The healthcare system is complex. No one knows that better than a newly diagnosed patient, especially if they have a serious condition like cancer.
Even when the care is good – and let's not forget that, in Canada, the care is, for the most part, very, very good – you can feel like you're being sucked into a dizzying vortex.
Being sick is scary and it's exhausting. Tests and treatments come at a furious pace, punctuated by bouts of excruciating waiting.
When you are ill, you tend to have many questions about what's happening in your body and what's going to happen next. It is never quite clear where you can go for answers. Nor is it always obvious where you can go for help.
What patients navigating the healthcare maze need, as much as anything, is someone to offer comfort in the form of information and practical help.
Thankfully, this is increasingly becoming a reality in Canadian healthcare.
More and more hospitals are hiring navigators, though their tasks can vary widely.
Sunnybrook Health Sciences Centre, for example, has a Personal Health Navigator, who taps into the expertise of health professionals at the hospital to provide answers to questions from hospital patients and visitors. Those questions range from how to get medical records of a deceased relative for insurance purposes to how to judge the benefits and risks of a new prescription drug. (The post is actually held by former Globe and Mail health editor Paul Taylor.)
There are also Patient Navigators with a more hands-on role, usually registered nurses or social workers whose job is to facilitate patient access to care and related services.
Navigators are most commonly used in cancer care and transplant because treatment can go on for months and require a lot of co-ordination.
Accessing that care – for example, chemotherapy twice a week for eight weeks – can also entail a lot of services outside the health system like arranging daycare, applying for disability insurance or Employment Insurance, requesting help with drug payments from the likes of the Trillium Drug Program, arranging transport to appointments, booking physiotherapy appointments and so on, all of which can be overwhelming for someone who is already coping with severe illness.
These navigation programs tend to pay off because they result in fewer missed appointments, less duplication of tests, better compliance with prescribed treatments, quicker recovery, not to mention easing pain and suffering, both physical and psychological.
What is unfortunate is that, to date, the investment in patient navigators has been paltry in relation to the need.
If we're going to have patient-centered care – which is the rhetorical catchphrase du jour – a commitment to that philosophy has to be demonstrated in concrete ways, and one way of doing that is helping patients through the maze.
The other cornerstone of patient-centered care has to be righting wrongs.
Millions of people each year benefit from medical care in Canada. But some are also harmed or treated badly. Medical errors remain one of the leading causes of death, claiming as many as 24,000 people a year in this country; and 7.5 per cent of patients admitted to a Canadian hospital – one in 13 – suffers harm as a result of their care.
Right now, they have few places to turn, and that is frustrating beyond belief for patients and their family members.
But that too is changing, though not nearly quickly enough.
Many hospitals now have ombudspersons and/or patient safety officers. Increasingly, that role exists at a provincial level.
Any institution worth its salt should have a patient safety officer (or better yet patient safety office) that proactively promotes practices that will reduce harm to patients, such as handwashing and using checklists in surgery, and that investigates every single adverse event to ensure lessons are learned and reparations made if appropriate.
The problem is that, even when it does exist, people rarely know where to find the patient safety (or ombudsman's) office. It should be as prominent (and efficient) as the returns counter at Wal-Mart.
Patients and family members also view those internal positions with some skepticism – and often with good reason. If you are harmed by a prominent physician in an institution, it is unlikely that the actions of a low-level bureaucrat in that same institution will get you justice.
That's why most provinces have some sort of ombudsperson who investigates complaints by people who believe they have been treated improperly or unfairly.
Quebec has probably the best set-up: The Protecteur du citoyen (the literal translation is "protector of citizens" but the official translation is Ombudsman) is independent and reports directly to the National Assembly. It is not a coincidence that Quebec also has the most active patient rights movement, notably the Conseil pour la protection des malades. When patients have a voice and real power in the health system, they demand, and get, institutional protections.
Ontario also has a high-profile Ombudsman but, oddly, the office cannot investigate complaints related to hospitals, nursing homes or long-term care facilities (or universities, school boards, police or children's aid societies for that matter).
The Ontario government's position that complaints can be handled within these institutions doesn't hold much water. It flies in the face of promises of patient-centered care and undermines other great initiatives to improve accountability, such as the Excellent Care for All Act. Alberta, for its part, has just announced that it will appoint a provincial health advocate and a seniors' advocate, both of whom will play a ombudsperson role.
The problem is these new appointees will report to the Minister of Health, not directly to the Legislative Assembly, and that means they lack independence.
Every jurisdiction in Canada – federal, provincial and territorial – should have an independent third party endowed with the power to investigate and report on problems within the health system.
The credibility of the system depends on it.
Those who complain that doing so will bring more bureaucracy to the system ignore the fact that doing so will bring more transparency, more democracy, and more accountability too.
Those principles are sorely lacking in our health system today and, until that is rectified, we won't truly have patient-centered care no matter how easy the system is to navigate.
André Picard is The Globe's health columnist.