It's not if... it's when... and what kind...

This afternoon I met with some of the "Top Dogs" at the hospital where I had my colonoscopy this fall... I took a friend with me because having a second set of ears, in my opinion, is ALWAYS a good idea.  Besides the two of us, there were 5 other people there... One woman who acted as the facilitator, a woman in charge of the nurses at the hospital, a woman in charge of the gastroenterology office and the endoscopy center at the hospital, the director of patient relations, and a man who played some role in the sedation department.

They thanked me for coming in and raising my concerns... and asked me to kick off the meeting by telling them my top concerns.  I told them that I was unsure, in coming to this meeting, whether they would want to lead or if they would ask me to lead.  I told them that given my experience my trust in them, their organization, was pretty low and I was not confident that the people sitting around the table had actually read my letter, that perhaps some of them were their to fill chairs in an attempt to appease me.  I said given that, I would prefer that they start the meeting, that each of them share with the group, what, from my letter stood out to them, to say which part of my experience they want to improve upon for other patients.

They honored that request.  The first woman to speak was from the gastroenterology office.  She said she was struck by my perception of staff dismissing my anxiety, that I felt like nobody reviewed my medical records ahead of time.  She wanted to assure me that everyone reviewed my medical history.  The next woman, head of the nurses, said she was struck by how dismissed I felt when I tried to tell people I had anxiety and said that repeatedly asking patients about whether or not they are on medication is part of their intake process to make sure they know how to treat their patients and not meant to stigmatize people or stereotype them. 

I interrupted and asked which it was... if people working with me had thoroughly read my medical history or if nurses needed to ask me questions to obtain the information that was already listed.  I said that my medical record indicated the only medication I take is a daily asthma inhaler.  So if the nurses were familiar with my medical records, they would know that when I told them I had anxiety about the procedure, they wouldn't have to ask about whether or not I was one of 'those people' who take anxiety medication... because they would know there was no history of anxiety listed and no medications listed.  I said they can't have it both ways... they tried to backtrack, but realized I was right.

The first woman said she was also struck that I had said nobody had explained to me why my procedure was moved from their office to the hospital.  She said she had a hard time believing that was actually the case.  The reason, which I found out AFTER my colonoscopy, after I had called their office multiple times to get the answer, was because of my weight.  Patients over a certain weight have the procedure done at the hospital.

I smiled a little... even though she basically had called me a liar... and said to her, "Let me ask you this...we are here because I wrote a 9 page letter to you detailing my experience. In that letter I detail my efforts to advocate for my needs, and I detail my concerns.  Do you really believe that if that information had been shared with me that I would not have had many DETAILED questions about why I would need to be at the hospital, about what risks would be different for me, about whether or not the procedure is any different, and about how that would change the sedation which was my huge concern?"  She sat back and didn't say anything else.

The facilitator, in trying to direct the conversation, said that as a hospital they have to be careful.  That some patients schedule elective surgery so that they can get medications which is why they ask so many questions.  I stopped her and said I did not see the relevance of that statement, because if what they had already said was true, that they had become very familiar with my medical record, they would know that I was not THAT patient.  She acquiesced and apologized for a poor example.  At that point the head of the gastro office said that part of the problem with what happened is that I am a VERY healthy woman.  That because I do not have other health issues, I was sent down one patient path which was the more conservative approach, but had they known I was a patient who had so much anxiety about the procedure they would have used different sedation medication.  I said to her that I wanted her to clarify that... I told her that I had told EVERY person with whom I spoke about my anxiety about this procedure.  I told her that I had told my primary care doctor, had told the intake nurse at her practice, had told the nurses and doctors who were involved with my procedure that day... and asked what else I should have done to indicate I was anxious.  She said I needed to ask that it be documented in my record and asked if she could update my medical record so that the next time I have this procedure they will know to use propofol instead of whatever they used.  I told her that it was ridiculous to have to ask that my anxiety be noted in my record, that one assumes the nurses doing the intake call for preregistration AND the nurses prepping me for the procedure itself would note or at least acknowledge that fear.  I also said that she could note in my chart to use different medication next time, but that I will likely ask that record to be sent elsewhere as it would be highly unlikely that I would do my next colonoscopy with them.  They hoped I would.  I also said that since she mentioned propofol, that AFTER the procedure I was asked by a nurse in her practice why I had not asked for propofol.  They all reacted to that and agreed with me when I said that as a patient who has no history with sedatives there would be no way for me to know to request a specific drug, let alone know that a request as such would be granted. 

The head of the nurses said she felt badly that the nurse had not been more helpful in getting a hospital gown that fit.  And I said, that if what they had been telling me in this meeting was true, that people had reviewed my medical record and that they work together, and that they had clearly communicated that I was having my colonoscopy at the hospital because I was too fat to have it done at their office, that they should have anticipated that a one size fits all gown does not.  I said that talking to people about their size/weight is something they need to do.  I asked them if they thought I, or other large people, wake up in the morning, look in the mirror and say, "HOLY SHIT I'm 6'6!! How the hell did that happen, last night I was 5'2"?"  I said that people who are outside the average range are well aware of it... and I said that something THAT simple, getting a hospital gown that was appropriate without any commentary, would make a difference.

