“Nothing Is Broken”
For an Injured Doctor, Quality-Focused Care Misses the Mark
When a physician winds up in the emergency department, providers put quality metrics and testing before her actual needs.
Charlotte Yeh
It was just after six o’clock in the evening on Wednesday, December 7, 2011—Pearl Harbor Day—when I left my organization’s Washington, DC, office to meet a colleague for dinner. It was dark and rainy, and I had one more intersection to cross to get to the restaurant. I was about a third of the way across the intersection when I heard a loud “thump” and felt a sharp pain squarely in my backside. A dialogue unfolded in my head: “Wow! I wonder what that was … I think it was me. No, I don’t think it was me. Wait … I think I just got hit by a car! But there’s no way!” Before I could even make sense of the situation, I had flown through the air and landed on the street.
“Are you OK?” a man frantically asked me. I was so stunned that I said nothing—highly unusual for me. The man called for an ambulance. I feared I might be run over, lying there where drivers couldn’t see me. Two other men approached, keen on moving me out of the street. But as an emergency physician, I knew that trauma training tells us never to move victims. You’re supposed to splint a victim where she lies so as not to injure her back or neck. But I also remembered that personal safety comes first. In those fleeting moments lying there on the pavement, I debated whether to stay where I was and risk being run over or allow myself to be moved and risk further injury. I chose personal safety. I tried to mentally assess the damage to my neck and back and asked the two men to get me off the street.
They carried me through the pouring rain into a nearby restaurant, where I waited for the ambulance. When the EMTs arrived, they placed a C-collar around my neck and positioned me on a backboard for the short ride to the hospital, a Level I trauma center.
I was wheeled into the hospital’s ambulance entrance, where the triage nurse met me and confirmed that I could speak English. An EMT briefed the nurse, noting that I had been hit by a car.
“Where were you sitting?” the nurse asked.
“I wasn’t sitting in a car,” I said.
“Were you in the passenger seat or the driver’s seat?” she continued.
“No, I wasn’t sitting in a car,” I said. “I was walking across the street.”
It took several rounds of back-and-forth before she understood that I was in an “auto-ped” accident, as they call it in emergency department (ED) lingo. Perhaps the nurse thought I looked too “whole” for this to be true.
The admitting ED team scurried me into an examination room, where they asked if I was having any pain. It seemed an incongruous question, seeing as a car had just plowed into me. Yes, I was in considerable pain, I told them. They inserted an IV, and morphine began to flow.
A doctor came in and commenced the “primary survey,” an initial exam to detect any risk of life- or limb-threatening emergencies. Then came a brief evaluation to ensure that I could come out of the C-collar and off the backboard, a visual inspection for external bleeding or misaligned bones, and an assurance that my heart and lungs were functioning normally. I told the doctor that I had severe pain in my knee and backside. “OK, we’re going to need a CT [computed tomography] of the abdomen, CT of the pelvis, and X-rays of the chest,” she said. Something didn’t seem right to me. Wasn’t she going to examine my knee and backside?
When the tests were completed, I was wheeled out of the exam room, still flat on my back. By this time, roughly three hours after the accident, the ED was chaotically busy and all of the rooms were filled, so I was parked in the hallway. A new round of clinicians—presumably the admitting trauma team, although I wasn’t sure—stopped by my stretcher. “Well, everything looks fine on your tests,” the head clinician informed me. “There’s a little bleeding in the muscle around your hip area. We just don’t know if that’s going to continue, so we want to watch it. We’re going to admit you.” I gasped. I was still in denial that I had any serious injuries.
An inpatient bed wasn’t available yet, so I would be “boarded” in the hallway until one opened up.
I lay there on my gurney all night—nearly 15 hours—with my work BlackBerry, my personal cell phone, and a morphine drip, watching the bustle of hospital traffic around me. Several times during the night, my blood pressure was taken. When the pain returned every two or three hours, I caught the eye of hassled staff members and had them tell the nurse, who would come by to give me a quick infusion of morphine.
Having spent many years serving in EDs as an emergency physician, I took comfort in being left in the hallway. It meant that I was OK, that the hospital staff wasn’t so worried about me. As a patient, though, I felt alone. I was struck by the demeanor of some hospital staff who rushed by. It seemed as if they were deliberately avoiding eye contact with any of us poor souls waiting in the hallway, lest they be interrupted and asked for help. I wanted contact. Even after assuring my long-distance daughters by phone that I was OK, I wanted someone present, looking out for me.
In the morning the day crew appeared, taking over from the night crew. Residents went from gurney to gurney, sorting out patient dispositions. Around this time, the day crew learned that I was an emergency physician and, out of deference and consideration, they moved me out of the hallway into a private room, assuming this is what I would want. The private room was darkened so I could sleep, and the door was shut. Now, instead of feeling safe in the controlled chaos of the corridor, I felt abandoned, clutching my nurse call button, a lifeline to the world.
A new admitting trauma team stopped by later in the day to review my case. Because I had been stable all night and no major injuries had turned up on the CT scans, they decided I was ready for discharge. “Nothing is broken; you can go home now,” said one of the team members.
I was stunned. I was still in excruciating viselike pain, and my knee and backside still hadn’t been checked. The “good patient” in me wanted to please the doctor and saunter out of the room, but the real person in me was scared. I told the team that I wasn’t able to walk after the accident and wasn’t sure I could walk now. I was traveling on business and staying alone in a hotel room, so I might not be able to care for myself, I said. Again, they told me: “Nothing is broken, so you can walk.”
