We're All Dying... So Let's Talk About It

By Michael Pagano

I grew up in a three-bedroom house in Oklahoma, where my mother was Irish and my father was Italian. As the oldest of four, I was told about my paternal grandparents, who died before I was born, and how they had spent the last weeks of their lives in my bedroom. Thus it was not surprising that when my mom’s parents and siblings, as well as my dad’s sisters, were dying, the bedroom that my brothers and I shared became the family hospice. Over the years, numerous relatives took over our room and we moved to couches while they spent their final time on earth with us. My mom would cook and care for them and we would come home from school and sit and talk to them about our day – their deaths were part of our lives.

Coupled with my career choices (combat medic in Vietnam and an emergency room physician assistant), my experiences have been almost as much about dying as about living. But that is not the 21st-century norm and this reality creates problems when teaching health communication. Repeatedly, regardless of whether they hail from communication, health studies, or professional fields (e.g., M.D., R.N., P.A., etc.), students will say the same thing: “I haven’t talked with people who are dying.”

For adolescents and young adults whose next 40-50 years will likely include the deaths of countless family and friends, students need to be effective end-of-life communicators. Fortunately, I teach at an institution, Fairfield University, that embraces experiential pedagogy vis-à-vis service learning. Consequently, eight years ago, “End-of-Life Communication” (CO 341) was first offered with an additional 20-hour service-learning requirement. By mid-semester, the students travel together to an in-patient hospice. They get to see as a group the differences between dying in hospitals or nursing homes versus a hospice. For example, the hospice patient rooms have four beds, so no one dies alone. Also, when a patient dies in the hospice they are moved in a bed with their faces exposed and a flower in their clasped hands – compared to hospitals and nursing homes that generally hide bodies from view. 

The students travel in two- or four person teams to volunteer, giving them an opportunity to share both their anxieties on the way to the hospice as well as their stories on the way back. Initially, they work either with a music or art therapist and go with the professional to the bedside to sing, make name signs for patients, play instruments, do art, or read to the dying residents.

Above are six examples of books on death and dying. Click on each picture to learn more about each specific book. 

Concurrently, teams that have been to the hospice since our last class are asked to share their stories and experiences. Most of these narratives are joyful, about patients who told the students about their lives or who wanted to get to know about the students’ backgrounds, or stories about interactions with the patients’ families, who were grateful for the students’ visits. Invariably, some of the patients have died and the entire class discusses various teams’ stories about the dying person.

After three or four of the two-hour visits, the student teams begin talking to patients or family members alone. It is at this point in the course that the students begin to report “feeling transformed.” Young women and men – who professed in their first self-reflection essays their fears of being around dying people and not knowing what to say – are now spending 30 minutes, or in some cases their entire two-hour shift, talking to dying patients about life (both the student’s and the patient’s). By the final essay, the volunteers universally report that they are less afraid of communicating about dying and death and more interested in sharing narratives with and about the patients.

For example, one student, Jenna, initially reflected, “In my life, I have experienced certain circumstances when my family purposely left out details about my sick relatives because they thought I would not be able to handle the truth. That was really frustrating because I wanted to get a chance to spend time with those loved ones before passing, and I felt cheated.” In her final reflection, she wrote, “Every day when I left hospice, I felt that I was a better person. I was so thankful for the lessons and patients I met. I am so thankful for all the memories I gained. I will forever keep them in my heart and try to be a better person for them.”

Clearly, end-of-life communication is a difficult conversation – especially for adolescents and young adults. However, using an experiential, service-learning approach, coupled with a variety of print and multi-media texts (see sidebar), it is possible to help students see death as a part of life and not a taboo topic. Furthermore, while this interdisciplinary offering focuses on death and dying, I believe a similar experiential approach could be used to teach other difficult conversation topics (e.g., sexual assault, domestic abuse, unwanted pregnancies, etc.). One of the key surprises from teaching this course annually for nearly a decade is that, even though it is an elective, it always fills, and this is thanks to prior students who encourage their peers to take it. Clearly, the volunteers in CO 341 each spring form many powerful relationships, and they do so with strangers who the students know are actively dying. As a result, this course embodies the Jesuit mission to develop men and women for others – especially others who are at the end of their life cycles.

Michael Pagano is an associate professor of communication at Fairfield University.

The cover photo is courtesy of Jeff M for Short of the Flickr Creative Commons.