At a team retreat for staff of St. Joseph’s Chronic Obstructive Pulmonary Disease (COPD) Program, the most powerful lessons were delivered by patients.
Several patients and their loved ones were invited to participate in the day-long retreat, during which staff created their pulmonary rehabilitation work plan for 2019-2020. The patients and their caregivers shared their personal experience as participants and were asked for their opinions on various aspects of the program. Their words were candid, meaningful and moving.
“All of you matter so much to people like me,” Jim Kenny told the staff. “Everything has turned around since that first session. I didn’t want to go – my wife made me. But you made me stay. I realized I wasn’t the only one caught in this web (of COPD) and that you were there to help.”
The experience of the patients and their caregivers “is of paramount importance in developing a program work plan,” says Sue Hocking, Coordinator of the COPD Program. “We couldn’t create a plan without them. During the retreat our patients were able to clearly articulate what is important to them, what worked well for them and where we had opportunities to improve.”
Through the comprehensive COPD Program, patients receive medical care and the opportunity to join an eight-week, classroom-based group learning program. Most patients also enroll in a group exercise program, beginning with an eight-week intensive phase of sessions held twice weekly at St. Joseph’s Hospital, followed by a six-month maintenance phase of once-weekly sessions in partnership with the downtown YMCA. During their time in the exercise program, patients take part in skill building sessions with a psychologist to better manage the anxiety and stress that often comes with COPD.
Leo Bouillon was diagnosed with COPD 10 years ago but admitted that he ignored it for years. The biggest hurdle in joining the program, he said, was getting past his own denial.
Three years ago, Leo’s health took turn a turn and he was hospitalized four times within 1 ½ months. He had COPD, heart failure and diabetes but didn’t realize they were all connected. Today, his various health issues are all in check and he’s doing well.
“I’m nearly 70 and I didn’t expect to get there. I attribute it all to the program,” Leo told the staff. “It taught me so many things.”
Anne Kenny is also living with COPD, but not as a patient. As Jim’s wife, she provided staff with the caregiver perspective, referring to the program as a “life saver.” Married for 49 years, the couple enjoyed life on a 50-acre property in the country before Jim became ill. The now 74-year-old was in the lumber supply business before retiring, which involved frequent travelling from coast to coast. Until his mid-50s, he prided himself on being an athlete, playing hockey and baseball. With COPD, however, came many life changes.
“We moved to town because things became too tough,” says Anne. “Our last vacation was six years ago because it’s almost impossible to go away. If I want to get away it takes a lot of arranging. The impacts are everywhere.”
After a significant health episode in 2017, Jim struggled with anger, fear and a sense of emptiness and loneliness. His mobility was poor and his outlook grim. “I was talking to the wrong people,” he told the staff. “I was talking to myself… I thank every one of you. You each contributed to me feeling better.”
The patient and caregiver feedback was both valuable and inspiring, say staff.
“I really valued hearing about the impact that in-person social support played in the patients’ overall experience of pulmonary rehab,” says Karen Unsworth, cardiac rehab specialist. “I certainly gained fuller appreciation of the ‘power of social connectedness’ in this care delivery model.”
For social worker Lisa Smith, hearing from participants about improvements in their quality of life “makes me grateful to be able to do this work and to be a small part of their experience. They inspire vicarious resiliency as they share the gains they have made, which are so often the things those of us living without a chronic condition take for granted.”