LOSING PATIENCE
ADVOCATES SEEK ACTIVE ROLE IN TREATMENT, SYSTEM LESS ABOUT ‘PROCESS’ THAN ABOUT PEOPLE
Judith John was diagnosed with an inoperable brain tumour almost two decades ago. Before one of many MRI appointments, she was sitting in a room waiting for her name to be called — but it didn’t happen.
Instead, a technician stepped through the door, looked down at her sheet and read out, “Brain tumour?”
It was an accumulation of experiences like this that transformed John into what she calls an “accidental patient advocate.”
“That moment in t he waiting room was a symptom of a system that doesn’t look up and take you in,” says John, who worked in communications at several Toronto hospitals before she got sick.
“Once you put on that blue hospital gown, you become a file, a bunch of symptoms. I just wanted to be treated like a person.”
Patient empowerment is important, John says, because illness is universal and there isn’t one person who won’t be affected eventually, whether they find themselves needing to advocate for themselves, or for a family member.
Thanks to the advocates who came before her, many Canadian hospitals now have patient advisory committees — John is on one for the University Health Network in Toronto. She says the first step is acknowledging patients (when doctors ask what they can do, she recommends they start by making eye contact with the people in their care). After that comes asking patients what it is they want from the health- care system — and acting on it.
John says there is still a long way to go before patients are really in a position to make meaningful change. On hospital walls across the country are signs proclaiming the facilities’ patient-centred approach, but she says no one really understands what that means. “Hospitals are dominated by process, so for them it’s about getting as many people in and through as fast as possible, as op- posed to giving people the confidence to ask questions and be involved in decisionmaking.”
Francesca Grosso, an expert in health policy and co-author of Navigating Canada’s Health Care: A User Guide to Getting the Care You Need, says those patientcentred signs are little more than rhetoric. Still, she’s optimistic. “So many movements start with rhetoric, so maybe someday they’ll be replaced by reality.”
The problem, she says, is that the health- care system was never designed around patients in the first place. Because they’re given so little choice in the decisions made around their care, they don’t see themselves as consumers, and they should. Grosso would like to see the government adopt a department of patient experience made up of people who understand policy and have no competing interests.
“We’re living longer and we don’t have a system that can provide complete support,” she says. “The aging population has made advocacy a big deal — and it’s essential because we’re the ones who are the experts in our clinical journeys.”
Over the past year, Dr. Granger Avery, president of the Canadian Medical Association, travelled across the country, listening to patient stories. “The societal voice is an essential piece in the design of our healthcare system,” he says. “It’s owned by the people, which means they need to be recognized and have input on how it should best meet their needs.”
Unfortunately, Avery says, advocacy has been fundamentally undervalued. “We talk about it being a patientcentred system, but it’s far from that. Don’t get me wrong, doctors and nurses are doing their best, but the issue is with the organization of the system itself and how things are done, or not done.”
Part of the CMA’s current focus is on supporting senior sand making improvements to home and palliative care, as well as providing support to informal caregivers ( there is currently a proposal in place to reimburse them). But to address some of the biggest challenges facing Canada’s health- care system — gaps in care that occur across the country and within hospitals themselves — Avery says the public needs to be involved in the design and management of the system overall. “Without that, we will continue to miss the mark.”
Cathy Fooks, president of the Change Foundation and former executive director of the Health Council of Canada, says that until five years ago, not much was happening on the patient empowerment front — and there is still some reluctance to embrace it. “Organizations that aren’t yet open to the idea are worried it will involve finger pointing,” she says. “But people are motivated beyond that. They’re engaged to make the experience better for others and they take a more constructive view.”
What progress has been made so far has occurred most notably in hospitals. In addition to advisory coun- cils, patients are on hiring committees and becoming increasingly involved with staff training and orientation, Fooks says. “They’re more embedded in the organizations themselves. Now we just need to drive that out into primary and community care — that’s the next frontier.”
