At UHN, it takes a team to save a patient. Sometimes more than one.
Carolyn Giroux is living proof.
To Carolyn, a dog walker from Toronto, the health care system was foreign. "I could count on one hand the number of times I'd seen a doctor," she says. That changed dramatically in the summer of 2023 when persistent stomach pain and loss of appetite prompted a trip to the Emergency Department.
That led to a CT scan, an ultrasound and a pair of endoscopic biopsies. The diagnosis was a pancreatic neuroendocrine tumour (pNET).
"When you Google 'pancreatic cancer' you're not going to find a lot of good news," Carolyn says. "You spend about two seconds reading about it, then you close your laptop."
But Carolyn is a fighter — and has teams of heavyweights from across UHN in her corner, including the Sprott Department of Surgery and Princess Margaret Cancer Centre. And, tying all of it together is UHN's five-year-old Integrated Care Program (ICP), which is changing the health care ecosystem by supporting care delivery to some of the most complex patients in the comfort of their home.
Last January, Carolyn had a marathon surgery to remove the tumour. That was followed by an arduous recovery during which she was supported at home through a pair of 90-day stints in UHN's ICP. She returned to her dog walking business and was feeling her energy rising before the discovery in November of spots on her liver, which has her back under the care of a team at the Princess Margaret.
Despite this latest setback, Carolyn's magnetic smile and quick wit, which have seen her through some of the darkest days since her initial diagnosis, remain on full display.
"This new cancer thing, it got me down, it bummed me out, because I really thought I was done with this," she says. "But now I've started what I call 'Operation Sunshine and Lollipops,' where I go to a Christmas bazaar, I have lunch with a friend, I just do stuff to cheer myself up.
"You gotta laugh, right? You got no choice. Otherwise all you do is cry."
Carolyn credits Dr. Ian McGilvray, Head of Liver and Pancreas Surgery in UHN's Sprott Department of Surgery, who led the team through her 20-hour surgery in January 2024.
"He's my hero," she says. "He saved my life."
And, registered nurse Donnette Foderingham of the ICP — "the best program you have at UHN," says Carolyn — saved her from being "overwhelmed" by her recovery.
"Everyone is so busy, but she had time for me, she explained things," Carolyn says.
"She was my wingwoman."
Support. That's at the core of UHN's ICP. It brings together all providers to ensure continuity of care, helping patients get home as soon as possible and stay there. It gives them one TeamUHN member as a point of contact, ensures one patient record for care teams to collaborate and offers a 24/7 support line.
"The idea is having the hospital without the walls," says Dr. Christopher Chan, Medical Director of the Integrated Care Program at UHN.
Launched in 2019 in the Thoracic Surgery Department, UHN's ICP has expanded to involve all divisions of the Sprott Department of Surgery, Department of Medicine, including the division of General Internal Medicine, and UHN's Ajmera Transplant Centre. The number of patients it has served has grown tenfold — from 400 five years ago to more than 4,000 today — with increases in both case complexity and the levels of acuity in those being supported at home.
"We've gone from building a demonstration project — the original thoracic pathway — to an enterprise-wide clinical program that makes integrated care an impactful health strategy for UHN," Dr. Chan says.
Central to that strategy is creating hospital system capacity while improving the patient's care experience and outcomes. By comparison with the traditional care model, integrated care's use of one point of contact enables quicker identification of barriers to discharge, allowing for earlier returns home.
And, once the patient is at home, the 24/7 support line and one dedicated homecare team with a direct link back to the TeamUHN member who is the point of contact, helps with more timely identification of a change in the patient's condition and need for possible intervention or hospital readmission.
"Even if someone needs to come back to the hospital, we would hope that through integrated care we're able to catch it at an earlier stage so they don't come back as sick," says Dr. Chan. "We have employed this strategy to really increase our own capacity to serve more patients and also create more efficient use of our resources."
Data backs that up. In fiscal year 2023-24, the Integrated Care Program was able to enroll and support 2,021 patients across surgery, medicine and transplant. During that time, the average patient spent two fewer days in hospital while they were in the program.
Carolyn Giroux's surgery was complex. PNETs are fairly common and mostly benign, but her tumour was cancerous and its "behavior was exceptionally rare," says Dr. McGilvray.
The cancer had grown up and down the vein responsible for draining blood from all of the intestine directing it to the liver. The result was that removing the cancer from the pancreas put at risk the large and small intestine, liver, spleen and stomach.
The team at the Toronto Video Atlas of Surgery, founded by Dr. McGilvray and Dr. Paul Greig, and now a major UHN and University of Toronto resource, created a 3D model of Carolyn's tumour and abdominal anatomy. It was put into a virtual reality (VR) space and Dr. McGilvray wore VR goggles to help him map out the surgery outside the operating room.
In the end, the surgery was done "ex vivo," removing the pancreas and intestine and mess of veins, flushing the organs, separating the tumour from the uninvolved tissues, arteries and veins, and rebuilding the veins outside the body using a biological replacement before transplanting the "new," tumour-free intestine back into the abdomen, having rebuilt the veins from the spleen to the liver.
