So. I was so happy for standing up for the husband by complaining to the patient representative about the poor care he had received at the wound care center at my local hospital. If you recall I kept telling the doctor that his wound smelled bad and she kept telling me she didn’t smell it so I took him to a different doctor who cultured his wound and found a staph infection. I just got the letter from the patient representative that says “while care was found to be appropriate based upon your clinical condition at the time of presentation, we truly apologize for any miscommunication experienced during this very difficult time“. I find this to be condescending and incorrect because the appropriate care for a staph infected wound would’ve been antibiotics which he didn’t get until I took him to a different doctor in a different hospital so I would like to go over the head of the patient representative and write a letter to somebody who will be alarmed at the way he was treated with disregard. Do you know who the person I should complain to would be?
(Then I sent a copy of the letter) Look at this gas lighting bullshittery.
THIS WHERE MY LIGHTBULB GOES OFF- when the response is to rewrite how the entire doctor patient relationship exchange/interaction went down then…. They’re hiding something. It reminded me of when after my EVERYTHING WENT WRONG c-section how the l&d POS nurse responded to me joking about how much I was talking during the botched surgery (I was giving the husband a play by play since I COULD FEEL THE ENTIRE PROCEDURE) she said “Oh? Were you talking? I didn’t hear anything” and that was how I knew I was the victim of medical malpractice then and that is how I know it now.
The more I thought about how condescending their letter was the more I realized that it looked like an attempt to not take any responsibility for anything and I showed it to a nurse friend of mine and she said call a lawyer this is neglect. I’m going to look for a lawyer.
The really really stupid thing here is that if they had sent me a letter that said they were sorry about the way we were treated and if they had said something in place to ensure that no one would be treated in that same way I would’ve just folded that letter up and been very happy and so proud of myself that I had stood up for all the future patients of that hospital wound care center. But they went into denial and in my book denial equals guilt
Just got back from the new wound center and I figured out the thing to say to tell the doctors that you aren’t aggressively treating anymore.
Scene: wound care doctor is telling the foot doctor about husband’s blockage and possibility of doing another attempt at opening up that artery. He looks at me and I say “I would love to be able to do that procedure but unfortunately general anesthesia is too much of a risk for him. He has had lasting effects from the first attempt and is still disoriented. To this day he is unable to get his bearings and doesn’t recognize his surroundings. It’s a quality of life issue”. IT IS A QUALITY OF LIFE ISSUE. There were three doctors in the room (wound care, vascular surgeon and podiatrist) and the second those words left my mouth all three straightened up in unison and I could see the light bulbs going off over their heads. Then the wound care doc spelled out how she was going to continue to care for him without doing anything drastic. It was literally perfect.
I am really grappling with the concept of “palliative” care and hospice care and I am pretty sure it boils down to is that this feels like my choice and I don’t want to have to make that choice. I want things to happen that do not put me in a position of needing to choose. I have that “I just want to do the right thing” hang up and if I am making decisions then there will be options that weren’t taken and I prefer to just handle a crisis after the fact instead of navigating it. It’s one of the few moments in time when I don’t want to be in control.
Life is so hard right now.
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