by Tilda Shalof
I would challenge that. It’s a good phrase, especially in the hospital where there are many bugaboos – like “burnout” – and sacred cows – like dreary waiting rooms or bad hospital food – things that have always been done a certain way but don’t even make sense any more. Yet, so often, creativity and initiative are stifled in the big corporate entities that hospitals have become.
I would challenge that. I’m going to keep that phrase handy in my tool kit.
“You know what you should see?” Jackie says to me in the parking lot, as we’re about to get into our cars. “VON’s hospice. You’ll love it. It’s not far from here.”
“It’s on my agenda,” I tell her. In fact, it’s my next stop.
CHERRY BLOSSOMS FOR EVERLASTING LIFE
THIS IS A PLACE WHERE PEOPLE COME TO DIE.
That’s all I can think about as I drive an hour from pad Thai with Jackie in London to this grand, stately mansion called Sakura House, in Woodstock, Ontario. It’s the last stop on this leg of my itinerary, and I’ll drive home later this afternoon.
I turn off the highway onto a long circular driveway, park the car, and walk to the front door of the hospice. On one side of this imposing, but elegant, building is a grove of well-groomed topiary trees. At the other side, tucked discreetly toward the back, is a long ramp sloping down from the back entrance, probably for deliveries and where, I presume, the bodies are taken out, transferred to the hearse, then to the funeral parlour.
On the website they say that a hospice is a place to die with dignity, peace, and comfort.
Where I work, no one is allowed to die – at least not without a monumental, apocalyptic battle. A hospital death is a hidden, whispered, subversive act; it is a sign of our failure to do what we’ve implicitly promised.
Nurse Manager Helen Vink waits for me in the airy, spacious front foyer.
“This is the place where I give the first hugs,” she says, enveloping me in one.
Helen takes me on a tour, first through the library, then to a sitting room with a Persian rug, a grand piano, and comfortable couches. “We held a wedding here, a day before the mother died.” Another room is circular with light-yellow walls and more couches and easy chairs. There is a large bay window and other windows all around.
“One young man with cancer liked to spend his last days in here because of these windows,” Helen says. “When it snowed, he said he imagined he was inside a snow globe.”
We peek in an empty room, all ready for the next person who will die here. There is a sofa bed, recliner, mini fridge, microwave, a TV, and, on the bed, a colourful, handmade quilt. Each room leads to a patio that overlooks the grounds, with ornamental grasses, a memorial flower garden that blooms in the spring, and a fountain with a pond in which gold and black Koi swim under a thin layer of ice and snow.
Helen and the hospice manager, Robin Kish, tell me about the hospice. The house itself, and its Japanese gardens and estate of seven acres, belonged to Toyota Canada, who sold it for two dollars to VON. In three years, there have been three hundred patients and three hundred deaths. Here, family members can come and go as they please, even stay overnight and sleep on the sofa bed or recliners. Pets are allowed, too. In Japanese, sakura means cherry blossom, which is a symbol for everlasting life. In the spring there are real flowers, but now, in winter, vases are filled with ceramic or glass ones. Helen explains that the cherry blossom is a reminder of the shifting seasons, the fleeting nature of human existence, and the impermanence of life.
This would be a nice place to live, I think, as strange as that sounds. It’s comfortable and tastefully furnished. It feels inviting and cozy. In the spacious country kitchen I smell fresh coffee and muffins baking in the oven.
What does the ICU smell like? Don’t ask. Hopefully, you don’t know.
People say it’s a relief when they come here, but making the decision can be difficult. Helen tells of a woman with terminal cancer who sat outside in a taxi with the meter running for hours. “She couldn’t bring herself to enter because she believed the door swings only one way. We assured her the door can swing the other way, too. She needed to know that it wasn’t necessarily the last stop. She had family but didn’t tell them she was here. She brought all of her possessions here – there wasn’t much – and wouldn’t talk to any of us. She died in a week, just as she wanted – to slip away quietly.”
