Introduction

THE SOUND OF a door slamming awoke us. What was going on? I glanced at our bedside clock. It was 2:30 in the morning. “Mom, Dad,” my younger daughter, Hilary, called from the front door. She sounded upset.

“Hilary,” my husband, Tom, said groggily.

“Get up, quick!” Hilary shouted. “Aaron’s been shot!”

Aaron was the husband of my older daughter, Amanda. He, Amanda, and their two young children—three-year-old Jackson and seven-month-old Jovie—had been at our house that evening for dinner. At 8 p.m., Aaron had left to work the night shift as a police officer in our town.

Tom and I jumped out of bed, threw on clothes, and ran to the living room. One look at Hilary, and I could tell that it was bad. She had run to our house and was alternately sobbing and gasping for breath. Standing next to her was our friend Ben, another police officer. Tom was a retired police officer, and Ben had worked for him on the narcotics squad.

“Where’s he hit?” Tom asked the two of them. “Where have they taken him?”

Hilary knew very little. Ben put on a brave face, but he was shaken—you could tell by the look in his eyes. “It’s pretty bad,” he said. “Tom, Aaron was shot through the eye.”

Having worked for decades as a nurse, I went into my clinical, problem-solving mode, calling the hospital to find out who the trauma surgeon was on duty. There wasn’t much I could do, but making that call at least allowed me to combat the overwhelming feelings of panic and helplessness that were washing over me.

It was 3:30 when we arrived at the hospital. Amanda was there, and they had taken Aaron into surgery. Two police officers stood guard outside the room. From them, we learned that Aaron had been investigating a call in a high-crime neighborhood when he spotted a suspicious-looking man. As he approached, the man bolted, and Aaron pursued him. Without warning, the suspect turned and pointed a gun. We knew Aaron had drawn his own weapon because other officers later found it under his body. But he never had a chance to use it. Before he could, the suspect fired every round in his gun. Aaron went down. Other officers administered CPR until the ambulance arrived. The two officers were guarding Aaron because the suspect hadn’t yet been apprehended; as it turned out, the perpetrator was a career criminal who had spent most of his life in prison and was out on parole after being incarcerated for assaulting a police officer.

Amanda sat sobbing. Her husband was probably dead. At the very least, he would be permanently disabled, possibly in a vegetative state. She had two babies to raise. How would she do it? What would happen to their family? As Tom and I hugged her and tried to console her, she sat clutching Aaron’s wedding ring. A quick-thinking female officer had taken it off Aaron before they put him in the ambulance, mindful that if she didn’t, Amanda would lose access to it—the police department would keep it as “evidence.” As upset as Amanda was, it was such a comfort to her to have that ring. Somehow, it helped her get through the initial shock of what had happened.

Sometime later, a nurse came and brought us to a consultation room where we were to receive an update on Aaron’s condition. This room was small and windowless, with seating for a family of eight. This is where the doctors and pastoral care staff come to give you bad news. Families sit there dreading the appearance of the hospital staff because they know that their lives are about to change forever. As the minutes ticked by one after the next, we stared at the door wondering what was in store for us. All we could do was wait.

Finally, Aaron’s neurosurgeon came in. She sat down and took Amanda’s hands. As she calmly recounted, the bullet had grazed Aaron’s nose and entered through his left eye. It had broken apart upon impact. Half of it was lodged in the back of Aaron’s brain, while the other half had fragmented in his left frontal lobe. Aaron had multiple facial fractures. “The best-case scenario,” the doctor said, “is that Aaron will never speak again, and he’ll have limited use of his right side.”

I don’t remember it myself, but other hospital staff later told me that when the doctor left the consultation room after speaking with us, she was crying.

An Epidemic of Suffering

I recount this story because so often in healthcare, we lose touch with what patients and their families experience when someone they love experiences a health crisis. But let me be more specific. So often we lose touch with the suffering that patients and their families feel. Imagine having something bad happen to a loved one—something that cannot be undone. Your loved one will never be the same and never achieve his or her dreams. In our case, Amanda was suffering, and so were Tom and I. Tom had encouraged Aaron to become a police officer—he had loved the job so much and believed (rightfully, it turned out) that Aaron would, too. Now Tom was overcome not merely with concern for his son-in-law and his daughter, but also with guilt. I felt sick to my stomach thinking of the suffering Amanda would soon experience. I thought about what it would feel like to look into my three-year-old grandson’s eyes and try to explain why daddy wouldn’t be taking him to preschool that morning.

As a nurse, I pride myself on taking charge and finding solutions. This time, however, there was nothing I could do. I couldn’t make the situation better, I couldn’t change what had happened, and I was completely powerless to fix anything, just like every other devastated family member of every other patient in the ICU.

