Blog

Updated May 17, 2021

“We need to support the journey from passive patient to patient leader. “
– Annette McKinnon

How do you include the voice of people who live with illness — chronic or otherwise (patients) —in the decisions that affect how healthcare is provided? And how do you do that without these voices being used and subsumed by the professionals who work in healthcare?

Last week, Annette had a terrific rant about that particular topic, focusing especially on how the terminology that people who live with illness use to describe themselves eventually inevitably becomes hijacked by professionals. She asks “Where is the attitude that patients are part of the team in healthcare, that we are partners? Why are we always asked to participate inside a pre-determined frame? When will we see co-design of new policies, and ultimately co-production?” All excellent questions that got me thinking. And when she ended with the rousing call to action that started this post, I had to jump into the debate with my perspective.  

Which is about language and power.

I believe that as long as we use the word ‘patient’ to describe ourselves, we will not have any kind of meaningful participation in healthcare. I believe that this word is an obstacle to being seen as active influencers, or even stakeholders in the process.

I straddle two worlds, those of health advocacy and disability advocacy. In the latter, there has been great efforts made to change the language describing those of us who live with a disability. Instead of crippled, the afflicted, handicapped, special needs, or invalid, the recommendation for several decades was to use, simply, person or people with a disability, which puts the person first and the disability second. That community is now moving to proudly embrace the identify, referring to ourselves as  a disabled person. But the key is this: the terminology is driven by the people who are affected.

The term patient doesn’t do that. ‘Patient’ was defined by the medical fields and identifies you solely in relation to your illness, specifically in connection to being in receipt of healthcare. And that gets all tangled up in the way health professionals view patients.

Being a patient is an inherently passive state. Well, if you’re a reasonably empowered patient — or ePatient — you may disagree vehemently with this assertion, but bear with me. One of the common experiences of someone who enters the medical system to receive care, is the loss of autonomy and identity. Although there are many good doctors out there who work as teams with their patients, so many others do not. Which is not necessarily their fault. The entire system is set up to remove the patient’s identity, leaving them a case or with the label of a particular illness (e.g., the broken femur in Bed 3). The goal of the system is to make sure that the recipient of care follows along, is in fact a compliant patient. In other words, you do what the doctor tells you to do.

Medical professionals can’t help it. Neither can the people who work in the pharmaceutical industry or in hospital administration. Everything they do is for the patients, but none of them do so using a customer service model. None of these is considered a service industry, instead they are highly paid experts (well, maybe not the nurses who ought to be paid more) who develop and implement care, procedures, medications to treat an illness or condition, but not necessarily the person.

Because there are no persons with illness within this system. There are only patients. And patients are not stakeholders. They are recipients of care.

Using the word ‘patients’ to describe ourselves thus uses the language of the system and people who control healthcare — the aforementioned medical professionals, healthcare administrators, and pharmaceutical executives. And when you are talking about a system controlled by certain people, their definition is the one that rules the day. Therefore, using the word ‘patient’ will also convey the meaning of the word defined by the people in power. Which, in the case of ‘patient’ as used in that context, is incompatible with empowerment, being a stakeholder, or an active influencer.

In the disability community, it took the deinstitutionalization movement of the 1970s to start the process of people with disabilities being seen as people first, and people with the right to make their own choices. It involved a wholescale rejection of the medical model — in which medical professionals made the decisions they believed were best for the poor crippled people — to the consumer model, in which the person with a disability consumes a variety of services, and is in full control of their life. At least, that’s the theory. There are still moments when it’s obvious that we have a long way to go, but that’s not the point of today’s post. Today, let’s stick to the theory.

As patients, we exist within the quintessential medical model. Expecting this system to be able to treat us as two different kinds of patients — the individual who receives care and the individual who is a stakeholder and active advocate — is a losing battle. When a system as huge and complex as the healthcare system is built in a way that views and treats individuals who have an illness as the recipient of care, trying to make that system see us in that other role, as active partners, is impossible.

So what’s the solution? I believe it is to begin to take control of who we are and what we do as stakeholders in the healthcare system. To adopt the consumer model whenever possible and perhaps even in the doctor’s office. And it begins with changing the language with which we describe ourselves. Instead of finding a new term to describe ourselves that use the term patient — as Patient Advocate and Patient Navigator have both been absorbed by the system to describe professionals helping recipients of care — to something entirely different.

I never use the word patient to describe myself unless I am in a doctor’s office. Instead, I use the term ‘health advocate’ in the contest of my work as a stakeholder and an empowered person who lives with chronic illness.

Are there better terms? I’m sure there are. What do you think we should call ourselves? Or does Patient work for you?