Helen calls that a “good death” because the woman died on her own terms. I have seen many deaths, but few I’d call “good.” In the hospital, death can be complicated. So often we feel what we’re really treating is the family’s fear of death. Many deaths are fraught with family conflict and heated emotions. I have witnessed some horrific deaths, so many, in fact, that I have been ruined for knowing what a good death looks like. I’m pleased that Helen is willing to describe it to me.
“People who are dying tell us that they want no rushing around, no pain, to have comfort and maximal mental clarity for as long as possible, and, of course, to have their family and friends close by.” She points out that there are no ventilators here, or cardiac monitors, or dialysis machines. There are no oxygen saturation probes, no blood work, and no IVs.
I’ve always considered these things essential. Come to think of it, I don’t think I’ve ever witnessed the death of a person who didn’t have an IV. How does one die without equipment, I wonder?
“These technologies do not provide comfort or dignity, which is our focus here,” Helen reminds me.
“What about urinary catheters?”
“Only for comfort.”
“Feeding tubes?”
“Not here. Feeding tubes make no sense in a hospice. The body does not require food as it is shutting down. We may give small amounts of water or food for comfort. It is more symbolic than anything, but may be meaningful to the family.”
Helen says they explain to the family what is happening at each step of the process. “The person’s irregular breathing, the gurgling, gasping sounds, may be distressing to the family, but they’re a normal part of dying. We medicate for pain or discomfort with the goal of maximizing alertness as a patient progresses toward death.”
“ ‘Progresses toward death’ is what we call ‘worsening’ or ‘declining,’ ” I say ruefully. “So, no ‘circling the drain?’ I take it? No ‘crumping,’ or ‘flat-lining’?” I cringe at saying these coarse terms in this refined and dignified context, but it’s true, we commonly use them in the hospital.
“We’re death-friendly here. We don’t say ‘gone on,’ ‘passed,’ or ‘not with us anymore.’ ”
Yet even here, not everyone is in a state of acceptance. Helen tells me of a father who was dying and his wife, who wouldn’t tell their children. The daughter at university didn’t know her father was in a hospice. “ ‘Tell the kids,’ he pleaded, ‘I want to see them one last time,’ but she wouldn’t because she didn’t believe he was dying. ‘You’ll see, he’ll walk out of here. He’ll be your first to recover,’ she said. He asked me to call his kids and I did. His wife was furious, but I had no qualms about it because I was fulfilling the patient’s wishes. That’s what guides me.”
In another situation, a mother knew she was dying but her daughter disagreed with her. The hospice team felt the mother was hanging on for her daughter. “She was a skeleton, you could see every bone, and one day her resps dropped down to four or five a minute. The daughter kept shaking her mother to make her breathe. ‘You’ll make it to Christmas, Mom,’ she told her, and believed it, too. Unfortunately, her mother died before Thanksgiving.”
I have a sudden ICU flashback, to a brutal, violent death.
“My husband will not die, do you hear me? Death is not an option,” the wife screamed at us, as her husband was exsanguinating. Blood was gushing out of his mouth in spurts with each thrust of CPR. “Don’t let this happen!” she yelled at us. “Do something!” But we were already doing everything. Later, as we cleaned and then wrapped his dead body, we lamented, “He
went out in a hail of bullets, a ‘blaze of glory,’ ” befitting a man that the wife described as a “fighter to the end, a man who never gives up.”
Most patients say their last wish is to go home. Families want to provide that, but I don’t think they are always aware of what they’re getting into. Do they know how messy and physically gruelling it is to care for someone who is dying? Can they afford around-the-clock nursing care to supplement home care hours and their own labour? Sometimes the plan is to die at home, but at some point they panic and bring the patient to the emergency department. But a hospice seems like the perfect compromise between home and the hospital. Here, a family can help with caregiving if they wish, or just focus on saying goodbye. Sometimes it can be a long and exhausting vigil, but at least in this home-like place, they can rest near their loved one.
“Here, death decides the pace and it’s usually gradual, incremental,” Helen says. “It’s like lights going out in an apartment building, slowly, one by one. That’s how our bodies shut down.”
