Needless Suffering: How Society Fails Those with Chronic Pain

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PROLOGUE

The Forest for the Trees

Love the poor. Do you know the poor of your place, of your city?

Find them. Maybe they are right in your own family.

Mother Teresa, Love: The Words and Inspiration of Mother Teresa

It was a morning in fall 2003, a typical day in the office. There was more to do than time allowed. Still, I did my best to keep up with the demands of my comprehensive pain management practice. I offered soup-to-nuts care for as many pain patients as I could see. I had long since stopped taking on new patients. In a world where so many suffer, sometimes needlessly, I had learned that I am only one person and I could only do what I could do. My goal was to do the best I could for the person in the room with me.

While most would consider my job stressful, I found joy in doing it. One of my role models is Mother Teresa, who found satisfaction in ministering to the poorest of the poor, those abandoned by most of society. I see parallels between the poor and those in chronic pain, and I have worked hard medically in my clinic, and also socially at the local, state, and sometimes national levels, to help raise awareness of the plight of these individuals—the poorest of the poor of the medical world.

It seems ironic that in a profession where we strive to keep people alive, death is a constant companion, often just around the corner. In my years as a physician, I’ve come to feel that life is a gift, a temporary one. It is our job to do the best with the gift we are fortunate enough to be given. Death is inevitable. The only aspect of death I feared was the possibility that I might someday be responsible for causing the death of another, a very real possibility in medicine. That particular day, I marveled at having been able to do my work solo for over fifteen years. Others had told me there would be days when bad things would happen. So far I had been fortunate—nothing really bad had ever happened to any of my patients, and I was very proud of that record. But on that typical day, something did happen, which changed everything for me.

As I drove to work, I tuned in to the local news on the radio and heard that a twenty-eight-year-old male had succumbed to an accidental overdose the night before. His name was not familiar to me. Shortly after arriving at work, I received a message that a longtime patient needed to see me right away. She wouldn’t give my secretary a reason, only insisted it was urgent. Given the stress of the day, I was reluctant to oblige. Jane (not her actual name) suffered valiantly from a very difficult pain syndrome. While many would resort to large doses to treat the problem she faced, she relied on a minimum of pain medication. Her life had been in as much order as it could be until the insurance company changed its posture toward her.

Long before I met her, Jane suffered from a complicated spine problem, a herniated (ruptured) disc in her low back. Three operations failed to resolve the problem, and she developed a condition called reflex sympathetic dystrophy, which did not respond to therapies. She complained of a burning pain in her leg and severe pain in her back. She refused a fourth operation, a fusion to stabilize her back, and did her best to live with her pain.

When things seemed to be going as well as could be expected, she reherniated and developed weakness in her legs and urinary incontinence (a condition known as cauda equina syndrome). She so feared another operation that she kept her symptoms to herself, only reluctantly informing me of them several weeks later. An MRI confirmed the new disc herniation, which substantially narrowed her spinal canal. I told her she really needed to see a surgeon, but she wished to see how the tincture of time worked. She was lucky. She regained bladder function, and her legs got stronger. However, her pain increased substantially, and her ability to walk decreased. To help her get around, I requested that her insurance company provide her a motorized scooter. The company assigned a rehabilitation nurse to verify the need for this device. It was not clear what this individual’s agenda was, but she launched an investigation that changed Jane’s life.

With virtually no compassion, the nurse questioned every service we provided for Jane. She hired private investigators to follow her every move. They found little, but what little they found, they embellished. Jane became quite aware that she was being followed, and she lived in fear. Without the insurance, she could not afford what little support she was receiving. Though I advised her to stay as active as she could, she became a recluse, fearing that anything she did would be misinterpreted. The insurance company challenged her disability; and she was called before the state labor board, where the private investigator showed a short video of her mowing the lawn on a riding mower. What had been a half-hour outlet for my patient became an albatross. The insurance company used the video to claim Jane was faking her injuries and could do much more than she claimed. Despite the facts, which verified her complaints, the insurance company still refused to accept her symptoms and her limitations as real.