Another issue is providing support — of any kind — to family caregivers. Fooks cared for both of her parents and was overwhelmed by the lack of communication and confusing array of services that didn’t share information. “I thought, ‘ this is really chaotic. I’ve worked in health care for over 30 years and I speak English and I’m having a hard time — what on earth do other people do?’”
Fooks says it shouldn’t be up to doctors and nurses to navigate outside services when patients are sent home, but it does need to be somebody’s job. “Every situation needs to be looked at individually; so what will work for this patient in this situation as opposed to a blanket ‘ everybody gets X.’ Not every parent wants their child helping them in and out of the bath.”
In Ontario alone, 3.3 million people are unpaid caregivers. “These people are lost in a maze with no compass,” says Lisa Levin, chair of the Ontario Caregiver Coalition. “There are so many agencies and services, no one knows who offers what. There should be clear ‘ doorway’ to service where pa- tients and caregivers can go to get questions answered.”
If people aren’t aware of the services available, whether it’s supportive housing, volunteer visitors or community transportation, they may be forced to move out of their homes and into nursing homes, Levin says. The health-care system simply isn’t equipped to provide ’ round- the- clock care for all the people who need it. “Unpaid caregivers are the invisible backbone of our health- care system — and they’re burning out. They need more recognition and respite, as well as some financial support.”
To make the entire process easier, Fooks says it helps to find out how things work while you’re still healthy. “You should know what you’re entitled to, as well as what to ask for when the time comes — people assume they’ll be told and it doesn’t always happen.” It didn’t happen for Annette McKinnon, who suffered joint damage after her rheumatoid arthritis went undiagnosed more than 30 years ago. When she had difficulty getting the help she needed, she felt betrayed by the system.
“Initially, I didn’t think there was anything I could do to change things for the better,” says the former market researcher from Toronto. But before long she became an advocate for early diagnosis and treatment, as well as better access to drugs.
She was recently an ePatient Scholar at Stanford’s MedicineX Conference and is on the patient advisory board for the Arthritis Research Center. “You have to sort of stretch yourself,” she says. “You start out as a patient who isn’t involved at all, then suddenly you’re co- authoring research papers.”
McKinnon says it’s getting easier for patients to get involved; you just need to believe you can make a difference. Anybody can volunteer to be a member of a regulatory council, she says. Even more important is participating in research. “What patients and researchers think are important outcomes for studies is often completely different,” she says. “Patients can help ensure the questions being asked are more relatable. We’re the biggest stakeholders, so we should have a voice when these decisions are made.”
McKinnon is currently involved in a trial program that gives her online access to her medical records. “I can read my doctor’s notes from home and see my latest test results — his own resident can’t do that,” she says.
Shelagh Maloney, vice president of c onsumer health, communications and evaluation services of Canada Health Infoway says giving patients access to digital tools to help them manage their health provides new models of care that are more affordable, especially in an antiquated system where fax machines are still the gold standard of communication between providers.
According to the 2016 Connecting Patients for Better Health survey commissioned by Infoway, 89 per cent of Canadians want access to digital health services such as e- booking, online prescription renewal, online access to medical records and e-visits with care providers, but only 20 per cent actually have it.
“What stands out for me is the extent to which engaged patients report how much better they’re able to manage their health with digital solutions,” Maloney says. More than 70 per cent felt online access improved their knowledge of their health and led to more informed discussions with their doctors. They also felt more confident in the care they received. “It just demonstrates the potential for digital health to not only help patients become empowered, but also to transform the health care system as a whole.”
WE’RE LIVING LONGER AND WE DON’T HAVE A SYSTEM THAT CAN PROVIDE COMPLETE SUPPORT. THE AGING POPULATION HAS MADE ADVOCACY A BIG DEAL — AND IT’S ESSENTIAL BECAUSE WE’RE THE ONES WHO ARE THE EXPERTS IN OUR CLINICAL JOURNEYS. — FRANCESCA GROSSO YOU BECOME A FILE, A BUNCH OF SYMPTOMS.