Even though no one examined my swollen right knee or left hip area to determine the extent of my injuries beyond broken bones, I knew that serious ligament or cartilage injuries could be sustained without broken bones. No one had talked with me about whether I would be able to function safely at home or about follow-up care either.
But the “good patient” won over, so with trepidation, I said I was happy to go home. “Do you think I’ll be OK at the hotel?” I said. “My knee is swollen, and I’m not sure I can walk on it.”
“We’ll just send in physical therapy to get you up and walking,” the resident said.
A short time later, the physical therapy staff came in and looked me over. “We’re supposed to get you up?” one of them asked. They attempted to stand me up, and I nearly crumpled to the floor. I couldn’t support my weight, let alone walk. They helped me back onto the gurney and then left the room to go brief the admitting team.
The resident returned. “There’s no medical reason to admit you,” he said, “but if you can’t walk, we’ll just have to.” The “good patient” in me felt embarrassed that somehow I had failed the “test” and was now an unnecessary admission, maybe taking the place of someone who needed the bed more than I did.
The resident’s comment struck me as callous, as if addressing my basic need to function and recover after the accident had nothing to do with the care he and his colleagues were there to provide. The team returned a bit later to tell me that a bed had opened up—in the maternity ward.
On that first day in the maternity ward, nurses came in and out as I asked, over and over it seemed, “Is anyone going to look at my knee?” By the end of the day, an orthopedic consultant appeared. He determined that I had a medial collateral ligament tear and recommended putting me in a splint and getting a formal magnetic resonance imaging (MRI) when I returned home to Boston. Finally, I had a partial diagnosis.
During that first day as an inpatient, I experienced increasing lower abdominal pain and told the staff a few times. I suspected a catheter malfunction. “Something feels wrong,” I said. “Is my catheter working? My lower abdomen hurts, and the catheter doesn’t feel right.” I was told that catheters are irritating and always make you feel like you have to urinate. Each time I mentioned it, the bag was checked, the presence of urine was confirmed, and I was assured that the catheter was working. It wasn’t until six hours later when the admitting team came by that they pulled back my sheets and exclaimed, “Did you know your catheter fell out?” as though it was my fault for not “telling the staff” or checking myself.
Over the next several hours, the piecemeal evaluation continued. That night, I began to experience numbness and tingling in my leg and my hip. I knew these were neurological symptoms and something wasn’t right. Three times doctors or nurses came through, and each time I explained my concerns but was not evaluated. It wasn’t until 24 hours later, during the night of my second day of hospitalization, that I had a neurological exam revealing contusion of both the sciatic and the gluteal nerves.
On my third day in the hospital, someone asked if the admitting trauma team had done a history and physical, standard procedure following the initial primary and secondary surveys. They had not. A resident then performed a “tertiary” exam—essentially, a repeat history and physical examination—although he and I both knew the prior exams had been incomplete.
By morning rounds on my fourth day in the hospital, I was both medically and functionally stable, able to ambulate cautiously with assistance and a walker. I insisted on being transferred to a rehabilitation facility near my home in Boston.
Nearly two years after my accident, after extensive rehabilitation, I am still limping and walking with a cane. I have had to adjust my daily routines. I still need wheelchair assistance at airports and still struggle with my balance on ramps and uneven ground. It is a challenge to put away bath towels on an upper shelf without tipping over. I still can’t ride a bike or hike. Even swinging open a door is problematic because I can’t fully brace myself against the weight of the door.
The most dispiriting consequence of all, though, is the loss of independence. Every choice I make each day about where I go requires careful advance planning: What’s the terrain? Will I need to ask for help? How long will it take for assistance to arrive? I depend on others now.
As a medical professional who became an accident victim and then a trauma patient, I was a participant-observer in emergency care, with a big-picture window into how well our health care system does or doesn’t work. There’s just something about being boarded on a gurney in a hospital hallway for 15 hours that gets one thinking about paradigm shifts.
In my case, I was struck by the uneven nature of my care, marked by an overreliance on testing and a narrow focus on limited quality metrics such as pain management or catheter care processes. Looking back, I believe that this approach fostered an inattention to my overall well-being. Instead of feeling like a connected patient at the center of care, I felt processed and disengaged. This is disconcerting, especially at a time when patient-centered care—that is, care delivered with me, not to me or for me—is becoming the new normal.
The Hippocratic oath, the medical profession’s ethical creed, reads: “I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.” This vow compels physicians to heed both the “science” and the “art” of medicine. The science often lies in defining the treatment regimens. The art lies in understanding what matters personally to the patient.
Even in an ideal world, this would be a high bar to clear. Despite some national consensus on quality metrics, we have continued struggling to measure “the good of the patient.” Still, quality metrics cannot alone advance the good of the patient. Focusing on clinical measures in particular is not enough as long as other measures that focus on patient-desired outcomes are ignored. If we don’t understand what patients’ expectations are, we can’t engage patients effectively in their care.
Through my experience as a patient, I observed a bias in what the metrics track: toward the clinical and away from the personal. To help restore this balance and reassert the art of care, I see three areas that the medical community should address.