It sounds so gentle the way she describes it. I once heard a doctor ask a patient, “Do you want to die this week or next week?” In the ICU, we can manipulate such things – and we do.
Without knowing it, I chose a good day to visit. There’s a potluck Christmas lunch for staff and volunteers and I’m invited to join in the deliciously retro meal, a delightful blast from the past – a repast of Swedish meatballs, devilled eggs, a Jell-O-and-marshmallow mould, sliced ham, soft rolls with butter, and gingerbread cake. After lunch, the nurses gather in the front sitting room to ask my impressions of the hospice.
“It’s a beautiful place and it must be very satisfying to work here and get to deliver what you promise – comfort and dignity. In the hospital, people are often disappointed in us when we can’t deliver what they expected.” They nod in recognition because, like most of us, they started out as hospital nurses. “What’s it like to work here?” I ask them.
“You wouldn’t do this work if you didn’t love it,” one nurse says.
Other responses are called out as they come to mind.
“Most people don’t want to hear about what I do for a living. I tell them I’m a Walmart greeter and they leave me alone.”
“Giving someone the gift of a beautiful death balances the sadness we may feel.”
“Once we got a standing ovation at a funeral from the family of a man who died with us.”
“The sadness gets to me at times, but we check in with each other to see how we’re coping.”
“You don’t realize the weight you carry until you leave for awhile and feel it lift.”
“Working here has taught me not to sweat the small stuff. It’s made me realize that we don’t live forever, that our time here is short.”
Nursing teaches you that truth, if nothing else.
“We need to give death the respect and celebration we give lavishly to births, birthdays, and anniversaries,” Helen says as the others nod in agreement. “As a society, we need to become involved in deciding how, when, and where we want to die. There should be midwives for death as there are for birth. Maybe this generation will do for death what our generation did for birth.” Helen is hopefully wistful. “Just as we de-medicalized labour and delivery, made hospitals more sensitive to families, and brought birthing home, we need to bring death home.
“Six weeks after a death, we call to find out how the family is doing and offer any bereavement support we can,” Helen continues. “They are invited to a memorial service that is held for each person who dies at Sakura House. It is organized by the volunteers. Some find it difficult to come back, but when they do they are glad they did.”
There’s a final ritual that is carried out for each person that dies here, and Helen describes it to me. “The nurses perform the final care, give the last bath. Family members participate if they wish. The person is covered with a quilt and taken out in a procession. The staff line up and stand at attention, like an honour guard, as the person is carried out, their face uncovered. This person who came in the front door now goes out the front door. There is no hiding or shame. We give the family a handmade silk cherry blossom that our volunteers make, and say our goodbyes.”
If I told anyone I spent the day at a hospice talking about death, I’m sure they’d look at me in concern. Oh, how sad that must have been. And I’d say, no, it wasn’t. It was joyful.
I wonder if they’d believe me.
360 DEGREES
EVEN ON THIS BITTERLY COLD February morning, the grey and black husky, one blue eye, and one green eye – a dog built for winter – is shivering. He huddles into the crook of the arm of a young boy in a hoodie and ripped jeans who’s sitting cross-legged on the street corner shaking a paper cup, coins jingling, in my direction.
I’m not some rich lady! This scarf is polyester – a Hermès knock-off. This necklace is drugstore bling.
Nevertheless.
I open my wallet. Thinking of Wayne and feeling guilty for all that I have and for all that he – and this ragamuffin boy sitting on the sidewalk in front of me – do not, I hand him a twenty-dollar bill. He looks astonished, then embarrassed. Perhaps my largesse makes him feel like he’s a particularly needy case.
“I can’t take that.” He thrusts it back at me. “It’s way too much.”
“Well, I can’t break it. Buy something nice for you and your dog.”
“Don’t worry about us. We have a place to stay.” He looks away. Have I offended him?
Here’s a good one: “Knock-knock jokes. Do homeless people get them?”
What do you call a home visit to a person who lives on the street? A homeless visit.