I recount Aaron’s story for another reason. We healthcare providers don’t just lose touch with patient suffering. All too often, we unwittingly cause it or make it worse. After that initial consultation with the neurosurgeon, she went off call. Twenty-four hours later, Aaron was still in the ICU, and we still hadn’t heard from anyone. To say we were worried doesn’t begin to describe how we felt. We stayed in the waiting room with all the other families, sleeping on couches and chairs, using thin blankets and hard pillows. We tried to sleep, but of course, we couldn’t. Every time a person in a white coat came by, we sucked in our breath and sat up straight, wondering if that person was coming to speak with us.

We wanted news, but the prospect of hearing it also terrified us. In the absence of information, we tended to dwell on worst-case scenarios. Truthfully, I wasn’t sure what to pray for. As awful as it sounds, I knew that Aaron would not want to live in a persistent vegetative state on a ventilator and feeding tube for the rest of his life. I couldn’t imagine what that would do to my daughter and my grandchildren. I wanted a positive outcome for Aaron, as positive as we could get. I wanted him to come back to us, but I wasn’t sure that could happen. We had more questions than answers. Tom and I talked about what nurses we would choose to help take care of Aaron if he could live at home, and whether Amanda and the kids would need to come live with us. With each passing hour, we grew more anxious and despondent. I don’t remember if I knew it all the years I worked as a nurse, but I sure knew it the night Aaron was shot: waiting, for family members of a patient, is suffering. It’s excruciating, plain and simple.

More suffering was in store for us. When we couldn’t take the waiting any longer, I called the chief of neurosurgery and asked him to have someone come and talk with us. He said he would send the neurosurgeon on call. An hour or two later, the doctor arrived, but he wouldn’t talk to anyone but Amanda. In all fairness, there were a lot of us waiting by then, and the doctor probably felt intimidated. Still, as a nurse and our family’s de facto clinical liaison, I felt aggravated that the doctor would not talk to me. Even as I asked questions, he never took his eyes off Amanda. That unnerved her, too. She was working hard just to get through life minute by minute, and she was looking to me to take care of the complexities of the healthcare system. This doctor didn’t seem to get it.

He informed us that Aaron was not moving his left side at all due to the injury, and he was moving his right side very minimally. We were instantly concerned that Aaron’s condition had taken a turn for the worse. “Oh, wait, no, no,” the surgeon said. “I meant he’s moving his left side, the side he had already been moving.” I wasn’t thrilled about the doctor’s uncertainty, but I was willing to give him a break—he was, after all, the “on-call” surgeon. But then he said, “We’ve put him on antibiotics for his pneumonia.”

“He has pneumonia??!!” I said.

“Well, no,” he said, “but he’s intubated …”

At this point, I stopped listening. This doctor clearly didn’t know his patient, and I no longer trusted him to care for my son-in-law. For whatever reason, this doctor had failed in his most important responsibility to us: to make my son-in-law, and by extension, his family, feel safe. Without realizing or intending it, he caused us to suffer, worsening the trauma we were already experiencing.

Such suffering is endemic in healthcare. We don’t like to talk about it, but it’s there every day in hospital rooms, ICUs, waiting rooms, emergency departments, and exam rooms throughout the United States. In the course of dealing with a wide array of health issues, patients and their families get lost in our complex, fragmented, and chaotic healthcare system. They’re treated in ways that cause or magnify fear, sadness, anguish, or other painful emotions. And it isn’t just patients and their families who suffer. The people who care for them—doctors, nurses, therapists, technologists—suffer, too. With healthcare organizations trying to do more with less, bedside caregivers are left to navigate starkly competing priorities. They become tired, overwhelmed, and disconnected from the original passion that initially attracted them to healthcare. Work becomes painful drudgery and inconvenience rather than what it should be—a unique opportunity to find fulfillment and purpose in serving others.

Current systems, processes, and attitudes in healthcare prevent us from addressing the suffering of both patients and caregivers. So what’s the answer? First, and most obviously, we should become more mindful of the suffering we cause, and make our colleagues more mindful of it, too. We should also measure both patient and caregiver suffering, in large part using data that already exist today. Going back to basics, we can better understand the care experience and determine if suffering is decreasing or increasing over time. But talking about and measuring suffering are not enough. We also have to do something about it—as individuals, as teams, as organizations, and as an industry. We need a concrete plan, one that helps us make meaningful progress and that allows all of us in healthcare to get closer to our basic purpose: caring for people and helping them to heal.

Solving for Suffering

Aimed primarily at readers who care for patients every day, The Antidote for Suffering is the first book to examine the problem of suffering and to offer practical solutions. In particular, this book presents a powerful, evidence-based plan for reducing suffering and optimizing the patient and caregiver experience. Over the past several years, my colleagues and I have conducted extensive qualitative and quantitative research into suffering and its opposite, compassionate and connected care. We asked hundreds of patients, clinicians, and nonclinicians what compassionate and connected care actually looked like to them. Analyzing their responses, we teased out common themes and patterns and eventually distilled our qualitative data into an affinity diagram consisting of twelve themes: six for patients and six for caregivers. This model, called Compassionate Connected Care™, covers the clinical, operational, cultural, and behavioral dimensions of care that all patients and caregivers experience in every setting.

