On November 11, 2017, I suffered a catastrophic health event that left me on the brink of death for weeks. From early that morning, I was very thirsty and lethargic. I couldn’t get out of the bathtub myself and needed help dressing. I complained my left arm hurt. I couldn’t make my weekly trip to the Green Market.
By the afternoon, my husband called 911. EMS workers recorded my low blood pressure and a fever of 101.8, and then strapped me to a gurney. The last thing I remember thinking as I was wheeled out of the bedroom en route to the hospital, was, I’m safe now. Once we arrived, my family says, I was lucid for a while and answered questions. But I don’t remember the questions or my answers any more than I remember blacking out.
I emerged from a coma two months later, in January. I learned my diagnosis—severe sepsis with shock, pneumonia, and aplastic anemia—though the cause remained opaque. My left arm was tightly bandaged; there had been a surgical procedure to clean an abscess, which may have caused or contributed to my catastrophic organ shutdown.
All told, my medical odyssey spanned four months, four hospitals, and two states. During that time, my body atrophied: I would have to relearn to walk, get out of bed, sit in a chair, eat with a knife and fork, swallow scrambled eggs without fatally aspirating them. Medical provider charges ultimately totaled roughly $3 million, including four months of occupational and physical therapy. In the end, Medicare and a good supplemental policy from my long-time employer whittled that total down to about $2,500 in out-of-pocket costs. Medicare’s prohibitions on surprise or balance billing saved us from bankruptcy.
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A note from Tarbell’s founder:
I learned about Trudy Lieberman soon after I started my career in the health insurance business back in the ‘90s. Trudy was health policy editor at Consumer Reports at the time, and I quickly learned that she knew more about health insurance than just about any reporter I had to deal with. This was during the time when insurers and employers were pushing all of us into HMOs and PPOs and also during the time when doctors and their patients were getting up in arms, justifiably, about all the new “guidelines” insurers were forcing on them.
One of the days I dreaded most during that time was when Consumer Reports released its annual ratings and rankings of HMOs. I dreaded it because, year after year, without fail, the HMOs operated by for-profit insurers like the ones I worked for were always bunched at the bottom of the rankings. Deservedly so. Enhancing shareholder value, I came to understand, was a far higher priority for the for-profits than providing access to care for their health plan enrollees.
When I decided to leave the industry in 2008, Trudy was one of the first people I called. I wanted to get her thoughts on what I should do with the rest of my life. By this time, she was teaching a class in media ethics at New York University. She persuaded me to spend an afternoon in a candid conversation with her students about how I—and many others liked me—worked to manipulate the media to influence public opinion and public policy. After that experience, I knew I had to keep talking and writing about what I had done in my career and to disclose secrets about health insurance company business practices that executives try to keep secret. My first public appearance as an industry whistleblower came the next year when I testified before a Senate committee—during the debate on what became the Affordable Care Act.
Trudy is still one of the country’s most knowledgeable and prolific writers on health care and health policy. Google her name and you’ll find countless articles she’s penned that have appeared in publications large and small, in the U.S. and abroad. She was one of the first presidents of the Association of Health Care Journalists and one of the founders of the Rural Health News Service. She has also written five books and won numerous awards, including three Fulbright scholar and specialist awards.
But we almost lost Trudy last year. An infection—and months in four hospitals—nearly killed her. During those months, her daughter sent periodic updates to several of Trudy’s friends and acquaintances, including me, and most of the time the reports were not encouraging. I frankly never expected to see her again.
Fortunately for the country, she not only survived but has made a full recovery. And she’s back at her computer, once again writing some of the most insightful and helpful stories about the U.S. health care system you’ll come across.
We were honored when Trudy said she would like to write for Tarbell about her close encounter with the system she has covered for more than a quarter of a century. What follows is her harrowing first-person account of what it was like to be a patient—and what she learned during that time that even an expert like her could never have been prepared for.
Trudy will also be a regular contributor to Tarbell. Welcome, Trudy. We’re grateful you’re still around.
Wendell Potter, Tarbell’s founder
For more than half of my 50-year career as a reporter, I’ve covered the health care industry. I’ve investigated long-term care facilities, evaluated health insurance, and interviewed medical experts. When I came out of the coma, my brain seemed to me to function normally. So did my hands. I recall thinking, I can still be a reporter. Yet my hard-won expertise did little to help me navigate my experience as a patient.
First Days in Hospital
Before I left home on November 11, I asked the EMS workers to take me to a hospital I knew had a good reputation. Then I passed out. The EMS workers told my husband they had to take me to the nearest facility. There was no choice here.
