done.
Surely there must be a mistake.
When the first clerk puts her on hold, my daughter pulls a letter from her purse. “This came today. The hospital hasn’t been paid. They’re demanding the full amount or they’ll send me to collections. When I called, someone in billing told me the insurance company had denied payment for the surgery.”
She sits, now pinned to the phone. Instead of hearing about her new students, I begin to take notes for her, logging names and comments as she is passed along from clerk to clerk. I fume as we put together the story. It seems the company used a cleverly disguised tactic designed to allow them to deny final payment, even after an initial approval. A woman in the “utilization management department” informs Brie the approval letter included a critical statement: “Authorization does not guarantee payment.” She reads it loudly enough for me to hear from the phone.
“I don’t know what that means,” Brie says, “I don’t remember seeing that in my letter.”
I cringe. I know what it means. It’s a dangerous clause most patients never notice until it is evoked after they have received a test or procedure they believed would be covered. Insurance companies use it to give them the right to deny claims after they determine the costs. This tactic gives the companies an escape clause, leaving patients, hospitals, and healthcare professionals with the financial burdens for tests and procedures they thought would be paid.
“Some of us can do more than others, but we can each do something. Some may be called by circumstances to costly self-giving. This kind of sacrifice, Rabbi Heschel writes, is not a loss of self, but a gain, a return to God what we have received so that we may bestow it in the cause of good. ‘Such giving,’ Heschel reminds me, ‘is a form of thanksgiving.’ A gift of self. What could be more generous?”
After the managed care backlash in the late 1990s, insurance companies shifted to more insidious profiteering tactics. When approval for a test or procedure is requested before it is done—something called a “prospective” review—companies learned they could risk legal action for patient harm and death. It became more effective to review records after the patient was treated. There was always some way to deem a test or procedure “medically unnecessary” or use a dozen tricky excuses for denials.
The woman on the phone says something else I cannot make out. Now Brie looks more panicked than angry. “That’s impossible,” she whimpers into the phone. I sit helplessly until she mouths to me: “They’ve denied the test too.”
Now I feel sick. I quickly estimate that the cost of the diagnostic test and the procedure will come to several thousands of dollars. It might as well be several million. Neither of us can come up with any extra money now. As a new teacher, Brie makes less than $30,000 a year. I left my lucrative insurance work and the practice of medicine to advocate for patients—the side of healthcare with little money. We each do “great work,” or so we are told by many people. But good deeds do not pay bills.
I want to scream. Brie does not know how bad things have become for me. Over the year, I’ve sunk into a hole, one made deeper and darker by compounding failures. For over a decade, I poured out every resource I had—time, energy and money—in an attempt to educate and activate individuals and groups about our callous and deadly healthcare system. As I witnessed—and even participated in—its increasing casualties, the mounting sense of urgency prompted me to throw all I had into the work. I risked everything, from my professional advancement to my personal life, only to watch so many—even other doctors, plaintiff lawyers, legislators, and other advocates who were supposed to help people—find ways to benefit from the broken system. I too reached a point where healthcare battles in the press, court rooms, legislative halls, and speaking events rewarded me more than patients I tried to help.
Now, not only have I done little to protect patients, I can’t even protect my own daughter.
Now Brie’s words mingle with fragments of conversation around me. Everyone seems to be in pain. A waitress with swollen ankles shuffles from table to table. A woman behind me talks softly to a friend about how her job in a factory is slowly killing her, but she needs her insurance and cannot leave. Two other women behind Brie discuss an aging relative’s mistreatment in a nursing home. Voices rise and fall, their notes of sadness, fear and anxiety commingling into a common fugue enveloping me. We live in a world of life-destroying complexities from which few of us have protection.
Yet so much of this misery could be avoided or corrected. Webs of power and profit are spun from individuals who could choose different values and goals. The connections, though, between our actions and their effects can be negated by distance, disavowal, and disregard. William Butler Yeats, in his poem, “The Choice”, probes us with the question: “When (our) story’s finished, what’s the news?” What is the sum of our life? Yeats asks further: Did a day’s vanity ever lead to a night’s remorse? Did we cause or relieve suffering?