When a test, such as a CT scan or a blood exam, is the centerpiece of care strategies, patient care can be compromised. As medicine and technology evolve, we may have become victims of our own success. We have become test-happy and technology-powered. These tools may provide us with good data on the patient, but this doesn’t mean we’re serving the good of the patient.
In my case, test-based care, while absolutely necessary, could have been balanced with a better understanding of me as a person and what mattered to me.
The unintended consequence of our current approach is that the clinical measure can become more important than the patient. I am afraid that as a result, we may be training a new generation of practitioners to equate high-quality care with conducting a test. Instead of having the test be used to discover new information about the patient, it is being used to define if one even is a patient.
After I’d spent four days in the hospital, it dawned on me that not once had anybody come by to ask how I was doing, what I needed, what I wanted, or whether I had any concerns. I then understood something that my own patients had been telling me all the time: They don’t feel engaged in their own care. There is nothing personal about it.
Weeks after my accident, I began rehabilitation treatment at a hospital in Massachusetts to work on activities of daily living, such as getting out of bed, using a walker, preparing meals in the kitchen, getting in and out of the car, putting socks on, taking a shower, and getting up and down the stairs. The art of care promised by the Hippocratic oath flickered back to life. Here, personalized patient care was the rule, not the exception. I saw staff treating every patient with dignity and respect and listening to what mattered to them.
Each member of the rehabilitation team asked me what “my goal” was—a simple enough inquiry. I told them it was to be able to go up and down the stairs in my house. No one ever asked me this during my acute hospitalization.
During my rehabilitation stay, I witnessed pure encouragement and compassion. Staff appreciated the patient’s current capacities, physical and emotional, and showed a sophisticated understanding of the gradations of care and recovery. Care becomes personal when dignity is established, regardless of the setting.
Patient-reported outcomes are a vital piece of the puzzle and are often overlooked because of institutional inertia or culture. In my case over those first four days, the management of my reported pain was perfect, a 10 out of 10—but it was the exception. Despite my requests for information and attention, it took a piecemeal evaluation over four days to sort out and diagnose the full damage to my body. My reports about my own condition did not seem to matter to anyone else.
Patient-reported outcomes currently in development, such as asking for the patient perspective (“what do you want,” “what are your fears,” “what matters to you”) and equalizing the patient-provider dialogue, create shared partnership in the outcomes and might have made a difference in my care. Going forward, quality metrics should give more weight to patient-reported outcomes if we want to truly assess care more effectively. As my experience suggests, we’re not quite there yet.
If I resolved anything on my care journey, it is that the “North Star” guiding all care must be providers using any means possible to know the patient, hear the patient, and respond to what matters to the patient. It should make no difference where you practice; any provider can do this. Emergency departments can’t hide behind the excuses of “we’re too busy” or “it’s too chaotic” to avoid connecting with every patient.
It is time to frame a new paradigm of care, a consumer-driven approach that concentrates attention on the art of medicine. This might begin with a reinvigorated focus on patient-centered care and mastering the skills of listening, empathy, and patient partnership.
The Oath of Maimonides, another code for the medical calling, offers a hopeful note about the physician: “Today he can discover his errors of yesterday, and tomorrow he can obtain a new light on what he thinks himself sure of today.” Should this wisdom prevail, the next generation of quality measurement may strike that elusive balance between the clinical and the personal, and the good of the patient will always guide the care we deliver.
Volume 33, Number 6. June 2014.
The Battle of the Bundle
Lessons from My Mother’s Partial Hip Replacement
For one family, Medicare’s bundled payment program felt more like a health care assembly line than coordinated care.
Timothy Hoff
Listening in on the phone—me three hours away at work in Boston and my siblings sitting in a rehabilitation facility outside of New York City—I could feel the anger rising in my throat. I was fed up. So were they. A week after having a partial hip replacement, our 90-year-old mother with dementia was being talked about as if she were some willfully noncompliant patient, slowing down her own rehabilitation for some self-interested purpose only she knew about. This is wrong, I thought. My mother is scared and hurt, and she needs to be embraced by the health care system right now, not run through it as if she were just like everyone else. So I spoke up for her, because she could not.
My mother is like a lot of people her age, yet she’s also different. She’s unique in many ways, at least to us. A human spitfire her entire life, she was born and raised on the streets of New York City, the second-youngest of six children of Irish immigrants. She and my father raised my four siblings and me in challenging living circumstances (the Bronx in the 1970s), spending their hard-earned dollars to give us a good education and a roof over our heads. The apartment where I grew up was crowded yet warm and loving. My mother could give you a lot of grief, but at the same time she’d go all out to protect you from harm. I still remember how she picked me up for lunch every day at one point in grammar school so I could eat at home in peace and not have to deal with the increasingly mean streets of the school playground. That was her.
But she’s lived a long time, and things happen to people who live a long time—most of them not good. She was healthy most of her life, but the past several years have been increasingly unkind. First came the onset of dementia, a terrible disease that slowly guts a person’s personality and awareness. With the dementia came the inevitable slowdown in locomotion activity: She was increasingly holed up in a tiny apartment just north of New York City that she shared with my brother, without whose caregiving she would have ended up in a nursing home several years ago. But she spent more and more time sitting in the recliner, staring at the television, and sleeping. Still, our family thought that was better than being in an institutional setting.
