Print this out and take it with you to your doctor's appointments: Breast cancer survivor's tips on how patients can take back control of their healthcare
"Advocate for your body like you would a child's, a husband's, a best friend's."
One of the best ways we can protect ourselves against medical errors and make sure we get the best healthcare we can is to speak up, loud and clear, when we are not comfortable with what's going on in our medical treatment.
How do we know when? What if we're scared or intimidated? We can learn a lot listening to the wisdom of women who have learned the hard way, women like Tonya Folks, a breast cancer survivor who wants to help empower women and their families to ask questions, keep their medical professionals accountable and have a say in what is happening to them during the scariest time in their life.
Ms. Folks offered an extraordinarily smart, clear and easy-to-follow list of health advice for breast cancer patients just starting treatment. As I read through it, I realized it is exactly what ALL patients should be doing regardless of their conditions or circumstances. I am grateful that Ms. Folks gave me permission to share her writing with you. Print it out and take it with you to your appointments.
It will help you find your voice.
By Tonya Folks
"I've read several accounts of women who struggle with a desire to be polite vs. speaking up about incompetent medical care, poor bedside manner, asking questions, asking for proof, etc. Have read them, have experienced them myself!
The vast majority of this heartache seems to come from a hesitancy to be "rude." If like me, you come to this Breast Cancer table a healthy adult all your life, you probably have no idea how to deal with an uncomfortable, even painful situation, in a medical setting.
Don't get me wrong. I do believe most people in the medical community are compassionate, educated, and on top of their game. But even the best have "off" days. Having a plan to minimize the effect on you is worth the mental toil and preparation!
This isn't just about oncologists and surgeons. It involves every single person you come into contact with during your treatment, primarily the ones who TOUCH you.
Women's health tips
Here are a few things I wish I knew going in:
1. HAVE A PLAN
Not a treatment plan necessarily, but a rough outline of how you will deal with medical incompetence, uncomfortable situations, etc.
Ways you are comfortable executing. And I encourage you to practice them out loud.
You are going to be in treatment for a while, months, years even, and for some, the rest of your life. More than likely you will run into situations in which you are certain the person is incompetent, dirty, or you simply aren't confident in their ability for one reason or another.
If you've thought about a strategy to handle a bad situation, it makes things far easier, far calmer, and more expedient to implement.
2. THINGS TO REMEMBER (every step of the way).
1. This person works for you. Period.
2. This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/doctor/nurse etc… go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period.
3. Advocate for your body like you would a child's, a husband's, a best friend's.
4. No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!
(Okay that last one I don't always say to myself....it's the gist I'm trying to relay here, lol.)
Here are some of my hard learned "rules." They apply to me, but may not apply to everyone's personality or situation. Please read them with that in mind.
1. I don't mind trainees, but they get one shot for a vein or procedure. After that, I am asking politely for an experienced doctor/tech/nurse/whoever. I will get one, or I will simply stop the procedure and leave. If in the middle of a procedure, I'm not a hostage. I will insist on a replacement and be willing to wait them out. Or worst case, leave and go to the ER.
2. Walking out is ALWAYS an option. Barring emergency medical treatment, there isn't anything that can't be rescheduled as far as I'm concerned. A few days won't make much of a difference, and even if it does, so be it.
3. If someone makes me uncomfortable, doesn't wash their hands before touching me, seems overly nervous. In short, if I feel they do not know what they are doing, I will stop the procedure immediately. Explain, in a nice way, that I am not comfortable and have no confidence in their ability, and would prefer to reschedule/have them call for a replacement/etc. Insist on it.
3. GOOD COP BAD COP
If you are a more retiring personality, and have a husband, wife, adult child, friend, WHOEVER..tag teaming is always a bonus.
You can discuss in private your idea of how your treatment should go. What is and isn't acceptable. Your advocate can then go all attack dog when some sweaty incompetent tech drips all over you while stabbing your arm with a needle at least 10 times! (What?!? True story.)
Example: My husband is great in this role even though I don't need him to be most of the time. A trainee tech tried to draw blood from my arm once, got the vein on the first hit, but forgot the tourniquet.
No blood came out. He kept pushing and pulling the plunger trying to use suction, blood into vile, blood out. Before I could say anything, (I wasn't paying close attention because I was talking to a lady beside me and his work hurt) hubby told the kid to "get away from my wife. I'm not even a medical professional and I know you don't draw blood without a tourniquet. Where did you go to school? Get the hell out of here and find someone who knows what they're doing.")
The trainee left, the boss came in, done in 15 seconds.
Now my husband may have over-reacted a tad. lol In his defense, we'd had a series of appointments that day, all of which involved trainees, and none of which went well on the first try.
But even if you have an advocate, it's good to have things in your arsenal...they can't be with you every second and fight all your dragons!
MY GO-TO PHRASES:
1. "I'm not comfortable with this. Would you mind finding someone else to do it?"
2. "I understand your points. I hear you. But, this is what I've decided. Are you willing to do it?" (Be ready to move on if the professional says no.)
3. "This is not working for me. I'd like to speak with your supervisor."
4. "This is unacceptable. I'm not going to go any further until (insert what you want here)."
5. "I'd like to see the patient advocate on staff."
6. "Look, I appreciate that you tried, but this is not working. I'd like to see someone else."
7. "Can you give me the research to back that up?"
8. "Have you seen this latest study?" (Always bring a copy!)"
I would add one more: Print out Tonya's tips and always bring a copy!
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