Ethics in PICU (long)

[km5v6r, EdD, RN]

I am an old nurse (20+yrs) but a new PICU nurse. I work at a major trauma/transplant center and I am stuggling with the ethics of some of the things we do. Our docs will transplant kids that other centers turn away. I really question this sometimes; most of the time. This past week I have been caring for an infant with cystic fibrosis and ESLD being worked up for a liver transplant. He is on the vent, CRRT, pressors and requires blood products daily. The docs were hoping this weekend to have him down to only one pressor so he can be listed for a liver transplant. The liver transplant will probably solve the coagulation problems and will help with the renal problems but what about the cystic fibrosis? Extensive lung damage already exist. Last I heard cystic fibrosis pt's lived longer then in the past but still had shortened lives and faced major hurdles with freq infections. Now we are going to immune compromise this child? Fine, he lives through the liver failure and we get a working organ into him only to lose him in the future to infection or lung disease? Infant organs are scarce and resources are limited. Why transplant a less then ideal pt? I know this sounds really harsh but life is harsh. I am not convinced we are doing this pt any favors. Instead of telling the parents their child is not a candidate for transplant I have watched the docs paint the picture as black as possible and wait for the parents to say no. Earlier this summer we had a days old baby born with Down's syndrome, liver failure and renal failure. Mom and Dad were both adults but were developmentally delayed. After 3 weeks of work up it was determined the baby had suffered brain damage, cerebral bleeds and failure of area of the brain to develop. By this time the babies wt had doubled from fluid with the renal failure. Still the docs asked the parents if they wanted him listed for transplant. Why force them to make that choice? Personally, I question if they could fully understand the choice they were being asked to make. They did understand that without the transplant their son would die. I don't think they could understand what would have been required to care for their son after transplant. Had they been told "I'm sorry but we can't do a transplant on your son because of ....." They would have accepted that the doctor said no. As it was they made the decision to withdraw life support and Mom and Dad both walked off the unit crying "I killed my baby." Personally I feel that was cruel to do to these parents. I don't care how many staff and physicians told them they made the right decision.

I enjoy the technical challenge of working in PICU. We have some incredible success stories. I enjoyed working this past week and watching the improvements in my baby with CF and ESLD. I enjoy establishing a relationship with the parents. I just have difficulty with looking at what will probably happen down the line, 6 months a year from now. How do I turn off that part of my brain and just do my job?

[NotReady4PrimeTime, RN]

Most people will tell you that the reason we do things like that in PICU is because "kids are different... kids can recover from things that would kill a grown up... we have to give them a chance..." Which really isn't good enough for me. We have on intensivist in our unit who will always manage to convince the parents that we should keep going, that the child has a chance... of what he never really says. And another of our docs, our pre-eminent cardiovascular surgeon, is of the mindset that so long as the heart is good, we should do whatever we need to to keep it beating. No matter that the liver and kidneys are gone, or that the brain's been devastated. So we list kids who shouldn't ever get a transplant, we put kids on ECMO that are never going to have any quality of life, we ignore the oncologists' prognosis and put a kid with stage 4 JMML on inotropes and the oscillator, we keep a toddler with meningococcemia breathing as his limbs are hacked off... Thank God they are the exceptions. I have no advice for you, only a heaping helping of empathy.

[km5v6r, EdD, RN]

Thank you for the understanding. The few attempts I have made to say something at work I am met with blank stares and "well the doc ordered it" and "of course we do everything" Lots of very young new grads and I am feeling very old right now. I also have been arguing with the whole medical philosophy lately. My own Dad has been in the hospital with some electrolyte imbalances and wt loss. Dad also has early dementia, severe COPD, a history of noncompliance and is an old 73. I have been fighting with some of the docs to not look to hard for a cause of this as we are not treating anything too big and ugly. In other words I don't care if he does have cancer or a brain tumor we aren't treating it. UGH.

[NotReady4PrimeTime, RN]

I'm very sorry about your dad. I expect to be dealing with all that someday... maybe not too far off. My dad is going to be 70 this December; he has had hypertension for probably 30 years, diabetes for 13 and he's quite obese. He eats (and drinks... usually Wiser's) whatever he wants, whenever he wants and the consequences be damned. Christmas 2004 they came out here for the holidays and Dad fell in the hotel bathroom, gashing the back of his head on the tub and KOing himself. He probably seized immediately after it happened, but the door was closed and his feet were up against it so Mom couldn't get in there. The noises she described sounded very suspicious to me... She was terrified, but told DH to let me sleep... Of course I rushed over to the hotel and found him alert, still oozing a fair bit and refusing to have anybody but me look at it. It needed sutures, but we made do with steri-strips. LOTS of steri-strips. I told him to make sure hs doctor knew about this episode so that she could look at his meds and bloodwork when he got back home, but he said he didn't think he'd bother. I had to get right up in his face and remind him that people pay me a ton of money for my medical opinion, and he better darned well listen to me! Did he? Nah.

I hope you are able to convince your dad's docs that you really do know what you're talking about... feel free to use my line... and that your dad isn't pushed into accepting death-prolonging but not life-saving care. I'll be thinking of you.

[subee, MSN, CRNA]

Thank you for the understanding. The few attempts I have made to say something at work I am met with blank stares and "well the doc ordered it" and "of course we do everything" Lots of very young new grads and I am feeling very old right now. I also have been arguing with the whole medical philosophy lately. My own Dad has been in the hospital with some electrolyte imbalances and wt loss. Dad also has early dementia, severe COPD, a history of noncompliance and is an old 73. I have been fighting with some of the docs to not look to hard for a cause of this as we are not treating anything too big and ugly. In other words I don't care if he does have cancer or a brain tumor we aren't treating it. UGH.

For me, this is the hardest part of being a nurse. So many doctors seem to have trained at Dachau and exacerbate the already horrible cruel position that the patient and family already find themselves in. Educate, educate, educate the parents to ask MD's "What is the long term benefit of X procedure? Speak to them about the need for a DNR. So few of staff members are kind enough to initiate these painful conversations. I worked in oncology for seven years and it took at least two years before I felt comfortable enough to become an advocate for the patient and help families sort out what was best for the patient rather than what was best for the family. Your patients are better off because you think about the big picture - better off than the others who have become so burnt out that they're just "following order."