Finally, and somewhat inevitably, the fall came. My mother’s low bone density, dementia fog, and difficulty getting up from her chair conspired to make it happen. With a part-time home health aide and my brother living at home, the moments when my mother was left alone had become increasingly rare. But during one of those moments, she tried to get out of her chair and tripped. Up to that moment, it had been a day for her like any other from the past year or so. Lots of sitting, lots of dozing, lots of calls to my brother. A neighbor keeping tabs on her heard her calls for help and contacted my brother at work. He then called our sister, who went over to the apartment to find our mother on the floor. An ambulance arrived shortly afterward to take her to a local community hospital’s emergency room.
She had fractured her left hip, the dreaded injury that—alongside damaged knees—hits the elderly hard and eats up so many Medicare inpatient dollars, often through partial or full joint replacements. When I got the call from my brother that he was at the emergency room with her, her future came clearly into focus: That day would be her last sitting in their small apartment, having some degree of independence. She was about to become dependent on a fragmented, competitive system of health care payers and delivery organizations. She would traverse the modern elderly person’s trail of tears: from emergency room to hospital bed to operating room to rehabilitation hospital to nursing home. With luck she would avoid the intensive care unit (ICU). As for me, I would have to watch the fireball of my youth and adulthood reduced to a passive passenger on the cold, loud train to Long-Term Careville.
I’ve worked in, studied, and taught health care as an administrator, consultant, and university-based academic for the past 30 years, so I knew more than the rest of my family did about the maze of complexity, uncertainty, and risk that my mother was entering. Older folks, already debilitated by a significant injury, often endured a steady drip of secondary morbidities in hospitals and rehabilitation facilities, such as infections and pressure sores. And the clinical interventions meant to prevent, slow, or stop those morbidities often compromised the patients’ immune systems and set them up for something even worse down the road (pneumonia, for instance, or that dreaded trip to the ICU).
Two days after my mother was admitted to the community hospital, a local orthopedic surgeon, someone we met only an hour before the surgery, performed a hemiarthroplasty (partial hip replacement), inserting a prosthetic femoral head into my mother’s hip socket and anchoring the stem of that head in her femur bone. It was a quick and fairly straightforward procedure.
“She has pretty good bone structure for her age,” the surgeon told us as we sat in the waiting room after the surgery. “The operation was a success.”
Of course it was. That’s my mom, bulling her way through another adverse situation.
But our own education was just beginning. Even as someone who knows health care quite well, I felt like an uneducated fool in this instance. What I found out as soon as my mother got back to her room the evening of the surgery is that with joint replacements now, you are on a quick-moving assembly line. That line whips you out of the hospital and into a rehab facility as fast as is humanly possible, and then out of the rehab facility and either home or to a nursing home almost as quickly.
My mother was now participating in a pilot program created by the Centers for Medicare and Medicaid Services (CMS) in 2016, part of the agency’s broader “bundled payment” initiative. This particular pilot program placed hospitals at financial risk for joint replacements if the total costs of care from the surgery through a certain number of days after being discharged from the hospital exceeded a certain amount. The program did this through a form of payment bundling, in which Medicare added up the actual total costs of care for a patient getting a joint replacement over a period of time (called “the care episode”) and compared it to a “target price” it set, which was what CMS estimated the total costs should be. Spending more than the CMS target price across the entire continuum of care for a hip replacement, including rehabilitation, could force the hospital to reimburse Medicare for a portion of the total costs, while coming in under the target price might give the hospital a financial bonus.
The problem was that no one told us before the surgery, or for several days afterward, that my mother was going to be a participant in this program. I found out only after a chance mention by the hospital “care manager” when she was discussing my mother’s discharge with me over the phone on the day my mother was scheduled to be moved to the rehab facility. I think if I had not peppered her with highly specific questions about length-of-stay and expected Medicare Part A coverage for rehabilitation, she might have never mentioned the bundled payment program. My brother also had spoken with this care manager several times before, but my mother’s inclusion in the program had never come up. It was as if the care manager shared the information only on a “need-to-know” basis, though this was something I felt sure we all needed to know, even before the surgery.
The first 24 hours after surgery were a flurry of activity. My brother and sister remained with our mom in the hospital while I went back home to attend to other family obligations. The morning after her surgery, my mother was forced out of her bed to sit in a chair and to try and stand. She yelled at staff members the whole time, her dementia on full display. Sure, it sounds like it makes sense clinically: Get them up quick and get them moving. But the speed with which things started happening struck my siblings and me as less than ideal. It also made me wonder, looking back, if there wasn’t some conflict of interest on the hospital’s part—regardless of the clinical appropriateness of what happened to my mother—given her membership in this new bundled payment program, which seems to encourage hospitals to move joint replacement patients quickly to somewhere else.
The day before the surgery, we had been told that my mother would be discharged no more than a couple of days later to a rehabilitation facility. Given the short discharge window, my brother and I had spent the morning of the surgery, a Friday, doing a lightning tour of a local rehab hospital that we’d selected after my own rapid-fire examination of Medicare Star Ratings, Nursing Home Compare data, and New York State Department of Health inspection reports. Thankfully I knew something about health care quality measures; for other people, this process might take a lot longer. The care manager needed to know the name of the facility we wanted my mother discharged to because she would be brought there on the Monday following surgery. Over that weekend, I remained baffled by how fast the situation was moving, and I dreaded the coming week.