“Few are guilty, but all are responsible,” wrote Rabbi Abraham Joshua Heschel, the great Jewish philosopher and theologian whose mother and three of his four sisters, along with many members of his extended family and countless friends and colleagues, perished in the Holocaust. We are called to answer for the suffering of others, to make amends in whatever ways we can. Everything we do, he reminds us, leaves its imprint upon the world through our breath, thought, speech. I think how I have been formed by Heschel, how my life to this point has been directed by a faith that we are called to open our lives to others. Once we’re attentive to their needs, we can offer ourselves as solace; we can use our voices, however small, and sometimes weak and ineffective, to understand and change the sources of suffering. This is the essence of being human, Heschel writes, and “our being human is always on trial, full of risk, precarious.” But the needs of others make demands of us, they interrupt our lives, upend our plans, and can often make a mess of things. It’s why we have so many ways to justify our self-centeredness, causing us, as Heschel says, to “always be in danger of forfeiting our humanity.”
Gail carries a heavy platter to a table near us. A barely audible moan escapes as she positions her leg. She twists around to place plates on the other side of the table. I wince, imagining the additional pain that it causes. How does she bear this hour after hour, day after day? Who makes amends to her? Who is guilty? Who is responsible?
* * *
My mind drifts back to several months before, when I spoke to a medical ethics class. The students had just watched a made-for-TV movie—“Damaged Care”—released in 2002 about my struggles to protect patients. One of the students observed how little had been accomplished. “You’ve gambled your career for nothing. Why?”
She’s right. The healthcare system has just gotten worse. What was I thinking all those years ago? I had it all: marriage to another doctor with three wonderful children. Compared to the fatiguing practice of medicine, I had a coveted six-figure income and a corner office with floor-to-ceiling windows. For the first time in my life, I had beautiful clothes, weekly manicures and facials, expensive salon appointments. It was lucrative, easy work. By all standards around me, I was successful. What in the world possessed me to sacrifice these accomplishments for a David-and-Goliath struggle doomed to fail?
I should be honest and tell the students there are days when it doesn’t feel worth it. I have lost so much—the practice of medicine I so dearly loved, my marriage, my dreams. But like a priest who no longer believes in God, I keep spewing out homilies based on predictable gospels: Be a hero. Change the world. Find meaning in your life. Be compassionate. One person can make a difference.
On and on I go. It’s the stuff of a thousand inspirational and pop psychology books, simple messages for aspiring professionals who are desperate to make their sacrifices matter. The demands of life and work will grind away at ideals and values. Few of us knowingly sell our souls, but we do. Our spirits can be leached away by fatigue, escape, apathy, or retributions. How can we survive, much less surmount, the needs to make a difference and try to change systems?
None of us can elude judgments about right and wrong. In an entangled, complex world, it isn’t often so clear cut. Even harder will be making choices and living with them. Our actions—and inactions—can either harm or help another person. Few ethics classes address how we are to be ethical in unethical systems, or how we bear the consequences of our ethical choices. My worldly teenager asked me years ago what I would have done if I was a single mother and needed money to take care of my children. What would I do or not do to feed them? Are there times when we cannot afford ethics? Maybe morality is a luxury, something one can live only if it is easy and costs little—or preferably nothing.
“You could have gone to the top of some company. Broken the glass ceiling and helped other women?”
“Yes,” I admit, “but that wouldn’t have been ‘success’ to me…”
That was my cue to launch into another sermon on “inner values” and “alternative measures of success.” Playing the martyr, I talk about forsaking the trappings of material success that could have come from corporate climbing had I just played the game. At my core, I like to expound, I am a physician who takes seriously the ethical responsibility to do no harm to patients, no matter where I am in the system.
Oh, St. Hippocrates… You’ve caused me so much trouble.
I can preach for hours about ethics and heroics—or at least make impressive PowerPoint presentations. “Besides,” I say with a bit of schmaltz I hate, “I don’t need much. Just a sense that my voice makes a difference.” What a cliché. I no longer even know what that means.