As I walk along the street toward the nurse practitioner (NP) clinic, a woman dismounts from her bicycle to ask me politely for any spare change, explaining, “It’s the end of the month.”
I seem to have walked straight into skid row. And where is the sign that says, “Word up, folks. Rich city lady has arrived in town!”
Despite my harmless jocularity, I have a soft spot – even an affinity – for homeless people, even more so after meeting Wayne and hearing his story. But my hospital training has toughened me and I know how to steel myself and put up a wall when I need to. “Sorry,” I tell her regretfully, “I’m plumb out of cash.” I keep walking.
“My husband is on disability,” she calls out after me. “He has anxiety and depression.”
“Don’t we all?”
Yes, we all have stress, but those of us who have a home, a family, an education, a well-paying job, and a lot of nice things have lots of soft, safe places to fall if we need to. Oh, I’ve been guilty of all the usual unkind thoughts, stood in silent judgement: Giving money to panhandlers is futile.… It only encourages them.… It’s a drop in the bucket.… They’ll use it for drink or drugs.… Can’t they clean themselves up? … Why don’t they get a job? And I’ve done worse: I have pretended not to see and looked away.
Be nice, I remind and reprimand myself. I want to be nice, but in the few minutes it takes me to walk from my car to the VON 360 Degree Nurse Practitioner – Led Clinic, located in the downtown shopping mall of the sleepy town of Peterborough in South Central Ontario, two more people approach me for a handout. I rush along through the mall to get to the clinic.
The mall itself feels like a community centre. It houses the offices of other charities like United Way, Red Cross, and, of course, VON. It’s a hub for the downtrodden, the drunk or high, those who do not have anywhere else to get away from the cold, and all those who have fallen on bad times – they all seem to have gravitated here.
My eye is drawn to a tall, skinny girl who looks about sixteen. She has one hand on a baby stroller and the other holds a few quarters as she stands in front of the “Hurricane Simulator” amusement ride, pondering whether to give it a whirl (with her infant in her arms or by herself?). I sigh, thinking about how much wherewithal and maturity is required to care for a baby, raise a child. Does she have w
hat it takes or at least, the supports to help her?
Now, a nurse is not supposed to have biases or prejudices; being “non-judgemental” is practically a job requirement. Our patients – our clients – whose lives are in our trust, are at their most vulnerable. Think of the scary implications if we ever let any of our personal opinions affect our care. However, I know at times they do. I don’t think mine ever have – I hope not – but over all of these years that I’ve been a nurse, I can’t say for certain that they haven’t.
A confession of a more trivial faux pas: I have developed a mild girl crush on Nurse Practitioner Kathryn Roka, the clinical director of the 360 Clinic. We’ve only talked on the phone, but I have visited her personal website to learn more about her. From what I can tell, she’s brilliant and beautiful, fun-loving – and, best of all, she’s a nurse-author like me. She’s just published her first book, Aubrey. It’s part one in an action-packed fantasy trilogy featuring a courageous protagonist who is, surprise, a nurse practitioner.
In person, Kathryn is pretty and petite – and a dynamo. A mother, a marathon runner, she is also disarmingly modest – despite the fact that she advertises her book wherever she drives. Her Volkswagen Rabbit is shrink-wrapped, bumper to bumper, in the colourful book cover image of Aubrey. “I did it to prevent my son from borrowing the car,” she says with a hearty belly laugh, surprising from someone so petite and elegant.
We sit in her tiny, cramped office, jam-packed with stacks of books and journals. (No paper patient charts here; all the medical records are electronic.) The walls are crowded with family photographs and a hand-painted sign that says, “People who say it can’t be done should not interrupt those who are doing it.” Kathryn has given me a tour of this immaculate, modern clinic, and now we take a few minutes to chat before her first client arrives. To be honest, I don’t really know what an NP does, so Kathryn explains.
“Prevention, teaching, and counselling. We work independently and can diagnose, prescribe, treat, make a referral, admit or discharge to a hospital.”