how patient navigators help carry the burden: 'you understand their fears'

people diagnosed with cancer are understandably frightened and uncertain about what the future holds. whether their treatment comes with drug therapy, radiation or surgery—or a combination of interventions—the reality of managing all this can be overwhelming. 

one canadian study based on surveys of cancer patients in eight provinces revealed that while health-care providers gave information about their diagnosis and treatment in a sensitive manner, when patients expressed emotional concerns, more than half were not referred to services to help with their fears and anxieties. 

that’s a care gap joy abbas is dedicated to filling by helping those cancer patients and their families as a patient navigator, a role that she embraced in 2024 as the next chapter in her career. joy, 60, has been a nurse for more than 30 years at scarborough health network in scarborough, ont., hired during her honeymoon when she and her husband first moved to the area. 

she recently received her 30-year service pin that she wears with pride.

born to be a nurse

“i honestly just like helping people. and my sister, faith, is a nurse. it’s funny, we have a faith and a joy, and we’re both nurses,” she says of their names that celebrate positive emotions. when you meet her, you can’t help but recognize that the name is a fit for her warmth and big-hearted personality. she grew up with her family on a farm with sheep and cattle north of sudbury, ont. 

“we’ve always been taught to help people. and this was something i was very much interested in and have been from the beginning, from when i was young,” she says of caring for and administering medication to the farm animals.

“i think you’re born or conditioned to be a nurse. when you stop caring, you really need to get out of the profession. i’ve always put the patient first and thought about if that was my family member, how would i want them to be treated? and i treat them like family.”

the role of a patient navigator

as a patient navigator in colorectal or gastrointestinal cancers, joy is the main contact for patients newly diagnosed or waiting for diagnosis after tests to guide and support them from their first appointment through treatment and after. her deep experience in nursing includes more than 20 years in the endoscopy department, where patients go for scope procedures like colonoscopy or gastroscopy. 

“they do outpatients as well as inpatients and emergencies. it’s a busy, busy unit, but you learn so much from there and it is where the patients are sometimes first identified as having a lesion or a suspected lesion,” joy says, adding that she’s felt for years that this is a difficult time for people.

“patients are told that there’s a suspected something and then they’re let out on their merry way. so it’s nice that they have someone now who calls them, which is me, or meets with them.” joy will connect right away with patients, either by phone or meeting in person, and always arrange to meet in person at some point. while she has designated hours to respond to concerns, she is always ready to help them: “i leave my phone on and i tell them this, i have hours, but i always leave my phone on.” 

patient navigators can be found at health-care centres across the country, providing this personalized care so that patients and their families can access the system and get the best care. while the role isn’t new, it has different aspects, requirements and training, depending on the area where the patient navigator is posted. for joy, her expertise as a registered nurse in endoscopy allows her to identify abnormalities on ct and mri scans and to know when to alert patients if they need an iron infusion. she understands the biology and patient experience of cancer. 

there’s also a personal touchpoint for her role. joy lost her nephew at age 42 to colorectal cancer, and she’s carried the pain and lessons with her. she knows how that loss impacts family and recognizes how important it is to have an advocate who knows the cancer health-care journey. 

“having someone who advocates for you in the system, someone who knows how the system works and can pull whatever weight behind that, right?” joy is emotionally moved by the individuals who come to rely on her, bringing her expertise and empathy to every interaction. that’s just who she is. 

“you understand their fears; you understand their concerns. one patient, actually, i had to walk into the operating room because she only trusted me and didn’t want to go in with anyone else. so i put my scrubs on and walked her in and held her hand while they put her down with the anesthesia. but that’s what we’re here for. we’re here to help them. if they tell me to jump, i ask how high. and if i can do it, i will do it.”

an extra advocate on your side

why is the system so difficult for people without a knowledgeable advocate? 

joy explains that things sometimes fall through the cracks. when the cancer team met to discuss bottlenecks that needed to be addressed, time was one of them. when a patient needs life-saving treatment, the minutes count. surgeons, for example, have admin people who book appointments, so having a patient navigator to keep things moving forward by following up and making sure patients understand what’s expected for tests and treatments is a key role. this is especially true in the endoscopy clinic that arranges for a surgeon to see patients within a week. “we have the cts and mris done within two weeks. and the ball continues to roll continually. it’s quite a fast-paced department, i’m telling you,” she says. 

“i really am an advocate for the patient. i listen to what they need and i listen to what the surgeons require. and we try to get all those puzzle pieces together as quickly as we can.”

joy completed a special program about patient navigation, along with courses on health equity, health literacy and coaching. in the growing and diverse population of scarborough, her training has helped provide direction for people, like newcomers, who don’t understand the health-care system or have language barriers. the coaching training also equipped her with tools for communication, building on her natural empathy and experience. 

“it’s about perspective. i think that if you can put a positive twist, a positive mindset, that also helps you heal, that helps you gain momentum in the system. and you’ve got to look at the positives. there’s not many, but there are a few.”

she brings a reassuring presence to patients and their families in some of their toughest moments.

“they know that i’ve got their back. they know they can call me anytime and i will respond to them at some point and they know that. and i think that’s huge. i think that’s important. and one gentleman said to me, there’s things that he couldn’t talk about even with his wife, his fears. so you’re supporting not just the patient, but the family, the significant others, the people that love them. and i tell them, give my number to your daughter, your sister, or whoever you feel wants to talk.”