Spending big chunks of free time with the terminally ill—even watching and waiting as they pass—might not sound like the ideal way to fill a day, but these hospice volunteers do it repeatedly (and enjoy it)

By Ross Freake

The room is so quiet I can almost hear my heart beat. Late afternoon light leaks through the big window and falls across the bed where a woman is dying. Her breath comes in jagged gulps as she reaches for something or someone I can’t see.

When she stirs, I stroke her arm, speak softly to her, hold the space. I am a witness to her life. I am there so she doesn’t die alone. Through the open door, I hear Boel Leftrukk at the Kelowna Hospice House nursing station calling the woman’s son in Ontario.

Endings—An Orientation
Why am I here? It started in another room, 1960s institutional with a touch of modern—fluorescent lights hang from the high, black ceiling with exposed heating ducts and pipes; it’s always too warm or too cold. The chairs are yellow plastic and pink fabric. Five long, brown tables are shaped into an open-ended square. The room is interchangeable with thousands of others, except for the Scotties tissue boxes, one on each table.

Fifteen people, three male, sit around those tables learning about death—and a lot about life—in a hospice course taught by two instructors from the Central Okanagan Hospice Association (COHA).

Interspersed with the information about death and dying—visiting a funeral home, listening to social workers, nurses, lawyer and pastor—are personal stories about life in the palliative trenches at Kelowna General Hospital (KGH), Hospice House and private homes; about sitting vigil as people take their last breaths; and about counselling families after. The stories are heart wrenching and inspiring, how the terminally ill met death with dignity and, in the process, transformed the people who helped them on their journey. As the stories and tears flow, when the emotion is as raw as an open wound, tissues are ripped from the boxes to cover the sniffles and repressed sobs.

Like many people working with the dying, a personal tragedy that tore her life apart brought Bev MacLeod to hospice. COHA’s director of bereavement and one of the course instructors, Bev had retired from 30 years in pediatric social work and was on her second career as an interior designer when her daughter, Jan, took her life. “That was the most traumatic and unsettling event of my life. After three or four months of recovery, I wanted to take the gifts of my grief and share the reality that pain is real, that grief is real, but there is a journey and it can be a positive one to full recovery. I have walked that road.”

As one tissue box is emptied, another slides across the table. The newbies will need more as Shirley tells her stories.

Shirley Jensen, a small woman, radiates strength and resolve and a serenity that comes from 40 years of holding hands with the dying as they left this world. She wanted to be a nurse but didn’t have the chance growing up on a farm in Depression-era Saskatchewan or later when she became a farmer’s wife. When she moved to Kelowna in 1966, she worked with the terminally ill before taking the first hospice-training course in 1981. She has been on call 24 hours a day, seven days a week ever since.

“I’ve seen so many go through the dying process I couldn’t begin to count them and I will keep doing it until they sit with me. Anybody who does vigil has to accept their own destiny, that they’re going to die. You can’t sit with somebody if you can’t accept that you’re going to end up that way, too.

“Just as someone is going, I usually say, ‘have a nice journey.’ It’s such a peaceful time and such a rewarding time to know that you really help another family.”

A Home Away
Kelowna is a good place to die. The quality of care the hospice association and hospice house provides makes it a wonderful jumping off place into the unknown—that great adventure that many choose not to think about until life taps them on the shoulder and whispers, “Are you ready?”

Most aren’t, but the association and hospice house help them get ready or at least plow the path they have to walk. There are only two requirements for the help and support they receive—stop all medical treatment to fight the disease and have a do-not-resuscitate order. Hospice provides care, not cure.

The $3-million Kelowna Hospice House opened to great fanfare in September 2008, with justification. It feels like a cathedral—there’s a sense of spirituality, that this is a place where life and death meet. As I walk beneath the glass roof over the entrance, the outside comes with me. A meandering stone walk set in the wooden floor is an extension of the river rocks in the waterfall just outside the entrance and Mill Creek running along the jewel of a garden.

