Matters of Life and Death. André Picard
the front entrance of the Harvard Community Health Plan Hospital. “Nothing about me without me” is the rallying cry of many patient activists. Another description of patient-centred care is a more esoteric one: “Giving a patient a better day.” When all is said and done, that’s what health care is all about: making patients feel a bit better. But like many aspirational goals in health care, these things tend to be a lot easier to say than to do, a lot easier to promise than to deliver. Maybe a better way to understand what patient-centred care means is to articulate what it is and isn’t.
So what do patients dislike about being in the health system—aside from being sick, of course? A number of things: the helplessness, the feeling of anonymity, the discontinuity of care, the rote and repetition, being talked about and talked to rather than talked with, the waiting, and the loneliness. Judith John, a long-time health-care executive who was diagnosed with an inoperable brain tumour sixteen years ago, has, along the way, become an eloquent and inspiring patient advocate. She says that in a system that has become obsessed with data, with measuring and metrics, we often lose sight of the importance of relationships, conversation and, ultimately, the person. “When you’re a patient, there’s only one metric that matters,” she says. “Treat me like a person. Not a chart, not a number, but a person.”
The failure to do so, which generates so much angst and fear, stems from a fragmented system and from poor communication. We have a sprawling, elaborate, expensive health system with buildings and equipment and all manner of health professionals, but we haven’t quite figured out where the patient fits in. There is a broad range of views on this—a spectrum that ranges from radical consumerism, a belief that the patient is God (or, if you prefer, the customer is always right), through to classic professionalism (or, more accurately, paternalism), which holds that medical professionals have to use their knowledge to give patients what is best for them and, in many cases, to protect them from themselves.
Let’s not forget the etymology of the word patient. It means “to suffer,” or more precisely, to be silent in your suffering. Perhaps we need a new word. At the very least, we could use a new definition. Patient-centredness has come to mean “empowerment.” But it does not—or should not—mean giving patients everything they want, when they want it. Health care is not an all-you-can-eat Chinese buffet. But it’s not a military exercise either, where patients must unquestioningly follow orders. In between those two extremes is the sweet spot: partnership, sharing of information, exchange of opinions, mutual respect. These are all the characteristics you want to see in a patient–provider relationship—and in the system–patient relationship, for that matter.
While these ideals sound great on paper, they are not easy to achieve, especially in the high-octane daily grind that is modern medicine. A whole academic literature exists on shared decision-making and its complexity. Health-care providers need to act in the best interests of patients. But patients often have a view of what is best for them that differs radically from the guidelines and medical teachings. Shared decision-making is about more than agreeing to disagree: it’s a lot dirtier and messier than that. It’s about finding a compromise that respects medical responsibility and patient autonomy. It’s a delicate dance that we’re going to have to master if we truly want quality, patient-centred, appropriate care.
Lack of dental-care insurance is a gaping hole in medicare
Canada’s medicare system has many quirks, but one of the more glaring anomalies is that the mouth does not seem to be considered a part of the body. In our predominantly publicly funded and publicly delivered health system, almost all dental care is funded privately, through employer-based insurance or out-of-pocket. The result is that many Canadians—about one in four—are unable to access dental care. The most vulnerable are the hardest hit. “The system is really not working, and it’s only going to get worse unless we act,” said Dr. Paul Allison, dean of the faculty of dentistry at McGill University in Montreal.
Annual spending on dental care in Canada tops $13 billion, but only about $800 million of that total is publicly funded. First Nations and Inuit have state-funded dental insurance, at least in theory, but they often have trouble accessing care because they live in remote communities and dentists visit infrequently. Dental care is free for children under ten in Quebec and for those under fourteen in Nova Scotia. All provinces and territories also pay for in-hospital dental surgery—which usually becomes necessary when oral-health problems are neglected for long periods. And a number of ad hoc and charitable programs provide dental care to the poor, many of them run out of Canada’s ten schools of dentistry. “But these programs are a drop in the bucket compared to what’s needed,” Allison said.
Providing “free” dental care to all Canadians under the umbrella of medicare—sometimes referred to as “denticare”—is probably unrealistic in the current economic and political environment. But Allison said there is no question that publicly funded dental-care programs need to be broader and more coherent. They need to provide essential oral care to those most in need, including children in low-income families, seniors living in institutional care, people with disabilities, the homeless, refugees and immigrants, indigenous peoples and those on social assistance.
Why does that matter? Oral diseases, including cavities (which are caused by bacterial infection, not sugar), gingivitis and mouth and tongue cancers, can have a significant impact on daily functioning and quality of life. Dental problems are not merely a nuisance. Evidence is mounting that poor oral health is a bellwether for the rest of the body.
Gum diseases like gingivitis are low-grade infections that cause swelling and bleeding of the gums. The same kind of immune response is triggered as when the immune system fights off bacteria and viruses elsewhere in the body, and this inflammation, particularly in places like the arteries, can have serious consequences, such as exacerbating the symptoms of heart disease or diabetes. Numerous epidemiological studies, including a long-term study of US veterans, show that people with gum disease are far more likely to have heart attacks and strokes. Pregnant women with gum disease are far more likely to have premature and low-birth-weight babies. Diabetics with poor oral health have more symptoms. And some scientists think rotten teeth may even be a factor in cancers; after all, the bacterium H. pylori, which causes ulcers, is a key factor in stomach cancer.
Good oral health is clearly not strictly an issue of vanity. Potentially important public-health implications could be derived from better dental care. Healthy habits could ultimately prove to be cheap and effective prevention measures for a host of serious chronic diseases. Yet Canada has one of the lowest rates of publicly funded dental care in the world—only 6 percent of total spending. Even the United States has a higher public share, at 7.9 percent. Many European countries include dental care in their universal health programs. In Finland, for example, 79 percent of dental care is publicly funded.
Dr. Stephen Hwang, a research scientist at the Centre for Research on Inner City Health and a physician at St. Michael’s Hospital in Toronto, said lack of dental care is a “gaping hole” in Canadian medicare and causes significant health problems for many of his patients. “Their teeth are atrocious,” he said, and the result is that they live in pain, and it affects their nutrition, mental health and cardiovascular health. “These patients have abscesses in their mouths that, if they were in any other part of the body, we would treat,” and that’s illogical and a false economy because it exacerbates other conditions. “I’m not talking about cosmetics but necessary medical care,” Hwang said. “A lot of people aren’t getting that necessary care because they can’t afford it.”
If we want a healthier population—and a more equitable medicare system—we have to put some of our money where our mouths are.
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