This journey began a few years ago with a chance encounter at a Christmas party. Among the people sitting at my table was a doctor from the palliative care unit at the Foothills Hospital. I commented that he must have an interesting job. He knew that I’m a playwright and said the same thing about me. By the end of the evening we had arranged for me to visit the unit to have a look around for myself. Seems like a strange outcome for a Christmas party, but you never know what’s waiting around the corner.
Looking back, what surprises me is my willingness to jump in and learn more about something most of us don’t really like to think about. I don’t like hospitals all that much, or doctors, or the questions they ask, or the tests they want to do on me. Like many men of my age, I prefer not to think about it… in this case, “it” being a loaded term referring to health, loss of health, onset of disease (probably a grisly one) and, finally, death. Ironically, at the same time, because I have reached a certain age, I can easily convince myself that every little pain I feel, every sore throat I wake up with, is the beginning of the end.
Death actually presented itself to me at an early age—11 to be precise—when my older brother died in a car accident. The loss was immense and has no doubt informed much of my character as I have grown older. Obviously, the longer we live, the more family and friends we lose along the way. And yet I suppose that because I was exposed to death at such an early age, it doesn’t scare me and I have become quite dispassionate about the matter.
Over the years, I have written about death extensively in my dramatic work; at least five of my plays deal directly with the topic, and one of them is even titled A Guide to Mourning. Artists are always looking for new fields to explore, and the field of death—because of its universality and mystery held together in one event—is a particularly rich field to stick our shovels into.
And so, on a cold morning a few weeks into the new year I got myself over to the Foothills and made my way up to the fourth floor of the Tom Baker Cancer Centre. My friend met me and I was soon in a room with members of the palliative care team, which was much larger and more comprehensive than I would have imagined, including, among others, physicians, residents, nurses, pharmacists, therapists, social workers and spiritual counsellors.
What I hadn’t realized was just how welcome I would be—not just as a new friend of one of the lead doctors on the unit, but as a writer with a reputation for exploring difficult issues, often ones people simply don’t want to talk about. In this case, the big one, I suppose. Not just death in general, but specifically: What does the process of dying look like in our culture these days? What might we be in for as we near the end of our journey? At this point, I might as well step out of my narrative to remind readers that we do, in fact, die. It’s the only thing we know for sure about our journey—that it’s going to end.
I think as a culture we do an admirable job of staying in denial of this eventuality. I was talking to a man the other day who was speculating on his own demise, which he put some 50 years in the future. He was in his 50s. I suppose as long as we can put an event at least five decades from now, we clearly don’t have to deal with it. As it was, I didn’t have the heart to tell him that he was, by any meaningful calculation, well beyond middle age. Who am I to burst his bubble?
A variation of this, which I indulge in almost daily, is to read the obituaries in the paper, checking out the birthdates of the dearly departed, comparing them to my own. Most days I successfully perpetuate my delusion of immortality, confirming that only people older than myself are dying and that I am certainly too young to die. But of course the older we get, the more likely we will read about people our age or even younger (or even very much younger) passing away. In the face of such evidence, we might do well to consider and come to grips with the implications.
To put this all in perspective: The average age of the patients in this particular palliative care unit is 51 years old. I find that rather sobering, if not chilling. We reach a certain point when the experience and expected outcome of hospital visits change. When you’re younger, you expect to get better and get out. When you find yourself in the hospital and are told you’re not going to get better, and face the reality of your imminent demise, then a hospital visit is a much different thing. And it’s easier and comforting to think this only happens to older people; not so easy or comforting to get your head around the number 51.
If we are collectively in denial of the reality of death in the abstract, it can only be worse when it comes to considering the specifics. And so, for a writer to walk into a room full of professionals who work in this area day in, day out, was thought to be a wonderful thing, a great step forward in public relations, as it were. You have to understand that when these people tell others what they do for a living, it can be a bit of a conversation ender.
My reputation was a double-edged sword, however. As much as the staff welcomed my help to bring their work out into the open, when it came to visiting patients—well, not everyone wants a writer hanging around witnessing what is, after all, a very private event.
As I sat among the staff that first morning, on the one hand I knew nothing about palliative care and on the other hand I realized I’m a bit of an expert. Listening to them talking about their work I was flooded with a remembrance of an event that had happened some 17 years earlier: the death of my father in the palliative care ward at the Pasqua Hospital in Regina. I shared that experience with them, for I think at its heart it has to do with the essence of palliation, which means dying in as good a way as possible. It is a story of someone who lived a good life and then, at the end, did a very good job of dying.
“Your own death, it comes as a surprise. No matter how much time you have to get used to the idea.”
We had our usual Sunday evening phone call. I was in Calgary, and my dad and mom were back in Regina. On this particular evening, my dad complained about a sore arm, telling me he had arranged to go for a massage the next day. A few days later, my brother called to tell me the masseuse had not liked something about my dad’s sore arm and had suggested he see a doctor. He had done so, and was subsequently admitted to the hospital for tests. On Thursday my brother called to say things weren’t looking all that good as the result of these tests. On Friday he called and his message was unequivocal: Get here, now.