As I show, the Compassionate Connected Care model points us to a variety of concrete tactics that individuals, teams, organizations, and the healthcare industry can implement to reduce suffering and dramatically enhance the quality of healthcare experiences. In the chapters that follow, I document the scourge of suffering, assess the various forces that have made it so prevalent in healthcare today, and present the Compassionate Connected Care model in detail. I devote the bulk of the book to describing tactics for reducing suffering. As you’ll see, some of these tactics are so simple that you can begin to deploy them this very instant to make a meaningful difference in your work environment. Others require more collaboration and coordination. As a group, these tactics are practical and accessible, no matter what your specialty or the kind or size of your organization. These tactics also require very little to implement—no significant outlays of money, staff time, or other resources. In fact, taking steps to “solve for suffering” actually saves money and helps organizations to deliver higher-quality care. As research shows, caregivers who perceive a reliably better experience become more engaged and loyal employees. And patients who perceive a reliably better experience have lower readmission rates, shorter lengths of stay, and lower incidences of hospital-acquired conditions. Solving for suffering increases patient safety and decreases an array of costs for healthcare organizations.

A Unique Vantage Point

In addition to tactics, I’ll present a number of stories from patients and their families, as well as caregivers, to help evoke the problem of suffering and the difference these tactics can make. Included among these are my own stories. For much of my career, I thought I understood well enough how patients and caregivers experience healthcare. I’ve been a nurse for over 30 years, working for 10 years at bedside before moving into a variety of leadership roles. Beginning in the late 1990s, I worked on redesigning the flow of patients from the emergency department to the operating room and downstream to the ICU, helping to improve overtime, efficiency, morale, and experience at an 800-bed community-based, level 1 trauma center. I eventually joined the consulting-firm startup PatientFlow Technology, and in 2009, when Press Ganey acquired PatientFlow, I was tapped to lead Press Ganey’s clinical and operational consulting practice. In 2012, I became Press Ganey’s first chief nursing officer. I also have taught Nursing Leadership and Management at Missouri State University, my alma mater, for almost a decade.

As helpful as this varied experience has been, it didn’t alert me to the epidemic of suffering in healthcare. What did was my own, personal encounters with healthcare. About a year before Aaron was shot, I was diagnosed with a serious illness and became a patient for the first time. All of a sudden, I understood the dozens or even hundreds of ways that patients can suffer, above and beyond the unavoidable physical and emotional pain accruing from the illnesses themselves. Then in January 2015, when my family and I struggled to process and cope with Aaron’s trauma, I received a stark reminder of what suffering was. Thanks to both of these experiences, I came to understand the profound difference that compassionate and connected care can mean for patients. And I became resolved to do something about it—to spread the word in lectures, presentations, and now this book.

In the chapters that follow, I’ll describe my experiences as a patient, family member of a patient, nurse, leader and administrator, and educator of nursing. The result, I hope, will be something relatively rare: a 360-degree perspective on healthcare and how it is experienced. This perspective in turn informs the scope and ambition of The Antidote for Suffering. Others have written about patient satisfaction, and indeed, my organization, Press Ganey, is known for it. But this book is not about patient satisfaction. It’s about the totality of patient and caregiver experience, including clinical care, operational performance, behaviors, and culture. I’m not interested in helping people become happier or more satisfied. Nobody is happy about being sick or having a family member in the ICU or about waiting in a waiting room. If reducing suffering were only about smiling, making eye contact, and drawing the curtain for privacy, it would be easy. But it’s not. I’m interested in exploring the experience of patients and caregivers from all angles, empathizing with them, and helping to reduce the tremendous suffering they experience every day.

While this book presents strategies and tactics, it isn’t ultimately about these practical solutions or about achieving certain “scores” relating to patient experience. After all I’ve been through as a patient and the family member of a patient, I realize that a score is simply a number. When we went to college, we all majored in something: nursing, medicine, physical therapy, and so on. None of us majored in an “A.” We didn’t sit home until the wee hours of the morning writing “As.” We didn’t have study groups and talk about “As.” We all wanted to make an A, but only because it alerted us to the progress we were making toward our ultimate goal: becoming a nurse, a doctor, a therapist … Likewise, I seek to challenge healthcare providers to consider why it is that we do what we do. I want us to remember each and every day that when we show up for work, we’re not just treating patients clinically—we’re changing lives. We need to understand the true impact we have on patients and their families and adjust our behavior accordingly. If we change our underlying mindset, all kinds of positive outcomes for patients, providers, organizations, and the industry become possible.