Carolyn also received a temporary protective ileostomy, which took pressure off the bowel while she healed. "There are only a handful of hospitals around the world that could pull this operation off safely," Dr. McGilvray says of the surgery, which he describes as "an extraordinary team effort."
General Surgery is one of 10 new pathways added to the ICP in 2023-2024, which allowed Carolyn to be partnered with Donnette — a registered nurse and Integrated Care Lead.
"Carolyn's biggest thing was, 'If I have any questions, I can reach out, right?' I assured her she could," Donnette says. "There was a sense of relief."
Carolyn lives alone. On her first day back home, Donnette called to make sure she was settled in and able to handle changing her ileostomy bag.
Two days later, a nurse from VHA Home Healthcare, UHN's community partner, visited to change the dressing on Carolyn's wound and make sure there were no concerns with the bag.
That routine continued for three weeks — Donnette checked in by phone weekly; the VHA nurse visited every three days. At one point, there was a concern about how the wound was healing, so Donnette had different dressings delivered to Carolyn's door for the VHA visit the next day.
"I would have felt completely lost and very overwhelmed without her," Carolyn says of Donnette.
That positive patient experience was borne out in the results of a survey of more than 300 UHN ICP patients. Among those discharged from hospital between Oct. 1, 2023 and Aug. 13, 2024, 90 per cent rated the overall program four out of five or higher. Respondents also had positive responses in terms of equitable and timely access to care, continuity and care coordination and communication.
"The most important component of what we do is connect patients to the appropriate care at the right time and at the right place," says Dr. Chan. "And, at the core of that connection is the idea that patients know who to call and that there's always going to be someone who gets back to them."
The evolution of UHN's ICP was accelerated by COVID-19. Early in the pandemic, UHN launched an integrated care initiative — called COVID Connected Care — that brought together dozens of multi-disciplinary members of TeamUHN to virtually support patients with the coronavirus at home. It provided pulse oximeters to measure oxygen saturation levels, arranged home care visits if needed and created a virtual pharmacy to quickly deliver Paxlovid to patients with mild to moderate symptoms.
As the pandemic eased, that mechanism offering support at home for COVID patients was applied to more chronic illness case management, including diabetes, heart failure and chronic obstructive pulmonary disease (COPD). Such initiatives were made easier thanks to relationships with community and hospital partners fostered during the height of the pandemic, and the acceptance of so many within the health care system and patients at large who were more receptive to trying different care models.
"For patients, the idea of someone checking in with you virtually at home is now acceptable, even preferred in many cases," Dr. Chan says. "So, in a very awkwardly opportunistic way, we took a very challenging scenario and turned it into an opportunity and accelerated our engagement."
As the weeks passed, Carolyn's ileostomy continued to have high output, despite various medications to slow the intestine down. That put her at risk of dehydration. On at least two occasions, Donnette spoke with Carolyn and suggested she go to the TGH Emergency Department, calling ahead to the care team to make them aware she was coming and why — blood work and fluids — in hopes of expediting the visit.
"We want to ensure any interventions are done sooner, so if the patient does come back to the hospital it doesn't need to be a long stay and they're not coming back so sick they need to be in the ICU," Donnette says. "By being on top of it, we can find solutions and get to a better place quicker."
Carolyn avoided any time in the ICU and in mid-May had her ileostomy reversed. After that, Donnette renewed her participation in UHN's ICP for a second 90-day term.
Carolyn no longer received regular VHA visits for home care or wound dressing but Donnette had a dietitian come to her home. And, when Carolyn was feeling particularly listless days after the second surgery, Donnette was able to accelerate a return appointment with Dr. McGilvray, which led to a change in enzyme medication that gave her more energy.
"We really could only send her home safely because we knew the integrated care team would be following up on a regular basis," Dr. McGilvray says. "They got her through the next few months."
Now, Carolyn is embarking on the latest leg of her journey. Over the next few weeks, she has meetings with Dr. McGilvray and a UHN endocrinology team to map out the next steps of her treatment. She also has a session booked with Emily Barca, a social worker in the Department of Supportive Care at the Princess Margaret, who Carolyn calls "a little darling, a sweetheart, who listens to all my problems."
Emily, who has been at UHN for seven years, the past six at the Princess Margaret, says that for many people "cancer is one of the biggest — if not the biggest — crises of their lives and, to me, it's terrible to think they would have to get through that on their own." So, she sees her role as giving people a place to talk, affording them the time and space to explore their feelings, which isn't always possible with other clinicians who have a different focus.
Every patient is different in their approach to coping with cancer, and there is no "right way." Emily says that "the gift of time" is used to "help people find out what works best for them" — some people like to educate themselves as much as possible about the illness and treatment options, and others feel most supported by speaking with people going through similar experiences.
"With Carolyn, her humour is just there instantly," Emily says. "Within a minute or two of meeting her, she had me laughing.
"Carolyn uses humour in a 'laughter is the best medicine' sort of way to connect with others. For most people, when they connect with others, they feel better."
Carolyn is a big personality. And, connecting with people is a central theme through her journey at UHN.
"I've met so many great people at UHN," she says. "They listen, they care and they know their stuff.
"But, at the same time, I'm saying 'enough already.' I want to get on with the rest of my life."