The Death Cruise Director

I first contacted today’s guest author, Julie Devaney, because I saw a Facebook post about a talk she was giving on patient centric care. It seemed she shared a passion for the subject with Larry Librach. I approached her to ask if she would like to read my book. Perhaps write a blurb for it? She would and did. And she also offered up this, her own meditations on the topic.

by Julie Devaney

The perfect death scene looks like this: there are blowing curtains in bright, wide windows. Outside there are trees, birds singing, beautiful flowers growing. The dying person is lying in a bed with luscious cushions and sheets. Surrounded by family, friends, or perhaps just the one most precious person, he or she says something heart-wrenchingly intimate, or something witty and hilarious, or something brilliant and profound.

As I watch this play out in subtly different ways on television and film, I sit on my couch and weep. I plan my own death. Perhaps I will have my implausibly comfortable and pretty sickbed pushed outside so I can die with blossom trees shading me and those assembled around me. I will spontaneously say something touching, funny, and smart. I will refuse to accept the standard script in which I must choose just one. It will not be messy, it will not be bleak. It will be the ideal mix of sad and sweet, dark and hopeful. In this way, I can control the uncontrollable. In this way, television has taught me, death can be tolerated.*

I used to say that if I had lived in Walkerton during the E-Coli crisis in 2000 I would have been the first to die. It was two years before I was diagnosed with an inflammatory bowel disease (later confirmed as Crohn’s), but through my teens and childhood I had frequently experienced my body as weak, sickly, and often pained. I was jovial enough about the observation. It was just that I could so easily imagine the scenario where I would die suddenly and mysteriously and then two weeks later other people would start getting sick. The outbreak would be discovered and someone would say, “Oh, that’s what killed Julie last month.”

devaneyNow, in 2016, as I prepare for my fifth bowel operation (likely sometime this year) and try out medications for my new autoimmune diagnosis (Ankylosing Spondilitis, also referred to as AS) I appreciate the fact that my survival to the age of 36 is very likely attributable to the clean water of an urban industrialized centre and access to excellent healthcare. Somewhere or sometime else I might not have made it this far. At the same time as this knowledge is disconcerting it also fills me with cheerful defiance. I am here, for now. I may as well have some fun.

I once read that the name Julie is best suited to aerobics instructors and cruise directors. And just because my athletic credits start and end with that time I ran for a bus, and I suspect I would hate cruises, it doesn’t mean that there is no truth here. These are both “peppy” professions, and I like to think I can bring a little bit of pep to otherwise bleak realities.

This past fall I gave a keynote to a large healthcare audience. It was the first big talk I had given on patient centric care for two years. Frankly, I had become demoralized after spending years speaking publicly and delivering hundreds of workshops, and not seeing any perceptible change in my own vulnerable moments of healthcare crises. To be specific: shortly before I started cancelling bookings I had a six week period which began with me being lauded in a crowded boardroom for my “important message” about listening to and respecting patients and ended with me being explicitly shamed and disbelieved while in agonizing pain in the emergency department of the same hospital. That hospitalization led to my fourth major operation after which I took some time off from using my trauma as an educational resource.

But this talk had gone well and ended with a conversation with a hospital CEO about dying good deaths. He was recommending a book on the subject that he’d thought of while I’d been speaking. I told him that death is a subject I’m looking to do more work around. That I’m bored of illness metaphors that focus exclusively on battles, surviving and prevailing. “Survival” in my experience isn’t a straightforward victory. It is the daily reality of living as the broken body that might have died.

“Well, you survived,” is a thoroughly dismissive sentiment in my experience. It speaks to a fundamental misapprehension that survival would only ever be a relief rather than another day of pained and terrified exhaustion. Façades of health and stability provide a comforting black-and-white framework that benefits temporarily-healthy people by marginalizing the messy experiences those of us who are chronically ill or actively dying. Being more at ease with the tenuous, mortal middle-ground would improve patient care at every level.

I checked my phone and saw a message from Phil. About his book, Conversations on Dying. The timing could not have been more weird or ideal. Dr. Larry Librach was a figure I was familiar with and I remembered reading both about his work and his passing. Now, here was an opportunity to hear his own words about his own death. I began reading on my phone in a cab later that afternoon. I shared both Phil and Larry’s frustrations with how much personal trauma and suffering could have been limited during so many deaths if palliative care had been provided. I shared their analysis that on a broader, social level, our collective avoidance of dealing directly with issues around death has brought us to the precipice of crisis.

Phil’s description of the ways in which Larry modelled death as both a teacher and a fellow human being was extremely moving. His frank sharing of emotion—sadness, fear, the bittersweet “lasts”— was perfectly framed by all the practical decisions Larry made and reassessed on daily basis. The joy and beauty that opened up in that space in the final months where denial was set aside reminded me that this is the point. Not survival, but honest and engaged presence. But even with all of Larry’s wisdom and experience, this loveliness was not and could not be full picture. Not when we are dealing with a healthcare system that is so consuming and unwieldy. When Larry described being “jailed” by his hospital wristband I was taken back to that moment in 2013 when I found myself in that emergency room. Neither Larry as a doctor nor me as a public, patient advocate could entirely overcome the very real structural constraints on self-advocacy and patient-directed care all of the time.

