Death isn’t optional, so why is end-of-life education?

By Megan Lippe |

We must overcome death denial.

Death isn’t optional, so why is end-of-life education?

Early in her career, the author saw death as failure. Eventually, she learned that death is not always something to avoid and fear.

Megan LippeI recently attended a conference where documentary film maker Carolyn Jones talked about creating a new film, “Defining Hope.” As she shared her journey of learning about death and realizing that end of life is really about living, she remarked on the prevalent denial of death she witnessed. “Americans think death is optional!” she said. It isn’t; it’s inevitable for everyone.

Following Jones’ address, I contemplated the extent to which death denial permeates our society. As nurses, we witness death on a seemingly daily basis, but many people—patients, families, and healthcare providers, including nurses—are unwilling to accept it as the natural conclusion to a life’s journey. Instead, we challenge death and avoid it by all possible means, even to the detriment of someone’s quality of life. It is only when we feel there is nothing more we can do that we remorsefully forfeit the battle and let death “win.” Why?      

Where’s the drama?
When I began my nursing career in 2009, I struggled immensely with the topic of death. I had received some general education about end-of-life care in my baccalaureate program. I vividly remember watching a skills video of postmortem care, the whole time wondering if the patient was deceased or just an actor pretending. I received sporadically a few lecture hours on how to care for dying patients as part of my nursing coursework, but the content was general and I didn’t remember much of it. There were no test questions on the content, so I spent little time reviewing those slides.

Before graduation, my nursing preceptorship introduced me to pronouncement of death for patients, and I was stunned by the lack of Hollywood drama. Where was the dramatic music, the zoom-in on the clock, and the intoning of “Time of death…” at a volume everyone could hear? It seemed anticlimactic and routine. Is this what end-of-life care looks like? I wondered. And so began my journey of death denial.           

My first nursing job was on a cardiac intensive care unit. I was amazed by the complexity of the heart and awed by the medications and technologies available for prolonging a patient’s life. As I gained experience, I was trained on more advanced technologies—balloon pumps, ventricular-assist devices, hypothermia protocols, to mention a few. We celebrated when these tools resulted in patients staying alive and mourned when they “failed.” Quantity of life seemed more important than quality, and I developed full-blown death denial! My patients’ deaths were my failures. I was perplexed when family members decided to stop life-sustaining measures. Why were they giving up? I knew we couldn’t save everyone, but shouldn’t we try everything?          

In the movies, the protagonist experiences a low moment followed by an epiphany that leads to a dramatic, heartwarming conclusion. I wish my denial of death was overcome in the same fashion, but my story didn’t unfold that quickly. Instead, over time, I learned that death isn’t always something to avoid and fear. I witnessed peaceful deaths that transformed my perspectives. I listened to patients and families share experiences with prolonged suffering and how they came to accept death as an inevitable—even welcome—relief.

No longer the enemy
The more I listened, the more my death denial diminished. I saw beauty in managing pain and easing distressing symptoms for dying patients. I learned ways to communicate with patients to more effectively explore their needs and ensure the healthcare plan aligned with their goals and wishes. Death was no longer the enemy. I didn’t seek death, but I didn’t fight it when it came.          

After a few years, I became a clinical nursing instructor. Although my death denial was gone, I didn’t make concerted efforts to keep my students from developing it. In clinical settings, we focused on nursing care plans, medication administration, and the nursing process. I didn’t provide opportunities for my students to bear witness to death, not because I was still denying it, but from a desire to protect those sacred moments for patients and their families.

Over time, I realized this was not the way to educate future nurses. I could not continue to paradoxically accept death in my clinical practice and avoid it as an educator. I needed to teach students how to provide end-of-life care—to help them explore and discover ways to talk to, be with, and care for dying patients and their families. To that end, I created an end-of-life simulation in which I guided students through the care of a critically ill patient whose family ultimately decides to withdraw life-sustaining measures.

End of life is part of life
The simulation experience was a compilation of my successes and failures as a nurse in caring for dying patients. My goal was to expose students, within the safe space of a simulation lab, to the challenging aspects of end-of-life care. After participating in the simulation, students could leave with a toolkit of things to say and do to help facilitate a peaceful death. It wasn’t a one-size-fits-all tool, but it was a definite start.           

As educators, we all struggle with packed curricula. We must ensure students are prepared to pass their licensure exams. But what about after licensure? End-of-life care is an inherent part of nursing. It’s for people that nurses are needed—and people die. As educators, we must make concerted efforts to provide students with the knowledge and skills needed to competently care for dying patients and their families.

Seventeen competencies
Leading nurse organizations have identified the critical need for competency in end-of-life care. The American Association of Colleges of Nursing identifies 17 competencies necessary for nurses to provide high-quality care to patients and families facing serious illness. But how can these skills be acquired amidst crowded curricula, competing demands, and the reality that many educators and nursing preceptors have varying degrees of death denial?

In addition to simulation, I find two strategies particularly helpful. The first is the End-of-Life Nursing Education Consortium’s undergraduate curriculum. This is a six-module online program—one hour per module—in which leading experts provide the didactic content students need. My students have enjoyed it, and I have grown in my own knowledge of palliative and end-of-life care.

Stories that teach
The second strategy I find helpful is teaching end-of-life care through stories. I have observed and been involved in many end-of-life experiences in my nursing career. Sometimes I blundered miserably. Other times, I helped facilitate a peaceful death. I share these stories with my students, frequently in the context of end-of-life education, but not always. When I teach cardiac pathophysiology, for example, I share my experiences of caring for patients in my early days as a critical care nurse. I use those stories not only to teach the pathology of cardiac disease but also to introduce students to the inevitability of death. I share my successes and what I have learned from my failures.

These stories introduce students to death as a natural part of nursing care. I don’t claim that my endeavors prevent students from developing death denial, but they don’t perpetuate it. Students leave my classroom knowing that patients die. Yes, they know that nurses and the healthcare team can do amazing things to care for patients, promote recovery, and even circumvent death. But they also know that not everyone survives and that not every patient or family wants to pursue additional interventions. And they learn that nurses play a critical role in both life and death for patients.

Death isn’t optional. As nurses, we cannot continue to treat it as such. As educators, we fail our students if we let them go through an entire nursing program with minimal exposure to end-of-life care. Providing high-quality end-of-life care is just as important, if not more so, as any other nursing care we provide.

First, we must try to combat and overcome our own death denial. Then, we must take measures to ensure we prepare our students to provide end-of-life care when they enter nursing practice. Only then can we confidently say we have equipped our students to succeed as nurses. RNL

Megan Lippe, PhD, MSN, RN, @DrMLippe, is an assistant professor and simulation specialist at The University of Alabama Capstone College of Nursing in Tuscaloosa, Alabama, USA.

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