Social worker Kim Barrow (left) and registered dietitian Edith Stokes (right) are part of a large integrated team that helped cancer patient Sharon Black (centre) through her journey.
At Sunnybrook,teams focus on treating a whole person and their family, not just a disease
Sharon Black led a life on the go.
She ran a home business, along with her husband. They travelled around the United States several times a year, teaching painting and selling painting patterns at conventions. It was a 24-7 kind of job.
All that came to a halt when Sharon got a stunning diagnosis in January 2013: She had endometrial cancer.
"When I heard that word, it's like I knew I'd be starting a different life. It was the fear of the unknown; the fear of having my life upset," says Sharon, 59. "It was devastating."
Experts examined a tissue sample after her hysterectomy at another hospital and recommended she go to Sunnybrook's Odette Cancer Centre for more treatment.
In December 2013, she began a gruelling course of chemotherapy and radiation. The treatment wreaked havoc on her body. Her fingers and arms ached. The pain got to be too much. She put down her paintbrush – her livelihood and passion.
"Psychologically, I took it really hard," she said. "After the hysterectomy, I was fine. I bounced right back. But the psychological side, once the chemotherapy and radiation started, was way worse."
Sharon's worries started mounting: How would she pay the bills? What would she eat? How would she get back and forth to treatment in the city from her home near Barrie, Ont.?
Enter her "ray of sunshine": Kim Barrow.
PHOTOGRAPH: DOUG NICHOLSON
A social worker in the Odette Cancer Centre's Patient and Family Support Centre, Barrow is part of a multidisciplinary team that helps provide care before, during and after cancer treatment. Made up of social workers, dietitians, occupational therapists, spiritual care providers, psychologists, psychotherapists, psychiatrists and speech-language pathologists, the support team cares for the whole person – not just the cancer – and promotes resilience, reducing distress and preventing disability.
Often called supportive care, these services should instead be considered an essential part of a care plan, the Odette team says. It's a sentiment echoed around Sunnybrook, where patients are treated not only for what ails them, but also for other troubles one may not see. It's 360 degrees of care, so to speak.
"At first, patients are focused on the diagnosis – cancer. Then their thoughts and focus turns to treatment – the chemotherapy or radiation. Then, things seem to explode," Barrow says. "They start to think about family, mortality, financial implications, side-effects, what can I eat, how will I cope, emotional distress, or they have an existing mental illness that becomes exacerbated once they receive the news that they have cancer. We want to be in tune with those issues and get a sense of what's most important to the patient or family."
When Sharon met with Barrow, they discussed Sharon's main worries and how Barrow and her team might be of help to ease those.
Sharon says while she was always on the go, she always tried to maintain a healthy lifestyle. When her treatment started, she began to worry about how to keep her body as nourished as possible. Barrow referred her to nutrition services so she could speak to a registered dietitian.
"We speak to patients at all the stages of the cancer journey," says Edith Stokes, registered dietitian. "Many patients speak to us when they are first diagnosed. They know good nutrition is important and an aspect of their health they can impact. Others have a surgery date coming up, and they want to know how best to nourish themselves before that surgery."
Stokes says it's also often a patient's family who requests help from nutrition services. Or, it is patients who have finished their treatment, are cancer-free and want to know how to move forward.
"We want to support the patient and the family and get them through this as optimally as possible," she says. "We work together to keep our patient out of the hospital and with a quality of life that's the best it can be."
For Sharon, being wrapped in a circle of care made a world of difference.
"No one can truly answer your questions, because cancer and the treatment are different for everyone," Sharon says. "And it's that unknown that is so worrisome. But knowing I had Kim who I could call when I was down – and I had many down moments – that reduced my anxiety."
It's not just treating the disease, Barrow says. It's treating the whole person – and their family.
"We would be doing a great disservice to our patients if we didn't offer a service like this to treat all aspects of the person," Barrow says. "And the support is tailored to fit their needs."
Another member of the support team is Dr. Janet Ellis, lead psychiatrist in the Patient and Family Support Program and director of Psychosocial Care in Trauma at Sunnybrook. While supportive care has historically been viewed as an "add-on" to treatment, Dr. Ellis says, it's a model of care that's both possible and necessary.