My latest personal foray into the system had its climax two months ago when I received the AS diagnosis. For over a decade it had just been Crohn’s disease, but now the at-times-debilitating pain in my back and hips was pointing to another pathology. It was a cold February morning and the sun was shining brightly at Bathurst station. A woman in her eighties stopped to ask me where to get on the streetcar. I was absorbed in the music streaming through my earbuds and my worries about the MRI results I was on my way to receive, so I didn’t notice her white cane as I told her she was in the right place and could just wait with me. Another woman from further back in the line approached and I realized that my new companion had jumped the queue. But instead of a complaining, the other woman addressed only me with her disconcertingly wide smile.

“Isn’t she so brave?”

I was really confused because as much as the TTC during rush hour requires all of us to have nerves of steel I wasn’t sure how to answer or what exactly she was referring to.

I reluctantly turned my music off and joined the conversation. “What do you mean?”

She turned to my new friend, who I will call Alice, and asked, very slowly and loudly, “When did you lose your vision?”

I had heard about this kind of aggressive and intrusive benevolence from friends with visible disabilities but I had never witnessed or experienced it firsthand before. Alice looked annoyed but answered that her vision had been slowly deteriorating over the past few years and she was in fact on her way to an appointment for her condition at Toronto Western. I told Alice that I had a rheumatology appointment at Toronto Western so we could travel together if she wanted.

“Do you live alone?” Our unwelcome interlocutor persisted.

“Yes,” Alice answered. “Since my husband died last year.”

“Oh! Wow! You’re soooo independent!” said the other woman. I pointedly stepped between them as I said, “I’m sorry to hear that,” to Alice.

Alice began addressing only me at this point. “Well he had been in a nursing home for a year before that, so I was used to being in the apartment alone.”

When I think back to the next moment, I’m not sure what happened to the other woman. I know she faded back into the line at some point because I can’t picture her anymore. The only image I have is Alice starting look as though her mind were very far from the streetcar platform and then speaking in such a way that her sentences seemed to begin before the last one had ended.

“I used to visit him every day but they didn’t tell me he had stopped eating. And then they called to tell me he was in the hospital so I went to the hospital. I don’t think anyone told me he was dying but I thought he might be dying so I asked if I could stay and they let me. And so I stayed overnight and he died and I’m still not sure what he died of. I don’t think anyone told me. But that’s when they told me that he hadn’t eaten for three days. And I don’t know what they were giving him to eat but if they had told me I would have brought him egg salad. He would always eat egg salad.”

I remembered the description of Larry’s last days from Phil’s book when I responded. I explained to her what Larry had told Phil. Her husband’s body was preparing for death. It was completely natural that he didn’t want to eat. I also told her that someone should have explained this to her. And that being there that last night was absolutely the best thing she could have done. He was definitely ready to die.

“Really?” she asked. “He wouldn’t have eaten?”

“Not even egg salad,” I said.

She relaxed visibly.

By the time we got on the streetcar we were bantering like old friends. She wanted to be situated somewhere where she would hear her stop being called out and be able to get off easily. I navigated us both to such a place on the packed streetcar and told her, “I’m getting off at Nassau Street with you.”

“But that’s not where your appointment is,” she argued. “You’ll have to walk an extra block.”

“I think I can handle it,” I said, my eye roll audible in my tone.

“Oh you’re so cheeky!” she yelled as she gave me a friendly backhand on the arm holding our mutual pole.

It would be easy to write off my 9 AM conversation about dying at Bathurst station as an anomaly, but these things happen with enough frequency that I wonder if I do carry a bit of a “Julie the cruise director” vibe about death and people pick up on it and stop me to ask about the available amenities.

“Emergency exits to your right and left. Cocktails at seven. Black tie optional. Elvis Presley tribute act at 8:30, on the other side of that bright light.”

We tend to see life and death as clear-cut extremes. But I feel as though I’ve spent a lot of years dying without the death part. And most days I just don’t feel so rage-y against the dying of the light anymore. I don’t have a terminal diagnosis and I don’t claim to understand what that’s like. But at the same time, I have known and heard from enough people with similar diagnoses who have since died that I have had to take the question of death head on. In one way or another the light is dying in all of us but for now I can only manage to muster a mild, “meh,” about it.

My rage is more squarely focused on the things we can change.

And this is where Larry’s perspective has been most valuable to me. As much as all of our experiences are distinct and laden with their own complications and dramas, the basic human problems are the same. We need to be able to talk about death. To create conditions where people can make choices about the terms with which we will engage the healthcare system and the world. Not just in our final months, but through every period of illness and uncertainty. The strategy will be most effective when more people are willing and able to share their most private and messy experiences without shame or stigma. When we can meet each other not with fear and pity, but with solidarity. We need great expertise to manage the medical realities of a good death but we need open hearts to enact it.

*First two paragraphs are excerpted from my essay in MESS: The Hospital Anthology (Tightrope Books: 2014), coedited with David Molenhuis.

About the author:

JulieDevaneyJulie Devaney is a patient activist living in Toronto. She is the author of My Leaky Body (Goose Lane Editions: 2012) and co-editor of MESS: The Hospital Anthology (Tightrope Books: 2014).  My Leaky Body was one of Quill and Quire’s Top Five Non-fiction books of 2012.  Julie was named a Woman Health Hero by Best Health Magazine in 2011 and has been profiled on CBC Radio’s White Coat, Black Art and The Current, in Chatelaine and the Toronto Star. Her writing has appeared in The Globe and Mail, Toronto Life and numerous anthologies. Julie has presented at medical schools, nursing conferences and theatres throughout Canada and in the US and the UK using participatory techniques with patients and professionals to formulate strategies for change and innovation in healthcare. Her work at the University Health Network in Toronto has transformed real patient stories into staff training.