Palliative care: Living out your best life
She sits in a lawn chair around a campfire pit, in the morning shade of a row of pencil-straight pine trees.
The large floppy brim of her white sun hat, picked out for her with love by her teenage daughter, curves to frame the shape of her face.
A special hat, for a special woman on a special camping trip.
It’s just past nine o’clock in the morning and her husband, apologizing that he’s still in his pyjama pants, steps out of their camping trailer, flips a final pancake onto his plate and drizzles it with syrup.
Their two dogs are settled under the picnic table in a patch of fresh green grass.
The Cutlers — 52-year-old Karen, Kevin, 54, their 14-year-old daughter, Kristy, and her friend — are camping in the heart of Bissell’s Hideaway, a private campground off Metler Road in north Pelham.
Karen has good memories of camping. Her parents once pulled a pop-up camper trailer to Montreal with five kids and seven dogs. (One of the dogs had puppies along the way.)
Karen lives with a rare cancer in her small intestine. She had surgery to remove the main tumour, but her intestines were covered in what she calls “cancer seeds”.
She started palliative care this spring. She was scared. Her mom died of cancer. So did Kevin’s mom.
“I didn’t think I’d be the one to get the cancer,” says Karen.
“You’d think after having all that you’d get used to it,” says Kevin. “But when it hits this close to home, it’s worse. “It hurts.” Kristy just graduated from Grade 8.
Karen could easily focus on the negative.
The tingling in her fingers and feet that makes it difficult to walk; the aggressive chemo that made her food taste sour; the worried thoughts.
Instead, she chooses more positive distractions. She thinks about the pork schnitzel and asparagus soup at the day hospice program she attends. Karen’s dose of chemotherapy has been lowered and she can once again enjoy food.
She enjoys the poached eggs and grilled cheese sandwiches that Kristy likes to make for her. “She’s very protective of me now,” says Karen. “She wants to be a doctor.” At first it was a family doctor, then a pediatrician. Now there’s talk of being a psychiatrist. “I’m so proud of her,” says Karen.
She thinks of her husband, Kevin. Two CB radio enthusiasts, they met years ago by voice first. Her handle was Munchkin because she’s short. His was Mouse, a contemplation on the size of his ears. They have been married 31 years.
She thinks about her friend that phones every day. “She lets me talk about it,” says Karen. “Sometimes it’s hard to talk to my family.
“I get so much love and support from all these people. I didn’t know I had that before this.”
She thinks about the memories of fun times. Like driving to Niagara-onthe-Lake one day so Kristy could find an illusive unicorn frappuccino at Starbucks. And creating scrapbooks, one of her journey with cancer.
It keeps her busy. Less time to consider the bad stuff. “Sometimes I think about this cancer, if it’s growing,” she says. “It plays a lot on you.”
She hasn’t been camping in two years. Last summer, she was too sick. They are here for a week, courtesy of Dreams to Memories, an organization based in Fort Erie that helps terminally ill parents have a last wish experience with their family, to create memories.
Karen’s palliative care team recommended her. And this week, they are doing their usual home visits in her trailer.
This is how Karen is choosing to live. This is palliative care. And yet, the word on its own scares people.
Cary Nagy, executive director of Hospice Niagara heaves an audible sigh. Most people come into palliative care too late, too close to death, when the real benefits of early emotional, spiritual and physical support – what palliative care is really all about – cannot be appreciated, she said.
The word is misunderstood. Even some doctors can be reluctant to speak it to their patients.
“Palliative care has become associated with there’s no help, there’s no hope and I’m going to die,” said Nagy.
“And there’s nothing anybody else can do for me.”
So they resist. Delay. And finally, eventually turn to palliative care too late, when they have reached a crisis point in their life. Their pain is out of control. They’re less mobile, less able to care for themselves. They’ve lost their appetite and energy. They gone to the hospital because they can’t cope on their own.
Instead, Nagy encourages people not to wait. Think of it as “hoping for the best and planning for the worst” when faced with a life-limiting illness, she says. Be proactive. She’d like to see people referred in the last year of their life, even earlier, instead of in the last days or weeks.
“To live your life to the fullest,” she says.
It’s a misconception that palliative care begins when treatment options are exhausted, said Nagy.
Community teams support people living with a life-limiting illness who are experiencing pain, unmanaged symptoms or needing emotional or spiritual support. They help family members through the illness journey too.
Without early palliative care, patients might have poorer symptom control for a longer time. They might be subjected to prolonged treatment — and many adverse side effects — that may not have expected benefits. The could have more emergency hospital visits and hospitalizations, and be generally unprepared for endof-life choices. Goals for care might seem to change suddenly and cause distress for everyone. And in general, they could experience a poorer quality of life for longer periods of time, said Nagy.
A 2011 report by the Quality Hospice Palliative Care Coalition of Ontario, a group of organizations, universities and research institutions working in the palliative care field, noted that despite the fact that most Canadians will die of an advanced chronic disease, just 16 to 30 per cent will have access to formal palliative care and support. And most of those are cancer patients.
