Dying a good death
It was some 30 years ago that Dr. Brian Kerley, then a new family doctor in St. Catharines, started working shifts in the emergency department at the old Hotel Dieu Hospital on Ontario Street.
At that time, 1985, the hospital had just opened a new oncology clinic.
Before that, the closest treatment centre for people living with cancer was the Henderson General Hospital in Hamilton, now the Juravinski. The clinic was a welcome relief for people, an advancement in care that allowed them to receive chemotherapy in their own community, closer to home.
It wasn’t long before Kerley and the late Dr. Heime Geffen were troubled by the growing number of cancer patients showing up in the ER with uncontrolled pain.
He had received some instruction in medical school about palliative care but he largely felt illequipped to give people the comfort they were needing. They were in immense physical pain, constipated, nauseated and vomiting, and also enduring a deep emotional and spiritual agony.
“People were dying with unrelieved pain,” he says. “There was suffering. You’d see people suffering.”
At the time, palliative care wasn’t well integrated into cancer care, he says. When active treatment was no longer an option, when a cure was no longer possible, there were no palliative care physicians to tend to a person’s physical, emotional and spiritual needs. No one to offer quality palliative end-oflife care.
It wasn’t until 1993 when three St. Catharines nurses, distressed by the circumstances under which people were dying in the community, gave life to Hospice Niagara by establishing a visiting volunteer program to provide care, support and dignity to people who were at the end of their lives.
Three years later, in 1996, a specialized 11-bed palliative care ward opened at the Dieu – under Kerley’s leadership.
The goal was to manage a person’s pain and other symptoms and get them back home.
Then in 2007, Hospice Niagara opened its 10-bed residential hospital, The Stabler Centre in St. Catharines. Kerley has been its medical director since the start.
A year later, McNally House Hospice opened in Grimsby to provide six beds for people living with a terminal illness in Grimsby, Lincoln and West Lincoln.
But back when Kerley was in the ER, there was none of that. And oncology patients were showing up on his doorstep, in unmanageable pain.
As a doctor, indeed as a human being, he needed to do something more. As a medical resident, he had met Dr. Elizabeth Latimer at the Hamilton General. She was a year ahead of him. Latimer became passionate about palliative care and Kerley passionate about learning from her.
Latimer, who died in 2012, is now considered a Canadian pioneer in the field of palliative care medicine. She was the first palliative care physician at the Henderson General.
What he learned from her and others to follow was “simple stuff ” that had a huge impact on people’s lives. How to resolve bowel problems. Relieve vomiting. And the biggest revelation, albeit not without controversy, that at or near the end of someone’s life there really is no maximum dose of morphine and other opioids.
It all came as a welcome realization: “People don’t need to suffer with pain.”
These days, Kerley is the teacher. As a physician with the Niagara North Family Health Team in St. Catharines and medical director at The Stabler Centre, he divides his practice between family medicine and palliative care.
He sees residents at the centre who are in their last days of life. And he sees people as outpatients, offering consultations.
A good death is a journey made with dignity, he says.
One where people are comfortable, cared for and safe. In many cases, surrounded by people who love them. It begins with pain and symptom management – physical pain is eased, people can breathe, their bowels work, and nausea and vomiting is controlled.
People hold many misconceptions about death, he says. That it will be painful, a struggle to breathe, that they will choke or suffocate. Open conversations are encouraged.
“If asked, most people who are dying want to talk about it,” he says. They want to talk about their fears. About details such as their care, place of death, funeral, will. All that.
“But many physicians are notoriously, historically reluctant to have those conversations,” he says.
“People need to be listened to. They need to be able to tell their story.”
When Kerley meets a person, he often prompts them: “Tell me about yourself.”
It’s about understanding the person, beyond the illness.
“What’s your journey been like? Not just your illness journey, but your life journey.
“What do I need to know about you, to maximize the quality of your last days. “It’s whole person care.” He is guided by many palliative role models. One of them is Dr. Harvey Chochinov who pioneered Dignity Therapy to address the reason’s behind a dying patient’s emotional distress. Patients can record meaningful aspects of their lives to leave something behind with their loved ones.
Often people will find solace in reviewing their life. “How will the planet be a different place because you were in it?” says Kerley.
“People need to know their life had meaning.”
Even at the end of life, there is still time to live.
At the centre, residents have been able to have their thoughts and memories written or recorded by video or audio. Their legacy story told.
There has been a wedding, a hospice resident was married at the centre. A couple was able to celebrate their wedding anniversary in a therapy tub with a glass of champagne. Another family hosted a barbeque on Mother’s Day in honour of their wife and mother, and invited families of other residents to attend.
Musicians have listened to their favourite music. An accomplished artist wanted to be surrounded by his artwork when he died.
Indeed, whenever Kerley instructs a group of final-year medical students about palliative care, he begins with the video, Dying for Care, produced in partnership with Quality End-of-Life Care Coalition of Canada. It explores the attitudes about death and dying in the health care system and how it can impact a person’s end-of-life experience.
One doctor shares a story of feeling less-than-adequate, many years ago, when faced with a man suffering from immense pain due to metastatic colon cancer. He refused to increase the man’s dose of morphine because he didn’t want him to become addicted.
The man stood up and began to cry.
He told the doctor: “I hope one day, as physicians, you can better look after us.” And he walked out of the office. For Kerley, palliative care is a calling. It’s not about death, but about helping people to live until they die. It’s about relieving pain and suffering. About human interactions, however short.
“It’s the essence of being a physician,” he says.
“It’s the job I feel I was called to do,” he says. “To help people to be as comfortable and alert as they can be to complete the work they need to complete at the end of their life.”
It’s often a time when he sees people at their best. Their strength of character. The relationships with family. The focus they bring to life.
“It’s a privilege to be invited in to be a part of that.”