I got there, driving through a prairie snowstorm to do so. My dad held on until I arrived, and then, son of an Englishman that he was, shook my hand and promptly slipped into a coma. A few days later, I sat in his room with him in the palliative care ward. I had no idea if he had any awareness of what was going on around him, so I read him the hockey stories from the night before. I was holding his hand, the first and last time that ever happened. As I was doing so, he let out one last rattling breath and then he was gone. In death as in so many aspects of life, my dad was efficient and orderly.
The people from the ward came in just at that moment. When they found out I was alright, they did a few things with my dad, removing equipment, arranging him, as it were, the way I thought we should leave him until my mother had a chance to spend some final moments with him. I suggested staff meet her in the hallway before she got to the room, to let her know what had happened. All of this took place with great reassurance and professionalism, and I would have to say that as far as possible, the staff made a potentially terrible situation really as good as it could possibly have been.
So, looking around that room in Calgary all those years later, I had a good sense of what palliative care workers do, what they are all about. They make dying as good an experience as they possibly can, for all involved. I know that isn’t a very technical explanation, but I don’t think anyone on the unit would dispute its veracity.
You might die on a lonely stretch of highway some night when you hit black ice. You might have a very sudden and very fatal heart attack while riding your bike along the river. Or you might be lucky enough to have the dream death ahead of you, the one I hope is in store for me: you may have a beautiful day doing all of your favourite things and go to bed with a big smile on your face and simply not wake up. It happens, I guess, but only to a few.
But should you be diagnosed with a disease (most likely cancer), which is all the more common these days, and should that disease prove fatal, with no hope of a cure whatsoever, then you will be left in a situation where the rest of your life will be spent dealing with the process of dying. If you have complications, you might find yourself in palliative care with a team to help with any or all of these.
What might those complications be? Pain, too much of it to deal with, and so you might be there on account of pain management. You may have psychological difficulty—after all, death is an enormous thing to get your head around. Even in these times of vague spirituality, we still contemplate what lies beyond death, not just the patient but the family as well. Legal or financial or family issues can complicate matters. In any of these cases, a staff person on the unit can help look after things.
As we all know, given Alberta’s ongoing crisis with healthcare funding, long hospital stays are not encouraged, and the best outcome as far as the people who work on the unit are concerned is that once your complications have been dealt with, you go to a hospice or return home, and with the support of community professionals and family get on with the matter at hand, which is to say dying. To put this into perspective, the unit has 29 beds. In 2009 about 250 patients were admitted and the average stay was 12 days. One in every four patients died on the unit.
On the day of my first visit, one of the doctors invited me to spend some time with him, to get a sense of a day in the life. This doctor is a specialist in pain management. He is also a father and a slightly off-centre jazz musician. All in all, I would say that the hospital, and the people who work there, seem much more human and even fun than in the old days. Obviously, the staff take their work very seriously, but the mood on the unit is anything but grim.
This doctor was on his way to consult with a patient in another ward and so we walked through the labyrinth of construction at the Foothills, even getting lost a few times along the way. We eventually found his patient, who had come in with one issue but been found to have something else, much more serious. A complication. The doctor spent a very long time talking to this patient so he could design an effective pain management program.
“The only pain we can’t do anything about it the pain of someone who realizes that they haven’t really lived.”
On our way back to the unit, the doctor explained to me that many different pain medications can be used to alleviate suffering and help keep the patient as comfortable as possible. But then he added, “There’s only one kind of pain we can’t do anything about… and that’s the pain of someone who ends up on our unit with no chance of recovery, and who realizes they haven’t really lived their life… that’s a pain that no one can take away from them.”
Carpe diem, indeed.
For the last few months, I’ve been spending time on the unit a little, getting to know some of the staff, and when possible visiting with the patients. I plan on doing this on an ongoing basis. I may have thought there was a book of poems or even a play in this experience, but now I’m not so sure. I’d like to think my motivation for these visits is more altruistic. If we see our lives in terms of narrative, it would be very sad indeed not to share that with someone. If I can be an audience for someone’s story, then I feel my time and energy are being well spent.
I was visiting a patient last week, and knowing it would be my last visit before I wrote this piece, I asked if he would like me to share anything. He’s a lovely man, and I know it may sound cliché, but I find visiting him a very humbling experience. He has such courage and even humour in the face of what is obviously a serious situation.
“It comes as a surprise,” he said. “Your own death, it comes as a surprise. No matter how much time you have to get used to the idea, it still comes as a surprise.” He talked about how the instinct to survive must surely be embedded in our DNA, and that the knowledge of our imminent death goes contrary to that instinct. In his mind, no matter how well you understand the situation intellectually, no matter how clearly your doctors lay it out for you, it always comes as a surprise.
Maybe that in part explains our denial of death and our tendency not to think about it. But when the time does come, as it will for us all, I take some comfort in knowing there are intelligent and compassionate people who will make the last part of our journey as pleasant as humanly possible.
Eugene Stickland was Alberta Theatre Projects’ playwright in residence for 10 years and a Calgary Herald arts columnist for five.