I am not sure exactly where from there the conversation went, but we got to a place where we talked about me waking up in the middle of the procedure.  Oh... I think we got there because I asked them how they determine what level of sedation is 'comfortable' for a patient, especially a patient to whom they have not listened. And...Much to my chagrin... I got emotional.  I tried hard not to, but I did... I said to them...  You had a patient in front of you whose number one fear is dying of cancer, for whom, given her family history it is not if she gets cancer it is when, and what kind.  I said that I was so terrified of being diagnosed with cancer, and that I had articulated to the sedation nurse that my biggest fear during the procedure was that I would wake up and hear them find something... and I said that was EXACTLY what happened.  That I woke up and heard the doctor say he had found a polyp and I was terrified.  I told them that despite having been that open, clear,  and vulnerable with the staff in the room that day, after again saying I did not want to see or hear anything, their response was to tell me I could watch the procedure on the tv that was in front of me...and when I repeated again that I did not want to see or hear anything, they suggested I close my eyes.  I think I saw two of the women tear up a little when I teared up, and they did apologize for that happening.

I asked why I woke up during and they said that medications effect people differently.  They said they had given me the maximum amount they could, but can now note in my record to give me more because I react differently to that medication.  They also said the medication they had given me is supposed to have amnesia effects on people, but that on some it doesn't.... case in point. 

I talked about humor, its use, and its timing.  I said that I appreciate people trying to use humor in creating a rapport with their patients, but when a patient is upset, anxious, and sharing her family history with you, THAT is NOT the time for staff to say to each other, "Did she just say her Dad had ovarian cancer? That's just not possible.." 

I also  talked with them about how their procedures and protocols are part of their routine, but for patients it is anything but.... they acknowledged that they need to do better with that.  I said that for them it is a job, for the patient it can be life or death.  I told them that this experience does not define me, but not addressing it would... I said that I could not have not let this go without addressing it.  I said that I had many concerns following my bad experience in how it was handled.  The woman with whom I had spoken was at the meeting today and she denied some of my accusations, but I looked her in the eye and told her we were both on the phone during those conversations and we both know what was said and we both know which one of us was reporting accurately.  She also denied trying to sweep things under the rug and trying to get it over... and I told her if that is the case she needs some coaching on how to communicate, how to convey her intended tone.   Her 'take away' from this experience was that at the beginning of this...I had clearly said that I was going to write a letter to share my experience and she said that she kept trying to push the process because she felt it was better to talk about the experience close to when it happened so that it would be fresh in people's minds... but said that she did not listen to what I was saying which was that I needed time to write a letter that writing a letter was my process, what I needed to do to get beyond the experience.

I told them that the letter was my therapy.  That having written about my experience was something I needed to do.  I said that I came into the meeting wondering if they were coming into the meeting with the mindset of having to deal with a dramatic patient, but that in the end their opinion of me didn't really matter. I said that I wanted to know what were their next steps.

With my permission, they said... they would like to take this experience back to their staffs and use it for training purposes.  I of course gave my permission and said to them, that at the heart of who I am, I am an educator, and if I can be of help, if they want a live person to share an experience I was willing to do that... to talk to their staff...to be their visual... I doubt they will, but maybe they will surprise me...

I said perhaps my biggest concern was the umbrella of self advocacy.  I said that their hospital has a lot of PR out there about encouraging patients to advocate for themselves... but that what they say they value and what they value are incongruent.  I said that they need to remember that patients are people.... and that with that comes emotional elements... sometimes triggers... and that they need to take time to listen to their patients, not rush through the procedures. Oh... the other part of this, the self advocacy... one of the women said that she truly hoped that this experience does not prevent me from doing future screenings because with my family history, despite being so healthy now, I needed to keep getting checked.  I told her I was grateful for my primary care doctor who will make sure I do the screenings... but I appreciated her comment...

There was a lot more, but... this is the gist... oh.. at the end they asked if I had more questions or if i needed anything from them at this time... I said I would like a written letter from them.  I said ideally it would be a letter of apology, but that I understood the position they would be in putting that in writing because an apology admits guilt of wrongdoing.. but that a letter of acknowledgement, of my negative experience, along with what steps they were going to take next given the information they learned from me and their impressions of my experience... and they said they may be able to do that.  May be able...

They offered contact info in case I wanted to reach out to someone again... and I said that brough up another point for me... that their website is not user friendly.  I said their website is strictly used to toot their own horns... that they praise themselves all over the place on that website, with articles about their new building, with quotes from satisfied patients, with their quotes about guaranteed patient care, blah blah blah... but that trying to find out where to find information on filing a complaint or figuring out who to contact was ridiculous and added infuriating for an unsatisfied customer...

Overall I feel like I can put this behind me... I doubt I will go to the same place again for this procedure and I will be asking a lot more questions before my next procedure...

Now I can look forward to vacation and not feel this is hanging over my head...

Final thought...  get the screenings... despite the bad experience I had... in the end I know I do not currently have colon cancer... and now will go every 5 years to be checked... just in case... and I will go... and hope everyone reading this gets checked out... for colon cancer or other cancers... do it!