The architects envisioned the central space—with two 12-bedroom “houses” on each side—as a landscaped street with trees and a creek; they wanted to create warmth and fill the soaring space with light.

 “Once we came over (from Cottonwoods, staff) were awestruck, dumb-founded, going around with their mouths hanging open. Wow! Wow!” says Anne O’Keefe, manager of hospice palliative care services, spreading her arms and her grin, wide. “We came from that tiny space over there to this. It’s like moving from a one-bedroom apartment to a mansion. There’s so much light and it’s so beautiful.

“A lot of things make for a good death, however there is lots of literature and discussion around the need to have an environment as home-like as possible. That’s what we try to do: to make it as relaxing and calming as humanly possible; to take away the ‘medicalization’ of death.”

Everyone at Hospice House, whether volunteers, support staff, social workers or nurses, has that goal. “We try to discourage that’s-not-my-job attitude,” O’Keefe says.

“Everybody takes part in caring for the patients and, by extension, the families and each other. This is one of the best places I’ve ever worked where that support is given by all members of the team.”

Comforting Lessons
Volunteers play a big role, which is why the 15 of us are in the house of the setting sun as Jean Bembenek gives us the whyfors and whatfors of being a hospice worker.

Always read the book, the convener of volunteers tells us. The book, the volunteers’ bible (?actually, there are two, one for each house) is in the nook of a room behind the nursing station. It lists the patients, next of kin, doctors and diseases along with notes from every volunteer who has visited. It also rates, on a scale of zero to 100, each patient’s medical condition so volunteers have some idea of what to expect when they walk into the room. Like a good Boy Scout leader, Bembenek tells us to be prepared. “You don’t walk into a room without knowing whether it’s a he or she, old or young, dying or still sitting up in a chair, or if there are problems with family.”

Don’t get attached to the patients, she cautions. She probably knows she’s wasting her breath because many volunteers check the newspaper obits every day to see who they will not see during their next shift. And on the shelf above the volunteer bible is a card with the name of each person who died in the last week, Bembenek’s reminder to herself to send condolences to the families.

She tells us to cater to the patients’ families as well, which is why six of us are taking a follow-up class in bereavement counselling. “Talk with them, sit with them, have a cup of coffee with them and give them the feeling that their loved one is in a home, not in a hospital.

“I know it isn’t everybody’s cup of tea, to be able to see sick people and see them dying. Sometimes it is stressful even for the ones who love it and are good at it. The pay is bad, but the rewards are great,” she says with a chuckle. “My goodness, this is a gift.”

As she shows us around a patient’s room—large-screen TV, large windows, private bathroom, plenty of space around the bed for nurses and family—I feel a cool breeze on the back of my neck and wonder if it’s a chill from standing in the house of death. As I turn, hesitantly, a swoosh of green shoots across the room and lands on the shoulder of new volunteer Leona Smith. PJ is welcoming us to his kingdom.

The 14-year-old peach-faced lovebird, who stayed after his owner departed, is the centre of attention no matter where he is: ripping up paper, soaring through the hallways, sitting on someone’s head, or in his cage in one of the two dining rooms. Like most homes, the kitchen/dining room is the centre of the action, a place where the coffee is always hot and ice cream always cold. Anything patients want—breakfast, lunch, dinner or snack—is delivered to the large, heavy, wooden table.

On that table, PJ entertains the patients, workers, volunteers and visitors. He rips paper, any kind of paper, as precisely as a kindergarten teacher with a ruler, and leaves his creations in front of his ohhing-and-awing admirers. No one is immune to his charm or his antics. But this integral part of the Hospice House team almost got left behind at Cottonwoods because some people don’t like birds.

“We made the decision, PJ’s not coming,” O’Keefe says. “But, oh, my God, the next thing I know, I’ve got this letter of protest, even signed by people who are scared of the bird. It pointed out how much the patients and the families enjoyed him. It’s just one more thing that is a sign of life, that we have a living environment and that focus is not on your death, but how you’re going to live until you die.