The hospital had recommended one specific rehabilitation hospital, but once I did my own research, another local facility seemed to offer the best quality. Later, when I learned that the hospital was at risk financially for the total costs of the continuum of my mother’s care, the idea of a conflict of interest again filled my head. Was there something about my mother’s inclusion in the payment bundle that had made the hospital recommend or do things that were not in her best interest? More specifically, did the hospital have tacit understandings with specific rehab facilities about the need to keep the overall costs of care within a certain range? Was the hospital’s recommendation reflective of good collaboration or something more like collusion with a given facility? I can’t say whether my suspicions had much basis in reality. But my trust in that hospital and my mother’s surgeon began to wane.
The day of the discharge, after my phone call with the care manager, I tried to read up on the bundled payment program. Online I found an item from the Federal Register that was more than 280 pages long and 48 pages of “frequently asked questions” describing the program to health care providers. For patients and families, I found an oversimplified set of statements on the CMS website, including many still unproven assertions that bundled payment produces better care for patients. All of the information I found made my head hurt. It felt as if my mother’s care trajectory had been reduced to thousands of hard-to-understand words online.
I was confused and angry. I tried not to laugh out loud at the grand-sounding but vague statements about “coordinated patient-centered care,” the benefits of hospitals and providers “working together more closely to coordinate their care,” and how bundling created incentives to “work together to deliver more effective and efficient care.”
I know enough about health care to understand that these sentiments often do not translate well in the siloed, hypercompetitive, slim-profit-margin system of care delivery that we have today.
What my siblings and I saw during the first week my mother was in the rehabilitation facility made me feel as if the “bundle” in which she had been captured was working against and not for her. A 90-year-old with dementia, my mother is a unique patient with special circumstances. Yet my siblings and I were told initially that, on average, participation in the bundled program meant five days of Medicare Part A–covered rehabilitation for a partial hip replacement. Every time I spoke with the rehabilitation facility staff members in that first week, I could feel that this bundled payment program and its short discharge window were on their minds.
“You know your mother is part of a care bundle,” a nurse on my mother’s floor mentioned to me one day.
In separate instances, the physical therapist and the social worker in charge of my mom’s health care team mentioned that to me as well.
I also found out that the rehabilitation facility was in constant communication with the care manager at the hospital that had discharged my mother, providing regular progress reports. This might have been to help coordinate my mother’s postsurgical care and ensure that it was successful. In fact, I didn’t doubt that. But the cynic in me also wondered how the rehabilitation facility would get future referrals from the hospital without being able to show the hospital that the facility could make the bundle a financial success through highly efficient service delivery. There was little transparency about the relationship between the institutions for my siblings and me. And right or wrong, my trust in the rehabilitation facility began to erode as well.
A little more than a week into my mom’s stay in the rehab facility, after it had become clear that she could not be discharged in five days because of her slow response to physical therapy, we had a family meeting with my mother’s health care team. I joined in by phone from Boston. The team members told us that the facility was close to reporting to the hospital and Medicare that they had reached the limit of rehabilitation progress with my mother, which would trigger her transition to a “private pay” patient and end the rehab facility’s obligation under the joint replacement bundle. This would likely also make the hospital happier and end its obligation, I thought.
My mother wasn’t progressing, the team members said. At times, she refused to cooperate in her rehabilitation, and the facility needed to report to the hospital and Medicare when progress was slowing.
The meeting got heated in a hurry. I countered the team’s standardized responses with my own questions.
“You have to realize my mother has dementia and has to be treated differently—are you taking that into account?” I asked.
My brother joined in as well from the conference room. We pressed the team on the fact that my mother’s dementia and other secondary morbidities she was dealing with, such as chronic knee pain, were likely slowing down her physical therapy progress compared to that of a “typical patient.”
“I can’t believe we have to state what should be obvious,” I said.
Again and again, I brought up the pressures of the dreaded bundle program. I wanted everyone in the room to know that we knew about it. It seemed a subtle (maybe not so subtle, in hindsight) form of shaming that might get them to think like advocates for my mother. For 45 minutes, this back-and-forth continued between the dry, clinical analysis from the care team and the emotional, frustrated pleas from my brother and me. This was nothing like what the CMS website talked about. After the call, I left my office, feeling sick to my stomach, and went outside to clear my head. I felt increasingly powerless to help my mother.
For years I’ve believed and taught my students that fee-for-service medicine was a wasteful, dysfunctional way to reimburse providers for health care. Maybe it still is. But I now think that value-based reimbursement, the supposed antidote, often makes little sense and is equally dysfunctional, at least from the patient’s perspective. It can create a massive conflict of interest within a system that is neither coordinated nor collaborative, and whose institutions are still very much concerned first and foremost with profit. Bundled payment? Well, that makes even less sense to me now. I don’t see how there won’t be conflict, tension, and ultimately gaming going on between hospitals and the downstream facilities that care for their patients.
