This week’s guest author (full disclosure) is my wife, Natalie Parry. Natalie works in North America’s largest palliative care centre. She’s passionate about palliative care, and here she explains where that passion was born and how it was nurtured.
by Natalie Parry
It’s not uncommon, when I meet people for the first time and tell them I work in palliative care, for them to respond, “Oh, that must be sad”, and then walk away to avoid the taboo topics of death and dying. Which is strange to me. We’re all going to die. It’s a normal, natural part of the fabric of life. As normal, in fact, as birth. We age, our bodies decline, eventually they fail altogether. We die. We’re not shy about sharing our anecdotes on pregnancy and our labour horror stories (maybe this is why I have never had children of my own.) but we treat the topic of aging and dying as if it were a disease that we can somehow cure by heroic measures.
I forgive people for withdrawing when I start talking about my work. Death and dying certainly wasn’t a hot topic when I was growing up.
My first experience with death was when I was six, seven, or perhaps eight. We lived in Guelph, where my parents had settled after emigrating from the UK in 1964. Consequently, the rest of my family: grandparents, aunts, uncles and cousins, were all the other side of an ocean away.
One day, when my parents were out, and my older sister Ingrid was babysitting my brother and me, the phone rang. Ingrid answered, annoyed that someone should call during The Partridge Family. I continued to play with my Barbie dolls. It wasn’t long before I heard the receiver click back in its cradle. It was Nan Geary, our Dad’s Mum. Granddad Geary had died. Ingrid left the room, and I went back to my Barbie dolls.
Some time later, Mum walked through the front door. Leaving Ken and Barbie in a warm embrace, I dashed upstairs, threw my arms around her legs and started to cry. She dropped her bags and knelt down beside me, asked me what was wrong. Between sobs, I explained that Granddad Geary had died. Concern, mixed with puzzlement, was etched on her face. She asked me why I was so upset. I had never met the man.
And she was right, I never had. He was Nan’s third husband, and we had yet to make it over to England to meet him. I remember feeling confused. I thought you were supposed to cry when someone died. People always cried on TV. Realizing it wasn’t mandatory, I went back downstairs to resume Ken and Barbie’s date. I don’t recall ever talking about Granddad Geary’s death again.
So it makes sense to me that people don’t know what to say when I tell them I work in palliative care. We’re not socialized around the subject. It confuses us, embarrasses us, makes us squirm inside a little.
When I do get the opportunity to engage with people about working at a Palliative Care Centre (or when they are unable to escape) I explain that it isn’t a sad place to work at all. Far from it. It’s uplifting and provides daily reminders of how precious and short life is. We laugh a lot. We also cry from time to time when a patient who we get close to dies. It’s one of the most rewarding jobs I have ever had.
So, why palliative care? What got me here? The pat answer would be Dr. Larry Librach, and a snowstorm. I met Larry through my work with the Canadian Cancer Society, and would often bump into him at conferences. But it was the snowstorm that threw us together. We were both at a meeting in Ottawa, and the rumour was there was a storm brewing. Larry pulled me aside and told me we had to get out now, or we’d be stuck in Ottawa. I didn’t need telling twice. We shared a taxi to the airport and sat together on the flight back to Toronto. During the flight Larry told me about a position that had opened up at the Temmy Latner Centre (the palliative care centre Larry co-founded). He said I’d be a perfect fit. I was looking for a new challenge, so I applied.
When the news started to spread amongst my professional network that I was going to work with Larry Librach there was a lot of awe, and hushed voices. Larry was a legend in the palliative care community in Canada.
But it wasn’t Larry who first sparked my passion for palliative care. It was two vastly different death experiences — my Grandfather’s (my mum’s dad) and my own dad.
Granddad Cocum survived some hair-raising experiences in North Africa in the Second World War. He was a sapper — a combatant engineer whose job it is to build bridges, clear roads, generally prepare a path through war-torn territory for the troops that follow. One day, building a bridge somewhere in Europe, he was called away to take a break. His friend took his place. Minutes later the bridge was blown up, killing the friend who had just relived him. On another occasion an enemy hand grenade fell at his feet, rolled up to the toe of his boots but failed to explode. He made it through those close calls, but, years after the war was over the conflict still ended up killing him.
Granddad was diagnosed with mesothelioma, an aggressive cancer that affects the membrane that lines most of our organs. It most commonly invades the lungs, which is where Granddad’s cancer struck. His doctors believed that his exposure to asbestos during the war was likely the cause.
We planned to visit him in England later that year (1996), but my Aunt Sue called my mum to urge her to come earlier. Granddad was deteriorating faster than expected. He was imminently dying. If we wanted to have quality time with him Aunt Sue said, we should come soon. I was twenty-eight at the time, and working at Sunnybrook Hospital on a breast cancer information exchange project.
