I just had a short correspondence published in Clinical Otolaryngology about my experiences in the hospital after surgery. It describes the errors and challenges in the care I received.
It can be read at http://bit.ly/hAnr47

Itzhak Brook MD

I read the article and find it most disturbing. Sorry that you went through that and glad that you were aware enough to prevent most of the errors that could have occured.

Although it is impossible for family to be with patients all the time, it is a good idea for them to be there as much as possible.

Dr. Brook,
Very well stated. Fresh from the death of my MIL, from a botched abdominal hernia surgery, I witnessed many errors made by ICU staff and doctors. We organized a 24hour ICU watch to add a little insurance. We questioned the patient monitor display, the IV bags, dose rates, lab work, even vent settings, etc.

OCF main mission is to educate patients to advocate for themselves, question doctors and procedures/protocols, determine the risks and benefits of different treatment modalities, insure that all lab work and workups are done and, in general, enable a patient or caregiver (many patients do not want to know) to have a somewhat informed dialog with care providers, so the burden of medical advocacy can be alleviated as much as possible. I brought my wife with me to every doctor appointment to transcribe every word said. You can't have too many sets of eyes looking at this stuff. I also requested a copy of every medical record, scan report, etc. I even have CD's and DVD's of all of my scans. Plus patients are typically pushed into life changing decisions in very short periods to time. I truly think that the doctors, knowing that I was proactive in my care, were more careful.

It is surprising and disturbing to me that a medical professional, such as yourself, would not have received the highest quality and/or standards of care. It brings to mind the movie "The Doctor" with William Hurt. (footnote - I forgot my CD one day so the RT technologist suggested "Time" by Enya, which was the same song that they played in the movie when his cancer patient friend died - in San Francisco no less). Nothing like a little New Age music to enhance your treatment experience.

Truth be known, most of us were misdiagnosed or diagnosed very late in the process. I went to a dentist, oral surgeon, my GP (twice) before I finally got a referal to an ENT and he was able to Dx me in about 15 milliseconds. I am certain that the 1 year delay probably advanced me a stage or 2. My H&N surgeon estimated that the tumor was about 2 years old when finally properly biopsied and diagnosed.

IMHO, taking an active roll in your treatment increases your chances that less errors will be made. This is an unforgiving disease and errors are frequently fatal. Very few of us has had second or third chances.

Keep repeating the message Doc. My post surgical stay in the hospital was also replete with errors, all of which were avoidable and obvious even to someone without a medical degree. Many of them were similar to yours as I had a traech tube in so could not speak clearly
I was so distraught I pleaded in vain with my wife and son to bring me my billyclub from home so I could teach the male ICU nurse some manners. I had to settle for filing written complaints with the patient advocate. That nurse was fired and one doctor formally reprimanded.
Actually this OCF forum was my mental safety value as I typed away on a laptop about my horrific experiences. At one point DavidCPA posted a reply that had me laughing so hard I literally burst a stitch. I went in at 137 pounds and came out at 119 pounds (and this was with a feeding tube!) It's a miracle I didn't suffer any long term consequences.
Thank you for writing that letter and getting it published. Doctors take other doctors' complaints more seriously than patients'.
Charm

Being a physician did not make me immune to errors, just more aware of them. It was very frightening for me to realize that the hospital setting can be quite dangerous. I had to stay vigilant at all the time to prevent errors which was very unnerving. I had written more about these errors in my book in chapters 9 13 and 14.The book can be read on my blog at:http://dribrook.blogspot.com/
Itzhak Brook MD

This is hitting home really hard right now as I just sprung my Mother out of the hospital before they killed her.

I feel like her stay the last week has been a combination of Clockwork Orange, Hotel California, and Alice in Wonderland as we slugged thru a ton of miscommunications, mistakes and just sheer stupidity. And this is supposedly a good hospital with all this touchy feely..make the patient important stuff but...... while they were making sure that they greeted her each time they came in the room, the background stuff that was so important to her recovery was totally screwed up! And this is with two of us (one an RN) staying 20 out of 24 hours with her trying to watch over her. SCARY!