Ironically, my mother is still in that same facility, now situated in a long-term-care bed that Medicare is not paying for. Her staying put is less by choice and more by necessity, since the facility is close to where my brother and sister live, so they can see her every day. In addition, it was the only place we considered that had a long-term-care bed available. In the end, the facility kept her on Medicare Part A coverage for five weeks because of some meaningful setbacks to her rehabilitation that, to anyone’s eye, justified keeping her for even longer—and, I think, because we had pushed back hard in that meeting. The handful of days in rehab that we were told was typical for hip replacements within the bundled payment program was, at least in my mother’s case, a ridiculously unrealistic length of time. Even five weeks of rehab seemed insufficient: at the end of it, she was still not back to her previous level of functioning, and to this day she hardly ever gets out of her wheelchair. I credit the rehabilitation facility for justifying to both the hospital and Medicare a need to cover her care longer. But I wonder if they have learned a hard lesson that they will apply in less patient-friendly ways in the future as value-based payment experiments continue.
I know that if my mother could understand the reimbursement world in which she had been dropped, she would fume. Her fiery temper would have given the providers around her no quarter, and in the end many of them would’ve known firsthand what this new reimbursement system means to the patient. Instead, my brother and I have tried to channel her response. I write this story because she would expect me to. After all, she raised us to rail against things that seem unfair or downright hostile. I certainly don’t think that value-based reimbursement, especially through what are called “comprehensive payment bundles for specific care episodes,” is fair to the patient. These bundles may sound great on paper but not from my perspective. Instead of paying full attention to my mother and her feelings, my siblings and I had to be hypervigilant agitators within the health care system—a system that listened to us best when we took an adversarial posture. This is not the fulfillment of the patient-centered care goal that CMS so desires. It’s far from it.
That is the lesson I will teach now to my students and anyone else who will listen.
Volume 36, Number 8. August 2017.
Even in an Emergency, Doctors Must Make Informed Consent an Informed Choice
When a stroke is suspected, a daughter is pressured to consent to her father’s treatment without fully understanding the risks.
Cindy Brach
My dad is a wonderful man. In his working years, he was a tax accountant who served on the board of the Bronx River Neighborhood Center and shared his passion for tennis by teaching young men who lived in the South Bronx to play. He retired early to introduce others to meditation and other stress reduction methods that he had found helpful, and he ended up as a volunteer community mediator.
In October 2013, just a few months after giving up playing tennis, my 88-year-old father was diagnosed as having stage IV prostate cancer. He responded well to the hormone treatments, but by May 2014 his prostate had gotten so large that he had difficulty peeing. Although he liked saying, “I don’t like to brag, but I have a HUUUGE prostate,” this condition had become dangerous: the blockage began to cause kidney failure.
My dad’s urologist gave him two choices. He could either live with a catheter (a tube inserted into his bladder) for the rest of his life, or he could have surgery to trim his prostate to create a channel for the pee. After hearing that sporting a catheter would end his Ping-Pong career and that he’d only have to spend one night in the hospital, my dad overcame a long-standing fear of germs and elected to have the surgery.
Since my mother’s immune system was shot from having chemotherapy for lymphoma, my 20-year-old son and I were the ones who accompanied my dad to the hospital. I am not a clinician, but I have worked for the Agency for Healthcare Research and Quality for almost 20 years, and I felt well equipped to be my dad’s health care proxy. He checked into the ambulatory surgery unit early in the morning and was soon taken away for the surgery.
Immediately after the surgery, my dad’s urologist told us that it had gone well. The following morning, however, he informed us there was too much blood in my dad’s pee. My father had to stay in the hospital an extra day so they could flush the blood out while the catheter was still in place.
On his third day in the hospital, my father was pronounced ready for a “voiding trial.” They pumped a liter of fluid into his bladder, removed the catheter, and waited to see if he could pee. However, my dad felt no urge to go. Even after drinking cup after cup of water and sitting with a handheld urinal for several hours, he couldn’t get anything out.
It was early that afternoon when I noticed that he was having some difficulty speaking. He was clearly trying to say something but couldn’t come up with the words he was searching for.
I pointed out the problem to the urology nurse practitioner.
“Dad, what are you trying to do?” I asked him.
“Well, I’m trying to …” His words trailed off. “You see, I’m making an effort … I’m really …” He couldn’t say, “I’m trying to pee.”
The nurse practitioner suggested that we call the stroke team. While I didn’t think my dad had had a stroke, I knew I might be attributing the symptoms to other health issues, which frequently happens to stroke victims in hospitals. So I agreed, and the nurse called in the stroke team.
Fifteen minutes later half a dozen neurology residents were swarming around the room. One of them performed the standard stroke assessment—how many fingers do you see, squeeze my fingers, hold your arms out and don’t let me push them down, and so on.
The next thing I knew, they were rolling my dad out the door on a gurney.
“Where are you taking him?” I asked.
“To the ER to give him tPA,” the lead resident answered as they wheeled him down the hall. I knew what tPA was: tissue plasminogen activator, a stroke treatment drug that busts up clots that block the flow of blood to the brain. But I was not convinced that my dad was having a stroke.
“But I haven’t consented,” I called after them.
“This is an emergency!” they replied.
I stood my ground. “I’m his health proxy. You’re NOT giving him anything without my consent, and I haven’t consented!” That stopped them.
“You’re right,” the resident said, backpedaling. “Could you come with us while I explain?”
As I trotted to the elevator with them, the resident explained that my father had had a stroke, that there was medicine they could give to break up the blood clot, but that there was a short window of time in which the medicine could be administered.
How could they be so sure he’d had a stroke? I wondered to myself. Did they know my dad had been too shaky on his feet to take a walk that morning, that he had not eaten until the nurse made him have a yogurt midmorning, and that he later threw up his lunch? Did they know that he hadn’t slept much the past two nights? Could it be that his full bladder was causing his kidneys to go toxic again?