Mum left a few days later. I followed within two weeks.
I had many preconceived notions of what to expect when I arrived at Nan and Granddad’s, mostly from Hollywood’s portrayal of death, as I had never been around a terminally ill person before. What I didn’t know when I first walked up their drive, that I was going to experience palliative care for the first time; palliative care at its best.
Despite his terminal diagnosis, Granddad was cared for at home. The only time he needed to go to hospital was to drain the incessant fluid build-up on his lungs. By the time I arrived, a nurse was visiting twice a day to make sure that he was comfortable. But she didn’t focus solely on Granddad, she also checked on Nan to ensure that she was coping. After the first couple of days, I realized that she was also keen to know how my mum and I were dealing with Granddad’s dying. I realized Granddad wasn’t her patient, the entire family was.
Everyday she arrived, she brought a new piece of equipment to improve Granddad’s quality of life — a walker one day, a ring pillow another. She was like a magician, always pulling things out of her sleeve just when Granddad needed them.
She also had an arsenal of practical advice. Granddad had lost his appetite and stopped eating. Now I know this is common among people in their last days of life. She told us to give him a Guinness, because after all, Guinness is good for you, at least according to the ads.
One evening we split a can of Guinness together as we sat in the living room watching TV. He was always chuffed that a girl drank beer, especially in pints. It embarrassed Nan every time we were at the pub, but Granddad always had a twinkle in his eye when he put a pint of bitter in front of me.
My grandparents kept their beer in the pantry, not the fridge, but the can was cold nevertheless, being March. We both had a small glass and carefully shared the beer between us.
Granddad sat in his habitual armchair. I sat cross-legged on the floor beside him, toasted on one side by the gas fire, cold on the other because of the draftiness of English houses. In pride of place on the mantelpiece was a picture of him that the local newspaper had taken: Granddad with his medals and the maps he and his comrades used to push back German forces on VE day in 1944.
It was my first Guinness, and though I didn’t know it at the time, the last beer I would ever drink with him. He died the next day.
The nutty, malty smell of Guinness, its bittersweet taste on my tongue and in my mouth still sometimes takes me back to Granddad’s living room.
The next day, the nurse arrived mid-morning. Granddad was still in bed. As I walked by the bedroom, I heard him tell her he was done. The two weeks before I arrived, Mum said that he kept asking when I was due to arrive. I realized he was waiting for me, and now that we’d had one last beer together, he was ready to die.
Granddad never got out of bed that day. After the nurse gave him his pain medications, he never woke up. Between me, Mum, Nan and Aunt Sue, we popped our heads in regularly to see if he was okay.
In the evening he started to make a gurgling sound in the back of his throat. We were worried, nervous that he was choking or in distress. We called the doctor, and he came to see Granddad. When he realized what was distressing us he explained what the death rattle is, what causes it. He told us it was nothing to worry about. Granddad wasn’t in distress and was not choking. A little later we called him out again. Granddad didn’t appear to be breathing. We couldn’t find a pulse. We were sure he was dead. He wasn’t. Between the Canadian girl and the English women, our apologies were profuse and extensive. “We’re so sorry we called you out,” we said. So when, a little later, Granddad seemed to stop breathing again, you can imagine how we felt. We couldn’t call him out again, could we? In the end we did, and he came, uncomplaining and helpful as ever, to pronounce Granddad dead.
After the doctor had pronounced him, Nan went and got some of her paperbacks to lodge under Granddad’s chin, because she didn’t like his mouth being open, and it wouldn’t stay closed. The three of us, me, Mum and Aunt Sue, collapsed, helpless, giggling.
Granddad died in his own bed. When, emotionally exhausted, we all decided to turn in, Nan assumed she would go and lie beside him. We wouldn’t let her. It seemed to creepy to us to spend the night next to a corpse. She ended up sleeping in Aunt Sue’s bed and Aunt Sue slept on the couch. I feel a little guilt about it now. At the time it seemed wrong, almost unnatural, but now I wonder. I think I understand Nan’s impulse to send one more night next to the man who she’d spent the vast majority of her adult life with.
And then there was my Dad’s death. He was in his mid-to-late fifties when a mysterious illness first struck, but it was a while before it was diagnosed. When it was eventually diagnosed the verdict was Non-Hodgkin’s Lymphoma. We all joked that only Dad would get a cancer with the acronym NHL, being the tireless sports fan he was. He certainly scored with the care team he had at the local hospital. The combination of oncologist, chemo nurses and Dad’s positive spirit put his cancer into remission.