Makes you wonder how many patients die because this goes on.

Deb

"IMHO, taking an active roll in your treatment increases your chances that less errors will be made."

I cannot agree with this more. My father is a physician and I've always had the utmost respect for doctors . I was always very trusting of what they told me... until I got this cancer. I was misdiagnosed for many months - was made to feel like a hypocondriac while in absolute agony and finally was referred to an ENT who also diagnosed me quickly. From there I went into the hospital where there were many bloopers made- too many to mention. For the rest of my time in the hospital I was completely on edge and could not relax because I felt if I did that I wouldn't be taken care of. It was nervewracking to say the least. I had no idea how tough it would be.

It is especially difficult with the type of surgery for H&N because we often can't speak in the hospital. I was exhausted trying to communicate my needs via writing.

"It is especially difficult with the type of surgery for H&N because we often can't speak in the hospital. I was exhausted trying to communicate my needs via writing."

Well yes, when the patient is not capable of talking, making decisions, or deciphering what is happening..it is a scary proposition. And add to that the patient not remembering what has happened or how they felt even an hour before...whew.. Of course the medical personnel are trained to talk to the patient and my mother would answer their questions in a very lucid manner..problem was..her answers were totally different than what had transpired and we would have to correct her every time.

We were exhausted trying to keep everyone straight on what the true story was.

Alex and I also had dramas. But we were made to feel it was somehow our fault. With so many patients waxing lyrical about their care, how great the doctors were, how caring the nurses were etc, the unspoken question was "how come you two are having such a tough time?". My response at the time was that I could see the things going wrong whereas maybe the other patients couldn't. Even on this forum, I was reticent about listing the errors and stupidity we were subjected to. Even so, I couldn't help wonder that maybe my proactive stance in confronting the doctors and nurses contributed somehow.

Now I know rationally this is untrue, and if I hadn't got the patient advocate involved and threatened to take my complaint to the area health board, there is a fairly good chance, Alex's chemo/radiation treatment would have been interrupted with fatal consequences. The up side of the whole debacle was we managed to stay on track for chemo/radiation, get the original doctor removed, receive care from senior nurse on shift only and get EVERYTHING documented and reported to me every night. There was also some small satisfaction in seeing the nurses and a particular doctor run the other way when they heard me clicking down the hall.

Karen,

Good for you to find the strength to do this..its so very hard to step up and question...go against the tide..etc. You do feel as though you are then labeled as a troublemaker and have less of a repore with the staff but so be it.

And here we go again - new facility, new doctors, new nurses and aides and my mother who can't remember where the call button is or how to turn on her light or TV....SO HARD!

Deb,

Good for you to speak up in more ways than one to take your mom to a new facility. We had to change care facilities for my great grandmother years ago.

It is amazing to me how some nurses are when treating patients that are not able to speak. I had some not so great experiences while being able to speak and in the hospital for high blood sugar or loosing too much weight. While in the hospital for high blood sugar I was in pain and hit the nurse call button only to be ignored for almost 45 minutes. Thankfully my mom had my pain meds on her and she gave me some. That is a hospital NO NO and they told her that she needed to take them home but she was also not going to let me go in pain any longer without someone helping. Thank God for those who have helped us along the way.

We all need to be better advocates for ourselves with our doctors. If we don't feel comfortable about something either we or someone in our family needs to speak up.

Harrowing stuff, Dr. Brook. Thanks for posting it.

But I have to step in and testify about my experience with the entire process, beginning with my diagnosis (which is to say, the first FNA done of my enlarged lymph node turned up negative for SCC - but I've read that this isn't necessarily uncommon) and notably including my stay St. John's Hospital in Santa Monica, CA, if only to balance out all this frightening - and certainly important - negative stuff.

