|Home | About | Journals | Submit | Contact Us | Français|
Patient groups are skeptical that a national charter of patient rights would reap real-world changes in Canada’s health care system.
The Canadian Medical Association’s recent proposal that a national patient charter be established in Canada follows on the heels of two decades of efforts to legislate patient rights at the provincial level, a hit-and-miss experience that’s left patient groups questioning the necessity of such a document.
It’s commonly held that patient charters provide people with a bit of ammunition in dealing with indifferent or stubborn health care bureaucracies, helping them to obtain information about their conditions from health care providers or about medical mishaps.
But the creation of a national charter listed low among health consumer priorities at the Canadian Patient Summit in March, says Karen Philp, chair of the summit and CEO of the Canadian Wound Care Association. “Their attitude was, ‘Well that’s nice, but let’s not spend too much energy on it, and if we could forego the charter altogether and just implement the content, then that would be great.’ It just wasn’t on the radar.”
The summit brought together some 200 people representing more than 30 patient organizations across the country. According to Philp, many participants said a charter should come after, not before Canada tackles more nuts-and-bolts changes to system. Drafting a charter any sooner would only “bog down” necessary reform with “a lot of lip service.”
Summit participants identified a number of more pressing health care reforms, says Philp, such as reducing wait times, implementing a national catastrophic drug plan and improving access to health care providers and services.
If systemic change doesn’t precede the creation of a national charter, implementation will likely be an uphill battle, says Chris Summerville, CEO of the Schizophrenia Society of Canada. “Until you deal with the issues of supply and demand, it’s going to be very difficult to honour the spirit of a charter.”
The inherent difficulty of implementing a charter from the top down is among the reasons previous attempts to legislate patient rights at the provincial level have been largely unsuccessful, says Kathy Kovacs Burns, cochair of the Best Medicines Coalition, a national alliance of advocacy groups that represents people living with chronic diseases. “Charters are value-based documents, so they really pose a challenge for governments to legislate and monitor.”
Fears that enshrining patient rights in law would mean imposing “unreasonable demands” on physicians and opening up provincial governments to lawsuits have also posed an obstacle, says Philp.
Various hospitals, clinics, medical associations and societies across Canada have introduced nonbinding patient charters in recent years, but they’ve had “a limited effect on the well-being of patients and are primarily used for educational purposes,” she says.
“I don’t honestly believe anything has changed as a result of that exercise, except maybe the patients’ sense of solidarity and vision moving forward,” adds Louise Binder, chair of the Canadian Treatment Action Council, a nongovernmental organization run by and for people living with HIV/AIDS. “I’ve yet to be convinced that a charter of anything gets you very far, unless it’s enshrined in law and can be enforced in some meaningful way.”
While the Canadian Medical Association doesn’t outline an accountability framework for the proposed national charter in the recent health reform blueprint Health Care Transformation in Canada: Change that Works, Care that Lasts, the association does state that “the Charter needs to be accepted by governments, providers, and patients to have an impact” (www.cma.ca/multimedia/CMA/Content_Images/Inside_cma/Advocacy/HCT/HCT-2010report_en.pdf).
Delegates to a special session on metrics for health care concluded that a patient-centred charter for quality must have adequate accountability measures if it is to result in improvements in Canada’s health care system (www.cmaj.ca/cgi/doi/10.1503/cmaj.109-3192).
If government invests in a widespread education campaign, reporting tools for patient complaints and significant consultation with both patients and physicians, the goals of the charter may even be achievable without regulation, says Kovacs Burns. “There are lots of international charters put out by the World Health Organization and other groups that are respected without being legislated, so it’s possible. But so long as we’re operating in silos, there’s no ownership in these policies.”
It’s all too easy for nonbinding policy to become diluted in the murky waters of federal and provincial responsibility, says Binder. “I don’t think you’ll ever see something like that implemented on a national level because the federal government will say it’s the jurisdiction of the provinces, and I doubt the provinces will want to take on the cost of enforcing this thing.”
Past recommendations that the federal government enact a national patient charter have “died a natural death” for that very reason, says Philp, citing failed federal private members’ bills tabled in the early-2000s.
But more important than the charter itself is the opportunity it will provide for patients to join the discussion on health care transformation, she says. “It’s about time we had a conversation across the country about the future of health care, and at least this is sparking discussion about what’s best for patients, first and foremost.”
To date, conversations surrounding patient charters have been fairly one-sided, says Frances Jewell, executive director of the Mental Health Rights Coalition of Hamilton, an Ontario-based advocacy group. “Patient-centred care is a sexy buzzword right now, and people are eager to jump on board. But who’s determining what the patients’ needs are? I’m regularly contacted last minute when a group wants to push some charter or patient-centred policy through, and out of the blue they want me to rubber stamp this and throw together a consumer panel on that, because they’re on a deadline. I don’t appreciate well-meaning organizations speaking on my behalf.”
Canada’s checkerboard experience with patient charters means it’s anyone’s guess if a national charter will be more buzz or bite, she says. “It’s been easy to direct services for people and say we’re doing patient-centred care. That’s no longer acceptable.”
Previously published at www.cmaj.ca