Letter of Complaint

Okay, friends, here it is. This is the scathing yet informative letter that I have written to Dr. Dawson. Dr. Dawson has agreed to share my experiences with the "medical professionals" involved in my port-a-cath experience, and I am very grateful to her for that fact. Dr. D is a prominent and powerful physician at Swedish, and with her support I hope that real change will be made and not that my letter will just earn me a "Dear Patient" letter to calm me down.

Please take a look at this and email me at rykri@comcast.net if you have feedback. I realize that the letter is long, perhaps overly long, and I wasn't certain which points to shorten. I want the letter to show that:
1. The experience truly WAS horrific (through examples)
2. That I am a reasonable person (through my tone)
3. That changes must be made in the way the doctor treats patients (through the whole letter, and then through the specific suggestions at the end)

Please send me your ideas! I want to do this "right" - I want Dr. Dawson to feel so enraged on my behalf that she is willing to storm the castle for me; I want the doctors in question to feel so humbled that they immediately alter their practices. If I don't do that here, I need advice on what to change....thank you!


Dear Dr. Dawson,

I am writing you this letter, at your urging, to put in writing the experiences that I had last Thursday, July 14, 2005 as I had my port-a-cath installed. This experience was hands down the most negative, humiliating, terrifying medical procedure that I have ever experienced, and I am horrified and angered that the medical staff treated me as they did. My treatment at Swedish has, in general, been exemplary of the best possible medical care in every sense, but this one experience was horrific. I greatly appreciate your willingness to share this letter with the appropriate individuals so that they may learn from my experience and insure that no other patients receive the same treatment.

The port-a-cath installation is, I realize, a routine procedure at this hospital, and while it does not come without risks, I was not particularly worried about it. I chatted with the nurses in admitting, and then again with the kind nurses John and Tracy when I was brought downstairs, on a gurney, for the procedure. It wasn’t until I was brought in to the operating room that things went wrong for me.

The doctor came to me, and kindly explained the general procedure that would follow. This was more or less what I already understood, and of course I consented to move forward and begin. I was administered drugs to “put me in la-la land” (a quote from the nurses) but keep me awake, and we began. From here, my list of complaints is long – too long.

v Almost immediately after receiving the sedatives, I saw what I first thought to be a bug running across the drape three inches from my face. This – understandably, I think – startled me, and I called out to the nurses and doctors to remove the insect. I felt very unsettled and nervous, and the response of those in the room was laughter. I was told, “You are not getting ANY more drugs!” and was informed, eventually, that it wasn’t a bug, but a reaction to the drugs that was causing me to see spots. This may have been humorous to those present, but it wasn’t in the least bit amusing to me: I do not partake in recreational drugs, I am unaccustomed to hallucinating or seeing spots, and I was worried by my reaction. The laughter and nonchalance of the medical professionals helping me was insulting and callous.

v Because I was not a candidate for more drugs at that point, I was completely lucid for the entire procedure, and not at all in “la-la land.” I heard every conversation in the room, spoken as if I wasn’t a person who was experiencing a traumatic event (for any time that a surgeon needs to wield a scalpel into the jugular vein and chest, I consider that to be traumatic). One nurse called to another, “Oh, isn’t that one of the pens you made?” and they discussed how it must have gotten lost and she walked away from me to get it, for example. I did not feel like I was given the full attention of the staff, and it was discomfiting.

v At one point during the surgery, the surgeon rested his hand on my throat, making it difficult for me to breathe and making me feel extremely claustrophobic (as it was hard enough to be in a tube of fabric with nothing visible but blue cloth a couple of inches from my face). I called out “Your hand is on my throat – it’s hard to breathe,” and though the hand was moved I did not receive an apology. Instead, this happened several times during surgery. I would like to point out that as a patient, I did not appreciate being treated like a car. My throat is not a hood that can be leaned on – it’s an important part of my body, and if for some reason unknown to me it was necessary for the surgeon to exert force on my neck I deserved a warning, explanation, or apology.