I’d seen my dad get fuzzy when he had a bladder infection—maybe that was the problem. Or maybe the exhaustion from trying to pass the “voiding trial” and the worry about the pain he’d feel if they had to put the catheter back in were affecting my elderly father.
Maybe I’d watched too many episodes of the medical drama House, but it seemed as if the doctors hadn’t ruled out other possible causes of my dad’s symptom. They hadn’t asked me anything about his history other than the time of the onset of symptoms. I was worried that these neurologists in training might see a stroke where there wasn’t one because that’s what they were looking for.
“Why are you so sure it’s a stroke?” I asked the lead resident. “Was there anything other than the language problem?”
No, the resident answered, there was nothing else.
On the way to the emergency department (ED), we stopped for my father to get a CT scan to make sure he wasn’t already bleeding into his brain, which is a contraindication for administering tPA. All I had heard thus far was how tPA could reverse stroke symptoms—no one had told me about any potential downsides. I asked the stroke team about the risks from tPA if my father was not having a stroke. I was told there was a small risk (on the order of 1 percent) that tPA would cause him to bleed into his brain, which could either kill him or leave him severely impaired. No one bothered to mention that the risk of a catastrophic brain bleed from tPA was even greater if he was in fact having a stroke. Or that there was a risk of a noncatastrophic brain bleed.
The CT scan showed no bleeding. As we moved quickly on to the ED, I was pressed for my consent to give my father tPA.
“It’s the standard of care!” the resident kept hammering at me. “We’re running out of time.”
I repeated that I had not consented and proceeded to call my mother. She and I were both my father’s health care proxies. While I was on the phone explaining the situation to my mother, a senior neurology resident interrupted me to make sure I really understood that time was running out. I put my mom on speakerphone so she could hear what the senior resident had to say, which was what I’d already been told: that tPA would break up the clot, that tPA was the standard of care, and that it was critical for my father to get the medicine right away.
I took my mother off speakerphone so we could discuss the decision, but the senior resident insisted that I give her a decision right then. I gave her the response I’d often given my children when they pestered me for an immediate answer, “If you need an answer now, the answer is no.”
On the phone, my mother gave her opinion. Maybe it was just that tPA had received good press coverage, she said, but she wanted my dad to get the medicine. So I consented. It was barely within the three-hour treatment window when they administered the drug.
Shortly after receiving the drug, as my dad was being wheeled up to the neurology unit, he sat halfway up with outstretched arms, shook violently, and then lay back down. “He’s having a seizure,” someone cried, at which point he seized a second time.
My father had suffered from an intracranial hemorrhage—he had bled into his brain. Throughout the rest of that night in the neurology intensive care unit, he shook uncontrollably, didn’t appear to understand us, and couldn’t communicate at all. Tears streamed down my face.
What had I done? Had my mistake been to allow them to give him the tPA? Or had it been in questioning its administration in the first place and losing valuable time? Why, despite being an expert on health literacy who was developing training modules to improve informed consent in hospitals, was I unable to come up with the questions to get the information I needed to make a truly informed choice in a timely manner?
My dad trusted me to make good decisions for him, and I felt I had let him down. I also felt the hospital staff had let me down.
Health care systems can and must do a better job. What would have served me and my family during my father’s emergency was better communication and a care team geared to helping us reach a treatment decision.
Clinical trials have shown, on average, more benefit than harm for the average patient meeting specified stroke criteria when tPA is administered within three to four hours of the first symptoms. The earlier the patient receives the medicine, the better the results. This creates both intense time pressure and the illusion that there is no time to spare for conversations. But if clinicians can communicate effectively and efficiently, the time can be found.
Doctors are the experts in medicine. Patients and their families are the experts in themselves and their bodies. The neurology residents who evaluated my father for stroke should also have been asking me questions. They should have asked about what my father was normally like, whether he had ever experienced symptoms like this before, if I knew of anything that might account for his current symptom, and other questions to gather more evidence about his condition.
Had the residents taken more seriously my doubts about whether my dad had had a stroke and my concerns about the treatment, they might have told me that they had checked my father’s blood sugar level, and that there was a second symptom of stroke they hadn’t told me about. Instead, valuable time was wasted, and I was left confused and in turmoil.
There is a growing expectation that doctors should be effective communicators. Medical schools have begun to teach communication skills, especially since the United States Medical Licensing Examination started testing those skills with the use of simulated patients in 2004, and the communication skills component of the exam was enhanced in 2012. Additionally, the results of surveys of patients’ experiences of care—which include questions about how well doctors and nurses respect, listen to, and explain things clearly to patients—are being used in determining hospital payments. But we still have a long way to go. Hospital leaders need to make it known throughout their organization that clear communication is an institutional priority.
Every discussion of possible treatments should cover the risks, harms, and benefits of all the options—including the option of doing nothing. This is a basic tenet of informed consent, which unfortunately many hospitals do not observe. Hospitals have been cited by the Joint Commission for failing to have appropriate informed consent policies in place, but little attention has been paid to whether they adhere to the policies they have established.
In my dad’s case, the residents should have educated me about the natural progression of stroke and the chances that the stroke would resolve on its own, that the symptoms would persist or increase, or that the stroke would kill him. They should have taken me through a similar risk-benefit discussion of tPA and explained the chances that my father would improve, stay the same, get worse, or die.