Kylie’s Gift

About four days after his surgery, Aaron began to open his right eye and move his left side. He couldn’t move it much—he was intubated and likely confused. Soon, he began to track movement with his eye. “Mom,” my daughter Amanda said to me, “that means he’s in there somewhere! I can deal with that. I can take care of him. It will be OK.”

Over the next few days, Aaron began following basic commands, flashing a “thumbs up” when we asked him to, or wiggling his toes. “Mom, look!” Amanda said. “He can understand. We’ll get through this. I’ll take care of him.”

The hospital brought in child life specialists to help the children, mainly three-year-old Jackson, prepare to see their daddy in the ICU. As a mother and grandmother, you never think that you’ll have to prepare a three-year-old to see his daddy with bandages all over his head and face and with tubes coming out of his mouth and nose, hooked up to big and noisy machines. You never think you’ll have to explain why his daddy can’t talk to him or hold him or read to him.

We didn’t want Jackson to be traumatized any more than he had to be, so the specialists took pictures of the machines and talked with Jackson about what Aaron would look like. When it seemed that Jackson was sufficiently prepared, Amanda took him into the ICU with her, with Tom and me following. She left seven-month-old Jovie behind, reasoning that she was too young and wouldn’t remember anything.

The ICU is a scary place for adults, but imagine being a three-year-old and being told something is wrong with your daddy and everyone you love is sad. Jackson walked to the door, but he decided that he didn’t want to go further. That’s when the first of many miracles happened. In preparation for the visit, the nurses had elevated the head of Aaron’s bed and loosened his restraints. Aaron lifted his eyebrow in a questioning manner and made his left arm into a cradle, clearly asking, “Where is Jovie?”

Amanda turned to me. “Look, Mom! He knows what’s going on! I’m tired of crying. What’s next?”

Months of painful recovery followed. After about two weeks in the hospital, when he was able to travel, Aaron was flown to a well-respected rehabilitation center known for its work with brain-injured patients. Amanda, the children, and I moved to the city where the rehab hospital was located. We expected to be there for nine months to a year. Afterward, Aaron could live with us and return for outpatient therapy. From the very beginning, the care at this facility was amazing. Aaron’s team focused intently on getting him back.

This facility was not the only one to deliver incredible care. Back in the ICU, one of Aaron’s nurses, Kylie, made a special impression on me. She was in her mid-twenties, petite, thin, blond, and very sweet. As time passed, she proved herself to be both a strong woman and a kind and confident clinician. It was Kylie who helped us understand Aaron’s care and navigate the many medical specialists who interacted with him. It was Kylie and her colleagues who helped get the child life specialists involved to help my grandchildren. And it was Kylie who cried with us, prayed with us, and rejoiced with us at every milestone in Aaron’s early recovery. But of her many acts of kindness, one stands out above the others.

At this hospital, patients were allowed only a few visitors at a time. Yet a great many people cared about Aaron. He had a “real” family—us—but he also had a law enforcement family that was just as important to him. His fellow officers needed to see him to know that he was alive, and Aaron needed to know that they were there supporting him. Kylie understood this. She didn’t have to bend the rules for Aaron, but she did, allowing all his colleagues to come visit him. I will never forget this.

You see, Kylie recognized Aaron as a unique individual, not “the gunshot wound in bed four.” Because she saw Aaron that way, she was able to offer him care that was truly compassionate and connected and that was tailored to his needs. Aaron’s recovery was painful—he would suffer no matter what kind of care he received. But because of Kylie, his suffering was much reduced, and his ability to heal was enhanced. And because of Kylie, our suffering was reduced, too.

High-quality healthcare is about much more than just clinical success. It’s about treating patients and caregivers alike with the utmost dignity, respect, and compassion. I will be the first to agree that this is much easier said than done. Sometimes we in healthcare get jaded. We wake up in the morning, have breakfast, go to work, come home, eat dinner, go to bed, and do it all over again the next day. But for all the patients in a bed, on a gurney, or in a waiting room, it isn’t just another day. It’s the day they hear they have diabetes. It’s the day they learn they are pregnant. It’s the day they receive a diagnosis of cancer and know they will be in a fight for their lives.

When we encounter patients, they are at their most vulnerable. They’re scared and at the mercy of the people caring for them. As a result, everything we say and do matters. We may not remember patients and their families, but they will remember us. We have it in our power to change people’s lives for the better, to give them gifts of kindness, like the ones Kylie gave to Aaron and our family. We can leave patients with more positive memories and fewer negative ones. Join me in rediscovering the true meaning of what we do as healthcare providers. And join me in taking new joy in our work. Together, we can improve the care we deliver, and we can help to end the costly and inhumane epidemic of suffering.