“That’s why we encourage people to bring their pets; bring all things you like to do. I’ll be bringing wine when I come. We had a woman who had a pet rabbit in a cage in her room. We try really hard to do whatever will make people happy. If that means having a pet rabbit in her room, we just do it.”

That’s why the usual bureaucratic practices, protocols and guidelines are broken often and with impunity to ensure every patient is comfortable. Hospice House offers total care that is almost impossible to deliver in hospitals. “It’s personal care, real patient contact, dealing with the family,” says 29-year nursing veteran Diane Blatchford as she snuggles into a large chair while taking a break in the homey staff lunchroom.

“In some areas of acute care you might not have that full spectrum of contact,” she says. “It’s special to help people on that journey and it can make a difference, but it’s difficult no matter how you do it. It does require a certain philosophical outlook. It’s going to happen anyway, we might as well face it head on and do what needs to be done, although we’re not all that philosophical about it in the trenches.”

“Death to me is not sad; it’s the way it is,” says clinical practice co-ordinator Dianne Stockwell, leaning into the conversation. “Everybody dies. It’s not that we care less; in fact, in some ways we care more. I think we grow into death. Nurses in palliative care love life more than anyone I have ever seen. They’re funnier, happier, have a better sense of humour and I think they embrace it every day, but I don’t think you’re aware you do that.”

Bembenek says Hospice House is a wonderful place not only for the patients and families, but the people who work there, especially the nurses. At Cottonwoods, there were four patients to a room, and in their final moments, nurses wheeled them into private rooms. At Hospice House, patients die in their own rooms, with their families or a hospice volunteer holding the space. “The nursing staff is unbelievable. It is a hard job. Every patient who comes in here, you know they’re coming in to die. And the nurse’s training is to heal people.”

Most nurses are wonderful and caring, but palliative nurses take it to a new level. They stop in their mad dash from one place to another to hug and kiss a patient in the hallway.

Nearer the Moment
While I sit with the dying woman, nurse Leftrukk fusses over her, fixes her blankets, adjusts her pillow, talks to her, caresses her arm, kisses her on the forehead. She’s precise as she wets a swab to moisten the patient’s mouth and lips, dabs it on a cloth so it isn’t too wet, giving me instructions as she works.

Shining Examples
Julie Robbins is also a great mentor for new volunteers who wander the wide hallways, checking their notes, not quite sure what to do as they muster the courage to make small talk with a dying person. What do you say to someone who might be dead tomorrow? “What’s your sign?” That might still work in a bar, but not here.

Robbins has been volunteering for more than two years—three times a week, more if she’s needed. She has a hug and a smile for everyone, and fresh-baked muffins and cookies for patients. She is often the last person they see, or hear. The woman who was petrified of death now knows it intimately and has been there to meet it with about 100 Hospice House patients. The first patient she ever visited died 45 minutes into her first shift.

“When I looked after my parents I was so scared, but I overcame that fear when I took hospice training. I didn’t realize how many people were alone in the world. It’s nice to help them go on their journey. I’m not religious, but I have become spiritual over this. It’s amazing how they’ve changed my life. I’ve looked after the poor and the extremely rich and they’re all going to end up in the same place. Every person I’ve sat with has a different way of accepting it and dying. No one should die alone.”

Volunteer Don Embury has similar sentiments. He runs a grief class at Willow Park Church, facilitated the last COHA bereavement counselling class and volunteers at Hospice House once a week. He knows grief well. In the two years following the death of his wife, he lost his mother, aunt and uncle, mother-in-law, brother and his dog.

“It’s a privilege and an honour to be part of (patients’) lives. Each time I’m involved, I walk away with a bit of a smile and feel rewarded for the very little I did. I don’t feel I give a lot, but it helps touch their lives because there are a lot of people who have nobody. We can draw on those different feelings and emotions on a loss in situations like this; to be patient and listen, even if they don’t speak; just a presence sometimes is all some of them need; to know that they matter, that you would take 10 minutes of your time and just sit. That’s huge to them.”

