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Over my past two decades on the faculty of the Harvard School of Public Health, I have spent a good deal of time thinking about health systems in developing countries, the role of power in medicine, and the allocation of scarce resources for high-cost medical care. Sometimes the things that we study professionally jump unasked out of their virtual reality, across their arms-length distance, and invade our lives. I never expected, or particularly wanted, the opportunity to reflect on these health policy issues from personal experience. But I got it.
On June 23, 1998, on a highway in the interior of the Dominican Republic (DR), an intercity bus crossed the median and smashed head-on into the rented Toyota Tercel I was driving. Our family vacation turned into a bloody nightmare. My eight-year-old son, Gabriel, escaped without a scratch. My wife, Barbara, suffered a broken collarbone and bare feet full of glass. I was nearly killed, the left side of my body torn, battered, and broken. We were all wearing our seatbelts, otherwise we would never have survived.
The accident scene was complete chaos: the crunched-up Toyota stuck in the middle of the road, blood streaming from my head and arm, crowds of people gathering from cars and the nearby village, long lines of traffic backed up in both directions. My wife embraced me, whispering in my ear to keep me on this side of the great divide, as the bus driver backed up to get away as fast as he could. These images come from my wife's recollections and stories, recounted again and again over the past four years, to gradually fill the void in my memory.
Some local people dragged Barbara from my crumpled, blood-drenched body as they hitched chains to trucks to pull the car's door off and get me out. But there was no medical assistance--no ambulance, no emergency team, no one stepping forward to stop the bleeding, no one offering to call for help. My wife was frantic. With bloody hands, she grabbed the well-tailored lapels of a businessman's suit, screaming for a cell phone. Only blank stares in response. Afterward, she wondered whom she would have called if she had managed to get her hands on a phone and why no one from the crowd offered to help.
Then three US Air Force soldiers happened to arrive at the scene and took charge. Two were Dominican-born US citizens who had joined the Air Force and become medics. Their car was stopped in the long line of backed-up traffic, and they came forward when they heard that an American woman covered in blood was screaming in the middle of the road. They knew exactly what to do and how to do it. They borrowed a shoelace from my son's sneaker to tie a tourniquet around my arm and then spirited me away to a hospital in a nearby city. These actions saved my life.
One soldier's parents took charge of my wife and son for the evening, providing them with security, solace, and support--and a cold shower the next morning for Barbara to wash my blood from her hair. Months later, we wrote to the US Secretary of the Air Force, commending them for actions beyond the call of duty. Each one received a medal.
When my soldier-angels transported me from the scene, they debated where to go, eventually deciding on a hospital 25 miles away in their home city of Santiago. The public hospitals and social security hospitals in the DR are not known for high quality medical care. Indeed, my own study of failed efforts to reform the DR's health care system found multiple problems in both public and private facilities. The Santiago hospital where I was treated was staffed by physicians teaching at the city's private medical school. According to my wife, an experienced hospice nurse, the hospital looked clean and professional--another astute choice by the soldiers.
Still, it required some heavy leverage--my wife's shouted threat to break the sterile field in the operating room--to persuade the surgeon to follow her two demands: no blood transfusions and no general anesthesia. We learned later that the surgeons did good work in that OR. The "pin" in my elbow (actually more like a two-inch bolt) healed nicely and has not required surgical fixing, despite a disparaging "We don't do it that way anymore" from my Boston orthopedic surgeon when he first saw the X-ray, a week after the accident. Now fully healed, my arm has lost a few degrees in extension. No one notices.
The surgeons also sewed up my face and scalp, and repositioned my dislocated hip, making an effort to stabilize it by sticking a Steinman pin in my leg. All this was done without producing any infection or other side effects. Maybe not up to the technical standards of a medical-Mecca Boston teaching hospital, but the care was clean, effective, and personal. When I woke up the morning after surgery in the room serving as a post-operative intensive care unit, the person sleeping in the next bed was the nurse. I couldn't speak at first, so I whistled, and she woke up and brought me water to drink.
Barbara's immediate impulse was to get us out of the DR and home as fast as possible. To that end, she made arrangements for Lear-jet medical evacuation to Miami later that day, Wednesday, one day after the accident. As she prepared to pay the hospital bill, she met a surprise: the hospital demanded full payment in cash. It graciously provided an armed guard to accompany her to the only bank in the city that could withdraw funds from our bank in Boston using our bank card. The total bill for the operation and services reached $2,300. A bargain--real value for the money--at least ten times less expensive than the fee for the same procedures in a US hospital.
