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How do you handle it when your DR/nurses mess up? (Mistake leads to infusion reaction...)

Anonymous user (not verified)

I am undergoing maintenance therapy every 2 months for follicular lymphoma with the newer immunotherapy drug, obinutuzumab. This drug has to be given at a slow drip EVERY single time due to the strong infusion reactions it causes (unlike rituxan which can be given more quickly after the 1st infusion). 

This past week, however, the nurses made a mistake when they read the pharmacists titration schedule and gave the infusion at least 2x the speed that it was supposed to be given. I was unaware of the mistake until the end of the infusion. My blood pressure dropped to 78/55 and I was having trouble waking up (I am always sleepy from the benadryl they give me, but this was much worse...the nurses even cut off my name bracelet and taped it to my blanket because they were having trouble waking me each half hour!). I was able to sit up but fell back asleep almost immediately. When they woke me up to let me know I was done, I looked at the clock. I was done almost 2 1/2 hours early! I mentioned that I couldn't believe how early I was done, but still being quite foggy-brained, I didn't realize why. The nurse started to look back at my previous schedule, and as she was checking it, I started to feel a little funny. I tried to take a drink of water but couldn't swallow. My chest started to feel tight and make me cough...it was similar to the infusion reaction I had with rituxan,  but a little worse. Thankfully the reaction settled down after an hour or so. One of the nurses explained that they had a different pharmacist than they were used to and that they misread the titration schedule. They told my DR, who then came to check on me. She was pretty hard on the nurses about it. 

I love these nurses, and I know everyone is human and makes mistakes.  However, this is not the 1st mistake they have made. My family has reacted much stronger to this situation than I did, as I just figured it happens, move on etc. It could have been much worse!

Has anyone else had a similar situation? Or mistakes made in your care?How did you handle it?

Evarista
Posts: 253
Joined: May 2017

So sorry that this happened to you Willow and glad that it was not catastrophic.  I had patient mix-up with my chemo during one of my 5-day inpatient rounds:  almost got someone else's chemo.  Fortunately, my hospital follows a drill of multiple cross-checks before opening the infusion line and the error was caught at the very last cross-check. Mine was a double-error: 1st a mislabel in one of two places by the pharmacy and 2nd a skipped step by a nurse in the cross-check.  I am not surprised to hear that your error was a pharmacy error.  People do not always realize how incredibly important the pharmacy is in determing chemo dosing!   So, how to handle?

My incident was taken very seriously by the hospital from the get-go. An incident-report was filed by the nursing team. We met immediately that night with the pharmacist on duty.  We met the next day with the pharmacy director.  We met with the Nurse Manager for the floor and my medical team. Procedures were reviewed and as a result of this incident, procedures were actually changed.  Team meeetings were held both in the pharmacy and on the floor to bring all relevant staff up to speed on the incident and the changes in procedure.  This was treated as a very big deal and it was clear to us that all the nurses on the floor knew about it. We did not have to instigate any of this...The hospital took it very seriously.

IMO, you should follow-up to be sure that an incident report was filed.  Neither the nurse nor the pharmacy should be cavalier about this mistake. Request a meeting with the infusion center director to determine what procedures have been put in place to prevent such an incident from happening again.  I would have thought the nurse would have more familiarity with the infusion rate for this newish drug. The goal here is not punishment; it is insuring that drugs are administered safety and correctly.

Going forward in my treatment, I made sure to check every single chemo bag that was hung for me.  Even at 2 AM, I woke up, followed the cross-check, and insisted on seeing all labels on the bags.  I even memorized the amounts of the drugs so that I could be sure that it was correct (amount is based on individual body weight). Good news was that there were no more mistakes. Hope things go better nex time for you. 

Anonymous user (not verified)

Wow, I am impressed with how seriously they handled that. I don't know if a report was filed in my case. When my doctor came in to check on me, she looked at the printed out titration schedule and told the nurses she didn't see how they misunderstood it etc etc  and then she sat down across from me and was typing something out on her phone, looking up at me every now and then. She said "I hate these things" (I have no idea what she was doing or what she was referring to) and then she said "she's fine, she can go home". It was handled so oddly...the nurses blamed the pharmacist and the doctor blamed the nurses. And I was just kind of left sitting there wondering what was going on. 

