Coping with death

Pediatric Critical Care Columnist · Jun 14, 2011

First of all, you were NOT responsible for this child's death in ANY way. Children with HLHS are on borrowed time from the minute they emerge from the womb. they're chronically hypoxic, which is one cause of seizures in children with cardiac defects. Hypoxia can lead to rhythm changes that don't have to last long before a seizure occurs. (I've seen it in one of my own children who has a corrected TGA.) As for the ASA 30 minutes before the event, it's unlikely to be related. ASA is one of two substances (ETOH being the other) that is absorbed right in the stomach. If he'd refluxed and aspirated, it would have been mainly gastric secretions by that point. If this child was thought to be at risk for sudden death, he would have been admitted to PICU for close observation, not on a general peds ward where he'd be sharing his nurse with other patients. That is in no way your fault either.

I sense that you're feeling unsupported by your current coworkers. This is one of those drawbacks to travel nursing. It's not right, but it happens all the time. Few people want to invest a lot of time and effort into getting to know and like someone they know isn't going to be around for long. Coming to us here was a good idea. You'll get lots of support from us!

It's always hard when a patient dies, but seems to be more difficult when the patient is a baby or child. It's perfectly okay to feel grief for your patients as long as it doesn't become a perpetual state. We provide care for sick people and sick people sometimes die. (Actually of course, all people die.) It's common for we nurses to think that somehow we did something/didn't do something/missed something that caused or contributed to the death, and quite frankly, it does happen. Rarely. Most of the time, there was no warning or sign at all that an event was coming. Good nurses will always wonder. But for one's own self-preservation it can't be one of those things on our daily checklist... assessment, meds, treatments, IV fluids, line changes, dressing changes, mouth care, bath... what-did-I-do/miss/overlook/forget? Nah. We couldn't do our jobs if all we thought about is that the patient could die when we weren't looking.

If you're still feeling like you aren't getting over this in a few days, please find someone on your unit to talk to. There has to be someone who has been nice to you who would help you. If that's not possible, come back and we'll see if we can help.

Emilyallen · Jun 14, 2011

Thank you for your kind words. I really appreciate it. I feel better today. The patient was on telemetry which is monitored by two other nurses in another room. They said there were no dysrythmias prior to this event. He was on a pulse ox which was not picking up when mom called me into the room. She said she had been trying to untangle him from the leads after she tried to give him a bottle. He was sating in the mid 80s all morning which was his baseline. I will never know how long the pulse ox monitor was off. He had had hx of dysphagia but had been cleared for thin liquids for almost a month. I know you said it's unlikely but I keep thinking about the 3cc of water I mixed with crushed aspirin. If he had choked on it, wouldn't it have happened right away when I was there?

Pediatric Critical Care Columnist · Jun 14, 2011

I'm quite sure that had he choked on that med, it would have been as you were giving it. "He was on a pulse ox which was not picking up when mom called me into the room. She said she had been trying to untangle him from the leads after she tried to give him a bottle. He was sating in the mid 80s all morning which was his baseline. I will never know how long the pulse ox monitor was off." This is important... it happened subsequent to your giving the ASA. Not saying that the mom is "to blame" because there can be no blame laid here. While about 75% of infants with HLHS will survive following the Norwood to discharge, between 4 and 15 % of those will die at home prior to their second stage Glenn. In one study, the mean age at death for these kiddies was 102 days... 3 1/2 months. And the identified risk factors for them were post-operative dysrhythmias (which may or may not persist) and poor ventricular function - a sign of which is poor feeding. One way to assess ventricular function is to evaluate the pulse pressure. Narrow pulse pressure suggests poor ventricular function and congestive failure. But in the infant with a Norwood circulation pulse pressure is usually widened due to their duct-dependence. So they have a relatively high systolic and quite low diastolic. This is only a valuable assessment in the ICU, generally speaking, because it's VERY hard to get accurate cuff BPs in babies. There's just so much going on for these little ones that it's often impossible to pinpoint the cause of their deaths without an autopsy. Even if they survive the three stages of palliation, the threat of sudden death never really goes away. Morbidity is high. As you can see, the outcome is uncertain all the time. And this is why I KNOW you're not responsible for this baby's death.

Emilyallen · Jun 14, 2011

Ok. thank you again for making me feel better. It really means a lot.

Pediatric Critical Care Columnist · Jun 14, 2011

You're very welcome. I've been there, and I'll go there again. It's the way of it, I'm afraid. But the more you know and understand about what brings your patients to your door, the better able you are to deal with your emotions afterward. I won't even open the can of worms that is moral distress... that's a topic for another day. Contact me when you're eating, sleeping and laughing normally again. Just put a visitor's meesage on my profile and we'll talk about some of the nitty-gritty.

qcumba · Jun 19, 2011

Hi

NICU nurse here, sorry if I'm invading your forum...