I had complications after my neck dissection necessitating an emergency return to surgery for a tracheotomy, followed by 6 days in the ICU and another 5 or so in a regular room. I can't say enough about the staff: they were great. In fact during those frightening 6 days I can remember only one time when the nurse took a bit more time to get to me when I was pressing the call button... and she apologized profusely, telling me that she had been doing a procedure in the next room.

My primary doctor also just seemed to be around a lot, taking personal care of me. A great guy.

Of course not being a medical person I have no idea if corners were cut, things omitted; if I came close to the edge at any point due to errors or mistakes, etc.

But my experience as a patient, and my full recovery afterward, are I believe strong testimony to the quality of care I received. If only everyone could have an experience as positive!

David 2

I had surgery 1 year ago Sunday. I was able to speak but even then begging for help in a couple of situations I was ignored. I wrote a 3 page letter to about 12 different individuals. They called to be sure I wasn't going to sue and that ended that.
Then they literally almost killed me when they put me in to control the pain. I was so high on pain meds I couldn't advocate for myself. I love my husband but he isn't medically in tune at all. Ultimately I was in ICU for 11 days and intabated for 7 of those days. Had he not finally stepped forward to demand a specialist I would not be writing this.
Someone I know works in a lab at a sister hospital if you could hear the stories you would wonder how any of us get out alive.

There is some real scary stuff out there and a lot of people don't know about. I find it interesting as they would probably not like to be treated as they are treating other people. I think part of nursing or Dr. schooling is to actually be a patient where they are not known so they don't get special treatment. Might open some eyes.

After my flap surgery and being on a trach in the ICU with a G tube I had an unfortunate accident. One of the nurses came in and was probably giving me some meds or something through my tube. My best guess as I can't fully remember all of the events leading up to it. ;-) But when he was cleaning up he was doing it quickly and actually pulled my tube out! They spent almost the rest of the day trying to find another one to put back in. All this knowing that this is how I get my food, water and medicine. I swear I wasn't getting it. And then the one they put in was like the longest tube I had ever seen and became quite a pain. That was until it burst when we were trying to clean a clog. Then it was a trip to the hospital to get a new one.

I just have to say my most memerable experiance following 3 surgery's to remove parts of my tongue is, when I needed help they told me to push the nurse button. Then they would come back and say "can I help you?".... I CANT TALK!!!!!! didn't they get it?

I will be well armed with my iPad when I go into the hospital and pens and paper just in case! I used to be a nurse - And one of the reasons I stopped is because it's next to impossible to nurse in a hospital setting. I mean to truly your job responsibly and with compassion. I was so harried and so concerned that I might kill someone by accident (it's easy to miss something when

Sorry - posted by accident - it's easy to miss something when you have too many patients and not enough time.

Cheryl, I have 5 nurses in my family, had 2 cousins that were Drs and your life is for sure a rough one. I have a young friend, best buddy to my youngest son, that stops to see me once a week to check and make sure I am OK. Yep. the Medical life is a rough one.

I have read most of it, and I know your pain, which is very sad. I was almost done with nursing school when i was diagnosed. I had one clinical left and then i would have been able to test.
And man did it just tear me up inside to see these "trained" hospital personnel keep making these mistakes, and I would try to help them, cuz i knew they were always short staffed, and they would either blow me off and do it wrong anyways, or they would just walk away and leave me sitting there needing help.

One nurse even took my call light away because I kept telling her my trachea was burning cuz i had vomited, and doc said if i had vomited there was a protocol to follow, and she refused to do it. So i kept pushing my button and the 5th time of me pushing it, she came in and shut it off and said "there isn't anything I can do for you maam!" and hung my call button up on my curtain so it was out of my reach. And when shift change hit, my little notebook had 3 full pages for the poor next nurse to read, and I was in tears and having an anxiety attack and had vomited on myself 2 more times, but because previous nurse had took my call button away and i couldn't stand up cuz all the tubes, i had no choice.

It just breaks my heart to know that people have to go through stuff like that.

