Patients ’R Us: But do we have to be all the time?
Are you a patient? Not when you’re in your doctor’s office, but right now, as you are reading this?
Ten or 15 years ago, very few people would have readily responded “yes” to this question. Even those living with a serious illness would likely have been puzzled if anyone had suggested that being a patient could be as much a part of their identities as being Canadian, or a lawyer, or a member of a particular community. They might live with heart failure or arthritis all the time, but they were patients only from time to time.
But today, more and more people see being a patient as a part of who they are, whether they’re in a hospital or a supermarket.
There are many signs of this. Consider the proliferation of patient groups, some specific to a particular diagnosis and some more general, such as Patients Canada, which was founded in 2011 mainly to advocate for more patient-centred health care. Then there are the “celebrity” patients, such as e-Patient Dave (Dave deBronkart) whose books, Ted Talks, and website (which “advises on branding and product from the patient perspective”) are very popular. (Tellingly, he remains ePatient Dave years after his cancer was cured.) And there are the hundreds of thousands—yes, hundreds of thousands—of patient bloggers, including Amy Tenderich who calls herself a “patient pundit” and whose Diabetes Mine site is hugely influential.
Today’s newspapers and magazines are awash in stories of people contending with illness or the health care system. Health care organizations themselves reinforce the message that once you have used the system you are forever a patient. Politicians, ever alert to trends, have begun to see and speak to the patient they think resides in every voter. Donald Trump and Kathleen Wynne may have very little in common, but both have proclaimed their commitment to putting “patients first”—Trump in announcing his intention to lower drug prices and Wynne in naming perhaps her government’s most high-profile piece of legislation.
The world of health research, meanwhile, is undergoing something of a revolution. In 2013, the Canadian Institutes of Health Research (CIHR) launched its Strategy for Patient-Oriented Research (SPOR) which mandates the inclusion of patients in the conduct of research. For example, patients help choose both the questions that drive the research and the outcomes to be measured. What’s remarkable is that, according to SPOR, “patients” include all “individuals with personal experience of a health issue and informal caregivers, including family and friends.” Can you think of anyone who, by this definition, is not a patient?
This increasing focus on patients and the closely related growth in the number of people who see themselves as patients have undoubtedly had good effects. Patient stories, for instance, are getting more attention. Some have changed the way people—clinicians, politicians and the public at large—think, feel, and act. For instance, the stories of Sue Rodriguez and Donald Low have had a large impact on the debate, language, and law related to what we used to call assisted suicide and now refer to as medical assistance in dying (MAID). And practices that were entirely system- or provider-focused (for example, giving many patients the same clinic appointment time, despite the considerable inconvenience this caused them) are now being replaced by more patient-focused ones. Patients can even read and, in some cases, contribute to their own medical records.
But there have been costs.
Some people who use the health care system (for example, many with mental health or developmental conditions and many who use rehabilitation services) are uncomfortable with and sometimes reject being called patients. They think being so categorized misrepresents them as wanting or being in need of a fix or a cure. And there are still many people, some with serious chronic conditions, who see themselves as patients only when they are receiving care. Being called a patient at other times feels to them as if it keeps them tethered to a diagnosis or a health care world they find confining.
Other people, probably in reaction to capacious definitions of “patient,” have sought to distinguish “real” or “authentic” patients. They have created classes of patients, sometimes based on diagnosis and sometimes on perceived severity. Prominent blogger Carolyn Thomas has emphasized the difference between patients with acute conditions and patients with chronic conditions, saying that “acute care is NOT… what actually being a patient is all about at all.” She cited the view of some experts that chronic patients can be classified as “high risk,” “rising risk,” and “low risk,” but noted that within each of these categories are sub-categories, one of which is made up of heart attack survivors who “become the frequent flyers of the health care system.” The intention may not be to diminish some people and their experience, but it’s hard to think that isn’t an effect.
Perhaps the most serious cost is a less obvious one. The more we think of ourselves in relation to our status as patients, the more we risk narrowing our perspectives, our responsibilities, and—eventually—our very selves. If, for instance, we are asked what is most important to us as patients, we may answer exclusively in terms of treatments and wait times. But if we are asked what is most important to us as citizens, we are more likely to think beyond our own individual needs—perhaps of the health care needs of others—and of needs and values just as fundamental as good health. Some will think of social justice, others of peace, others of the health of the planet.
Isn’t it better for all of us, even as we adjust to a new diagnosis or await surgery, to see that our health, as individuals and as a society, is not just about our experience as patients and the quality of our health care? That it is also about the quality of our air and water, the availability and affordability of good food, the security of our housing, the degree to which we experience hatred or discrimination, our access to good education and meaningful work, the degree of inequality in our society, and the presence or absence of love in our lives?
Perhaps, then, it’s not a bad thing if, like me, you balk when asked if you are a patient. It’s a simple question that can, and maybe should, be hard to answer.
Frank Gavin is the chair of the Citizen Engagement Council of CHILD-BRIGHT, a CIHR SPOR national research network focused on children with brain-based disabilities and their families.