I appreciate your insight into this. I had always said something to the nurses beforehand about it needing to be given slowly, but felt bad, as if I was insulting them...but I always had this feeling like they weren't careful enough or familiar enough with this drug. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

Marie,

I would forgive them and move on. Doing anything more is of no merit and would accomplish nothing.  It would be vindictive and spiteful toward people who save lives for a living. 

Be thankful that the nurses were there for you and save lives daily in their difficult work.

max

Anonymous user (not verified)

Vindictive? Spiteful? I find it an odd thing for you to say actually, unless you think I would sue them (which I certainly do not plan on doing). I simply wondered, as was mentioned by the previous post, if there was a protocol to follow so this does not happen again to me or anyone else. That is not being unforgiving ...it is wanting to improve a system that is there to save people's lives and to help the people saving lives to do a better job. As I said before, this is not the 1st mistake they have made with me. I love these nurses. I believe they have a gift for making people feel cared for, loved and even to make them smile during pain and difficulty. But we all make mistakes, and there should be a way to improve , so as not to repeat them. I'm not trying to get anyone fired, Max.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

Marie,

You asked what others thought or how they viewed your experience. I shared my view. I did not think you were soliciting only views that were identical to your own.

That said, medical mistakes are by many estimates the third leading cause of death in the US, although government statistics do not rank medical mistakes at all in their official tallies.  Others suggest the rate is much lower.

Nonetheless, I have a few egregious examples of my own that I'll share.  I was in acute care many years ago, prior to digitialized records, and heard 3 nurses in the hallway arguing about the proper dosing of a med I was to receive.  When the nurse entered I asked, "Did you figure it out ?" She got ghostly white, and denied that they had been discussing anything in the hallway.

My pastor's son was on dialysis about 20 years ago. He had to go to the clinic weekly, which was pretty routine for them after a few years.  One week he got hooked up, and shortly after the machine was turned on, he went in to convulsions.  EMS rushed him to a major trauma center that was just down the street.  The tech had left cleaning soluntion in the machine, which was pumped into him.  He survived, with no known long-term effects.

A best friend was dying with prostate cancer about 5 years ago.  His blood chemistry was super out of wack, and he was admitted as an inpatient for 5 days (an acute care, medical ward).  It was the same hospital in which he had been getting treated for the end-stage cancer for over a decade.  I went down to pick him up to carry him home, and was speaking to his discharge nurse, as he had no family in state, and I did most of his medical business for him, with his and his daughter's permission.   The nurse went over his orders, and when she finished, I asked, "How will this affect his cancer drugs ?"  She said, "What cancer drugs?"  I said "the drugs that put him here in the hospital."  She reviewed his chart, and said that they were unaware that he had cancer.....  I then added, "Well, I guess we know then whether he has been getting his hormonal shots while in here."

When I was in the Navy my chief went to the local Naval Hospital to have an impacted wisdom tooth cut out.  He said when he came to, both sides of his mouth were stuffed. He wrote a question to the doctor, asking why.  The doctor answered, "Darndest thing !  I cut and cut, looking for that abscess, but saw none. Then I realized I was on the wrong side !"

Also related to Navy medicine, I met a Navy anesthesiologist one night at a party.  I asked why he chose to practice in the Navy, ahd he answered, "So I can't be sued."  I then asked why anesthesiology, and he had a similiarly noble response:  "So I don't have to listen to patients *****.  I meet them a few minutes before I put them under, and when they wake up, I'm long gone."