I was livid and wrote letter after letter angrily supporting my patient. To counter, the insurance company hired a well-respected expert who, while lauding my efforts, stated that I had lost my objectivity, and was mired in the woods, seeing only the forest from [sic] the trees. He also stated that Jane was addicted to the six Percocet she took each day, a stable dose that she had not changed in years. His impressions were derived merely from a chart review. He did take the time to chat with me on the phone, but he never met with me or my patient.

The day of the labor board hearing eventually arrived. While I hoped to help Jane, I also saw this as a pivotal moment. If the insurance company won, I feared that pain management specialists and their patients would lose everything we had worked for in achieving acceptance of compassionate prescription of opiates for all pain patients in New Hampshire who needed them.

In the hearing, Jane’s attorney patiently addressed all the issues. What fascinated me was that my comments attracted attention not only from the three members of the panel, but also from the opposing counsel, who took me aside after the hearing and shared a number of personal stories of friends in pain and the lack of care they received. He asked me questions about how they could receive adequate care. I left satisfied, feeling I had done my job.

Several weeks later, we found that Jane had won her case. Although I was convinced we had won a major victory for the pain community, Jane herself was not a winner. The insurance company’s failure to listen to her, believe her, and treat her compassionately had a lasting effect. A pain syndrome that had been easy to control became impossible. She required repeated hospital admissions in a vain effort to control her pain. Pain was not her problem—fear was. She suffered from a very real posttraumatic stress disorder and became afraid of modern medicine. She feared repercussions from the insurance company and the legal system if she did any of the things that made life worthwhile, worrying that someone might be watching. In effect, she had lost her life. The medications did little to quell her growing pain and anxiety. Having to wait ninety days for the labor board decision did not help. Even after she heard the good news, her pain was not relieved. Never again could we control it.

I lost too. I lost faith in our system, a faith I still have not regained.

Now, several years later, she was begging to see me. Quite distraught, she told me she had come to warn me. That morning, she had found her son dead. He was the person I had heard about on the radio. He had been out partying the night before, and apparently had taken a cocktail of drugs, possibly including some of Jane’s medications. The police had cleared the family from the house and searched it. They found all her medicines. She asked for them to be returned but was told they were evidence, and the investigating officer informed her that they were going to take a long hard look at me.

Several weeks later, a sheriff arrived at our office representing the medical board, with subpoenas for the medical records of several of my patients. This development shattered my sense of immunity, my shield, and I was laid bare. Someone I had never met was dead, and someone else was blaming me. That is a terrible cross to bear. While I took consolation in the facts that I was a founding member of the New Hampshire State Pain Management Task Force, had served on two state boards overseeing physical therapists and occupational therapists, and had a very good reputation in the community, I still realized that my life, my career, and everything I had worked so hard to attain was now in the hands of others. At the same time, I struggled to keep things in their proper perspective and grieve the unnecessary loss of a young life.

My practice manager notified our attorney, who immediately made things worse by suggesting we consult a criminal attorney to see if I was at any risk for criminal prosecution. As I saw it, my only crime was to do my best to relieve Jane’s suffering. The thought that someone would even consider charging me with a crime was unbearable. Fortunately, the lawyers quickly concluded it was unlikely that I would be charged, but the damage to my psyche was done.

It took a full year for the medical board to render a decision favorable to me. The wait was torture, compounded every few months when another sheriff arrived with yet another subpoena requesting yet another chart. I learned of physicians in other states who had endured similar trials. I heard of two who were arrested—one set up by a sting operation, convicted of drug dealing, and sentenced to jail. As I reviewed their stories, it seemed obvious that the only thing they were guilty of was caring too much, enough to be vulnerable to the indiscretions of others. I heard of friends in the pain community who also had been investigated.

I went into medicine because I wanted to make a difference in other people’s lives. I never saw myself as a social activist, but I suddenly realized that was what I had become. I had come to see pain management in America as the travesty it was, and I longed to change that, to bring attention to the plight of my patients.

I suddenly began to live in fear. I feared for my family. What if I were arrested, tried, and found guilty? What would happen to my patients if I were sent to jail? Although my attorney told me this would not happen, I still did not feel safe. Every time I saw a police car or heard the doorbell ring, I feared they were coming for me.

I began to fear my patients even as I feared for them. To the police, I was not a compassionate doctor; I had become a prescriber. For the first time in years, I feared that one of my patients would accuse me of leading him astray, and began to question whether, in prescribing opiates, I was really doing the right thing for them. I analyzed the trials and tribulations of the great social activists. Knowing that they suffered and questioned their own actions as I was questioning mine, I realized that we grow from introspection. Still, I wondered if my passion for helping my patients warranted the potential punishment I saw looming. I wondered if it was fair for my family to suffer the repercussions of my crusade. I recalled a newspaper photo of a child of one of the convicted doctors, crying as her father was led off to prison. In my mind, I saw that child as my own.

In order to bolster our position, my attorney proposed that we get a supportive opinion from an expert. Over the course of Jane’s treatment, I had already obtained several supportive second opinions, but he felt we needed one from a disinterested party. We searched for such a person, and based on the recommendations of a friend, we contacted someone who agreed to review the voluminous chart.

Again, this expert never met me or my patient, nor did he make any attempt to do so, something I consider an egregious error. He made no comment on my management of the patient, but said that he would not endorse my care of her because he felt I had lost my objectivity and was, again, not seeing the forest from the trees. It was no coincidence that he used the same incorrect phrase that the independent evaluator had used, since we had given him that report to review. He went a step further and said that I saw myself as a hero, on a campaign to serve the interests of my patients, not amenable to the suggestions of others.

To the second charge, I plead not guilty. When I questioned my actions, which I frequently did, I sought the advice of others.

To the charge of not seeing the forest for the trees, I do plead guilty and offer no apologies. As a medical student, I was taught to value the thoughts and concerns of the patient. Dr. Robert Joynt taught me to listen to your patients, they might be trying to tell you something. Dr. Henry Herrara taught me that each patient is an individual, and we need to learn to appreciate each one for his or her uniqueness. I contend that to have the courage to listen to the patient, you have to enter into the forest; you cannot appreciate the individuality of each patient from the outside. You do risk losing objectivity by doing so, but it is a risk that must be taken.

Entering into the forest generates strong feelings. Dr. George Engel taught me that a doctor can examine those feelings and use them diagnostically to better understand the patient and himself. He taught me that my feelings are a very important piece of data, which must be studied and understood. To do this, I must venture into the forest and summon the courage to talk to the patient, listen, and accept his or her individuality. The physician must be aware that preconceived notions can be erroneous, dangerous, and sometimes harmful. When you stare at the trees from the outside, you inevitably rely on those preconceived notions, and that is more problematic than venturing inside. Unfortunately, that is how many doctors usually approach the pain patient.

I have spent the past twenty-eight years studying pain from every perspective possible. I have sought counsel from as many sages as I could. Some advice I valued and some I discounted, but I always felt the house of pain management had many rooms and a place for everyone. An individual physician, if he or she tries, can learn something from everyone. There is no greater source of wisdom, however, than the patient.

My travels into the forest of the pain patient have created an uncomfortable cynicism within me. I have come to appreciate that the way the pain patient is treated is not just a medical issue. The treatment of any disability is a bio-psycho-social phenomenon that involves every aspect of our society.

I have also come to understand how society feels about the pain patient, best summed up in an episode of the Brady Bunch. Marcia, shortly after learning how to drive, rear-ends another driver. The driver sues her and appears in court with a cane, a collar, and a pitiful look—a societal stereotype of the pain patient as a fraud who embellishes his symptoms for personal gain or as a slacker who uses pain to avoid the responsibilities of life. It is amazing how this stereotype changes when we are the ones in pain. Too often I hear the words: I never believed anyone’s pain until it happened to me—including from the mouths of two law enforcement officers and an insurance adjustor.

This book is about a social problem: undertreated pain in America and its social causes and ramifications. It is written from two perspectives: it takes a step back out of the forest in order to examine how our society manages the problem of pain in America, while also offering the view from inside the forest and the pain patient’s individual experience. My goal is to change the way people and society perceive and treat those who suffer from chronic pain.

Therefore, this book is not merely a critique of how health-care providers address these issues. It is a critique of society as a whole.

What are the unintended effects of well-intentioned health-care reforms on those who suffer?

How do the bottom-line mentality in medicine, the legal system, insurance companies, and business harm pain patients unnecessarily?

How do the use of computer medical records and practitioner productivity incentives adversely affect doctor-patient communication?

How does the intellectual dishonesty of health-care providers harm pain patients?

How do our system of entitlements and the structure of our labor force conspire to keep pain patients from being as productive as they can be?

In addition to pointing out problems, for each one I offer specific, practical policy recommendations.

This book is for chronic pain patients, family members, health-care providers, businessmen and women, attorneys, insurance company representatives, and the public at large. We all can learn a lot from each other, and each of us has an important role to play in minimizing the needless suffering of those in pain.

What I say here is based on my twenty-eight-year experience as a pain specialist. My current specialty is chronic spine pain management. Thus many examples I provide are spine related. However, throughout my career I have managed pain along its entire continuum, and I grew up in a home where pain was no stranger. My examples generalize well to other types of pain.

I intend this book to be provocative. I do not expect the reader to agree with everything I say, and I will be disappointed if that proves to be the case. I do hope to make the reader think, though; to think about a costly problem that is too often ignored and creates too much needless suffering.

Throughout I cite scriptural and other philosophical writings. While I am a practicing Roman Catholic, I see value in all inspired writings, no matter the faith. I am most inspired by Mother Teresa. My family has been fortunate enough to support a family in Kolkata, India, that was touched directly by Mother Teresa. In visiting them, I have come to appreciate Mother’s actions and see how one person, armed only with faith, through her ministrations to the poorest of the poor can change a whole city, a whole country, and the whole world. I long to be merely a shadow of the person she was.

Finally, I frequently refer to the Golden Rule first taught me by my mother: Do unto others as you would have them do unto you. In various forms, this credo is shared by all major religions and all cultures. It is the basis for most professional codes of ethics. This book explores the gap between what we say we will do for those in need and what we actually do—myself included—because of ignorance, laziness, and greed. I hope to challenge all of us to do better, not for ourselves, but for those who suffer.

PART ONE

Poor Man, Pained Man

The biggest disease today is not leprosy or tuberculosis (or pain), but rather the feeling of being unwanted, uncared for, and deserted by everybody. The greatest evil is the lack of love and charity, the terrible indifference toward one’s neighbor.

Mother Teresa, Love: The Words and Inspirations of Mother Teresa

According to a report from the Institute of Medicine, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research, published in 2011,¹ one hundred million people in the United States suffer from chronic pain. Some are calling this a public health crisis, which it is; however, that is not the biggest problem that intractable pain poses. The real problem is that most of us are unaware the problem exists at all. If we are aware, too often we trivialize it. Even those burdened with pain are often unaware. Too many are convinced they are the only ones, and so they suffer in isolation. That is the problem.

It would be easy for me to condemn others for failing to appreciate this crisis. That would be hypocritical for me to do, for in the not-too-distant past, I too was ignorant. That seems so strange for a doctor and the son of someone suffering from chronic pain to say, but it is true; therefore, I will hold my judgment. However, as if guided by fate or destiny or my mother, I came to understand the problem chronic pain creates for all of us. This transformation did not occur overnight, but by trial and error over several years. In this section, I would like to share the process of my transformation with you. In doing so, I will share what I have learned about pain from a biological, psychological, and social perspective. In doing so, I hope I can help begin to transform your thoughts as well.

ONE

A Young Doctor Transformed by a Man in Pain

Pain is the most terrible of all the lords of mankind.

Albert Schweitzer, On the Edge of the Primeval Forest

The year was 1986. I was a resident in physical medicine and rehabilitation and had been asked to see a man who had recently had back surgery.

Have fun, my colleagues joked. Nothing like wasting time on a chronic painer! Those back patients were all the same, weren’t they? Just lazy people looking for a ticket out of their responsibilities. X-rays all negative. No objective explanation for their pain. If they only got off their butts and lost some weight, they would be fine. Why did they have to waste my time? I had more important things to do than treat people who weren’t going to get better no matter what I did. All they wanted were drugs. At least, that’s what my professor said.

I hardly thought that my encounter with Mr. Smith would change my life.

The Veteran’s Administration hospital where I was training was very large, and it was a long walk to this man’s room. I purposely made the walk longer, for I dreaded what was at the end of it. But eventually, I arrived at his room and reluctantly entered. It was one of the old VA four-bed rooms with flimsy yellow curtains separating the beds. I looked for bed B, saw the patient, Mr. Smith, and watched him for several moments.

Mr. Smith lay uncomfortably in his bed. Every few minutes he shifted in agony. Then he was still, the grimace on his face replaced by a look of fear. What did he fear, I wondered? Several minutes later, the agony reappeared; his face contorted in a manner only pain can produce.

At first, I was suckered into this performance. Who could fake such an act? But the doctors who had operated on him told me nothing was wrong, and it was my job to get him off his butt and out of the hospital. They couldn’t be wrong, could they? I didn’t know it, but I was caught in a battle. Whom should I believe, patient or doctor?

I sat down next to the man, coldly introduced myself, and dutifully began to take a history. Hello, Mr. Smith. I am Dr. Nagel, and I am here to help get you back on your feet, I said with no enthusiasm. Mr. Smith showed little acknowledgment of me. He continued to alternate between expressions of fear and agony. But as we talked, his story unfolded.

Mr. Smith was forty-seven. He had been born in the same city and with the same hopes as me, maybe even at the same hospital. His parents didn’t have a lot of money, so he had to work after school. Up at 5:00 AM to do homework, off to school, then to work, and back home by 10:00 PM five days a week. He worked on Saturdays too. His job was physical, and pain was a part of his life. School didn’t offer him much, so he left to work full-time. When he turned eighteen, he joined the army. He served in Korea and returned with medals. He was a hero, but he didn’t have time to relish his accomplishments. Medals look good on shelves, but they don’t pay the bills.

He returned to work. The best jobs were at the steel plants. They were physically demanding, but the pay was good. At twenty, he was a war veteran and a work veteran. At twenty-one he had his first back injury. He ignored it. Pain was part of life, and a hard worker had back pain. It was a medal, an award for his labors. Over the years, though, the pain increased. At first, it was just in his back. Then it started to go down his leg. First it was just a little numbness, but then an electrical fire shot through him that tore at his soul.

He had never been to a doctor in his life. Pain is part of life, he kept telling himself, but over time he believed this less and less. He decided his pain was one medal he wanted to send back. Disabled by pain at twenty-five, he wanted to see if the doctors could help him.

The doctor he saw was very supportive. After an examination and tests, he told Mr. Smith he had a ruptured disc. All he needed was a simple operation, and he’d be back to his old self in no time. He was told he had a 99 percent chance of being cured. Mr. Smith thought those were pretty good odds. He told his boss he needed an operation, and he’d be back soon.

One of Mr. Smith’s buddies drove him to the hospital. Back then, the early 1970s, patients typically stayed in the hospital for a few weeks after such an operation. As he limped slowly in, he wasn’t scared. The words 99 percent chance rang in his ears.

A nurse showed Mr. Smith to his room, handed him a roll of cloth that she informed him was his ensemble for the next few weeks, instructed him to change his clothes, and then announced the schedule for the next few days. Blood tests, EKG, meals, and so on. She handed him a menu card and left.

On the day of the surgery, as two orderlies rolled him to the operating room on a gurney, he kept telling himself, Ninety-nine percent . . .

He awoke several hours later. He was not better. His pain was horrible, much worse than anything he had ever had before. It seared down his leg like a hot burning poker. Before the surgery it had let up sometimes; now it didn’t. He begged the nurse for help, but she told him it wasn’t time for his pain medication. As she left the room, he did something he had never done before. He cried.

His doctor reassured him that his pain was normal and would get better, but with each passing day, that prophecy failed to materialize. Each day, the doctor spent less time in the room, and stood farther and farther away, afraid to confront his failure.

Two weeks passed, two weeks of agony. The surgeon entered the room and announced it was time for Mr. Smith to go home.

I cannot go home like this! Mr. Smith cried. I can’t walk or take care of myself, or go to work. What am I to do?

I am sorry, Mr. Smith, the surgeon said. The surgery was a success. There must be some problem with you. I have someone I would like you to see. You will be leaving us tomorrow. I will see you in my office in two months. Good-bye.

The surgeon turned and left before Mr. Smith could respond. The nurse handed him an appointment card that said: Dr. Wilfred Kröninger, Practice of Psychiatry. Mr. Smith started to doubt himself. The surgery was a success. This doctor feels it is all in my head. Is it? What is the matter with me? I will overcome this.

He tried to pretend there was no pain, but with each movement came that terrible burning that told him otherwise. He felt lost and, much worse, dependent. As he left the hospital, he greeted the self he had left behind three weeks before. The difference was that he had walked calmly into the hospital. Now he limped out, a beaten man. He had lost his confidence. The doctor himself had told him all this was in his head. Why couldn’t he control this pain? He looked at the prescriptions he had been given. None were for pain.

Over the next several weeks, Mr. Smith struggled to convince himself he had no pain. He saw Dr. Kröninger, who examined every crevice of his psyche. After several weeks, Mr. Smith was told that his whole problem was some internal conflict over the way his mother had treated him at an early age. If he could give up that conflict, he could give up his pain.

That was too much for Mr. Smith. He stormed out of the room and returned to his apartment. Now what to do? He was convinced that there was someone, somewhere, who could help him. The problem was that there was no clear guidance to help him find that person. Over the next twenty years, he searched for that person in doctor after doctor. He couldn’t accept a life like this. He wanted his old life back.

Over that time, he had three more operations, saw dozens of therapists, and took all sorts of medications. At times, he grew despondent, and the pain got the best of him. At such times, he drank. The whiskey calmed the pain, and he could walk more comfortably. The problem was that he was sick without it.

He never worked again. He tried, but he couldn’t last more than a few days at a job before the pain got the best of him. Some employers shooed him out the door. Others compassionately offered him a couch or whatever they could and tried to find something he could do. He wanted to work more than anything, and they wanted to help him; but they had a business to run, and eventually they gave up on him too.

His family grew estranged from him. He had never married. His brothers and sisters tired of seeing him in pain. At times they blamed him: If you only had done this or that, you wouldn’t have pain, they seemed to say, as if blaming him eased their discomfort. Like the surgeon, they couldn’t handle seeing him in pain. Being with him was more agony than they could bear. They didn’t need to take a pill to get rid of this agony. All they had to do was run to the safety of their own homes.

Mr. Smith was left to suffer on his own, a broken man. Somehow, though, he held out a hope that the future would be better. God wouldn’t leave him like this. He prayed each and every night. That hope alone kept him on the side of existence. But it really wasn’t life, because what he lived was based totally on the future. There was no present, and life is the present. He was, in fact, dead and awaiting rebirth.

It was at this point that I met Mr. Smith. He had just had his fifth operation. The previous four had destroyed his spine by leaving it unstable. One vertebra had slid half its width to the side of the vertebra below. His whole lumbar spine was curved to the side at a grotesque angle. He had seen a surgeon at our hospital who announced that he would fix the problem. Put a little metal here and there, slide this bone here or there, fix it all with a few screws, and he would be fine.

The surgery hadn’t worked. If Mr. Smith had pain before, he had no idea what to call what he was experiencing now. The burning was constant. No position relieved it. He truly was in