Form over Substance

There are usually good reasons for doing something the same way every single time.  Protocols and procedures are extremely helpful, especially when someone’s health is on the line.  When I was practicing law, I had lots of policies and procedures, especially for new hires and the people at the front desk.   When there are employees who need to be trained with bright line rules, its much easier not to give said employees the room to think things through and adjust to the patient/client in front of them.


Now that I’m on the other side of the equation, I really do have a very different view. Some of those form over substance rules get pretty freaking irritating when it happens over and over and over.  Everyone needs to think about how they are being experienced by the person who is the patient/client from the front desk person all the way to the person/people running the show.

Here are some of my pet peeves, in no particular order:

  1. I absolutely understand that if someone is pregnant, then certain tests are not possible because of danger to the baby.  However, if I tell you that I had a complete hysterectomy in 2017 and two minutes later, you ask if I’m pregnant, it just seems like you aren’t listening.  Also, that’s in my file.
  2. If information like medications and surgeries are in the medical file, why do I get asked every single time I come in, what medication I’m taking and how many and what kind of surgeries I’ve had?  Could someone take 2 minutes and look at the file?  I have a timeline and charts of medication and treatment for new doctors, but if I’m an established patient, I don’t have the patience to go over and over the same things that are in my file. Plus sometimes going through that list is triggering and ptsd symptoms are no joke.
  3. I’m 100% on board with checking for new allergies, especially drug allergies, but if you ask “what kind of allergies do you have,” how am I supposed to know if you want to know if I’m allergic to dust mites or medication or latex?  Being precise is helpful and means I don’t have to list things that you don’t care about.
  4. I’m in pain all the time.  ALL.THE.TIME.  When I’m asked if I have any pain today and I answer, yes, I deal with pain all the time at a level 3-4 on the pain scale, a little chuckle is not the appropriate response.  I wasn’t trying to be funny by saying I’m in pain all the time.  Seriously.  I’m in PAIN all the time.  Not humorous and certainly not for someone who isn’t me to chuckle about.
  5. I had a LOT of surgeries in 2017.  Sometimes I’m at a place in my treatment and my mental health that I can joke about it.  Sometimes I can say, 2017 was a shitty year.  Because it was.  However, no medical provider gets to quip, after I’ve finished going through all the surgeries I had in 2017, that 2017 was a bad year for me.  I particularly hate the southern “well, bless your heart, honey.”  Nope. Nope. Nope.  You don’t know me, you don’t know what it was like and if I’m not joking about it, you can’t.

Again, I get that patient safety is important and that some of this information is necessary; however, I really do think that applying basic humanity to the thought process or the actual experience of handling these questions can really inform the substance.

I have started asking various support staff if they would handle the conversation the same way if they were talking to their mother.  I get a lot of weird looks, but I’m used to that.  Teaching empathy is something that I’m trying to apply to my parenting and I figure that I can do that in other places too.  Each time I’ve asked support staff this question, they stop and act far different.

Terminal cancer is not fun.  I will be in treatment for the rest of my life.  These conversations aren’t isolated, they happen all the time.  I go to the doctor’s office all the freaking time. Just a few minutes is all that’s needed to ensure that the real substance of what needs to be known is obtained rather than just ticking off a checklist.

14 thoughts on “Form over Substance

  1. I’ve had bilateral mastectomies. Don’t ask me if I check my breasts. There’s nothing there to check.

    However, sometimes in my medical role, I do find myself checking over things to make sure I’ve got the information right and straight in my head. I do explain what I’m doing and why I’m doing it.

    Liked by 2 people

  2. Thank you for sharing your experience with well-meaning professionals and the impact their words have during your MBC journey.

    I am a patient safety professional and dental specialist on the MBC journey with you.

    I, too, have had some stunningly painful questions and words hurled my way.

    In my humble opinion, there is at least one good thing these experiences provide: Evidence for objective opportunities for improvement.

    Bless you for speaking up and sharing your experiences with others. You are helping many you will never even heae from or know about. You are helping to lessen the sting of this disease, in a major way.

    Liked by 3 people

  3. I’ve been vocal about some things that bug me. I correct doctors and nurses when they talk about “my” cancer. It’s a tiny word, but I take no ownership of it. They can use the word “the”instead. It isn’t the same as talking about my eyes or my smile. I also correct them when the “fighting cancer” phrase is used. Sometimes that fighting imagery is useful, but I get more out of imagery that suggests I’m living well (or well-ish) with cancer than being in forever battle mode. Both are language tweaks that give me a mindset I find works for me. Great post. Thanks for sharing!

    Liked by 3 people

    1. I’m glad it’s not just me that doesn’t use the phrase “my” cancer. I know quite a few people, who have / have had cancer, who DO say “my” when talking about themselves – so far, nobody has said that when referring to me, though!

      Liked by 2 people

  4. Regarding number 1; It was around 1998 when a nursing assistant was going over the questions with me and asked the date of my last period. I replied in 1973 before I had a full hysterectomy. She then asked, “Are you pregnant?”

    Regarding number 3; I was asked about allergies, but not about prescription meds that I cannot take. In November, my then oncologist became furious with me. He prescribed Tromadol for pain caused by necrosis in my left hand. In 2008, I was prescribed Tromadol and had excruciating headaches. I did not get the prescription filled and told him why. He wanted to know why it wasn’t on my allergy list? (sigh)

    Regarding number 10; I always rate my pain at 10 and tell them whenever I’ve had the same pain more than 3 days, it’s a 10.

    Liked by 3 people

      1. I’m sorry you had the experiences too. One thing for sure is that it teaches us that information technology is only as good as the person making the entries, and only as good as those who use it.

        Liked by 2 people

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