A safe place in which to die
Helena Rocca is organizing a focus group on improvements to end-life-care
His house was his world. He lived here, in the one-and-a-half storey red brick home for some 47 years. When the weather was warm he would eat dinner with his daughter on the front porch.
She lived in the home with her father and cared for him during his last decade of life.
Even when he could no longer remember her name because of dementia he knew his house. Its worn checkered linoleum tile floor. The yellowed kitchen wallpaper patterned with drawings of potted-ivy and baskets of bread.
“He was comfortable here,” said his daughter, Helena Rocca, 61.
A familiar conversation between dad and daughter would unfold something like this: “Whose house is this?” he’d ask. “It’s yours Dad.” He’d hesitate. A deep, contemplative pause always followed by a delighted realization. “What? Really?”
“Yes, really dad.”
Her father’s name is Franciszek Szyszka. He was an immigrant from Poland who escaped to Germany after the Second World War. Everyone called him Frank. His wife, Frieda, lived here too until her death in 2005.
She owned and operated Frieda’s Knit and Sew Shop on Geneva Street, around the corner from St Paul. She died at home. The century-old house has a porch that extends across the entire front where large white pillars stand like architectural exclamation marks. Frank enjoyed sitting on the porch, observing the comings and goings. He enjoyed watching the kids skip by or roll back and forth along the sidewalk on their bikes. All the neighbours knew him. And that gave his daughter peace of mind.
“I had a nice sense of security,” she said. “If he went wandering down the street while I was in the bathroom, someone would find him and bring him home.”
In the fog of dementia, home meant peace. Safety. Independence. Dignity. A place of love and family. Trust. Like his wife, he wanted to die at home too.
That didn’t happen. Frank died this past February in a hospital. A strange bed, in an unfamiliar place. He was 88.
And yet, what troubles her most is not where he died, but the inadequacies of a health system that offered her no choice but to remove him from the only world he knew. He went by ambulance. And when he was at his most vulnerable, she felt like the medical community disregarded her insights into his care.
In her words: “After 10 years of looking after him, I had that taken away from me.”
At the end of this summer, she shared her story, her thoughts, concerns and ideas for change, with human rights lawyer Ryan Fritsch. He is heading up a project of the Law Commission of Ontario — Improving the Last Stages of Life — that will examine how the law shapes the rights, choices and quality of life for people who are dying and for the people who support them.
The project will consider input from everyone involved in the dying process: the patients, their caregivers and other family and friends, health care agencies and professionals, government, and other community organizations.
The goal is to hear from people in order to better identify and recommend law reforms, said Fritch.
He would like to hear from people in Niagara. A date will be set once there is enough interest. “We want to hear about their experiences, the challenges they faced. What are their recommendations to improve the system?” he said.
He hopes to have the consultation phase wrapped up by the end of the year.
The commission is neutral and non-partisan. It examines issues through the lens of law reform – issues identified by people in Ontario. “Where the law might be a little out of step with current practices, a little out of date,” he said.
The end-of-life project started in 2014 and key issues were identified. Among them: equitable care for specific groups (LGBTQ, Indigenous, income, mental health, religion beliefs); end-oflife challenges (safeguards against abuse, consent, decision-making authority over life-sustaining practices, managing planned deaths at home), and resolving disputes.
Many people have also told Fritsch of a need to strengthen legislation for caregiver supports. While the province offers family medical and family caregiver leaves in order to take unpaid time off from work and have their job protected, there needs to be greater flexibility.
“We’ve been hearing people say there needs to be a greater investment and a more flexible system
that recognizes that illness isn’t a linear trajectory,” he said.
“It’s not a start and finish. People often need intermittent support. Varying levels.
“Something that recognizes that palliative care doesn’t just mean last few days or weeks of your life. It can mean a long period of time.”
In general, Rocca wanted her father’s last hours, days, weeks and months to better reflect the spirit of his life. She suspects it’s a wish of many other caregivers.
“He was always in the present,” she said. “He was always happy. He didn’t remember anything. Everything was new.”
Her choice to care for her father at home, a labour of love that progressed to tasks such as bathing, cooking and then to eventually
feeding him, took a toll on her own life.
She called home repeatedly from work one day and was worried because he didn’t answer. When she arrived to check in on him, she found an empty kettle on the stove top, glowing red. The smoke alarms were screaming. “He was outside with a garden hose, completely happy and oblivious.”
She realized she could no longer leave him home alone and quit her job.
“People kept telling me to put him in a home,” she said. “I felt fortunate to stay at home with him.
“And in my estimation, I saved the system quite a bit of money.”
She received 12 hours a month of in-home respite care, plus two hours a week of personal care for her dad. She created a home office and used the time, three hours a week, to work as a psychotherapist. She needed to maintain professional credentials.
Although she tried several times to get palliative care services for her father, she was always told he was not eligible, she said.
It was very difficult to get him out of the house to see a doctor.
And while she disagreed with many parts of his care at the hospital, one moment stands out as an illustration of how little things can make a big difference in endof-life care.
Her father was confused. Scared. But Rocca stayed by his side after he was admitted to the hospital and her voice could still settle him. She left him sleeping, early one morning to go home and get some sleep herself.
She asked that he be allowed to wear his own clothes for comfort. Familiarity in a foreign environment.
She returned later in the morning to find him restrained to his bed with a waist strap. Agitated. And wearing a hospital gown.
Her voice could no longer calm him.
Later on, he managed to wiggle himself sideways, his head over one side of his bed, his legs over the other side, rocking back and forth. He was sedated. She hopes her story will make up a collective narrative for change. One voice of many that will make life better for people at the end stage of their life.
And in a way, a tribute to her dad.
“My dad would have been happy that I did this,” she said.
“For me, it’s like my last gift to my dad.”