During my first day in hospital, totaling about nine hours I do not remember, I received 95 drugs, treatments, and diagnostic tests, which cost nearly $35,000. Before I lapsed into a coma, hospital records note I complained about pain in my left arm and shoulder. An ultrasound ruled out a blood clot, although a neurologist’s note six days later indicated my arm was swollen and not moving.
Early in my stay at that hospital, a tracheostomy was performed so that I could breath. Then for 12 weeks, I had a trach tube in my throat and a collar with air holes around my neck that became increasingly uncomfortable as the weeks wore on.
The Very Expensive Drug
While I was in the coma, I was diagnosed with aplastic anemia, a rare disease in which the bone marrow and its blood producing stem cells are damaged. Without stem cells to create them, I was deficient in all three types of blood cells—red blood cells, white blood cells, and platelets.
My husband was told that the only option for treating aplastic anemia was a “very expensive” drug that would allow my bone marrow to regenerate. He recalls hospital personnel saying the drug had to be approved, but he did not remember who had to make the approval. Though in our family we usually asked how much drugs or treatments cost, there was no time to comparison shop.
Without the very expensive drug, I had no chance. I needed it, and quickly.
I was treated with horse anti-thymocyte globulin (ATG) and cyclosporine. Later, I tried to figure out how much these drugs had cost. There’s virtually no transparency for drug and procedure costs. I waded through uninformative shorthand descriptions on Medicare and insurance company explanations of benefits, examined my medical records, made phone calls as any patient might do after discharge. No luck. Finally I asked for professional help.
A hospital financial counselor sent me a 45-page itemized bill, which listed nearly 1,100 entries and total charges of $522,407 for 21 days of care. The cost of 38 doses of cyclosporine totaled about $12,000, but the price for ATG was not listed. New York is one of the few states that require hospitals to give patients an itemized list of charges if they ask. This is a huge hole in the country’s quest for medical transparency.
Through my medical record and a call to the hematologist who treated me, I learned I’d been given four 2,520-milligram doses of ATG. I called one of my professional sources and learned that—according to Medicare’s Part B drug pricing files—the average sales price for ATG at the time was $1,817 for a 250-milligram dose, which suggests I received about $73,000 of ATG.
The Questionable Usefulness of Health Care Ratings and Shopping for Care
During my journalism career, I pioneered many of the early health care ratings. I expected that ratings would help consumers navigate the medical marketplace as effectively as product ratings help consumers make purchasing decisions for other products and services.
But my illness raised deep questions about the usefulness of such ratings. I realized that the notion that patients can use metrics and ratings to navigate their care becomes absurd once they are in a hospital. At that point, procedures and tests are condition-driven—that is, determined by illness—and patients are often in no position to bargain or choose. In cases of serious illness, patients usually lack the knowledge to assess what their condition requires, let alone know what treatments are available and appropriate.
There was, however, one metric that felt very important to my experience as a patient: the hospital infection rate. When patients die from hospital-acquired infections at higher rates, Medicare penalizes the hospital. But the decision to go to one hospital or another that has a better infection record is not always in the hands of the patient. It wasn’t in mine. Once you’re a patient the best you can do is watch if personnel are following good practices like hand washing. One night I chased away an aide who didn’t put on gloves, which hospital protocol required.
“Patient engagement,” one of the latest health care buzzwords has come to mean placing the burden on the patient to shop for medical services—the best OB, the best heart surgeon, the best place for MRIs—for the lowest price. The idea is that informed shoppers will vote with their feet and choose only the services and doctors with the lowest prices.
That notion, which economist and Nobel Laureate Kenneth Arrow debunked more than 50 years ago, has gained new currency. “When we look at the Medicare system, we all know that if you go to one place, it might be cheaper than another place,” says Medicare administrator Seema Verma—as if patients should, or more to the point, could contain health costs and get high quality care if they were just good consumers. To that end, Verma’s agency now requires hospitals to post their “chargemaster” prices—the prices the hospitals use to negotiate the rates insurance companies will pay. What insurers pay might be useful for consumers, but they are deep dark secrets protected by gag clauses in the contracts between insurers and hospitals. The problem with shopper rhetoric also assumes there’s time and knowledge to shop around. But when you’re really sick, there’s no time or opportunity to follow Verma’s advice. And those cases involving serious, life-threatening illness is where the big costs to the system lurk.
Price information has sometimes been linked to quality of care, in theory, at least, but “the national quality measurement efforts over the past decade have been deeply disappointing,” Dr. Ashish Jha, professor of global health at Harvard, told me. “Then tie in flawed incentives, and it’s unclear whether we’ve done more good or harm.” Financial incentives for hospitals to improve patient experience have actually slowed improvement, Jha added. “The story is a lot of enthusiasm, but when we do the analysis—Are patients better off?—it hasn’t worked that way.
