“The Dying Course”

Meredith Levine teaches journalism at the University of Western Ontario.This past year, she created and taught the first-ever Canadian j-school course on death and dying. Levine’s graduate j-students visited palliative care units in the city, and interacted with the terminally-ill patients , as well as their families and health care providers. The result: a series of stories that will be hosted on CBC.ca. But what is it like to report on subjects who may die, or did die, by the time the story was published? And how do you encourage students to keep going when it gets too depressing? We talk to Levine, and two of her students.

Meredith Levine teaches journalism at the University of Western Ontario.This past year, she created and taught the first-ever Canadian j-school course on death and dyingThrough a partnership with London Palliative Care providers, Levine’s graduate j-students visited palliative care units in the city, and interacted with the terminally-ill patients there, as well as their families and health care providers. The result:  a series of stories that will be hosted on CBC.ca under the project title “A Good Death.” But what is it like to report on subjects who may die, or did die, by the time the story was published? And how do you encourage students to keep going when it gets too depressing? We talk to Levine, and two of her students: Angela Richardson who wrote a text piece and created a radio documentary on forty-eight year old Sheri Swick who spent her last days working with working with music therapist Jill Kennedy-Tufts to create a digital legacy recording of her last thoughts and songs for her family, and Sean Leathong.who wrote a text piece with accompanying videos on pediatric palliative care. Leathong’s piece focused on the role pediatric palliative care plays in helping dying children and their parents let go. Those interviewed included Paola Rios whose daughter Sofia passed away when she was still an infant, and Dr. Christine Newman the pediatric palliative care doc at SickKids who worked with Sofia and Paola. The series goes live Wednesday.

J-Source: First, how did the idea for this course come about?

Meredith Levine: The idea for the dying course was sparked last year at a dinner party. One of the attendees, Sharon Baker, a palliative care physician, kept us spellbound with her stories of working with the dying. As a radio journalist, I cursed myself for not bringing a recorder. But from that curse, the dying course was born.

J-Source: You mentioned the students, all in their 20s, spent time in palliative care wards and that for many it was their first experience with death. Tell me a little bit more about the work involved, and your experiences.

ML: It’s for the students to share their experiences, but I can share the process:

Before the course began, I recruited several palliative care specialists as participants. Without their support, student access to dying patients and families would have been impossible. Every single doctor I contacted embraced the project and worked hard to get all necessary approvals from their hospitals or care centres.

At the start of the course, the class spent an orientation day at St. Joseph’s Parkwood Hospital which houses a large palliative care unit. We had individual sessions with a range of palliative care providers: a nurse, a pharmacist, a social worker, a music therapist, a chaplain, a volunteer and a physician. We then toured the ward. The students were completely silentduring the tour. I suspect many were terrified.

After this, it was up to the students to make their own contact with palliative care units. Parkwood became the hub for our project, and they even allowed students to sit in on confidential staff briefings (for which the students signed confidentiality agreements) but the students also spent time in several other facilities, hospices and homes, including many places that were not on my original contact list but became part of the project through student initiative. Almost all students spent time in a palliative facility as part of story research, many repeatedly, but not all of them interviewed people who were dying.

Angela Richardson: This project was an incredibly enriching experience. Before this project the only exposure to death I experienced was attending funerals. I have never spent time with someone who was dying. For this project I spent several sessions in a palliative care unit with one particular patient. I was present while she recorded messages to her children and grandchildren. The sessions were emotional and at times challenging.

J-Source: Reporting on death is tough stuff. As you said, many of the students’ subjects died while they were doing the story, and many more will die after the stories are published. How did they handle the emotional stress of such reporting? Were there moments when they wanted to quit?

ML: YES. And I probably don’t know about most of them. The first class was pretty dead (OK lame pun intended) as students realized that they really were going to spend a whole term on the death beat. Some would have bailed if it weren’t for the fact that all of our electives last term were over- subscribed. But dread mostly gave way to excitement and in the end, not one student regretted the experience.