v Some time during the surgery, the physicians’ assistant took over. I only knew this because at one point the doctor started asking questions like “Did you remember to use the saline?” and other steps of the task at hand. This also made me uncomfortable – I had been introduced to the surgeon as the person performing the task, and suddenly I had been handed over to someone else. To be on an operating table, awake, is to feel incredibly vulnerable, and this made me feel even more vulnerable…I had no idea who was touching me. To think that the second person needed coaching and that the doctor in charge hadn’t been watching her every move was even more disconcerting and worrying.

v In the middle of the surgery, I believe as the port was placed, huge pressure and tugging and pain occurred on my chest. It was very sudden, and felt rather violent – even the bed moved slightly as things were yanked inside of my body. This was terrifying. I find it unconscionable that the doctors and nurses did not give any warning that this would happen, or tell me to brace myself, or inform me that it would only last a moment, or something. I instantly asked the doctors, when I caught my breath (for I was now starting to cry) to please explain what they were doing to me. I tried to explain, from under the blue drape, that it was terrifying to feel such yanking and pulling and not know what was happening. My requests were not honored, and nobody ever explained to me what was going on.

v At some point in the procedure, the numbing started to wear off and I felt things poking and hurting me. I informed the doctors of this, and rather than a kind response I heard, “Oh. Well, I guess we’ll have to give you more medicine,” (which was then administered through shots to the chest). The tone of voice and the lack of sympathy conveyed to me made me feel that my comments were either unwelcome or perhaps simply an irritation.

v Though I attempted to communicate with the doctor, the doctor never communicated with me. There was a nurse at my shoulder most of the time (though this same nurse left to get the pen she’d misplaced) who occasionally asked me how I was. When I was crying and said I wanted to understand what was happening, she rubbed my head but never gave me answers. At that point, I felt very powerless and afraid.

v When the drapes were removed from my body as soon as the procedure was finished, the doctor was nowhere in sight. Was I not important enough to speak to after he had used his scalpels and needles on me? Did he not find reason to ask if I was okay?

v When the team was ready, I was told to move off the operating table and onto the gurney to go back upstairs. I had to ask them to wait so that I could button up my own gown so that my left breast would not be exposed to every person in the hallway. I did all but the last button by myself, fresh from surgery on one side and with a month old mastectomy and limited mobility in the other arm, while people stood and watched. This is the opposite of kindness or respect.

Is this how patients are to be treated? Is this how the doctor performing my procedure would wish to be treated? Is this how he would treat his wife, mother, daughter, or friend? I cannot imagine that he would be so cold, or that the attitude in the operating room would be so cavalier in that situation.

In sum total, I felt like, once I got on the operating table, I was treated like a “thing” and not a person. I was made to feel alone, and I was very frightened. This experience was significantly more traumatic and stressful to me than my mastectomy was, for before and after my mastectomy (during it I was “out”) I was treated with such respect and kindness that I could find hope in myself draw comfort from the caring attitudes of the doctors and nurses caring for me (thank you, Dr. Dawson). The “simple” placement of a port-a-cath, on the other hand, was a truly horrific experience for me, and it is my greatest wish that no other patient should be treated in this manner again.

It is hard work being a breast cancer patient. I must subject my body to any number of atrocities – knives, needles, toxic drugs – to heal. I am willing to submit my body to the medical community, even when it hurts, so that I may heal, for I have no choice. But I demand to be treated less like a thing and more like a person. I am enraged at the treatment I received, as I have explained it in this letter.

To have had a positive experience would have been so easy. All the “extra” that I needed was clear communication from the doctor and staff, answers to my questions, and kindness when I found myself afraid. Of these, the most important was communication. Had I understood, for example, that I might see spots and that if I saw them I should notify the doctor, I would have known that there were no bugs crawling near my face. Had I understood that great tugging would occur, I could have braced myself. Had it been explained that the physicians’ assistant would be taking over part way through for the routine part of the procedure, I would have felt more accepting of that. At any time, having my questions answered would have helped.

Dr. Dawson, thank you for sharing this letter with those who most need to read it. I believe that Swedish, in general, offers the best care that the medical community can offer, and that this experience will remain an anomaly in my treatment. I truly appreciate that you are willing to take the time to hear my concerns, and to work on correcting them so that future patients will never need to have the same negative experience that I had.

Sincerely,


Kristina Surface