My mother had severe dementia, and one day had her first major stroke.  EMS took her to the ER.  I drove across state to see her, and although she had been in the hospital about 10 hours, she was still in the ER holding area when I arrived.   I spoke to her doctor, who was a Gerontology specialist, part of a large gerontology group attacked to the local medical university. She had been seeing this gerontologist for several years at that time.   I asked why she was not in a room, and she offhandedly said she had not yet decided "what to do with her."  I then asked if her stroke was a rupture type, or a blockage type.  Her astonishing response was "I have no idea." I asked why not, and she said "She was too far gone before the stroke to warrent any testing of any kind."   I could not figure out what the value of a gerontologist was after that, if they view the patients as unworthy of medical care.   I took mom home a few days later, and asked the same doctor about a refill for her blood pressure med.   She replied, "I wouldn't give her any anymore, but we will refill it if you insist."  Mom's bp untreated ran around 220/110, and her form of dementia was precisely "vascular dementia," a form caused by high bp.  But the doctor saw no reason to even give her blood pressure medication.

My father was in a severe auto crash years ago, and was dying in ICU.  The pulmonologist called us down for a talk.  He told my mom, my brother and me that dad was actively dying. He then added, "he is on massive antibiotics. I understand he drank a lot also ?"  We answered yes, and he then said, "I can back the meds way down and he will no longer be a problem for you within a day or so.  What do you want me to do ?"   We said "save him, which he did, and dad had another 15 good years.

Understand: My parents were moderately wealthy, and had premium private medical insurance, so "money" was not an issue for their doctors.

My brother's mother-in-law was treated for Pancreatitis for about a year by her G.P.  Her pain because unbearable one night, and she went to the ER.  She was diagnosed within about two days with metastatic pancreatic cancer, and died five days after that.....  Similiar sequence of events was my own uncle, who had been having severe headaches and blackouts for about two years.  He was taken to the ER one night, diagnosed with a massive brain tumor, and was dead a few weeks later.  Misdiagnosis of Lymphoma types is a frequent line of discussion at this Board since I began reading it several years ago.

When Obamacare was introduced, it was alleged that there would be "Death Panels" to review who is worth saving or not.  I am NOT suggesting that this was true of Obamacare (I have no opinion on that one way or another).   My point is that there have been "Death Panels,"  in the form of doctor disgression for decades, if not centuries already.  Between careless doctors and insurance companies that intentionally refuse to cover patients with a variety of life-saving drugs, in my opinion, any person who gets good and conscientious treatment in the US is the exception, not the rule.  I personally, when on chemo, encountered several patients who told me directly that their insurance refused to pay for them to receive Neulasta, despite the fact that it could be a lifesaver.  Others told of being denied Emend for nausea.   These also were people with "insurance."  Often, the biggest "mistakes" in medicine are not accidental at all. They are intentional business decisions.

So, there are mistakes, apathy, crude indifference, all sorts of problems in medicine.  I am aware also.  I just don't see anything you or I do changing anything.  Major outrageous facts broke in the news several years ago regarding horrible treatment of Veterans in the VA system, and "fixing it" became a stated, national priority.  I have numerous friends who go to the VA for care, and I was even a vendor in the VA system myself for about six months a few years ago.   Virtually nothing has improved.  There has been almost no change at the local level where I live.  I doubt there ever will be.  Although not VA, I recall years ago when it was revealed that the Head of Cardiac Surgery at Walter Reed Army Hospital was legally blind.  Geeeze....

I am glad that you are well and the issue was addressed,

max

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

This happened to me.  I agree with Max but regrettably it happened multiple times, even when I said something in the beginning of treatment, during and at the end.  Even my husband said something.

My doctor didn’t like a fast drip on me and after my second infusion said all will be slow.  My nurses did not read his orders or ignored them.  I reminded them every time.  I made The mistake of being to nice and to strong.  My second last infusion my Doctor was called to see me (at my request) I was not good.  I refused to be up beat and nice.  I wasn’t well, irritating flashes of blinding light in my eyes, heart rate all over the place and nauseous  and very weak.   I ended up having to stay there two more hours needing an IV and to be watched.

 

I will never be that nice again.  I wouldn’t be horrible but it’s my life and I would don’t do it again unless we are all on the same page.

