Ethics in the cardiac PICU- are we doing the right thing?

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    I have had some questions burning in my mind over the past few months and would love some input from my PICU friends. Since I changed jobs to a PICU with a large cardiac population, I have seen some children who have broken my heart and challenged my conscience. Any of you who have dealt with kids with congenital heart defects know what I am talking about- ridiculous surgeries (time and time again), prolonged, painful intubations, chest tubes, line placements, sedation nightmares- most with the same outcome- a very prolonged death or a substantially limited life. I would witness rounds on these kids, physicians, residents, surgeons, fellows, and the occasional nurse- talking about the "plan for the day." Only when child is actively trying to die do we have those crucial conversations with families- when they are emotionally devastated- about outcomes and eventualities. Is this fair? Is this the right thing to do? Just because we say we can do one more surgery, should we? Are we perpetuating pain and suffering in the same of science and medicine? As nurses, if we do not raise these questions are we just as culpable?

    What do you think?
  2. 5 Comments so far...

  3. 3
    I think this is a huge can of worms that will never be successfully resealed! I know EXACTLY what you're talking about. Every time I go to work, I look at three perfect examples of what you're pondering. The nurses I work with are starting to really feel - and resent - the burden of decisions we have no input into, but are expected to carry out anyway. Is there a point to cardiac transplantation in an infant who has no renal function? Sure, we can keep the kid alive for a while, but eventually all those comorbidities will catch up to us and we're still going to have a dead kid and grieving parents. But they'll have had months of uncertainty, the kid will have had procedure after procedure after torturous procedure, the CRRT will pack it in a dozen times in the same weekend resulting in huge risks to the kid for minimal benefit (and HUGE expense)... it's just not right. Then when the kid finally decides enough is enough and arrests, well, let's just do compressions for an hour while the surgeons decide whether we should cannulate for ECLS... We're still waiting for the conclusion of that particular case. (No ECLS this time, BTW.)

    Your comment about the "plan for the day" is well-taken. That's the way it goes... just plan for the day. Don't look down the road at the outcome, because that's not an ICU mindset. One of our surgeons has been heard to say, about a child who was neurologically devastated and had horrible lung disease who needed some surgery that wasn't going to save his life, "Well of course he should have the OR done, the heart's good." Same surgeon, when we don't have beds for his ORs, will take a kid from the PICU to the OR and tweak. He HAS to cut something. Someone.

    Our hospital is the North American training facility for the Berlin Heart. There are other hospitals who are implanting them but we're the one with the exalted German specialist and the certification programme. But get this... the staff from the adult CVICU has not been trained and, it seems, will NOT be trained to care for patients with Berlin Hearts. We've now had three adults admitted to our PICU (the oldest was 20) with Berlins, and last week they were actually talking about admitting a 37 year old, if they decided to switch from one type of VAD to a Berlin. The patient didn't come, but the nursing staff are ready to walk out en masse the day that we get someone like that.

    Is it fair? No, not on any level. Is it right? No, not on most levels. "Just because we can" isn't a good enough reason for many of the things we do. So much of the time it really does seem like experimentation on human subjects but without the ethical oversight. Nurses definitely should raise these issues. Unfortunately, we have no power to do anything about it other than express our opinions and provide as much information in the plainest terms we can to the families so that they really understand what they're doing. In my experience, getting the hospital ethics committee involved is never worthwhile, because all they really do is identify the ethical dilemmas, but don't offer any support for the person with the distress. In the interest of self-preservation, it's important not to internalize the moral distress these cases create. I find myself muttering, "God grant me the serenity ..." If I get all the way to the "wisdom" part, then I need to talk to somebody about it. We have a wonderful chaplain who is always available to "reflect" as she puts it, but it's truly more of a venting than a reflection! By all means, talk to the physicians and your management about your feelings, but don't expect much to change.
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    Jan,

    Thanks for your wonderful post. About a year ago, the Peds ICU and Peds CVICU were combined into 1 unit, theoretically (1 side Cardiacs, 1 side PICU). The PICU RNs are required to float to the CV side. Even before the 2 units were made one, many of us (PICU) were asking the same questions - what are we really doing and whose interests are we serving? Thankfully, some of our newer attendings are really looking closely at what is happening with our kiddos. I think our side of the unit is really trying to think about the patient and what's best.