I know a lot of the things that were not being done, or done wrong for me was my poor nurses were always running short, and often had 4-6 patients in ICU.

But because I didn't advocate hard enough, I ended up with a staph infection in my neck incision, and cdiff when they put my peg tube in.

I am hoping i never have to go back, and if i do, i am going prepared.

Hope you never have to go through this again either and good luck with everything!!

bethers, I would have been P*ssed. I get being overwrought work wise but to be left without a way of calling the nurse is negligence.

My crazy/distressing experience in ICU:
While still "under the influence" as I began to come to I kept pressing the red light on the device on my finger which I was too doped up to realize was the oxygen monitor. My feet were restrained and in pressure cuffs because I had had the fibula replacement of my jaw. I wanted to turn my other foot out at the ankle so that my hip could be rotated slightly and have some kind of support placed under the small of my back, both to ease severe pain from being flat on my back which has some slight deformities. I will never know if I had been told where the call button and morpine pump button were and was too medicated to remember or was not told but it was 2 days before I could communicate that need through coherent writing. Adding to my confusion was that the clock was broken so there was no way to judge how long this was going on. When I was more alert I kept trying to get the attention of the nurse at the desk sitting at th window to my room who was supposed to be monotoring me but she was busy on the computer. Finlly I was able to get help from a nurse on a susequent shift.
I had to ask to be bathed several days post surgical - neither a hygenic nor comfortable situation. It seem that this is far from a priority in ICU.

Wow - you've been through a lot Malka... kudos to you on your cancer free status. It's sad that you have to ask to be bathed. When I was nursing even in intensive care we would give a regular bed bath. Or have a student do it, with supervision. I know nurses are overstressed - and overworked, but frankly there should be a level of care that is maintained. Basic cleanliness is good for the patient and their wounds as well as the fact that it promotes normalcy.

I have told my husband that post op... I want only him and my kids to see me for the first 3-5 days... I will not be able to talk, I will likely be a mess and on pain meds - There is no point for a friend to come visit... even distant family. If my dad were here I would likely tell him to come on day 5 too. My inlaws as well. What is the point of seeing them if I am non responsive? Plus a room full of people who may or may not have colds etc... is a bad idea anyway. When I was nursing we were taught to be the patient's advocate - how can you do that when you can't even administer proper care...

While in the coma, I must have been a wild man there, I awoke a few days later than I should have. I was bound from my hands down to my ankles. The 1st thing my Oncologist noticed was that I had a nice open wound about 4 to 5 inches long. He wanted to fire the whole crew that took care of me, but that was only a handful as I was Quaranteed in a lead shield. I talked my butt off so noone would be fired. I told him maybe I wasn't my self but was acting strange. His arguement was that I was a patient and should have been treated much gentler as I was a patient and should be treated as such. We did come to an understanding, and no one was fired but sure did get lectured. I still have a 4 inch scar and much pain in my feet even tho the right ankle was by far the worst. Yep, I still hurt but fell good about them not losing a livelyhood. I have some damn funny looking marks on my ankles too. LOL But hell, my whole body is one large scar from being laid open so many times over the years. One of my nurses was my Gal friends step mom and for a long while she hated me not knowing I protected them. Life goes on and on.

The reality of the situation is - every patient is an individual and should be treated as such. Here are always difficult situations - but taking the easy way out and tying someone up is not the way to go unless absolutely necessary and then precautions have to be taken to prevent injury to the limbs that are restrained... Your dr. Is right -!they deserved some of the trouble they got. And your friend's should have treated her experience as the learning experience it was. If she got in trouble from the dr. It was because something had been done incorrectly - its not your fault!

Medical errors are a serious problems and can be potentially life threatening. You can read about the errors in my care in:

http://www.disabled-world.com/disability/publications/neck-cancer-patient.php

The best way of preventing such errors is to have family and friends be with patient and not hesitate to challenge their care givers.

Itzhak Brook MD