A mixed public/private sector approach can produce good quality health care in poor countries--if you can pay for it. Through the hospital selection of my soldier-angels, the intervention of my nurse-wife, and the medical connections of the soldiers' Dominican families, we received good care in the DR: medical and surgical care for me, personal support for my wife and son, and expert guidance through the medical bureaucracy. We were lucky beyond belief and are ever grateful. Miami was another world.
To begin, let me say that our health maintenance organization (HMO) was thoroughly supportive in the aftermath of our crash. They quickly approved our request for medical evacuation from the DR (after my wife made repeated phone calls to my primary care physician's office); they later provided for a long period of physical therapy; they allowed our requests for second opinions on critical questions. This "responsiveness," however, depended on my wife's highly honed expertise in managing the health insurance bureaucracy of the US medical system--and her persistence. Without her efforts, I would have followed a different medical path. Even with her efforts, I had some major problems.
Managed care can produce social disasters for families. Miami was a social disaster for mine. After agreeing to fly us out of the DR, our HMO selected the hospital in Miami. How the choice was made is a mystery to me. But we did come to understand that there is a thriving medical business retrieving injured Americans from Caribbean islands. The patients are mostly tourists, often on cruises, who get injured while on vacation: heart attacks, sudden falls, diabetic crises, and car crashes are not unusual. Medical evacuation companies fly back and forth daily, using Miami as their treatment hub.
The hospital in Miami was totally unprepared for a family. It arranged for
Barbara and Gabriel to stay at an inconveniently located Howard Johnson's, with
no public transportation, no instructions on how to reach the motel, and no
social support for their needs. Hospital staff rigidly adhered to outdated rules,
barring my son from my room in the ICU. Incredibly, the hospital did not have
access to a cafeteria for meals for my family. The list went on and on.
Meanwhile, the hospital viewed me as a medical cash cow. With a blank check from my HMO, it pushed every part of me that would fit into the CAT scanner for a look-see. Every chief of department dropped by for a visit. Yes, they performed some useful services, such as sticking a chest tube into my collapsed left lung and repositioning the pin in my leg so that it could be pulled down in traction and reduce pressure on my broken hip. But the hospital bill, paid almost entirely by my HMO, reached $22,000 in two days--and I never even saw the operating room.
Miami marked the low-point of our post-crash odyssey. The stress in Miami had been horrific--far more traumatic than Santiago. The hospital pursued its high-billable services with aggressive skill while the softer services fell by the wayside. My wife decided that we needed to get ourselves back to Boston as soon as possible. On Friday we signed out and got back on a medical Lear-jet for the flight north, arriving in Boston late Friday night. Home at last, if not exactly in one piece. We thought we were back in our element, where we knew the system and could have some control, but that was not the case.
Health care is a negotiated process, with the patient less powerful than other players. Back in Boston, we rediscovered the politics of health care. As a patient, I became a captive for others to move about the various health facilities--hospital rooms, operating rooms, rehab clinics. The decisions take place in a black box, hidden safely from the patient's sight. Occasionally, you can reach out and shake the box, retrieving useful information and shaping the decision in line with your preferences. But it takes concerted effort and strength. Personal strategies and allies among the staff are essential. And heaven help you if the doctor assigned to you is incompetent.
No one warned me about the pain to expect after surgery. Morphine covered the pain from the incisions and the placement of eight screws and a plate to fix the piece of my hip knocked off in the crash. But it didn't touch the pain from a swelled- up belly, bloated as a side-effect from pain medication that stopped my gut from functioning. Narcotics were great in covering up primary pain from the crash. But without attention to the gut, and appropriate forms of intestinal assistance, the drugs created their own second-order distress--excruciating pain from more than a week of no movement in my bowels. (The hospital in Miami had started the powerful narcotics for primary pain, but did not start the stool-looseners that should have accompanied it, despite my wife's requests. Another Miami oversight.)
Even though I was a patient at a major teaching hospital (Barbara's employer), we still had problems. Finding someone in the hospital to help us was not easy. Several days elapsed post-operatively before the surgical resident introduced us to the pain-control nurse, who began to oversee my treatment, seeking to deflate my belly and ease the great pain in my mid-section. Meanwhile, it was up to my wife to intervene with some of her pain-management expertise. She fed me olive oil, a hospice nurse trick, to grease the intestine and ease the exit of stool. With her prodding and advice, the pain-control nurse adjusted my medications, and by Thursday I was sleeping through the night, at last.