    The CV side lost most of its nurses when we combined - they were cardiac nurses first and foremost, be they child or adult - they did not want to come over to the PICU side (as yet, none have) to take a patient assignment. However, the PICU RNs are coming over to take their "more stable" kids more and more. We have very limited knowledge of cardiac defects and "learning on fly" is not the way to go. I had a hideous day the last time I was there, but their intensivist told me I did a great job and would I like to come over and start caring for the hypoplasts?

    Things are done on the CV side that I believe are just downright, if you'll excuse the term, "beating a dead horse." We have a child on ECMO with a huge bleed and it's the second run. And on and on it goes.

    I kind of feel like Humpty-Dumpty. I fall apart after I've been over there for a shift and about the time I've glued myself together, I have to go back and do it all over again. I'm afraid there will that one time I can't put Humpty-Dumpty back together again. I don't need to be reminded over and over again about my own personal situation and that I could very easily be that grieving parent or that parent having to make a hideous decision about my child.

    Sorry for the hijack - I just started typing and it came out. At least I'm not crying too hard.
    NotReady4PrimeTime likes this.
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    Thank you for your post WarEagle. The way you're feeling is something I hear time and time again from even seasoned PICU nurses, especially lately. There are so many situations in our unit right now that are creating great distress to the staff as a whole, not just nurses. Most of them are CV related (2/3 of our patients are CVs) and come down to hubris, plain and simple. Putting a Berlin into a teenager with a fatal disease is not good medicine. Transplanting a heart into a teenager with severe myotonia, chronic respiratory failure, major decubiti and bilateral AKAs who subsequently develops chronic renal failure and osteomyelitis of the sternum is not good medicine. Performing a complex repair on an infant with a fatal genetic disorder is not good medicine. But we do it.

    Yesterday the bed/staffing issue came to a head for us. Our attending closed the unit to admissions because we were significantly short staffed for the next five shifts with no possibility of making it better. The wards are all full of chronic CV patients and RSV, so they couldn't take any transfers. We have five chronic CV patients in the unit, two of whom could have returned to their home cities but haven't, and we are running HD on one, PD on one and CRRT on three. The workload is enormous. The CV surgeries were cancelled and the surgeon pitched a royal fit. They decided to close sternums in the unit instead then. I found out during the one of these closures they were actually able to do that the OR was also severely short-staffed and couldn't have accommodated his cases anyway. Especially when they got an aortic dissection in ER and had to free up a room for that. The surgeon's retort was that if his first case hadn't been cancelled they would have already been almost done in the OR before the dissection arrived. There's no flex at all and it's starting to really hurt.

    Our unit will be dividing into two separate units at some time in the future. It was already supposed to have happened but the big shiny new cardiac sciences centre isn't ready for occupation yet (grand opening was last May...) and we're taking over the adult CVICU's space. The physicians and RTs are already divvied up along the med-surg and CV lines, but the nurses are not. And no one will (or can) tell us what the plan for the nurses is. I suspect that we'll end up bouncing back and forth and we'll lose even more staff.

    I'm taking part in a research project examining moral distress in the PICU. It's a multi-centre study looking at common denominators and risk factors. It will be interesting to see what the end result reveals.
    JeanettePNP and WarEagle4Life like this.
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    Jan,

    Thanks so much - I felt so much better after reading your post. I'd really be interested in the results of your research study.

    Not only is the CVICU side losing "core" RNs, we're losing people on the PICU side. I feel frustrated doing care on our heart kids because I feel I'm not the best option. I'm PICU trained and think with a PICU brain and seems not to be quite the same as a CV brain. Some things are the same, some are not. Different doctors, different routines, etc. I just found out the kiddo I took care of died (tricuspid atresia, basically a single ventricle, had a bi-directional cavopulmonary shunt, developed mod to severe mitral regurg, went to OR a couple of days after I had her) - I really wasn't surprised, but it really hurt. I gave the best care I could - the day was awful.

