When Glenn Fahner was paralyzed after a fall during a fishing trip in August 2009, he was sent to Michigan for care because there were no appropriate hospital beds for him in Ontario.
If that wasn't enough, after his return to the province, he was bounced between institutions, including the Lyndhurst rehabilitation facility in Toronto, St. Joseph's Complex Continuing Care, Pioneer Manor and Health Sciences North.
His health gradually deteriorated until he ended up in palliative care at Health Sciences North.
Before his death in late 2011, a doctor unfamiliar with his case wanted to discharge him back to Pioneer Manor. His family had to advocate on his behalf to prevent this from happening.
His daughter, Kim Fahner, said his story illustrates how seniors are often treated by the health-care system. She said she spent her 30s as the primary caregiver for both her father and her mother, who died in December 2008.
“What I learned about the system in my time as a patient advocate for my parents?” she said.
“I have learned that health-care providers need to be more aware of the patients' own humanity. I would ask that doctors walk into their rooms, thinking of their souls as well as their bodies.”
Fahner said she'd also like to remind doctors that not every patient has a family member to advocate on their behalf, as her father did.
Last year, she joined Health Sciences North's CEO Patient and Family Advisory Council, where patients and their family members share their ideas on changing the health system with the hospital's CEO, Dr. Denis Roy.
Fahner shared her comments on behalf of the council at a June 3 Health Sciences North forum on designing a more seniors friendly health-care system.
Kim Fahner spoke on behalf of the Health Sciences North CEO Patient and Family Advisory Council at a June 3 forum on designing a more seniors-friendly health-care system which was put on by the hospital. Photo by Heidi Ulrichsen.
The keynote speaker at the forum, Sholom Glouberman, said it's crucial for health-care organizations to hear stories like Fahner's.
“Those stories are absolutely necessary,” he said. “We have to hear them, and we have to understand what they mean, and what we can do about them.”
He said patients and families are very important to the transformation of the health-care system.
“The reason they have that role is people who are providers of service don't see the patient perspective right away, because they're so enured in their way of thinking,” said Glouberman, the founder of the Patients' Association of Canada.
He said he founded the organization in 2007, while in hospital for two weeks recovering from surgery.
The hospital did a lot of things to and for him, but little with him. Glouberman said he saw many things wrong with the system that “could be changed quite easily if patients and families were involved in the re-design.”
To explain why patients and families lack involvement in their own care, Glouberman brought those at the forum through the history of the health-care system.
One hundred years ago, most people died of infectious diseases. Compare that to today, when people have fewer acute illnesses and more chronic conditions.
In fact, almost all people over the age of 65 have at least one chronic condition, and half of the country's population is on some type long-term medication.
The trouble is when Canada's publicly funded health system was set up in the 1960s, it was very much still focused on stamping out acute illnesses.
Highly successful in that regard, the health-care system failed to adapt to the new kinds of illnesses people experience, Glouberman said.
He said if he had an acute illness, such as a heart attack, he'd want his doctors to go to work and not necessarily stop to consult him.
“But for chronic disease, I have to play a role, because I can change what I eat. I can change what I do ... All of those things have a bearing on chronic disease, so I have to play a part.”
Patient involvement can be anything from putting patients' medical records online so they know more about how to deal with their conditions, to listening to what they have to say about making the health system more patient friendly, he said.
Glouberman said his organization is involved in helping health-care institutions to do just that.
He gives the example of long-term care patients moving into the Baycrest facility in Toronto — an experience families typically find stressful.
The patients' association managed to get Baycrest to change the rules so that families didn't have to phone three days in advance to move in furniture and Baycrest now provides a porter to help.
Dave McNeil, Health Sciences North's vice-president of clinical programs, said Glouberman's message is an important one.
The health-care system, as it currently exists, just isn't friendly to seniors, because it was designed when people didn't live into their 90s or beyond, as more and more people are doing.
“Today, what we face is chronic disease and aging, but the health system still relies on the hospital,” McNeil said.
“We as a hospital have to do things to manage seniors differently, because they're not your young 50 and 60-year-olds coming in, having an acute phase of care, and going home. These are elderly people.”
Health Sciences North is taking steps in the direction of engaging patients and making what it does more sensitive to their needs, including the establishment of the CEO Patient and Family Advisory Council, he said.
The city's two geriatricians — Dr. Janet McElhaney and Dr. Jo-Anne Clarke — also provided their perspective on how change the health-care system so it's more senior-friendly.
McElhaney explained one in every three seniors leave hospital with a higher level of disability than they had before, partly because they lose strength when they lie in bed for several days.
She said the hospital has introduced a new protocol, where doctors focus on the seniors' mobility, as well as their medication, nutrition and hydration and bowel and bladder function.
