What It's Like to Be a Hospice Nurse

Snapshots of life at home.
June 19 2013 5:30 AM

Approaching Death

A nurse goes from the ER to a hospice, and changes the way she thinks about life and its end.

130618_FAMILY_HospiceNurse

Illustration by Robert Neubecker.

This essay originally appeared in I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse, a collection edited by Lee Gutkind, out now from In Fact Books.

A child is dead.

There is a terrifying, soul-piercing scream that a mother makes when she loses a child. This scream is so universal that everyone, in every corner of the emergency department, knows what has just happened when they hear it.

On a sunny summer morning, a young mother of a 3-year-old watched, stunned by ultimate dread, as her little boy ran out into the normally quiet street. On that day, however, the driver of a rainbow-painted Volkswagen bus careened through the neighborhood; 20 minutes later the mother stood in our trauma room, looking as if she might collapse. She told us, through tears and broken English, how she had heard the screech of tires, the crumpling thud. She ran into the street, knelt down to her son, and gathered the little boy into her arms.

It may have been clear to the paramedics, when they arrived, that this child had no life left in him, yet they knew to move with the kind of energy that infuses hope into impossible situations. They did everything in their power—oxygen, monitors, IVs—an all-out resuscitative effort. It is hard to imagine anything worse for a parent than to watch an aggressive attempt at her child’s resuscitation. Except, I suppose, to see no effort at all.

The little, broken body was transported to our emergency room, and we put on a similar show—a collective swoop of doctors and nurses and technicians. We focused the exam lights on him and looked, listened, strained to detect some tiny morsel of life with which to run; it’s not just for the benefit of the parents that we go all out, even when mottling has set in. We, too, need this cathartic effort in order to begin to grieve. Seeing a child die is never easy.

Years ago, it was customary to keep families out of the room when a crisis was in progress. But nowadays we know that one last look, one more moment of hope can be vitally important to the process of saying goodbye. The mother, looking stricken and white, stood by the door and held onto the arm of a nurse. When the initial moments had passed, the chaotic energy in the room suddenly changed. The doctor lowered his voice and called the time.

And so, the scream.

I left the room to find the father in the waiting room down the hall. I paused at the door before entering, wanting to wait as long as possible before destroying his world. He took one look at my face and fell to his knees, his forehead slapping onto the scuffed white floor. I waited while he groaned to his feet, then led him to his wife and dead child. So the parents could sit with the little boy, the team had tried to clean him up and had pulled the tube from his nose. I motioned the father into the room and left them alone to say their goodbyes. I had to rush to the next emergency.

130603_FAM_NurseHospice

Courtesy of In Fact Books

That was the moment when my edges began to wither and I felt a hardness creeping in. Was it really possible that my response to the intense anguish of two broken parents was to push them into a room and run off to finish my job? When had I become so callous? I remembered myself as a new nurse—one who made it a point to touch every patient, even when she wasn’t examining them; who had a gift for sensing what a psychotic patient needed in order to de-escalate; who was known as the one to call when a battered woman needed to feel safe enough to talk—but this memory was distant and faded.

I was overly sensitive, even as a child, to the suffering of others. When I watched Westerns, I would get teary when the cowboys yanked at the mouths of their horses. “Think about how lucky those horses are,” my father had said, trying to console me. “They get to run all day.” I became so upset when I read Black Beauty that I hid in my room and cried for hours. I know the story has a happy ending only from secondhand accounts as I’ve never been able to bring myself to finish it. In the fourth grade, I jokingly pulled the chair out from behind a shy and quiet classmate, the way I had seen it done on The Three Stooges. The boy fell and hurt his back, and I was so distraught over his tears that I never spoke to him again. While working in a bookstore, years later, I happened to glance through the pages of an autobiography written by a man who had been viciously abused as a child. I went home sick that day because I simply couldn’t function with those pictures in my head.

How does someone with these pathological, debilitating reactions to distress function in a world of endless pain and struggle? Easy. Build walls and stay busy.

I had been involved in emergency medicine for 14 years—first as an emergency medical technician, then as a paramedic, and finally as a nurse. The crackling energy and hot, white lights of the ER seemed like a perfect fit for my frenetic nature. I’d always had enormous reserves of energy; reading was the only thing that ever slowed my racing thoughts, and my mother would hand me a book the way another might hand her child a lollipop. So, there I was, a center stage participant in a vital dance, and the result was a matter of life and death. I felt completely at ease. When I speed-walked down the halls, I often heard the joke, “Where’s the fire?” There were never charts waiting on the desk when I was working, and my inability to sit still, or to even slow down, lessened the workload for everyone as I zipped through the incidentals, the standard protocols, the well-worn paths of action. Everyone around me thought I was doing a great job.

But nonstop motion is not always as productive as it seems—the best emergency workers, in fact, move slowly, carefully. I eventually realized I was missing something. I felt like I was floating through someone else’s life, as if I wasn’t actually feeling compassion. I felt like a fraud.

I went to nursing school partly because I liked being the one whom people looked to and leaned on in times of crisis. Like many people I met in emergency medicine, I had the proverbial need to be needed. I took pride in caring for my patients, but my urgency to be in the next moment prevented me from really seeing them. My co-workers liked to work with me, of course, and my employers thought I was excelling. But what about the patients? I didn’t know how to find my buried compassion, nor did I know what to do next. But I knew the time had come to move on.