I felt a deep responsibility to my students but I did not get directly involved in the emotional processing of their experiences. I am not a therapist and I did not want to inadvertently harm students through inexpert handling of their emotional struggles. Instead, I recruited a friend of mine, Alexandra Horsky, who IS a therapist and a chaplain on an intensive care ward in a Toronto hospital to be on call for my students if they required extra support. About half of Alexandra’s time at her hospital is spent helping staff deal with the impact of dying patients and she is highly skilled in this area. Students were also encouraged to contact student counseling on campus if that was preferable.

AR: I didn’t want to quit but I wanted to cry a lot. Spending time with a woman who is recording her final messages to her children and grandchildren is emotionally challenging, especially when you take into consideration her age because, she was only 48. I found transcribing the interviews and sessions emotionally draining. After one particularly tough session I asked Jill Kennedy-Tufts, the music therapist, how she did it but I already knew the answer. At the end of that session Sheri said to Jill, “thank you for doing it for me. I could never have found anyone to do this for me.”

Sean Leathong: There was never a moment where I wanted to quit, but there was a lot of self doubt in telling this story. It was very difficult to balance the heartbreaking story of baby Sofia with the good work that is done by the palliative care team at SickKids. As a young journalist my fear was that I would not do them justice.

J-Source: What did you, as their teacher, do to support them?

ML: The students were asked to contact me immediately if they hit an emotional wall and I did receive a few urgent messages from emotionally distraught students. Alexandra, the chaplain/therapist, was contacted right away. Those SOS messages were the most difficult moments of the course for me and without Alexandra as a back-up I likely would have slept less.

Beyond that, I checked in regularly with students who had taken on particularly emotionally challenging assignments or who were coping with family tragedies and crises on top of the course.

I divided the class into groups of two or three to act as both an editorial and a buddy system and I met with the groups each week outside of class.

Jill Kennedy Tufts, a music therapist who, at times, literally plays patients to their death, told our class at orientation that when she needs comfort after dealing with death, she pulls out her guitar and plays Simon and Garfunkel’s Feelin’ Groovy. From then on, I started every class with that song. It works, too. It’s hard not to feel groovy after listening to that tune.

Finally, interviewing the dying and their families was not a course requirement; crafting a straight policy story was always an option. Students could switch topics at any time if things became too much (none did, although a few contemplated it), or they could receive an extension (this seemed to be the preferred option!).

J-Source: How did you balance encouraging students to finish the story with being sensitive to the emotional demands of reporting on death?

ML: Students developed a deep commitment to their stories and to their interview subjects. They felt a compulsion to get the stories out there. While the process was at times tough, none in the end were willing to exercise the option of not finishing. But this level of commitment requires more than a good story; it requires the opportunity to get it to a real audience. That’s where the CBC comes in; this project likely would not have succeeded to the extent that it did without the partnerships with cbc.ca and their executive, Mary Sheppard. Mary had taught for many years at Ryerson. She understands that student work has a different developmental process than that of professional journalists. She was not put off by some of the rough starts.

AR: As students we knew the deadlines and we knew we had to finish our story. Meredith gave us the opportunity to write on almost any topic we wanted therefore if we felt it was too emotional we could have picked a policy piece or some other topic that wasn’t as emotionally challenging. Meredith was sensitive to our needs. I had told her about how challenging the sessions were and she provided me with the contact information for a chaplain who is used to discussing these matters. Meredith also checked in with me regularly reminding me that there was someone available for me to talk too if I wanted too.

J-Source: There are ethical questions that come with reporting on death, such as: What is the reporter’s responsibility toward oft-vulnerable subjects?

ML: To see a vulnerable person’s story as their most valuable possession; when it is offered to you it must be treated as a gift, and one that can be easily damaged.

