TORONTO - Author Wayson Choy shared his life and near-death experiences with a roomful of health-care professionals recently, telling them about his asthma and heart troubles and the cherished friends and family who helped with his recovery.
The theme of the gathering was self-managed care, and Choy, 70, explained that he discovered something about chronic illnesses during his ups and downs, which included quadruple bypass surgery.
"They're only dramatic up to a point, that you will get some attention at the beginning, and thereafter you have to learn that you must understand you are burning people out if you're not careful," he told the attentive audience at Ryerson University.
As his body healed, his caregivers were able to say "no" at the right time, and say "you do it now," recounted Choy, the award-winning author of "Not Yet: A Memoir of Living and Almost Dying."
"When you catch on, then you realize the doctors have been saying 'you must do this, Wayson, you must do the exercise, you must make sure you take your pills,"' Choy said later in an interview.
"And my physiotherapists were really good because they want you to work with them until you go away, and they want you to go away. That's why they're working. That attitude, very professional and very kindly done, made me realize 'yes, I have to be responsible,"' said Choy, who also wrote "The Jade Peony" and "All That Matters."
A fundamental change in the culture of care is required to move toward collaborative care, said Judith Schaefer, a researcher at the MacColl Institute for Healthcare Innovation in Seattle, who also took the podium at the conference.
The old culture of care is fragmented, reactive, not planned or co-ordinated and primarily physician focused, she said.
Some breakthroughs are being made in providing patients with the education and support they need to handle their chronic conditions, and still more are on the horizon, she said.
"Sometimes I think that's the thing we need to ask ourselves every day: 'Will this person know what to do when they go home?' If we ask ourselves that repeatedly, 'does this person know what to do when they go home?' we would serve everyone better," she said.
Why is self-managed care important?
A fact sheet by the Canadian Research Network for Care in the Community notes that 39 per cent of Canadians have one of seven chronic health conditions - arthritis, cancer, chronic obstructive pulmonary disease, diabetes, heart disease, high blood pressure and mood disorder. Chronic conditions are more prevalent among older people, and by 2031, the proportion of Canadians over 65 will have grown from 13 per cent to about 24 per cent, it said.
Canadians with chronic health conditions used at least half of all consultations with family doctors and nearly three-quarters of all nights spent in hospital, according to the Health Council of Canada.
Support for self-managed care offers potential cost savings, its proponents argue.
"People are living longer with more chronic conditions, more risk factors for their illness and disease and we need to reorganize the care to help them be more active partners in that, because everyone is self-managing," said Susan Himel, co-author of the fact sheet.
"If you're not managing well, you're more likely to have complications, illness and preventable hospitalizations."
Himel leads strategy for a project called Live Well at Bridgepoint Health in Toronto, which specializes in patient care, research and teaching in the area of complex chronic disease. The philosophy of the publicly funded organization is to integrate wellness and support for self-management into all programs.
"A one-off education session is not going to be enough for people who are living with multiple conditions that fluctuate over time," explained Himel.
And preventing a second stroke in a stroke patient, for example, could be good economics as well as quality care, she said.
Like Schaefer, though, she lamented that most of the health-care system is still focused on reactive medicine and acute care.
"If we have all our eggs in the treatment reactive-care basket, there'll never be enough resources."
Schaefer said an interdisciplinary approach is needed that involves physicians, nurses and others to help people live day to day, and to intervene in areas of medication management, exercise and food.
"We're beginning to think less about one visit and more about a series of visits ... we know patients need to manage their conditions over time and we need to be there with them."
Patients and their families need to be involved at every level, she said.
"Sometimes in my gut I just know if this person isn't managing well - it may be transportation issues, child care issues - but people who just don't know how to manage well in their lives are not going to know how to manage well with a health condition either."
The McGill University Health Centre in Montreal is one institution that's taken the reins, offering a free six-week program called My Toolbox, developed at Stanford University, in which volunteers with chronic conditions lead workshops to assist patients and their loved ones in managing day-to-day challenges. It includes coping strategies, tips for communicating with the health-care team and dealing with emotions such as fear and depression.
For his part, Choy said he knew he had to face his new reality.
"But I was more than willing because I wanted my life back. My life is not my illness. I found my life and it's back."