“But…,” she begins.
Before she can finish, another woman sitting next to her spits out: “But you haven’t done anything but screw up your career. I think you’re stupid!”
She stuns me. Others around her murmur agreement. This has never happened before. I can’t speak.
The students must have sensed my hypocrisy that day. Yes, maybe I was stupid. Ignorant. Naïve. Why would I encourage any of them to do something so fraught with potential failure and pain? And to do so willingly? Every day these students are studying, competing, incurring debts, forgoing parts of their life in pursuit of professional dreams. How could anyone encourage them to do something that might make their lives more difficult? Actions that can risk families, careers, security?
As I leave the classroom, few of the students look at me. I failed them. They caught me in a moment of loss and pain. Even my lessons from Heschel hadn’t come through. I never had a chance to mention how he has been a guiding light, a person who helped me understand the calling of a doctor is not limited to the exam room. He had told doctors at the 1964 American Medical Association convention that a doctor's role goes beyond caring for the sick to serving all people, the ill and the well. That eased my guilt about leaving the direct practice of medicine for a type of doctoring that seemed less defined and certain. “The doctor,” he wrote, “is a major source of moral energy affecting the spiritual texture and substance of the entire society.” I took that to mean our work isn’t just at the bedside. For me, it extended to corporate boardrooms as well.
We are all potential patients—no one is perfect, invulnerable, or immortal. We are biological and spiritual beings who will each suffer in some particular way during our unpredictable lives. We cannot know what obstacles we will face or what will be required of us. But we do know there will be times when we need someone to whom we can entrust our most intimate selves. We will need the compassion and selflessness of others, and we should pray there will be many along the way who respond with care.
Physicians are witnesses to human vulnerability and suffering. How can worldly success and material obsession ever be more important than the life of another human being? Why was it once so easy for me to convert patients to profits in exchange for bonuses? Didn’t Emmanuel Levinas, the French philosopher, once claim the justification of another’s pain is the source for all immorality?
* * *
Just before leaving that day to go to the ethics class, I discovered a flat tire. I didn’t have time to figure out how to get it fixed, and there wasn’t any money for it anyway. An attentive neighbor offered to take me to the university, which was close to an art museum. I had planned to attend the screening of a film exhibit and was certain I could find someone to give me a ride home afterwards.
After the disastrous ethics class, the short walk to the museum dried my eyes and cleared my head. Yet the woman’s searing comment wouldn’t leave me, now amplifying the worries about the flat tire and the lack of money. The students were right: Had it not been for my professional foolishness, the tire wouldn’t have even registered as a problem. I could be thinking of bonuses and vacations instead. Maybe it is stupid to care about others when you can’t even care about yourself, especially when costs can be too great for a single person. All my talk about “having a voice” seemed simplistic and even ridiculous. One little voice against a multibillion-dollar industry? What folly. What use is a voice when it is only a little lonely sob? Or no one hears or cares?
I arrived at the museum before any of the group. The film was set up to show continuously in a darkened space in the center of the museum. There were two screens opposite each other, so I found a seat in the middle. The project, called “Turbulent,” was created by an Iranian woman, Shirin Neshat. I had come in just before a new cycle began, so I had a moment of solitude and darkness.
Suddenly, on the screen to my left, a man in a plain white shirt appeared and began to sing. He stood before an audience of similarly dressed men who admired his performance. At first, his back was to me, and I could only watch the expressionless faces of the men sitting before him.
As he finished, a shrouded woman appeared on the opposite screen. She stood alone on a dark balcony, facing toward the front of an empty theater. She began with a soft chant that grew through layers of wordless keening and ululations. The sound seemed to come from her entire body, like some ancient well holding the suffering cries of the world. Soon the man in the other screen turns to face outward, appearing to hear her. In the end, only her voice commanded all attention and force.
I watched the 10-minute film again and again. Even when the group left the area for the discussion, I slipped back into the room and continued to watch it repeatedly. I could not get enough of the woman’s voice. I longed to have it wrap around me, seep into me, until it gathered together all the wordless pain inside of me. I was torn away finally by the friend who had agreed to take me home.