The ability to change specialties is one of the best aspects of nursing. I assumed, because I had seen so much, because my critical care skills were the envy of some physicians, and because I knew exactly how to react in the direst of situations, that I was qualified to do anything. I had seen things most people would never see, having been at the center of a pounding, bloody battle where we won as often as we lost. I needed something completely different. Of course, any other type of nursing would be, if not a step down, at least less challenging. I walked around a job fair, aimless and uncertain, until I found myself standing in front of a hospice booth.

I had been, in my childhood, a distant witness to several deaths. When my great-grandfather died, I watched my mom cry and was sad he would never finish teaching me to play pinochle. I was heartbroken for my friend when her mother died, and I cried and cried when a car hit my golden retriever. But I was never afraid. This is not to say that I was evolved or anything. When I was 13 years old and square in the middle of that most awkward, terrifying slice of adolescence, I actually looked forward to death. Perhaps it was a brief, pathological, adolescent-induced depression that made me wish for it. As I matured, however, the feeling that death was a lovely way out stayed with me. Nothing could ever get me really down, or be too serious, because I would eventually die. It may sound like a strange consolation, but I had become quite comfortable with my old friend, Death.

Maybe hospice would be the fit I was searching for. During my first month of the new job, I agreed to work the weekend on-call shift. Two 12-hour days of nonstop calls took me from one end of the spectrum to the other: reinsert a urinary catheter, teach a family what CPR really entails, hold a child’s hand as his mother takes her final breaths. I constantly switched gears, depending on where a particular patient or family happened to fall on the timeline of life and death. Caring for the dying, as well as their families, I hardly noticed that I had somehow chosen the one shift in hospice that fit my old profile.

Over one weekend, I ordered antibiotics for a 98-year-old woman who lived alone and refused help with anything, comforted a woman who had to place her elderly husband in a nursing home against his will, and started an IV on a young woman who insisted she was not ready to die, though every system in her body was decaying from cancer. I spent two hours talking a wildly delirious patient into allowing his wife to give him his meds; I ran back to the office for supplies, twice; and I spent several hours with family members as they waited for the mortuary to pick up their matriarch.

It was five o’clock on a crisp, chilly Sunday evening when my pager beeped again: “Six-week-old patient in crisis.”

Six weeks?

A tiny flaw in the genetic makeup of a developing human can result in a life just incomplete enough—after nine months of gestating, 16 hours of birthing, and a few hours of bonding—to be afflicted with multiple congenital anomalies. “Take him home,” the doctors said, “and hospice will help you keep him comfortable. We are probably talking about weeks.”

The baby would suffer from longer and longer periods of status epilepticus, and drugs would become less and less effective. His tiny frame would flail in violent, disorganized muscle contractions 10, 15, 20 times a day. The hospice team—a nurse, a social worker, a chaplain, and a CNA—visited the parents every day to comfort them, to teach them to care for him, and to support their grieving process. The family had gotten to know this team, but I was the nurse on call that day.

Thirty minutes after I got the page, I drove up a bumpy dirt road to a little green house on the side of a mountain. The neighborhood was quiet, private, and filled with golden aspens changing colors for the season. The door opened before I knocked. The father’s eyes were teary, and his parchment skin looked drained and hollow. He led me silently through a hallway, one entire wall of which was covered with books—perhaps the ones they had hoped their son would read. The mother was sitting in a rocking chair, holding her seizing infant. “It hasn’t stopped for twelve minutes.”

All I could do for him, for them, was be calm and present as this tiny creature worked his way toward the end we all come to. My heart broke for them, but I stood by and fought the urge to rush in. I couldn’t intrude on this precious process. I waited with them, moving only to help with positioning or to offer gentle suggestions. In the air, I felt his tiny presence slip away, slowly and peacefully. He stopped moving, his breathing slowed until it was imperceptible, and for a moment his complete stillness made me hold my own breath. I reached for the pediatric stethoscope around my neck, warming it in my hand so as not to startle him. As I pressed it against his chest, his mother said, “His name is Christopher.”

“Hi, Christopher,” I whispered as I listened.

I didn’t need to say the words. I knew from her expression that she knew. A slow, fat tear dripped down her face, and I backed away, just far enough out of the picture, in my attempt not to invade this moment of goodbye between the three of them. There was nothing for me to do but be still. I crept back, found a chair, and sat to wait.

And then I began to sob.

I felt myself losing control, choking and sobbing as if he were my child, my loss. I didn’t even have children. I tried not to make noise, tried not to trespass on their moment. I was so ashamed! I was supposed to be their support, their rock. I moved to quietly slip out of the room, but I felt the husband’s hand on my shoulder. His eyes were wet and kind. He handed me a tissue.

I couldn’t believe what a failure I was.

I got it together, finally, and helped them decide what to do. I called the physician, the coroner, and the mortuary. At the mother’s request, I got permission from the mortuary for the couple to drive the tiny body themselves. I helped them into the car by holding the baby, who now had a little blue cap on his head, while his mother settled herself in the passenger’s seat. I placed Christopher on her lap, hoping they wouldn’t get pulled over and have to explain why their baby was not in a car seat.

I was watching them ease down the driveway when the car suddenly stopped. The mother gently handed her little bundle over to her husband and got out of the car. Before I could react, she’d wrapped her arms around me. I was so stunned by the gentle, intimate comfort she offered that I barely moved. She finally let me go, looked at me, then got back into the car. They drove off. As I watched them go, I wondered if maybe I hadn’t failed. I hadn’t swallowed my grief. I hadn’t patronized them or tried to explain “the process.” I had been absolutely present with them in that agonizing, priceless moment. It was the best I could do.

---

This essay originally appeared in I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse, a collection edited by Lee Gutkind, out now from In Fact Books.