The health care providers approached patients and families about participation on the students’ behalf. Getting consent turned out to be a very unambiguous process. Subjects either REALLY wanted to participate as a way of leaving a final statement, or as a way of memorializing a life. Or they REALLY did not want to have anything to do with the project because the dying process is too personal and private and painful and terrifying. And because, it turns out, family dysfunction can shift into high gear around a death.

J-Source: What did you, as a teacher,  learn from the experience?

ML: I often pack the wrong outfits when I travel, and when I teach, I often worry about the wrong things. You just can’t predict what a given situation will require. For example, equal to my concern about potential impact on students was concern that their lack of experience or maturity might result in inappropriate behavior on a palliative care ward or with a patient. They were all incredibly responsible, and it’s hard not to be when you are dealing with the dying.

What I failed to anticipate is how many students would struggle with their professional identity during this project. The only reason I am now aware of this struggle is because the students revealed it in their self-reflection assignments at the end of the course.

The students were concerned about their own emotional responses during interview encounters with dying patients and families. This didn’t surprise me; we had discussed it in class. What did was surprise me is that several had come to believe that demonstrating real emotion in front of a dying subject was a violation of a professional code; that a real journalist is emotionally shut down during interviews. Yet, none of their teachers are from the hard-bitten school of macho journalism (I mean we cry at kitten photos). So, where are the students picking up these messages about professional identity and emotional shut-down?

J-Source: What was the hardest moment, or the moment that sticks with you the most?

ML: A moment that stays with me: listening to the raw audio that Angela Richardson captured from the digital legacy recordings forty-eight year old Sheri Swick made for her family. As Sheri recorded her last thoughts for her nineteen year old son, there were moments so close to unbearable that we chose to delete them from the final piece. But I still hear Sheri’s voice, her agonized keening over leaving her son, and her desperation to provide him with a lifetime of wisdom in the few days she had left.

I don’t know how on Angela found the courage to spend hours in those recording sessions.

AR: I learned a lot about coping with death. I spent a lot of time with Jill Kennedy-Tufts, the music therapist, and Sheri Swick, the palliative care patient. Both taught me that individuals deal with death differently. Not only is the patient coping with the reality of dying but so is their family and everyone can be on different stages of that journey.

The hardest moment for me is also the one that sticks with me the most. During one session Sheri was recording a message for her 19-year-old son and she was crying as she said she loved him. All I wanted to do was reach out and comfort her but I couldn’t. It would interrupt the recording and the flow of thought for the message she was leaving her son and I was not going to do that. But, that moment will be with me forever.

SL: Two things stick out to me. The interview of Paola Rios was very difficult. She cried for a huge portion of the interview and we had only met five minutes before I started filming. When someone is so emotional you want to comfort them, but I had to remember that it was not my job to comfort, I had to tell their story well.

Also, there was an unexpected moment. I decided to ask Dr. Christine Newman, the palliative care Dr. at SickKids, what a good death would be to her. It had almost nothing to do with our interview but I wanted to give it a shot. She gave one of the best answers I have ever heard and it changed the way I would approach my own death. The video of her answer should appear in the series.

J-Source: Anything you’d change for next year’s course?

ML: There will be no dying course next year. After the big CBC rollout of this year’s project, there’s no point in trying to replicate it next year. Depending on the response, however, the project could be revised in the future.

A little bit more about Meredith: Meredith Levine teaches in the Graduate Journalism Program at Western. Prior to arriving at Western in 2006, she co-created and co-taught the curricula for an innovative final semester focused exclusively on issues of professionalism at McMaster’s medical school. She has spent a decade at CBC radio national current affairs as a producer on all the flagship programs, and eventually creating and running the program, “Some of the Best Minds of Our Time”, hosted by Peter Gzowski. She has freelanced as a print journalist, publishing in the New York Times, The Nation, the New Statesman, the Globe and Mail, Chatelaine, and others.

Lauren McKeon