When I arrived, I noticed the front porch light was out. I opened the back door and no lights worked. I sunk into a chair in the dark, cold kitchen. What will I do now?
In order to devote myself to the demanding and often unpaid work for patient protection, I lived on erratic payments from small consulting projects. Expecting a check to come any day, I’d thought I had a little more time to pay my electricity and heating bill. Now I had two urgent needs for money and nothing coming in for a week or more.
By morning the temperature had reached 33 degrees inside the house. If I needed any confirmation about the foolish futility of my heroics, it was this cold, despondent moment. These were the consequences ethics classes never talked about. How much will it cost any one of us to do the right thing? What sacrifices will be required? Which of us can bear the additional suffering, especially to others who depend upon us? If I was a role model for anything, it was how to fail.
That morning, I got another ride from my neighbor. We went to a pawn shop nearby and I sold my wedding ring. Twenty-five years earlier, at the end of medical school, my fiancé bought the ring, spending more than a couple thousand dollars we didn’t have to mark the promise of a long life together in medicine. This day, when I had neither marriage nor medicine, I got $400—just enough to fix one flat tire and turn on the electricity and heat for another month.
* * *
Brie drops her phone to the table, our precious hour stolen by this ordeal. Our food has come and gone. We have wasted $20 on a meal we hardly touched. Now the medical bills could exceed a third of her salary for the coming year. What kind of world do we live in, I wonder, where an industry’s relentless pursuit of profit can wreck lives so easily? Heschel wrote about this too, calling it the “Sisyphus complex,” in which we cure a patient physically but destroy her economically. “Is it a triumph,” he asked, “when the appendix is removed and bitterness is imbued?” And worse, I implore, the diseased appendix remains and death ensues?
As we rise from our seats, I look for Gail. She is across the room. Now I can see her ankles are swollen too. She has stopped to help an elderly woman cut her food. She stands leaning slightly against a chair, almost imperceptibly adjusting her right leg to ease the pain. She dabs her eyes with a tissue just taken from her friend.
Another woman, sitting alone near the door, lowers her head. She hunches there, over a bowl of soup, amidst the clinking of dishes and muffled voices, making silent words. Prayer, Heschel writes, allows us to see the world in a different way, one in which none of us is a hub. We comprise spokes in many wheels. We are attached to one another. We need each other. The suffering of any other human being is my suffering too.
Some of us can do more than others, but we can each do something. Some may be called by circumstances to costly self-giving. This kind of sacrifice, Heschel writes, is not a loss of self, but a gain, a return to God what we have received so that we may bestow it in the cause of good. “Such giving,” Heschel reminds me, “is a form of thanksgiving.” A gift of self. What could be more generous?
I look about the room. Most have come here for the comfort of food, and, maybe for some, the warmth of human contact. For a moment, I sense our mutual fragility, the hidden and unspoken pain so many of us carry. I imagine going to each person in this space, exchanging names and offering a few words. Nothing much. Just making a connection face to face that recognizes our shared fates. The question of ethics, I realize, isn’t so much about what to do in some situation or other—like solving math problems with the right formulas—it’s more about how we can be the who we must be if deep care for others is to happen?
Although our heartbreaking gestures seem so small against forces with great destruction, words, according to Heschel, store a secret power. Even if any particular voice does not better the world directly, our words, Heschel writes, “soften the harshness of fear and unfold the wings of hope. Our thoughts, tiny and feeble, become powerful in their wake.”
No indifference here. Just small, steadfast gestures, prayers, voices…
I hear my name. Gail has turned from a table across the room and comes limping toward me. I can almost feel the pain, the joint broken down, tearing at her tissue, bone grinding against bone. Every step must bring unbearable pain, yet she walks the unnecessary steps to give me a hug.
“Linda,” Gail sings out, “you take care.”
Dr. Linda Peeno, a former medical reviewer in the healthcare insurance industry, is a physician, ethicist, and advocate for patients’ rights.
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