“Your experience is emblematic of deep problems that still exist that have not fundamentally changed,” By that Jha meant what I experienced, and the close calls were not uncommon. “Your journey was not the exception,” he said. “This is the reality for many patients.”
As a patient, I often felt frustrated and helpless. At one point, I wrote in my notes, “I am not in control.”
“You have no control and no confidence that personnel are functioning in a system that works,” Jha said. “That combination is what makes it scary.”
The Myth of Patient-Centered Care
As a health care journalist, I have written innumerable articles about the ideals of transparency, accountability, and patient-centered care, a relative of patient engagement. The Institute of Medicine defines patient-centered care as “respectful and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” But my experiences were a measure of how empty that slogan is as a standard for the delivery of care. With few exceptions, I would not call my care “patient-centered.”
Last spring, in the NEJM Catalyst, Dr. Gary Kaplan who heads the Virginia Mason Health System in Seattle, laid out several essentials for clinicians and health care leaders. One was for health providers to understand the patient at a deep level. “A deep understanding [of capacity] is important to our ability to really engage the patient as a mutual partner in their health and health care journey,” Kaplan said. At one facility when I asked to be more involved in decisions about my care, I got no answer, and in the elevator leaving a meeting where I made my wishes known, I heard a hospital doctor say, somewhat derisively, that my daughter was calling the shots.
A Transfer and a Misdiagnosis
In December, the Manhattan hospital wanted to discharge me and transfer me to a long-term acute care hospital (LTAC) in another state, a relatively new type of facility designed for very sick patients who need such care as dialysis and trach management. My family didn’t think I was ready for a transfer, partly because of the active infection in my arm indicated by a high white blood cell count. I was still unconscious. A medical fellow—a doctor undergoing specialized training—opposed the discharge, but felt unable to voice his dissenting opinion to doctors higher up in the hospital hierarchy—a common problem.
My daughter tried to find a facility for me in New York City. Most facilities wouldn’t even take her calls. “I called around and realized you cannot find a place on your own,” she said. “That’s not how this works.” The transferring facility and potential new hospitals appeared to be working together to control where and by whom I would be given medical care.
Her conclusion: families cannot shop for facilities needed after an acute care hospital stay. The choice is really not theirs.
David Lipschutz, associate director for the Center for Medicare Advocacy, told me, “Hospitals have electronic systems and share profiles of someone they’re about to discharge. They shop the patient around and say, ‘This is the facility to go to.’” Family support, insurance, prognosis for recovery, and medical needs all figure into the decision to take a patient, or not.
At the LTAC, a neurologist concluded I had a stroke based on tests and symptoms that could also have been explained by the infection untreated at the first hospital. With this diagnosis, my husband and daughter had to consider the possibility that my coma would be permanent, or that, if I came out of it, I’d have severe brain damage. They demanded other tests, which proved that I had not suffered a stroke, and showed that the diagnosis, which could have dramatically altered my treatments and thus my ultimate prognosis, was wrong.
On To The Third Hospital
Two weeks later, a doctor at the LTAC discovered the abscess on the underside of the arm that had caused the pain since the ambulance ride weeks earlier. My arm was badly infected, and I was sent to a nearby teaching hospital for immediate surgery. “A massive infection was brewing,” my daughter recalled. “I don’t think the (first) hospital looked hard enough and deep enough to find the source of the infection.”
I escaped with a 3.5-inch scar, though I could have lost the arm, or worse.
Some three weeks after surgery I suddenly woke up at the big teaching hospital. Family members recounted what had happened and my son-in-law handed me a clipboard so I could record my thoughts and ask questions. The trach prevented me from talking. As my handwriting improved each day, my family grew more optimistic. My first thoughts were ones of disbelief, but then I switched to patient protection mode and focused on staying safe in what I knew was an unsafe place.
The Kidney Misdiagnosis
One afternoon a rushed nephrologist stopped by to tell me I was experiencing renal failure and would need dialysis for the rest of my life. Kidneys usually don’t regain normal functioning, she told me, so I should get used to this condition. She turned abruptly and left. Not knowing how to process this news, I consulted my cardiologist. “What is she talking about?” she asked. “She hasn’t seen the new numbers.” I was off dialysis in a few weeks, and never saw the nephrologist again.
One bright spot in my patient experience was that cardiologist who had admitted me to this hospital and who was also in charge of my care at the LTAC. She became my advocate and counselor, the kind of supporter every patient needs in order to survive in a dangerous system. When she told me something, I trusted her. Trust is still important in the healing process, a point often lost in the avalanche of metrics overtaking the system.