The next negotiation was the move to a rehabilitation hospital. My wife decided where I would go, based on her on-site experiences over the years. But the question was when. July Fourth weekend was not a great time for a hospital stay, because of the skeleton staff left by vacation schedules and because of the new interns who arrive in teaching hospitals on July first. Was I better off in the comfortable teaching hospital bed, without any physical therapists over the long holiday weekend? Or should I move to the rehab hospital, where I could start PT immediately? Our friendly pain-control nurse suggested a quick move and jump-start on PT--"The sooner you start, the better off you'll be." Barbara wanted a few more days of relative peace and quiet and stability in the teaching hospital's private room. Here the negotiations shifted to the family. I wanted to get moving; she relented, unhappily. On Saturday, I traveled by ambulance to a rehab hospital in Cambridge.
Our most serious conflict with the health care system occurred in the rehab hospital. The nursing staff was supportive and understanding during my late-night battles with pain. The physical therapists and occupational therapists were just what I needed. But we felt that the doctor was stubborn and unresponsive. He pressured me to have speech therapy on my first day in the rehab hospital, perhaps because he specialized in brain disorders related to trauma. When I refused to take the tests for speech problems, he seemed to retaliate. When we requested a change in pain medication to avoid acetaminophen overdosing, he decreased the narcotic prescription below the therapeutic level. The pain in my leg was biting, and his instructions made it worse. I was frequently awake in the middle of the night, in excruciating pain, counting the minutes to the next allowed dose. We sought every path around him and over him, contacting friends who knew the hospital director, seeking out other staff physicians, consulting the head of the department, pressing the nurses to help. Two weeks later, just before discharge, I switched doctors and had an intelligent conversation about pain control with my new physician. We breathed a huge sigh of relief.
After nearly three weeks in the rehab hospital, I was discharged. Once again, we needed to put together the pain-control cocktail. My new doctor was supportive, but it was my wife who suggested the medications to try. Through trial and error, we arrived at a reasonably effective set of drugs to address the combination of bone, muscle, and nerve pain that continued from the accident and the surgery.
Rehabilitation means starting over from almost nothing. In the days after surgery, I quickly realized what disability means and how highly debilitated I was. The first time I tried to sit upright in bed required 20 minutes of struggle, with assistance from two physical therapists. Standing was impossible. Even sitting at the side of the bed, with my legs hanging over, drained me of energy. Sitting in a chair was a major accomplishment. The accident not only broke my bones and tore my skin, it destroyed my capacity to function.
Everything had to be learned again, slowly moving up the pathway of tasks connected to different ages. As if newly born, I had to relearn the simplest things of life: chewing and swallowing easy-to-eat food; eating while sitting up in bed; adjusting my digestive tract to take in and push out on a regular schedule; getting my pajama pants off and on without bending over; moving myself out of bed to the commode; shifting from bed to wheelchair while supervised; standing up while holding onto a walker. The simple things of life--the things I'd done before without thinking--had become nearly impossible. Gradually, with daily practice, continuing physical therapy, and persistence, I relearned the basic tasks of living.
The experience of disability gave me a new perspective on life. While I felt lucky to be alive, even if I couldn't stand up and walk, others looked at me as incredibly unlucky. When I had some wheelchair mobility, in early August, I returned to my office at the School of Public Health for a seminar. I viewed my colleagues from a new vantage point--to be more specific, from about navel level. And they looked at me and wondered whether I would ever walk again.
Surprisingly, there was not a single wheelchair-accessible bathroom in my entire 14-floor office building. To relieve myself, I had to travel to the fifth floor of a neighboring building or else use a pot in my office. My wife complained to the dean, and a bathroom on the next floor up was quickly reconstructed to allow my access. It seemed ironic that the Harvard School of Public Health, of all places, was not wheelchair accessible. For my wife, it was a problem to be solved through direct advocacy.
When September arrived, I welcomed new students to my department, leaning on my walker. My mind felt clouded by the four kinds of pain medicines that I continued to take every eight hours. My statements sometimes felt bumpy and disconnected, not flowing as easily as before. Had my mind been affected in some way? Were the medicines slowing my brain down? Barbara suggested that it would be a good experience for students at the School of Public Health to be taught by someone using a wheelchair. I agreed, but preferred that teacher be someone else. I delayed my course on ethics until November. Even then I taught from aluminum crutches and with pain medications.