 

Sadly I had several problems with my nurses when I did say something they did have an attitude or thought they knew better and they didn't.  I was also my doctors best friend he told them that I was like family to him.  Made it worse as they were afraid of me.

There has to be a better protocol. Good luck.  Like you I liked my nurses but lost confidence in them.  Thats not good when sitting in that chair.

Evarista
Posts: 253
Joined: May 2017

Max, I respectfully disagree.  In my case, the procedures were reviewed, a problem in the procedures that led to the incident was identified, and the procedures were changed to minimize the chances of a similar incident in the future.  No one was "punished" and it never felt vindictive.  It felt as though there was a great deal of concern on everyone's part that something like that could happen.  As to fault or blame, that didn't come up and was not the focus. Both the pharmacy and the nurse made errors, but the fact that they could make those errors was due to a flaw in the procedure.  Once that flaw was identified, corrective steps were taken and the opportunity for error was reduced.  That's a good thing, not a bad one. In the end, it tracked back to a change that a vendor had made that made the existing procedure problematic.

Willow: you must be your own advocate.  I would ask to meet with the infusion center director to discuss how you can help to ensure that this not happen again. Be well.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

My observations referred to the particulars Willow shared, not yours, which are quite different in scope.

max

yesyes2
Posts: 581
Joined: Jul 2009

HI Willowmarie,

I think Evarista's response about you being your best advocate is so right.  Over the many years I have been receiving both chemo and maintenance there have been few problems.  I love most all the nurses and get along very well with all of them.  However, when an error is made I let them know loud and clear when something isn't right.  If an error is made the person who would be injured is the patient, myself, not the nurses.  We are talking about drugs that can kill.  

On one of my Rituxan infusions a new nurse increased the flow from a slow drip to a very fast drip.  This resulted in an infusion which normally took 6 hours to one that completed in under 3 hours.  The staff pointed out that I wasn't hurt.  Not good enough, and insisted the nursing director, the hospital head and my doctor be informed.  And that a written response be done.  And that the responsible nurse not be my nurse ever again.  Did I want her to lose her job, no.  Did I want her near me again, also a no.  

It's my body and I have my favorite nurses.  I had a nurse who assisted with my BMB, disregarded the doctor on pain meds, resulting in him not giving me the amout the doctor said to give me.  I really like this nurse but told him he would never be my nurse again as I no longer had trust in his care.  Not mean, just taking care of myself.  And this nurse and I are still friends.

There was a problem many years ago at this facility where 2 patients received the wrong chemo and one received too much of a chemo. drug.  One patient died and the other was  harmed for life.  I always check my chemo bags for the right drugs and dosage.  I also stay aware of the drip rate.  The nurses are angels but htey are not saints.

po18guy
Posts: 989
Joined: Nov 2011

Due to an IV pump mis-programming by a well-experienced RN, I received a 4 hour clinical trial infusion in 2 hours. It had zero adverse effects. I know that there was some butt chewing that occurred, but when all was said and done, they were glad to have the information, as it assisted them in re-considering the infusion times.

All's well that ends well. I would expect the facility to write off that treatment cost. No reason that even your insurance should pay for that.

Anonymous user (not verified)

Thank you all for the input! I think I will just talk to the nurses beforehand, as several suggested, and make certain they remember that it is always given slow. It is a small treatment center and the nurses know me, so I'm sure it will be okay. They will probably become more familiar with obinutuzumab anyhow as it was just recently approved for firstline treatment of follicular lymphoma  (supposed to lead to longer remission, yay!).

po18guy
Posts: 989
Joined: Nov 2011

We are complaining about being alive. Imagine that. You survived and are a wiser and tougher patient because of it. Something to celebrate. 

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

Sorry to hear what you & others have gone through regarding errors or people not following instructions. 

I feel very lucky that the medical teams I worked with followed instructions and there were no errors. If there were any errors they were found and fixed before I becamse aware of them. 

The cross-checks were always interesting. A couple of times I had to wait 5 mins or so because they were waiting for another nurse to free up to do the cross-check. Right now I am feeling very fortunate in that the staff did take the required procedures very seriously. 

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