Firing a Doctor
After regaining consciousness, I was transferred back to the LTAC for trach weaning. I wanted to be cared for by the same pulmonologist who’d treated me at the teaching hospital. My family transferred me back to the LTAC on the condition that I would continue to be treated by my doctors who had privileges at both places assuring continuity of care and trust, which grew to be all-important. But after a few days back at the LTAC, the pulmonologist who had treated me during my first stay suddenly became my doctor and disrupted our agreement. He made his rounds long after I had gone to sleep and didn’t answer my questions satisfactorily when I was able to talk to him. I didn’t feel safe under his care. My family and I began lobbying to replace him. It took guts to tell the hospital I wanted a different doctor.
Hospital patients usually don’t fire their physicians. And their families usually don’t speak up either. Researchers at Harvard Medical School and Beth Israel Deaconess Medical Center recently found that between 50 and 70 percent of family member respondents with a loved one in the ICU were hesitant about voicing concern about common care situations with safety implications.
“In this system, you have to advocate strongly for yourself or have your family do it for you to make sure your wishes are acted upon,” my daughter observed. “Even when patient preferences are known, it doesn’t mean doctors will listen. You still have to advocate and push.”
After a few days I was assigned my favorite pulmonologist who helped me survive incredible discomfort.
The Saga of the Trach Tube
For most of my hospitalization, I lived with the help of a trach tube in my throat. I struggled to cough up mucus, and sometimes felt as though I could not breathe, though monitors in my room showed the oxygen levels in my blood were normal. I craved respiratory treatments—medicinal vapors that helped open my air passages—and counted the hours until it was safe to get another. Staff reassured me that I would feel more comfortable when the trach tube was replaced by a smaller device and eventually removed for good.
When it came time to remove the trach, the respiratory therapists found that a piece of skin in my throat had attached itself to the trach, which made it risky to remove. Staff at the LTAC worried they might nick an artery and lacked the proper equipment for handling such a complication. They recommended that a specially trained ENT doctor perform the procedure.
Then the trouble began.
The LTAC sent me to a nearby emergency room where, my family and I were told, an ENT specialist would meet us to swap out my device for a smaller one. I had serious concerns about going to any emergency room during peak flu season but was assured the process would be quick. At the ER, inside a private room, my daughter wiped down surfaces with Purell while we waited about four hours for the ENT specialist to arrive. He never did.
Eventually, a hospital employee told us the doctor wouldn’t come that night. The reason was not clear, though the employee told us that the ENT specialist had not been notified he was to perform the procedure until an hour after we had arrived. Rather than stay overnight and use the hospital as an expensive hotel, we returned to the hospital the next evening where we waited in the ER for only about 90 minutes before an ENT resident came to change the trach. The procedure took no more than 10 minutes.
A week later the drama repeated itself when it was time for the trach to go. Once more skin had attached to the device, presenting the same problem as before. Arrangements for the ENT specialist to remove the trach at his office fell through. There were questions about who would pay for the service, and a nurse claimed I didn’t want the trach removed. No one asked me whether that claim was true.
Stress and anxiety got the better of me. I convinced myself that I would likely bleed to death rather than successfully have the trach removed. A new appointment was made, and a week later the ENT doctor quickly and safely removed the trach in his office. Better communication—transparent, accountable, and centered on my care—could have spared me unnecessary trauma. Communication errors like the ones involving the trach removal can be costly, even deadly. In my case they delayed my discharge by a full week piling up additional costs and exposing me to more medical mistakes. “We’re getting worn out with this damn trach business,” I wrote in the notes I took to record what was happening to me. “No more communication errors, please.”
The Spector of Medical Errors
A few years ago, researchers at Johns Hopkins University found that medical mistakes in hospitals and other health care settings are the third leading cause of death in the U.S. I worried a lot about medical errors once I regained consciousness.
I knew from years of reporting on nursing homes and hospitals that medication errors were common, and patients were not in control. I tried to stay vigilant as best I could.
I forced myself to stay awake as late as I could every night so I’d be awake for the medicine pass. I wanted to ask the nurses what they were giving me to be sure I was getting the right drugs or if anything was missing or unfamiliar. Sometimes in the middle of giving me medications, nurses were pulled away to help a sicker patient. When they came back I often quizzed them to make sure they weren’t forgetting something. Occasionally I got so tired waiting for the nurse to return I fell asleep and simply had to trust the nurse would get it right.
One night, I watched a substitute nurse struggle with the hospital’s bar-coding system for dispensing pharmaceuticals. This scared me. I complained and the next night she was on a different part of the floor.
