A New Perspective on Patient Empowerment

At various points since my diagnosis with stage IV metastatic breast cancer (MBC), I've been asked what word conveys the concept of empowerment. Healthcare workers and journalists often ask this as they prepare literature for patients living with cancer.

Why is patient input so important?

Before I dig into my own reaction to this term, let me first acknowledge how thankful I am that there is an increasing effort to incorporate patient input when developing literature or programs; as so many of us often say, "Nothing for us, without us."

People who have reached out to me to get input on this concept usually get an earful. As with many things, I don't have neutral feelings on the term "patient empowerment."

How does the dictionary define empowerment?

Looking at Merriam-Webster's definition of empowerment, I can easily understand why I get frustrated.

What is the first definition?

The first definition listed is, "the act or action of empowering someone or something: the granting of the power, right or authority to perform various acts or duties."¹

What is the second definition?

The second definition is a little more palatable: "the state of being empowered to do something: the power, right or authority to do something."¹

Do you already have power?

Perhaps those who write about patient empowerment are focusing on that second definition. Maybe they are thinking of confirming for patients what they already have.

What I hear when someone uses the term, though, is that first definition. To me, it feels like the person using that term is communicating that they are in the position of granting power. This can feel like a direct hit to a patient's sense of autonomy.

And I react strongly to anyone behaving like they are in a position to give me power.

Why do word choices matter for patients?

This may feel like semantics to you, but I confess that language and word choices are super triggering for me. As a woman, I've been in quite a few situations where I've not been the one with power.

In learning how my Black husband and mixed children experience the world, I often see how their power is diminished and usually taken by so many others. Nothing brings out Mama Bear more than when I see others being treated differently, and that's exponentially increased when it's my precious kiddos.

What power do patients already have?

Here's the thing, though: we all have unique power just by being ourselves. This is the core of true self-advocacy. In a medical context, we have the power of consent to say no when a treatment intervention or procedure is unsuitable. We have the power of presence to remain in a situation or not when it's not suitable for us. We have the power of connection, allowing us to connect with others in powerful ways by sharing our stories and experiences.

How does recognizing your power impact your care?

Rather than just considering words of empowerment, we should focus on educating patients about the power they inherently have.

We are the consumers and the end users of the medical system. We have so much more power than we realize to create change, move the needle, and effectively ensure a positive experience for ourselves and others.

I believe that reveling in that power, connecting with others to express that power, and never letting someone else take that power from us is key to the entire patient experience.

The next time someone uses this word, remember that you innately have the power, and no one else can change that.