We recently had a very sad loss in my unit, one of our micro's, a former 25wkr, 820g at birth we fought really hard along side him and his parents to get him to discharge -his initial stay with us was fairly uneventful apart from a PDA ligation, struggling to wean him from his O2 due to BPD, and a couple of day prior to his planned discharge date he arrested due to a reaction to the eye drops used in his ROP exam,but after a day on the vent he was extubated and after a very long 105 days we sent him home, he was the sweetest little thing and we loved seeing him on his monthly visits to get his synagis shots.Then a couple weeks ago just prior to him turning 6 months old, the lady looking after him while his mom was watching thier older son play soccer,phoned his mom to tell her he was "breathing funny", his mom rushed him to the paed,as they entered the paeds office he went into respiratory arrest,mom performed CPR and baby started breathing again at which point the paeds receptionist grabbed him and ran with him to our unit - the paed was in theatre for a caeser - we dont usually re-admit to our unit especially now during RSV season but we were closer to the Dr's rooms than ICU/ER,

Any way by the time they got to us he was in full arrest and it took them about 35 min to get a pulse, he was unresponive, in renal failure - he was basically passing blood,extremely oedematous etc but as far as his parents were concerned he was still there, so we were aggressive and had him on the osscilator, on pressors etc and over the next 2 weeks we watched him very slowly improve, he started passing urine and starting to respond to pain, but then all responses became decerebrate and a CT was done and there was extensive ischeamic damage,very little healthy brain remained...

After the Dr spoke to the parents and explained he prognosis, we began weaning his ventilation, his parents went home to thier other son - they stay out of town and didnt have anyone to look after him - and it was left to me to wean him down to minimal settings and then to wait for nature to do her thing, I cannot tell you how painfull that was for me, to watch this little human, who I admitted into our unit as a tiny 820g baby and to then be the one to watch him leave this world, it was incredibly hard, I'm fairly new - qualified for 2 years - so I haven't had all that much experience with this sort of thing.

the hardest part for me was giving him a bath wrapping him in a blanket and placing him in a bassinette, covering the bassinette and taking him to an empty room for his parents to see him when they came - they didnt get there in time and only arrived after I had left - but fo me leaving him alone unclothed with just the blanket over him at the time felt aweful,I couldn't bear the thought,as silly and irrational as it sounds, that he was cold and alone, I sat there with him for a few moments a wept a bit, and then I went back to my other assignments. Eventually at shift change, the thought of him going to the funeral home "cold" and un clothed was still bothering me so I came home and got him an outfit and blanket,which we dressed him in before his parents came. this and going to the funeral the next week with my colleagues helped, we still talk about him often and I think that helps us all, I feel the day a child/baby/patient's death doesnt affect me in some way, is the day I find something else to do or take a long vacation...

One thing that still bothers me tho, someone out of the profession said to me afterwards that I, in essence by weaning the vent,basically suffocated him....that really hurt, and while I understand all the theory and reasoning,and that to continue at full ventilation was cruel,that there really wasn't any alternative, at the back of my mind I still feel like I suffocated him....

again sorry for hijacking your thread and I probably havent helped you one bit, all I can say is find someone at work who understands and chat with them, laugh about all the funny little things the patient did,try not to focus on remembering all the bad,easier said than done I know...Hugs:heartbeat I hope you can find peace and know that you really did everything you should have done, theres nothing to gain from blaming yourself :redpinkhe

P.s. We never found out why he arrested in the first place, but the xrays suggested aspiration.

Emilyallen · Jun 19, 2011

Thank you so much for sharing. That must have been very difficult. I find that talking about such events with non-nursing friends or outsiders sometimes makes coping worse since they do not understand the details and complexity of the situation. It's been a week, and I feel so much better. It helped to get back to work this week. I now know there is nothing I could have done to have changed the baby's outcome. For some reason, I was scheduled to work that day, be assigned to that patient, and have that experience. All I can do is move forward and continue to do my job to the best of my ability. I will always remember holding the rattle in front of him before I last left the room, and him trying to reach up and touch it. We have the most special job that only we can understand. I really feel so lucky.

Pediatric Critical Care Columnist · Jun 19, 2011

qcumba, you didn't hijack this thread or intrude. Your patient was a child, he died and you have an emotional response you needed to share. No apologies necessary.

I feel it's a special blessing when I am the nurse present when one of the patients I admit eventually dies. That may sound warped but in some ways I think it's part of the Grand Plan. When I've been there with a child for many shifts over many weeks, I think the family feels some comfort knowing that I'm there when the end comes... that I've seen them through the best and worst of it and that their precious child has someone who truly knows them and cares about them with them. That's not to say it's easy, because it never is. But from experience, it's harder on me emotionally to be the nurse of record when I child I barely know but who has been on the unit for some time suddenly leaves. My feelings are for the parents who are experiencing that never-event with someone they don't know. That has only happened a couple of times but those have stayed with me in a way the others haven't.

jmsnkids · Jun 20, 2011

Hi there--I can feel your grief through the computer. I have been a pediatric RN for nearly 30 years and it never gets easy to lose a patient--it shouldn't. However, I did learn in the last 8 years as a peds hospice nurse that you can strengthen yourself with knowledge. I took the ELNEC course--End of Life Nursing Consortsium training for pediatric nurses. I believe it is offered by the Hospice and Palliative Nurses Assn. or the Natil Hospice and Palliative Care Organization. I found it extremely valuable and supportive to my practice. Good luck on your journey and take good care of yourself so that you can continue to care for the little ones who need you. JMSNKIDS :nurse: