|Spring/Summer 2008||Volume 23, Number 2||Findings Magazine|
A Patient's Story of Pain
On an afternoon in May 1998, I was riding my motorcycle through the countryside near Ann Arbor when a pickup truck suddenly crossed the center line and crashed into me head-on. If I had not been wearing a helmet, I would have died. I broke both arms, both wrists, both legs, one hip, and cracked multiple ribs. I was rushed to the University of Michigan Medical Center and within a day underwent many hours of surgery, and was then transferred to the UM Trauma Burn Center. Days later I went into respiratory arrest and almost died. I am alive because of the care I received in the trauma center.
I spent four weeks at the UM Hospital (UMH), followed by eight weeks in a nursing home and many months in and out of the rehabilitation department of UMH. During part of that time I had no short-term memory. For many weeks I was unable to use either my hands or my legs. I finally went home in late August 1998 but returned the next summer for more surgery.
By crushing my body, the driver in the pickup threw me into a deep, dark pit. I was left with just enough body and spirit so that I could crawl out of that pit with the help of my wife, friends, luck, God, good medical insurance, and highly skilled medical professionals at a premier medical university.
My story has a happy ending. Although I now walk with a cane and suffer from chronic pain, I am fortunate to be both physically and mentally alive. In 1999, I began giving talks about my experience to medical professionals. I have since spoken to nearly a dozen organizations, including the Michigan state medical auditors, the UMH Quality Council, Ann Arbor Hospice, Heartland Healthcare, and several units within the UM Health System.
By sharing the lessons I learned as a severely injured patient, I hope to help doctors, nurses, and therapists in their work, and to help fellow patients find the courage to work through their pain and disabilities to healthy and happy futures. By giving my own perspective on the health care experience, I hope to shed light on the issues my public health colleagues face every day in our efforts to reduce the cost and improve the quality of the care on which our lives depend.
Lesson 1: Luck is important. So are rankings.
I had the good fortune of being run over on a state highway right down the block from an ambulance depot. Emer-gency professionals were on the scene in five minutes.
I was only 20 miles from one of the top trauma centers in the country. U.S. News and World Report ranked the UM Health System 12th in 1998. Only 15 hospitals make the prestigious U.S. News Honor Roll.
I learned that, given good medical insurance and time, in the best medical center equipped with the best equipment, the finest health care practitioners can work wonders. Many other accident victims do not receive the care, resources, and technology I received.
Lesson 2: It helps to have resources.
Between the medical care provided under Michigan law from the insurance company of the man who ran me down, and the local HMO insurance provided to UM faculty members, I was in good shape. If I needed more money for some vital care, my wife and I had some in the bank.
By contrast, one young man in the UM Trauma Burn Center, who was severely injured and paralyzed in an industrial accident, had been airlifted from central Michigan. His home was a three-hour drive away. His family was relatively poor. They couldn’t afford to be away from work to be at the bedside all of the time. They couldn’t afford to buy food in the hospital when they were there. The cost of visiting was very significant for them, and was a barrier to providing the continuous support he needed.
How much care would the worker’s compensation system actually provide for him? And, of course, the related question: would the hospital give the same level of care to someone who was covered by the skimpy worker’s compensation system, compared to the care that I, a patient with multiple medical insurance policies, would be getting?
Steven Levine is professor emeritus of industrial hygiene, Department of Environmental Health Sciences. He taught industrial health at SPH from 1982 to 2003 and ran a research program that developed national and international protocols for measuring environmental contaminants. A past president of the American Industrial Hygiene Association and member of the UMHospital pain-management steering committee, he currently serves on Tulane University’s Hygiene Program Advisory Board and is secretary/treasurer of the Academy of Industrial Hygiene.
Lesson 3: Not all caregivers are equal.
Four weeks after my accident, I was moved to the subacute unit of a nursing home to give my bones time to heal. While there, I encountered many nurses, two of whom stand out. I call them the Angel Jennifer and the Specter Clara.
The Angel Jennifer: She first appeared on my blackest night. I was helpless and frightened. She was a beautiful being, shimmering in white. The warmth of her words, her calm, caring tone of voice, and her focus on my needs set her apart.
The nurses on this late shift tended to be few and far between. There was little time for personalized care. So, some of the nurses adopted a purposefully intimidating manner. For a helpless person, alone in the night, this intimidating manner could be quite frightening. But Jennifer was not that way. She always had a kind word.
“I am frightened about the blood leaking from the metal posts in my arm!” I said.
“I will wipe the blood off and we will watch to see if it gets serious. In the mean- time, try not to worry,” she replied. It was not the words she spoke, but how she said them. Her radiance healed me.
At night, I feared the dark. When Jennifer was there, I knew that I would live through the night. I treasured each visitation from Jennifer.
The Specter Clara: Darkness fell over the room. Clara was our nurse this night. She was a small woman, dressed in starched white. She moved with rapid, choppy steps. Her words were like knives. My roommate was dying. She did what little she must. I asked her to do more. She closed my curtain to quiet me. She closed our door. She would not answer the bell. I was frightened. I had become claustrophobic. I couldn’t see out. No one would hear us. Clara’s power was complete.
How could the Angel Jennifer and the Specter Clara exist in the same world?
The indifferent, annoyed, purposefully intimidating nurse is a threat to the health of the patient. When the patient knows that he will be in the care of such a nurse, the patient feels fear and despair. For, certainly, that nurse will return day after day, and time after time. Your life is in her hands. And since you cannot get the simplest thing for yourself, everything is in her hands.
Most patients fear that if they complain, Clara will hear about it, and they will surely suffer from further inattention, or from worse consequences. Whether true or not, this fear is a powerful deterrent to healing.
Lesson 4: When aides are undervalued, patients pay the price.
At the nursing home, I sometimes had to wait for hours after the nurse aide was informed that I needed to get my diaper changed. That was during a weekday shift when there were many aides on duty. During the weekend, and at night, the situation was impossible. On some weekends, there were few nurses or aides for the 40-plus patients in my ward.
Patients who were in worse shape than I was, or who were more easily intimidated than I was, didn’t have a prayer of getting service. I was told by the director of nursing that the home had a problem keeping nurse aides, especially on the weekends and at night. The home was part of a region-wide system that allocated only so much money for aides, so the aides were poorly paid—just nine dollars per hour. Nine dollars per hour times 2,100 hours per year is about $20,000, and many of the aides were single mothers. Those were food-stamp wages.
My wife, Barbara, ended up doing the aides’ work—not every day, but often enough. She shaved me, she washed me, she combed my hair. The aides liked Barbara.
Lesson 5: If you don’t have advocates, you’re in trouble.
My wife was at my side throughout this ordeal. She has a master’s degree in organizational development and has worked for the Federal Reserve banking system, for the Harley Davidson Corpor-ation, and for others. She is a strong woman.
For months on end, she did simple things for me that a normal person takes for granted, such as blowing my nose, or moving me up in the bed. She was there when medical caregivers were not. She was there when caregivers needed to be alerted to problems. She is the main reason I am alive and well today.
Barbara is an optimistic person by nature, which may be one of the most important characteristics of a spouse’s survival in such circumstances. She also had a very strong support group. Our home was within two miles of the hospital and five miles of the nursing home. Barbara had no other dependents at home. Most spouses have a much harder time. If we, individually and as a society, can help spouses and families deal with such tragedies, we will truly be doing God’s work.
I also relied on the help of my friends, some of whom were doctors or nurses and provided medical care when the “official” system failed me. My friends and colleagues at the university hospital, and elsewhere in the system, acted both as a quality-control group for the medical care providers and as a means of communication for me, since I did not understand all of the medical jargon. Their presence was critical to my recovery. I suspect that most patients are not so lucky.
Lesson 6: Work the system.
When you go to therapy sessions, get every moment of benefit you can. Show up at therapy when they open the doors in the morning—leave when they turn out the lights. Make no mistake about it—this is difficult. But my wife is right: “If the therapists keep tripping over you, they will give you more to do.”
When the therapists hurt you, thank them, and ask for more. They hurt me a lot, but I did thank them. In the end, there was so much pain all the time that the pain of therapy was only another moment on the path that led to recovery.
Be grateful. When I was completely helpless, totally dependent and in pain, I had two choices: the first was to aggressively demand the care I needed, and clearly state my annoyance when I did not get it. Of course I made my needs known. In this, my wife and my therapists helped. But, above all, I was grateful. Not grateful-acting, but truly and deeply thankful. It made a difference, even though I was, at times, an insistent pest.
Always keep a stock of chocolate in your room. Good chocolate. For the nurses and the therapists. And for the guests, the visitors, who are so important to your recovery.
Lesson 7: Pain can be illuminating.
I learned from the suffering of others. Many, if not most, of those who traveled this road with me suffered more than I. My roommates taught me to have empathy for individuals who suffer from illness or injuries, and for their families who suffer with them.
I learned that the world was not designed for the handicapped. Many people and organizations try their best to accommodate persons with disabilities, but some don’t do a very good job.
I learned that the goal of a safe and healthy workplace, for which I have worked all my life as a professional and a scholar, is a worthy goal. If we fail to provide safe workplaces, in the U.S. and elsewhere, the result is misery, pain, and poverty for workers, families, and communities. Even just broken arms or legs have disastrous consequences, such as loss of employment, self-image, family lives, and emotional well-being. The pain I suffered in this motorcycle accident was a gift. It made me a better champion of the goal of working for safer and healthier workplaces.
