Patient Shaming

The saga of Ken going from seemingly healthy to needing multiple heart bypasses and having diabetes continues…

Along the journey we’ve dealt with both great and terrible medical professionals.

I’ll talk about both in this article, but first I want to know … when I say “patient shaming”, what comes to your mind? Has it ever been done to you?

I have to say that I’m impressed with our medical team at New Hanover Regional Medical Center. Out of several dozen employees who have had charge of Ken’s care, we’ve only had issue with two (given my track record with doctors that’s pretty darn good).

Ken’s got a fantastic surgeon (Dr. Nagasawa) who really took a long time to listen, hear our hearts, and understand Ken’s long-term life goals. He supported essential oils and holistic methods. He didn’t flinch from any of our hard questions, and was 100% good with us getting a second opinion.

The only time I saw him gulp a little is when he was telling us how he will pull an artery out of Ken’s arm and transplant it into his heart (how cool is that, right?) and it happens to be the left arm. Ken’s left-handed, so we were naturally concerned. Dr. N was all “it shouldn’t affect his ability to write” and I said “yes but will he be able to shoot?” (In our line of work that’s pretty darn important)

Dr. Nagasawa’s partner was equally cool, as was our internal medicine guy. Nearly all the nurses, the diabetes and surgery educators, and everyone else have been the same way. So supportive and honoring of life choices, holistic medicine, and our general quirkyness.

The two exceptions have been one nurse and one doctor.

I probably should note that five years ago, if I’d found one nurse, let alone one doctor, that was supportive I would have been doing handstands. We’ve come a long way, baby.

That said, I want to share our experience with the nurse and doctor, not to shame NHRMC or even them, but so that you can be prepared for two things a medical professional might try to pull on you, and know how to counteract them.

After our trip through the ER, Ken was placed on the cardiac observation unit because they were still evaluating the diagnosis. Although he presented with all the symptoms of heart attack, it took hours for his labs to show the enzyme changes (which isn’t that unusual). Keeping him in close quarters with specially trained nurses seemed prudent.

During that time, he was also experiencing intense pain to the touch in his chest muscles, especially over the breast bone. That’s not as common a symptom with a heart attack, but it’s not unheard of either.

The nurse told him he couldn’t have had a heart attack because that’s not a symptom. Thirty minutes later, the doctor told him it was definitely a heart attack and might be major. She shifted from “can’t be a heart attack” to implying that he probably didn’t really need to come by ambulance. I’m telling you – it was bizarre. Then, when we used some Deep Blue to help with the chest discomfort, she pitched a fit, saying “oils give me a migraine and cause asthma” and implied we just put all the other patients at risk. #bollocks

Fortunately our time on that floor was short-lived and we were sent up to the cardiac unit. We handled it by talking to her supervisor the next day. We suspect she might have been having a bad day and tried to frame our cricicism as a teaching issue rather than outrage. If we had been forced to deal with her all night, a supervisor would have been called and asked to intervene on the spot. Nurses should never diagnose or question a patient’s decision to use an ambulance for shortness of breath, exhaustion, and crushing chest pain that radiates down the arm and into the jaw producing a pallid skin color and clammy sweats … just saying. Nor should they discourage and demean the use of essential oils which are being used in many medical applications around the world.

Our only other problem came from the Cath Lab doctor.

First he shamed us for being poor and not being able to afford medical care. When I explained to him that wasn’t exactly the case, he shamed us for not having chosen to go do doctors and be on medications. He demeaned me in particular for advocating for my husband.

Then he attacked us for not wanting one of the drugs he was insisting on Ken having – even though there’s a history of adverse reactions AND causing/exacerbating diabetes is known to be a side effect.

But wait – it gets worse. He actually threatened us with Ken not being able to be treated if he didn’t agree to the drug. In the end we agreed (against our better judgment) to a similar but different drug because we felt so threatened. We were given no time to think, research, pray, or seek another opinion.

But wait – it gets even worse than that. Everything he said painted a picture so bleak, I was having panic attacks and Ken was preparing to die.

Turns out, after meeting with two surgeons, the situation is dire and yes, there’s risks, but there’s no reason to think that Ken’s likely to die and there’s no hope for the future.

Excuse my language, but that doctor was an asshole and he seemed to really be getting off on how uncomfortable and upset he was making us. He’s the MEDICAL PROFESSIONAL and Ken is the PATIENT and therefore, since the patient is obviously poor, uneducated, and an idiot, the MEDICAL PROFESSIONAL gets to call the shots.

Wrong, jackass, you don’t.

Fortunately our wonderful surgeon and internal medicine guy put us at ease – as much as possible, anyway. While we understand that there was a process for Ken getting here in this condition, we’ve never felt shamed by them. We’ve felt honored in our choices. We’ve asked incredibly hard questions and gotten incredibly hard answers. Everything has been presented as choices, and we’ve been encouraged to research, ask, pray, and make decisions. Quite a contrast. We are exceedingly grateful for them, and are confident that this partnership is beneficial for Ken’s health.

Dictator doctors have no place in medicine. It’s time that patients stand up for their rights and refuse to bow down and worship at the feet of the people wearing the white coats.

What’s more, patient-shaming needs to end. If patients do not have the right to self-directed care and patient are not allowed to choose treatment, where will it end?

Has something like this ever happened to you? Tell me in the comments!

One Comment

  • Joy Phipps

    I once stayed with a dear friend during the day so her husband could work while she was in the hospital. He would spend the night with her. She was seriously ill, but one young doctor didn’t think she was doing enough for herself. He proceeded to tell her what she should do or they would send her to a nursing home. I knew instantly that she’d shut down and would no longer fight to live, even though I assured her her family would never do that, and so did her husband when he arrived and her children. The doctor didn’t know she was orphaned as a child and shuffled between relatives. Being surrounded by family and having her own home was important to her. She never left the hospital!

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