It wasn’t long before it came back again. And went into remission again. But the third time was not a charm. It came back more aggressively and spread to other organs.
By this time, his local care team felt he would be better cared for at the nearest cancer centre. They may have been wrong.
In hindsight, his new oncologist was one of those oncologists that I hear our palliative care doctors talk about — one that was not going to give up on his patient. On the surface, this seems exactly what you would want from your oncologist, but when someone has a life-limiting illness the time comes when the doctor needs to realize there are no treatment options left. There is no hope for a cure. That’s when the focus of care should shift, should be refocused on the patient’s comfort and quality of life for the time that’s left. The focus should shift to palliative care.
My dad’s new oncologist was determined to cure my dad, not to fail him. Yet in my eyes, he did fail him. He never once offered my dad offered palliative care. Instead he offered him treatment after treatment. And once those dried up, he was offered a clinical trial. We were told later the trial would have likely killed him.
When dad was going through chemo, I went home to visit every weekend, to give both my parents a break. My mum and I would go to the mall for a couple of hours, giving her the chance to get out of the house for awhile, and allowing my dad some time to do his own thing. After dinner on Sunday I headed back to Toronto. It became a regular routine.
But one Sunday, which proved to be the last Sunday before he died, the routine was broken. As I was saying goodbye, Dad grabbed my hand. “Thank you for everything,” he said. “I love you.”
Now, my family is English, and love is a four-letter word., We never used the l-word, so it took me off guard. I put it down to some of the confusion he had been experiencing as a side-effect of his medications. I laughed it off. Looking back now, it seems clear Dad knew he was dying. But not once did his care team tell him or us.
The next day, his confusion got worse. Mum and Ingrid rushed him to the cancer centre. The doctor explained that the calcium levels in his blood were causing it. He then started offering a list of treatments they could try. My mother’s index finger is legendary in my family. It has been known to stop traffic, and to strike fear into the hearts of recalcitrant Cuban waiters. Waving this finger at him, Mum cornered the oncologist and demanded to know how much time dad had left. Mum called me that night to tell me what the doctor had said. Three to six-weeks. Dad died two days later in an acute care hospital.
Clearly Mum and Dad knew that dad was dying. But his care team didn’t, or at least failed to acknowledge it. As I write this I find I’m still angry that Dad died without receiving palliative care. And sadly, the services were available to him right where he was being treated, but his oncologist did not want to fail my dad. But he did. Dad could have suffered less. We could have said our goodbyes. We could have experienced what we did when my Granddad died.
What difference would it have made? What could palliative care have done that his care team did not?
One incident, towards the end of Dad’s long illness, sticks in my mind still. He was obviously weak and failing but still trying to cling on to his last shreds of independence and dignity. He still took himself off the to toilet when he needed to go. True, my mother had to help him up, when he was finished, but that much he could still do himself.
But, inevitably, the time came when he could do absolutely nothing to help her lift him. He was a dead weight. She had to call me to come and help. I can barely imagine how humiliated he must have felt to have his wife and daughter struggle like this to lift him off the toilet. Even with both of us lifting we couldn’t budge him. After a long struggle he was able to muster enough energy to help us lift him clear.
If he’d received palliative care I doubt this incident would have happened. A palliative care doctor would have coordinated Dad’s care, and arranged for an occupational therapist to come into my parents’ home to make it easier to cope as he weakened. The equipment, and if necessary the physical aid (in the form of a personal support worker) would have been there to help.
People wonder how it’s possible to work in palliative care and walk every day shadowed by death. And it’s true that at times physicians, nurses, even volunteers, can become too involved, and be thrown into the maelstrom of emotions themselves. It’s something we’re constantly aware of: the need for us to look after ourselves, for physicians and staff to get the support they need.
But for the most part it’s not the constant presence of death that is on our minds. It’s the privilege our patients extend to us in allowing us to be part of this most intimate and human of journeys.
Yes, death is a palliative care professional’s normal, but it’s also everyman’s normal when it comes down to it. Our hope is that we can help change attitudes and behaviours around dying and death. Our hope is that, through the work begun by Larry and his colleagues, who pioneered palliative care in Canada, we all become more comfortable with the contemplation of our own mortality, and treat death as an integral and natural part of life.
Then perhaps, people will stop walking away at parties when I tell them what I do for a living.
About the author:
Natalie Parry is senior manager, quality improvement and strategic initiatives at the Temmy Latner Centre for Palliative Care. She has no literary pretensions or aspirations, on the basis that one writer in the family is enough. Since she refuses to allow herself to be photographed I’ve appended a photo of my niece’s pug, Betty Boo, to represent Natalie’s continuing (and very extensive) dog envy.