    We have had two Berlin hearts in our unit within the last three months. Luckily, the new NM for the CV side had previously worked with it. No one had had any training for it - simply learn as you go. There was really nowhere to chart on the computer, the RNs over there just "winged it."

    And to make bad matters worse, we have gone to using a staffing matrix using strictly numbers-the total number of kiddos in unit. This is in an effort to help cut costs and we know the patients pay in lower quality of care.

    Thanks so much for listening and letting me vent. I feel better than I have in 2 or 3 weeks. You're my heroine!:bowingpur
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    Such praise... I'm blushing.my:

    The exodus from our unit is starting to really concern me. Last night someone who has NEVER, no matter how bad things have been, said that she was ready to quit, said that she is ready to quit. She's been on the unit since the early 1980's and has been through good times and bad for more than 25 years, but now she's had enough. That's a good indicator of how awful things are getting. Of course, it's not just those five chronics and the lack of respect, it's the short staffing and the constant pressure to do more and more all the time with less and less. And we haven't even done the CV/med-surg split yet.

    We admitted a baby who was in cardiogenic shock last night. The baby was brought in by the transport team from the sending facility; they had to take one of our patients back with them in a trade. Our unit manager on days did up the assignment for the night shift and had the nurse who was caring for the kid we were sending out also receiving the kid we were getting in. I honestly don't know how she thought that would be possible, but then that's why she's the manager and I don't even do charge. Naturally it didn't work out; we pulled another nurse and got her to do the admission. Much grumbling ensued. We'll have another Berlin by now.

    The baby you described with the Glenn shunt (my condolences BTW) would not have been allowed to die on our unit. We would still be flogging that baby with whatever we had to. You have nothing to feel bad about related to your care of her, I know you did everything you could. We can't save them all, and we shouldn't try to save some of them at all.

    For all that we're the "Berlin Heart North American centre of excellence" the 12 hours of training I received was not nearly adequate. It was disorganized and there wasn't much focus on nursing care. We got no outline at the beginning, no explanation of the charting requirements, there was a lot of sitting around and when I came out of there, I still didn't feel like I knew anything. My very next shift I had a kid who had been implanted the day of my class. At 0815 the German superman Berlin god came in pushing a new Ikus driver. "Here you go, time to change the driver so that one can be sent for maintenance." "Have I told you sir how much I loathe you?" :angryfire

    Another thing that our management has done that hasn't helped with morale is the division of staff. When we first started the Berlin programme, they hand-picked a number of nurses who were to be the "Berlin Heart team". They made it seem as though these people were somehow superior nurses (not true! Attention seekers, more properly) and created a sense of elitism. Then they did the same thing with CRRT, which used to be part of our advanced orientation and everyone was capable of setting up, running and ending it. Well, then it came to pass that we had four kids with Berlins and some shifts there weren't any of the "team" scheduled. They asked for volunteers to join the team. I had been passed over for both the Berlin team and the CRRT team so I very deliberately did not sign up and nor did many of the others who felt as I did. So they decided that it would now be part of the orientation process but in the meantime they put together an ad hoc training day and just assigned a bunch of people to go to it. None of this was communicated to the staff at all. I had just come back from vacation to find I was on that list and I had a bit if a hissy. I ended up in the office and in the end I didn't take the training that day because there was no one to take my assignment. About six months later the CRRT situation followed the same path and they didn't have people who could do the treatment. So they again just pulled a bunch of people from the bedside and gave them four hours of instruction. They were supposed to only monitor and change bags, but are now being expected to set up and end too. Now we've got people looking after a Berlin heart and CRRT as well as the patient all alone... AND covering breaks at the next bedside. That isn't going to continue for long before more people quit.

    Is it ethical for nurse managers and administrators to put that kind of load on their nurses? If the unthinkable should occur, will they stand by the nurse, or throw her under the bus? These are some of the things I'll be bringing up in my interview for the study.


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