Many people don’t, however, want to talk about death. Hospice workers often don’t talk about what they do in social situations knowing the conversation will die a quick death, as if pretending will change an outcome more certain than higher taxes.

Diana Barker, COHA director of palliative services, and the second hospice course instructor, tries to eradicate the fear and the stigma about a process as natural as birth.

“When we’re expecting a baby, we do all this preparation, we buy this, research that and at the end of life I would like to see it as carefully planned, as carefully orchestrated. Awareness of death gives people a chance to prepare for it, to do the things they keep putting off so they don’t spend their last moments regretting what they didn’t do.

“If there are any lessons I’ve learned, it’s just do it. I’d like to see people embrace death the way our patients do, so that they can then embrace life.”

It took Lyn Parsons a few years to learn that lesson after she lost her sight late in life and lost her independence. She identifies with what terminal patients go through—denial, anger, bargaining, depression and acceptance.

“I went though the whole gamut of loss. It’s insignificant to what some people go through, but I do understand their loss of independence. It was a good year-and-a-half to two years before I stopped feeling sorry for myself and questioning why me.”

She fills the room with her presence, moving like the Sundance Kid shooting coins out of the air when he and his sidekick, Butch Cassidy, were hiding out in Bolivia. As Parsons talks to our class and jitterbugs around the room, her sidekick and guide dog, Cinder, lies at her feet.

Parsons is at Hospice House four or five times a week, but still does a shift every Wednesday at Kelowna General Hospital. Hospice House is spacious and serene. KGH is life and death in the raw but, with Cinder’s help, Parsons flows through the chaos.

“This is not a feel-good thing we do,” she says, speaking with her hands as much as her mouth. “But you can walk out of a room and feel so good. I’ve come out of a room and gone, wow! Because we’ve connected. But generally it’s not for the faint of heart. You can’t feel sorry for the patient; you have to go in and share life and share yourself. You can’t be turned away because their face is bloated, their head bald, their body distorted from treatment. You have to see the essence of the person rather than the outward appearance.”

Not About Me
I remember her words when I walk into someone’s room. And when the conversation lags and the silence hangs heavy, I also remember Embury’s advice: just listen; leave the insecurity, doubt, fear and discomfort at the door; this is about the dying person in that room.

That’s a lesson everyone who works with hospice learns. Leftrukk, the nurse showing me how to moisten the patient’s mouth, learned it a long time ago, but time has not lessened her compassion. When the phone rings across the hallway at the nursing station, she grabs it, hurries back and holds it to the woman’s ear while her son talks to her from Toronto. A familiar, loving voice will guide her home.

When I read her obituary a few days later, there’s a sadness and sense of loss and, for a moment, I’m back in that room with her, enshrouded in a stillness and silence so deep I can hear my heart beat.

Volunteering
While Kelowna Hospice House is the biggest in the Okanagan, it wasn’t first—Penticton and Vernon set the standard.

The Kelowna Hospice House is modelled on the Moog and Friends Hospice House in Penticton that opened in 1998. The North Okanagan Hospice House in Vernon is the result of a grassroots community effort. In 1979, a group started providing social, emotional and spiritual care for people who had fallen through the gaps in the health-care system.

Hospices are a community of people helping individuals and families face terminal illness and bereavement. The emphasis is on care, not cure.

There are two kinds of hospice volunteers: auxiliary and client.

Auxiliary volunteers work in the office, hospice house reception, fundraising or in the garden and usually get three hours of training.

Client volunteers work with dying patients. While criteria vary among the three Okanagan centres, the core criteria are essentially the same. Kelowna client volunteers do 40 hours of training, those in Vernon and Penticton do 30.

Volunteers are asked to commit about four hours per week for a year.
 
If you’re interested:

North Okanagan Hospice Society
250.503.1800
www.nohs.ca

Central Okanagan Hospice Association
250.763.5511
www.kelownahospice.com

Penticton & District Hospice Society
250.492.9071