The report —-- Advancing High Quality, High Value Palliative Care in Ontario — warned: This leaves a tremendous gap to fill in providing appropriate services and support for people who need care for advanced chronic illness.
It criticized the current model of palliative care for being “reactive, targeted and disease-focused.” Care, it stated, is delivered by “multiple, siloed individual providers.”
And it painted a vision for transforming palliative care, using words like “proactive, holistic, person and family focused” and appealed for a shift in philosophy: We will focus on improving a person’s quality of life and managing symptoms – not just extending life.
One of the priorities set was to help people access palliative care earlier on in their illness. Sooner, than later. It’s the ideal embraced by Hospice Niagara.
And yet, there are still many pockets of people in Niagara who do not have access to that level of care, says Nagy.
Locally, there are two community palliative care teams — one that covers north St. Catharines and Niagaraon-the-Lake and the other for south Niagara, including Welland, Port Colborne, Wainfleet and Pelham.
The teams include a palliative care physician who either visits the patient in their own home, or advises the person’s own family doctor. There are also nurses, emotional and bereavement support clinicians, volunteers and a clinical navigator who helps to co-ordinate care between the family and community programs.
The community teams support some 450 people or more every year. About 70 per cent of those people are able to die in their own homes, safely, she says.
Nagy is hopeful a palliative care physician will set up in Niagara Falls by the fall, and that they will be able to extend the community program to more people.
At the moment, there are also 10 hospice care beds in Niagara at The Stabler Centre in St. Catharines.
Palliative care nurse practitioner Sue Battersby-Campbell and palliative care physician Dr. Debbie Dooler are both part of the south Niagara team.
“People don’t ask us to save their lives,” says Battersby-Campbell. “It’s not death they fear, it’s the suffering.
“We don’t promise to save their lives. We promise to optimize their condition and minimize their suffering.”
They promise to help people live, until they die.
What that means is different for everyone. It’s often about tweaking medication to reduce pain, or even resolving bowel problems so people can live fully again. Indeed, one woman called the team to report she was able to go to the grocery store for the first time in two years because her bowels were under control.
Another time, a man was able to find joy in gardening again because of medication that helped him breathe and an occupational therapist who gave him strategies to get up and down on his knees safely.
Battersby-Campbell recalls another man whose shortness of breath caused an escalating cycle of anxiety, which effectively made him housebound and sent him to the hospital frequently. At one point, he could only walk from his kitchen chair, four steps out the front door, and back to his bed. The last time he came home from the hospital he thought he would need to go into long-term care.
After tweaking his medication to help him breathe easier, his confidence increased and he was able to leave his home for activities he enjoyed. He has not been hospitalized for the last two years.
A woman who was vomiting continually was directed to Batters byCampbell by a community nurse. After hearing her story, she determined the cause — too much coffee. The woman had been drinking coffee to fight fatigue caused by her illness. “She didn’t want to sleep her life away,” says Battersby-Campbell.
Instead, the woman was prescribed a stimulant medication, in quantities based on the activities she wanted to accomplish in life. “It gave her energy. She travelled. She lived. She was never home,” says Battersby-Campbell.
She was out of the house until two days before she died.
Dr. Maria Becker, a psycho-spiritual clinician on the team, remembers a woman in her 50s who was struggling with an aggressive cancer. She faced the prospect of more treatments that caused her severe side effects.
After lengthy, heartfelt discussions where she was given the freedom to consider many options, the woman and her husband decided to stop all treatments.
It was as if she had been waiting for “permission” to stop, says Dooler. When she was allowed to speak what was in her heart, her anxiety decreased and instead of hope for a cure, her hope was to be comfortable.
The woman’s decision prompted her daughter and boyfriend to become engaged. They celebrated an engagement party in the woman’s bedroom.
“She died at home a few days after the party,” says Becker.
She remembers another woman who had cancer and had been crying for so many days, it alarmed her family. When they talked, when she asked about the cause of her tears, the woman replied simply: “The word.”
“You mean the word death?” asked Becker. “Yes,” said the woman. That simple acknowledgement led into an honest conversation about dying, one the woman had been longing to have.
“When you are able to talk about things, the words lose their emotional power,” says Becker.
Palliative care gives people back the control the disease has stolen from them, says Dooler. “Often, all people hear is that there’s nothing more we can do for you.”
Instead, Battersby-Campbell says to people: “Let’s talk about what we can do.
“They’re not putting energy into fighting death, they’re putting energy into embracing what is left of life,” she says.
“And that’s what palliative care is.”
And yet, people come to community palliative care on average 40 days before they die, says Batters by Campbell. And that’s too late to achieve all the benefits.
On this day, Karen sits around the campfire under a robin-blue sky highlighted with white clouds.
She has plans. She’ ll ride her scooter down the gravel lane way to the pool, where she’ll watch the kids swim and maybe dip her feet into the blue water. There’s a magic show tonight and BINGO tomorrow.
Karen is happy. She is surrounded by everything and everyone she needs in life. And in front of her, are possibilities, not limitations.
“It makes me want to live more,” she says. “It makes my dreams come true. “I gotta fight to be with these guys. And I’m gonna fight for as long as I can.”