Recovery is a process, and appearances are deceiving. In the first few days of January, I put aside my crutches, started hobbling with a cane, and went ice-skating with Gabriel. I could barely walk, but wanted to get on the rink--a kind of test of recovery. How much could I do? With my orthopod's blessing ("Ice skating? I don't see why not."), I laced up my old hockey skates and took to the ice, starting with my hands on my brother-in-law's shoulders the first time around. It hurt, with almost no push in my left leg, but the pleasure of gliding on ice gave me enormous satisfaction. Alive again.
Sometime in February, I reluctantly relinquished the cane. I rather liked the look and feel--and the security--of having a stick to lean on. But it was time to put it aside and move forward on my own, to build up my muscles without external assistance. Almost immediately, people began congratulating me on my "full" recovery. And I would explain that I had not "fully" recovered, that in fact every other step hurt, each time my left foot touched down. What appeared as recovery on the outside was far from full recovery on the inside. Some people thought I looked better than before the accident--I had gained 10 pounds from my disability-enforced sedentary lifestyle.
In mid-April, with encouragement from my physical therapist, I tried walking the 1.2 miles to work. It was too much, too soon. The second time I walked home, the pain in my left foot was so intense that I could barely make the last block. Gritting my teeth, suppressing the groans, I took lopsided limps for the last hundred steps. The despair and disappointment were intense. Walking to work and back was my self-stated goal for recovery-- a return to "normal." Would I ever be able to do it?
Over time, I got closer. My new orthopedic surgeon recommended that I work up to one mile of walking slowly, expanding the length a little at a time. And that helped. I reduced my pain meds from four kinds to one and began to feel that maybe I could relinquish that pharmaceutical support. I needed an experiment--a few days without it--to know for sure. But I still had nerve-related pain in my left foot, and I still needed to do 30 minutes of physical therapy each day to build up my muscles.
The one-year anniversary for the accident on June 23, 1999, was bittersweet. The crash combined a strange mixture of fates: incredibly unlucky that it happened, incredibly lucky that we all survived and that I recovered, mostly. All my medical caretakers--orthopedic surgeon, neurologist, primary care physician, physical therapist--agreed on one point: I had recovered much better than they had expected. Even my wife admitted that I had been "a much better patient" than she had anticipated, meaning that I complained hardly at all about pain (or anything else, for that matter), and that I followed the instructions of my therapists and physicians through the summer of recovery. By the spring, I apparently had recovered enough to return to my normal male behavior (of complaining, of not listening to instructions, of working too much). By the end of the year, 18 months after the accident, I had recovered enough to relinquish my last pain med and walk the mile to work with only mild pain, though I walked on a left foot that still felt half asleep.
In the new managed care environment, much of the "management" has shifted onto the patient and the family. And in this environment, I was lucky. My wife is an expert at handling doctors, insurance, pain and pain meds, intestines, and home care. And she did this all while suffering with her own broken clavicle shifting and sticking her whenever she lifted something (like hoisting my wheelchair into the back of our station wagon). We were fortunate in our joint resources for directing my care: my wife's expertise, our medical connections, and our experience in dealing with bureaucracies. Nevertheless, at times the system overwhelmed us.
We wondered, How do other patients negotiate the doctors, the hospitals, the therapies, the move home? We learned that some manage well, and some don't. A friend described the pain he still feels today, years after a hospitalized family member committed suicide. After hearing of our struggles in the rehab hospital, he explained to Barbara, "We simply weren't capable of managing the system."
Did this near-death experience change me in some fundamental way? Am I a better father or husband or scholar or teacher? Hard to say. Perhaps my face-to-face confrontation with mortality--just before turning 50--reminded me to value each moment I'm alive, to accept delays in life with a little less compulsion, and to have a better understanding of living with a disability. Most of all, it has impressed on me the importance of traffic crashes in developing countries, a major neglected public health problem. Since the crash, I have made this issue a priority in my research and am now organizing, with my colleague Vinand Nantulya, an international initiative at the Center for Population and Development Studies to advance the global agenda of road traffic safety.
The crash and its aftermath gave me an enforced period of reflection, with the luxury of being able to piece myself back together, while examining the pieces, sometimes even holding them up to the light. I still carry a constant reminder of the crash with me, as I go about my life, in my external and internal scars and in my one foot sleeping.
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