Risk communication is notoriously difficult. One method used to simplify the task is a visual representation of the risks and benefits of a treatment versus other alternatives. Since my father’s emergency, I’ve considered whether something like this would have helped me.
One challenge is making such illustrations unbiased. My research found two graphics showing the benefits and risks of tPA, but both were criticized by Jigneshkumar Gadhia and colleagues in a review article published in 2010 in Stroke for presenting a distorted view of the risks and benefits. Furthermore, these types of graphics are complex and can be difficult to understand, even for patients with high health literacy, as noted by Jasmir Nayak and colleagues in a 2015 article in Patient Education and Counseling.
Another problem is that the graphics show the aggregate results of clinical trials. For graphics to be meaningful communication tools, they need to depict the risks and benefits for each patient as accurately as possible. Some work has been done to tailor risk-benefit calculations to patients using data from stroke registries and to present these data to patients and families. This would not only have given the residents treating my dad more precise guidance, but it would also have allayed my concerns that the treatment they recommended was dictated by a rule of thumb instead of my father’s particular situation.
Translating the results into easy-to-understand graphics remains challenging, however. Testing these tools with diverse patients, including those with limited health literacy, will be essential.
Some people would argue that stroke treatment is not an area that should be subject to shared decision-making. They would say that the science is clear and that a doctor’s objective should be to obtain consent as quickly as possible to increase the likelihood of a good outcome. Some patients and family members would indeed prefer to abdicate the decision to clinicians. That is their prerogative. I believe that patients and family members have a role to play, even when decisions must be made quickly. The claim that “it’s an emergency” does not exempt clinicians from engaging patients and families and explaining the situation in an understandable way so that if consent is given, it is truly informed. Evidence should never be used as a cudgel to pressure patients to consent to treatments they don’t fully understand.
Different people will be prepared to take different risks. Some people will feel better if they avail themselves of a chance for a full recovery, even if the treatment involved is risky. Others will feel worse if they gave their consent for something that ended up killing their loved one. There will always be bad outcomes, and how patients and their families feel when they occur matters. After all, patients and families have to live with the consequences.
The informed consent process has to be more than chasing down a signature for a form. To empower patients and families to make informed choices, health care organizations must build supportive systems. For example, hospitals could maintain a library of high-quality decision aids, which are tools designed to facilitate shared decision-making and patient participation in health care decisions. Even the most dedicated doctors will have difficulty engaging patients and families in shared decision-making without the support of their institutions.
Hospitals’ “door-to-needle time”—the time between when a stroke patient arrives and when tPA is administered—is now a quality metric. There has been a major push to increase the number of stroke patients who receive the drug quickly. Protocol dictates that when a stroke is suspected in the hospital, a stroke team is called to evaluate the patient. If the patient meets the criteria for tPA, a CT scan is done, and if there are no signs of a brain bleed, tPA is administered.
To turn informed consent into informed choice, patient and family engagement has to be integrated into this protocol. It could dictate, for example, that while the patient is being evaluated, a member of the stroke team lets family members know that a decision may have to be made quickly and asks if any other relatives should be involved in the decision.
The protocol could also specify that during the CT scan, the family be briefed about the results of the evaluation, the purpose of the scan, and the upcoming decision about whether to administer tPA. The next step would call for the doctor to sit down with the patient and family and use a personalized decision aid to elicit their goals and preferences. After discussing the benefits, harms, and risks of the options, including the option of no treatment, the doctor would check that this information had been understood. The final step would be that the doctor helps the patient and family make a choice. Everything could be accomplished in a short amount of time if the process was streamlined and clearly delineated.
Simply having a policy in place that doctors must obtain informed consent is not sufficient. To make sure that patients and families are appropriately included in decision-making every time, roles need to be specified (for example, who is going to explain the results of the stroke assessment), logistics need to be worked out (for instance, where there is a place to talk, or how family members who are not on site will be contacted if cell phones don’t work in the ED), and staff members have to be trained (for example, how to use decision aids, engage patients and families in the decision-making process, and check their understanding of the information they’ve been given).
In addition, adherence to policies about patient and family inclusion has to be monitored. And when policies are not followed, these failures should be studied to determine where the breakdown occurred and what corrective action is needed.
My father was lucky. He got back most of his functioning after the brain bleed, although he can only play Ping-Pong sitting down and can no longer go out for a walk by himself because he is at risk of falling or getting disoriented. The doctors are pleased with the outcome, but I am displeased that they did not explain the risks before I gave consent. The health care system needs to hardwire patient and family engagement into the informed consent process, even in emergencies.
When the residents gave my father a stroke diagnosis, I needed someone to serve as an unbiased interpreter of the evidence, to recognize my knowledge of this particular patient, and to ask about our values and goals. I needed someone to acknowledge that we faced a hard decision, that there were no guarantees, and that it was ultimately our choice. Anything less violates the principles of informed consent and the dignity of patients and families.
Volume 35, Number 4. April 2016.
Editor’s Note: The views expressed in this article are those of the author, who is responsible for its content, and do not necessarily represent the views of the Agency for Healthcare Research and Quality (AHRQ). No statement in this article should be construed as an official position of AHRQ or of the US Department of Health and Human Services.