"Psychological distress is a major complication in illness," Dr. Ellis says. Existential distress, anger, uncertainty, difficulty with changes in roles such as parenting or work, fear of the unknown and spiritual crises are all common.
"Someone may come to Sunnybrook for treatment for their cancer or injury, but it's so important we pay attention to biological and psychosocial issues – addressing depression and anxiety, helping with fears and relationships – along the journey," she says. "Research shows if you have untreated distress, for example, you may delay your cancer treatment or discontinue treatment before you are supposed to – and what does that do? Apart from ongoing suffering, it increases visits to the emergency room and family doctors, results in hospitalization, increases lengths of stay and worsens cancer outcomes. Embedding emotional and rehabilitative support right into the treatment journey is the humane thing to do, and it also helps the health-care system."
Dr. Ellis is also working to establish distress screening within Sunnybrook's trauma program, in the hope that patients or families who are having difficulty coping will get internal or external supports in place as fast as possible.
"We are working together to prevent longer-term distress and disability, major depression, maladaptive coping, like drinking and the breakdown of family relationships. We also hope to prevent longer hospital stays and reduce emergency room visits because we are improving the resilience of these patients," she says.
IT WAS AN EARLY SATURDAY MORNING in December 2006. Ralph Walker and some family members were at his Manitoulin Island hunt camp. The then-Canadian Forces corporal awoke to light the propane lantern. In an instant, it exploded.
Ralph was burned on more than 90 per cent of his body. Seventy-five percent of those burns were third-degree.
It took emergency personnel several hours to get to his remote location. Then, he was airlifted to Sunnybrook, where he was given a 5 per cent chance of living.
Ralph remained in an induced coma for 2.5 months at Sunnybrook's Ross Tilley Burn Centre, where he underwent eight surgeries and many ups and downs.
When he awoke, one of his first thoughts: a worry about his family.
"My immediate concern was for my family," he recalls. "How were they coping? What about the finances? How is my son?"
Ralph's wife, Diane, had been by his side during his stay. And by her side, Anne Hayward, social worker in the burn unit.
From assisting with the necessary paperwork – insurance, doctor's notes, financial claims – to acting as a gatekeeper for the countless visitors and phone calls so Diane wouldn't be overwhelmed, Hayward provided endless support.
"But the most important thing was she wanted to make sure that we – my son and I – were prepared for the changes and struggles that Ralph was going to go through," Diane says. "Without Anne, I don't think our stay would have been the same. She made sure we were looked after and made us feel special. Even when she was busy with the new arrivals or other families, she would always send a smile our way and made an effort to keep us updated."
It was a great comfort knowing Anne was available, she adds.
"If I had any concerns or questions I knew that Anne was and is there, and that is a great support and relief, even to this day," Diane says. "She is now a part of our family."
Nearly 10 years after his injury, Ralph still recalls how it took a team to get himself and his family through the ordeal.
"The team asks each patient, 'What is your expectation?'" Ralph recalls. "For me, I wanted to be 100 per cent of a man. And I wanted to retrain for the military."
He says the team listened to his needs – and his Type A personality – to tailor their approach.
"I wanted to push my body too hard," Ralph says. "They listened. And we worked together to get where I wanted to be. But they also reminded me that I had to wait for my body to catch up."
He says while the doctors and nurses provide amazing and life-saving medical care, the other team members shouldn't be overlooked.
"Everybody plays a part, no matter how small, and no one is less important. It's not one person. I mean, it is made up of individuals, and I could probably spend hours singing the praise of each one, but it's the collective that makes it work."
Ralph has retired from the military. He's a carpenter and contractor with lots on the go.
And, he continues to help other burn survivors and their families. Whenever he is in Toronto, Ralph also tries to pop into the burn unit to see the staff.
"I know that it can be a challenging place to work," he says. "There are many ups and downs. And I want to remind them of their success stories like me."
SHARON IS CANCER-FREE. After a year-long hiatus, she's picked up her paintbrush and joined a social painting group. She's also joined a women's fitness club, hoping to get her healthy body back and rebuild her social network.
And though cancer lurks in her shadows, she says, she has a secret weapon.
"I know I have Kim and her support team whenever I need them."
This content was produced by The Globe and Mail's advertising department, in consultation with Sunnybrook. The Globe's editorial department was not involved in its creation.