The PICC Line
When I realized I had a PICC line in my right arm, it also became a target of my worries.
A PICC line, a thin, flexible, long catheter, was threaded through my right arm toward my heart to administer medications and draw blood. After I woke up, I didn’t see the PICC line cleaned or redressed. I knew patients often got infections from similar lines inserted in the body and that they were the target of safety campaigns in many U.S. hospitals.
Eventually a physical therapist who worked with me during the second stay at the LTAC told me about the PICC line cleaning protocol—though it was not her professional responsibility. She alerted a dermatologist at the facility that my PICC line needed to be cleaned.
When the dermatologist’s assistant finally came to change the PICC line dressing, I didn’t know what she was doing. I thought she was looking for fees, and asked her to leave. Later I apologized. I wished that one of the many doctors who visited me daily had told me about the cleaning protocol so I could ask when it wasn’t done. I worried daily until the PICC line was removed at the fourth hospital. One nurse told me I knew too much. I believe I didn’t know enough.
Fear of medical errors almost cost me dearly. At the teaching hospital, I was told I was scheduled to have a bronchoscopy on Friday at noon. The procedure was needed because my white cell count was still high, and doctors thought residual bacteria in the lungs was the culprit. It involved inserting a lighted tube and camera into my lungs. Initially I refused. I was tired of procedures and having a tube threaded through my throat or the trach and into my lungs scared me. My fears could have been alleviated had hospital personnel taken time to explain the procedure and why I needed it. I don’t recall anyone telling me how a bronchoscopy worked or why it was necessary. In my mind I had conjured up a whole bunch of horribles.
It took a phone call with a family member who is an ER doctor to reassure me that a bronchoscopy was a low-risk procedure and why I needed it. Since my doctors could find no further sign of infection to explain a high white blood cell count, the culprits might be residual pneumonia bacteria still living in my lungs that needed to be cleaned out. My favorite pulmonologist removed fluid from my lungs that contained harmful bacteria, and the bronchoscopy was the turning point on my road to full recovery.
While the entire episode illustrated the lack of patient centeredness and poor communication, it would have been a horrible mistake not to have had it.
Acts of Compassion
There were bright spots and acts of patient centeredness during my medical odyssey. I met several caring and competent nurses and aides who made hard days and nights a little easier. Their compassion reflected what good medical care should be all the time, but is not. When I report on the health system’s greed, the vacuous slogans, advertising that misleads, and the growing emphasis on high-tech, I remember the young RN who told me about her training, held my hand, said I was strong, but would give me only Tylenol to help me sleep. I recall the nurse who called a doctor late at night to get an order for anti-nausea medication because the antibiotic to cure the pneumonia was making me sick. And there were the nurses who bundled me up for ambulance rides to the ER. They wanted me to stay warm on cold February nights.
A respiratory therapist suggested aromatherapy to help me breathe. Medicare isn’t going to pay for this, I thought, and maybe it shouldn’t. But the fragrant smells and evocation of spring flowers calmed me and helped me breathe.
I liked to talk to the aides who came at 11 p.m. One told me she wrote poetry. Another said she sold products for weight-gain during the day. They loved their night jobs taking care of people like me, and I appreciated every one of them.
At the fourth and final hospital, doctors showed more respect for my choices. When the temperature in my room was too cold, nurses let me sit in a place in the corridor where it was warmer. I told a doctor that I wanted to stay on a blood thinner I needed for a short time and that I tolerated well instead of switching to a new, relatively untested (and heavily advertised) alternative. She agreed.
These people revealed the human side of health care at its best, and their small acts of care were the kinds of things that I seldom wrote about. Most journalists don’t either.
Why Did I Survive?
Septic shock and pneumonia kill many Americans every day. So do medical errors, misdiagnoses, and hospital-acquired infections. But I survived. It was probably a mixture of luck, genetics, race, socioeconomic status, excellent insurance that erased the worry of high and surprise medical bills, and a family that fought so hard for me. My family was armed to fight the health care system in a way that few families are. A rich network of my friends, professional colleagues, and journalistic sources supported them and were always ready with suggestions to hurdle the system’s roadblocks. We created a ruckus when things went wrong. We asked questions. We knew how to be advocates for my health and fight against the obstacles.
I wrote at the beginning of this article that even my background in health journalism did not allow me to seamlessly find my way through the medical system. But maybe it helped keep me alive.
Not all Americans have an equal chance, equal ability, or equal resources to recover from a serious illness. I received care that saved my life. I can’t guarantee others that their outcomes will be similar. Nor did my experience produce a treasure trove of how-to consumer tips that will magically help patients and their families navigate a deeply and frighteningly flawed system.