I learned that, in the most extreme physical pain and disability, survival was my only thought. All of the higher thought processes disappeared—planning for the future, thinking deep thoughts and complex ideas—all of these things disappeared. In the depths of my misery, there was no jewel of an enlightened soul where I could hide. I found only a body that had become a prison and a torture chamber. It was not until afterwards that I found that the “jewel” was simply the understanding of the value of life, love, and friendship.
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The Providers' Perspective
I recall Steven’s blackest night, not only the bleeding but his shaking. He was so frightened he was shaking from head to toe. I told him we would watch his wounds and not to worry, or shake, until I said it was time to. In retrospect, I realize that part of patient care is to be honest and validate the patient’s feelings regarding their situation.
Health care professionals do not always have the answers. It takes a team to provide for a patient’s needs. At times, I feel health care workers who are not confident demonstrate an indifferent, controlling manner because they fear their own inadequacies. The unknown behind closed doors or patients without call bells gives them a false sense of security that all is as it should be. It’s insensitive, unprofessional, dangerous, and selfish. I’ve witnessed this and feel sorry that it exists and is real. As I look back, it’s not the tasks I remember. It’s the faces, personalities, and people I remember. Nurses can learn amazing things about strength, commitment, the importance of family and friends, when they open their eyes and see the patient as a person.
Advocates take many forms, and it is important that physicians understand that they have the privilege to serve as patient advocates in clearing a path through the medical system and towards a successful outcome. When this role is not accepted, patient outcomes are compromised. But this role is not always easy. And, when it comes to managing the care of complex rehabilitation patients like Dr. Levine, it is never easy. Fortunately, in rehabilitation, I have a team working with me to make the big picture whole so that in the end, the final care plan makes sense. That’s when you know that it is right—at least for the short time, until the patient’s status changes, and the team needs to rework the entire plan.
In addition, intelligent patients remember what it was like to be “normal,” so exploration and explanation are needed to figure out why function has yet to return. In today’s day of turnstile physician office visits, there has to be room and time to spend with complex patient-care needs to keep care at the level of excellence demanded.
As a last thought, I find that patients like Dr. Levine have many problems that you just do not see very often. They require thought and creativity to solve. Whether this is a modification issue, a pain issue, or some other aspect of care, it requires three important steps: listen to the patient. Engage in problem-solving together and with other team members. Agree on an intervention and a plan to get back together to listen again. It is with persistence that these problems are overcome.
During my studies at UM SPH in the 1980s, I met Steve Levine, who served as my industrial hygiene professor. Steve demonstrated the core values of public health service exemplified by the faculty—concern for the well-being of people and populations, coupled with the judicious application of science to improve health status.
A decade later, as co-chair of the Michigan Osteo-pathic Association’s education committee, I was helping to plan a full day trauma-care program. A nursing- home administrator mentioned a wonderful speaker who had been a patient in one of their facilities following a major motorcycle trauma—an individual who spoke to the need for compassionate, competent care, based on his experience. It was Steve Levine.
Steve agreed to be our featured luncheon speaker and delivered a poignant presentation. Hearing him speak was like hearing the voice of one of my personal heroes, the late SPH Professor Emeritus Avedis Donabedian, a primal force in the early era of health care quality improvement. I was reminded of the elegant way Dr. Donabedian had described the attributes necessary for the delivery of high-quality and compassionate health care, including a framework for delivering it.
Steve wowed the physicians that day. Afterward, one physician told me that the presentation had to be made available to a broader audience, including more physicians as well as others throughout the health care system, and then offered to finance the creation of a professionally recorded video for distribution. That recording is now in its final editing stages. I believe it will make a substantial impact.
Dr. Levine’s account highlights inequalities in the health care system: not all hospitals, staff members, or resources are equal; not all caregivers’ compensation matches their value to patients. He also illustrates by example that not all patients and families are equal. Steven and Barbara are intelligent observers, able to achieve perspective on their experience; they are professionals trained in the analysis of organizations. But beyond these qualities, they are human beings who coped (and continue to cope) in the best possible way with the situation in which they were unwillingly thrust. They recognize that the system, heroic and flawed, is made up of people: Angel Jennifers, Specter Claras, and everyone in between. And they recognize that even the Claras are doing what they believe is right.
Steven had an expert health care team. Barbara often filled in when team members weren’t immediately present. Sometimes the absence of staff was a burden. At other times it was taken in stride, as another step toward independence. Ideally, in the world of physical medicine and rehabilitation, those who give care and those who receive it become one; ideally, in a family, the notion of team is self-evident. Steven and Barbara are such a team, bound by brains, courage, and love.