Empowerment

General 4 Minutes

As with so many of my musings, this post is based on a conversation that began on Twitter. Some time ago, a researcher posted a request for “words of #empowerment,” from people who have been diagnosed with breast cancer, to be “used in #cancer resources,” acknowledging that some verbiage can be patronizing. There was a significant conversation that ensued and there were vastly different perspectives.

For me, this discussion is incredibly triggering, as everyone who read my tweets is now very much aware.

I became a forever cancer patient at the age of 38, having been a lawyer for fifteen (15) years (including participating as an advocate in a few dozen horrific medical malpractice cases) and having had an experience of advocating for myself in the medical setting with the birth of my second son. Suffice it to say, I didn’t view any of my doctors as having all the answers by themselves after I learned I had breast cancer and while we were super overwhelmed, I knew my role as the patient. I knew from the beginning that I would be the one making the decisions with my doctors providing recommendations and information.

Even with this information and my background/education, I’ve been in quite a few situations where there was clearly confusion about the roles of the people in the room and I’ve often found myself in the position of having to set everyone straight. But before I get to some of those examples, let’s look at the formal definition of “empowerment:”

1 the act or action of empowering someone or something : the granting of the power, right, or authority to perform various acts or duties

2 the state of being empowered to do something : the power, right, or authority to do something

https://www.merriam-webster.com/dictionary/empowerment

After I’d looked closely at the definition, I know that my visceral reaction is to the first definition. The thought that anyone would be bequeathing me power when I already have it makes my skin crawl and those little hairs on the back of my neck stand up. Giving that person who posted on Twitter (and maybe others) the benefit of the doubt, I suspect that the second definition was the more pertinent one.

And yet.

To ignore the fact that there is a serious power imbalance in the doctor-patient relationship is misguided, I think. Talking to so many other patients who have to access the medical system brings this home to me day after day. I hear so often how patients are afraid to upset their doctors when needing to advocate for themselves. There is absolutely a need, I believe, to remind patients about their power, their options, their rights, their lane.

Here’s my top five reminders to patients, no matter what the diagnosis:

  1. When it comes to YOUR healthcare decisions, YOU are the boss. No health care worker makes the decision when it comes to your body, your life, your medical decisions — HCWs propose, you decide. Yes, HCWs are often experts at various parts of your care, but YOU are the ONLY expert on YOUR body. Embrace this, own this.
  2. No one cares about your life and your quality of life as much as you do. Keep this front and center in your mind. If a practice or procedure doesn’t fit what works for you, ask about whether that process of procedure is really necessary and why. Not much isn’t negotiable these days and maybe you’ll teach your team a lesson or two about how one size doesn’t fit all.
  3. If you don’t tell your medical team about something that is bothering you, you won’t get any solutions. While it may seem onerous and complicated, find a way to ensure that your team knows what’s going on. If your appointments are rushed or you don’t feel you have time to share everything, bring a printed list or post in your patient portal or send a fax (doctor’s offices love those!!). Find a way to ensure that your team is informed and don’t stop asking for solutions.
  4. Seeking second opinions doesn’t mean you don’t trust your team. While I see two (2) medical oncologists regularly (one local and one about two hours away where I get scans and other testing), I have another three (3) medical oncologist at different locations that I consult regularly. Yes, it’s an odd number on purpose! I don’t always advertise to each team how often I consult with others, but I do it often. I’m concerned about any doctor who doesn’t want to take advantage of the expertise of others. The more smart people thinking about me and my options and my care, the better, in my opinion.
  5. Nothing is forever, get used to change. I realize my perspective is skewed in light of my experiences; at the same time, the more I want to keep things the same, the more they change. Medications, status of diagnosis, aging bodies, etc. Our bodies adjust to medications, people retire, office policies change, pandemics happen. As patients and as people, we have to be able to pivot.

I’m sure there are more things I could add to this list and I’d be interested in hearing what you think about this topic or if there are items you’d add or that rise to the top. When it comes to empowerment, I really do think it’s the most important for patients to realize and accept their inherent power. It’s not meant to be ugly or disrespectful to the amazing HCWs who work hard for us day after day, just that understanding the roles of each person in the room is key.

Health care workers propose, patients decide, period.

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Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

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19 thoughts on “Empowerment”

  2. Hi Abigail,

    Boils down to the simple fact: doctors work for us. Like you said, “You are the boss.” It’s not the other way around.

    Of course, we all know a lot more comes into play and not everyone has the background and gusto to self-advocate like you do. It’s hard, especially when we’re feeling sick and vulnerable, to speak our minds, seek those second opinions, keep asking questions and so on. And yet, if we don’t do it…

    I always remind others that self-advocacy is a skill too, and though for some of us it’s super hard, as with all skills, you’ll get better at it.

    Great points and reminders to encourage us. Thank you!

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    1. Appreciate, as always, your perspective. I do realize that not everyone has the same backgrounds and experiences. Self-advocacy, when sick and tired and sick of being tired, is a heavy lift. Thank you for reading and commenting!

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  3. I received my diagnosis at age 34, suddenly and without warning. Breast Cancer. At first I listened to the surgeon, but I knew innnately that I needed a double mastectomy and not a lumpectomy. But I allowed myself to be swayed. Only when pathology came back did I stand up for myself and learn the lesson you’ve so beautifully written about in this post. Yes, Abigail…no half measures and yes! We are the BOSS! Fast forward more than 20 years and that lesson of listening to my inner knowing has been tested and triumphed repeatedly. Great post!

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  4. A powerful post Abigail. A great lesson. You have to be your own best advocate or it won’t happen! A few years ago I was pushing my wife’s doctor for a better explanation for an issue she was experiencing, I thought my wife might be upset with me, but she agreed and the doctor then stopped using the medical gobble-gook that he had been using and spoke in real terms. You have to be your own boss. Thank you for sharing.

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      1. Oh my goodness yes! It’s one thing to be a expert and to know what’s going on. All very important, but another thing altogether to take that one step further and explain it and soothe patient concerns. A valuable skill that not every doctor has. (I don’t mean to bash. Many doctors do have it. But When you find one like that, you don’t want to let them go.) Thanks Abigail!

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  5. Great lesson! It took me a while to realize how much I needed to advocate for myself after diagnosis. Even in the midst of treatment, I felt like I was bothering my oncologist if I questioned the options I was being given. I’m not sure if some of that boiled down to feeling so out of my element as a 32-year-old completely healthy person thrust suddenly into cancer land or to my tendency to be a people pleaser. Either way, I’ve grown a lot and am advocating for myself and others these days.

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  7. In clinic one day I was scolding an older patient about his diabetes. His son was with him for the first time. At first the son looked taken aback until he started really listening and realized how worried I was about his father. His father was not taking care of himself and I was hoping that his son and family would help him more. He was staying with them instead of alone, but was not asking for help. The son and family stepped up once they realized how frail he was. Isn’t there the same power imbalance between people and their attorney at times? How did you handle that? Thank you for writing about the patient being the center and the one who makes the decisions, except when they are too sick to decide and hopefully have a friend or family member who can step in.

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    1. There is definitely the same power imbalance in the attorney-client relationship. Everyone handles that a little differently. For me, I always began a relationship with the idea of partnership, that we (my office) brought expertise in the law and the client brought the facts. Neither of us could do a case on our own, we needed both to balance.

      And thank you for reminding everyone that getting a patient’s family on board is so key.

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