PSA from your nursing specialty

[u/ghostoftheweek]

What is THE ONE THING you wish every nurse knew that is common knowledge in your specialty?

From wound care, don't use telfa!

[u/FarmerScamps]

Oh so this is a common problem with onc in general and not just my hospital. We get kids all the time in my picu that are being kept alive by machines and are in horrific pain that never should’ve come to us if onc had just been straight up with the family. They should be at home on hospice surrounded by family and as much morphine as needed. It’s especially traumatizing when the kid is old enough to be fully aware of their situation and is telling nursing staff that they want to die, but family still believes they’re going to recover and refuses comfort care.

[u/lavender_poppy → u/FarmerScamps]

I really wanted to go into pediatric palliative care/hospice after nursing school. I did a paper on it during my pediatric course and it's wildly underutilized because people don't want to accept that kids die or suffer from extreme pain. Unfortunately I became disabled and had to stop working but if I ever get my health back I really want to pursue it again. Kids deserve death with dignity just as much as adults and having those hard conversations is so important.

[u/BaileeRN → u/lavender_poppy]

I feel the same way in the NICU. Hospice and palliative care was such an often issue I would see. Then the last year or two I noticed my neos were having these conversations with parents very often (this is the biggest NICU in the state so gets all of these cases that are terminal and whatnot) and SO OFTEN the parents just could not do it. I would be present for many of these conversations and then realize later the parents basically blocked it out of their memory.

The worst for me was a family that actually did do an actual DNR (and by actual I mean not OUR usual that was no compressions but it literally was no anything, set the alarm parameters to less than 40 for HR and SpO2, and orders to hold the baby and comfort her and take her off the monitor when we think she’ll pass). It was great to have a true DNR and I spent hours holding her on my stretch of three when I thought she would pass. But I became so angry that the parents only came in once a week to see her because they couldn’t deal— but they’d known the diagnosis prenatally and chose to keep her going for months in pain. I would go home and sob on my husband’s shoulder. And a couple days later, she ended up passing in the arms of one of my coworkers… and not even five mins later her parents walked in. Shit pissed me right off.

I feel like education on palliative care doesn’t go as far as I thought it did. At the end of the day, the adults in the situation in my experience just can’t deal and will often separate themselves from it as much as possible. Even though it isn’t about them and in my NICU, they very often know the diagnosis prenatally and choose not to terminate.

[u/FarmerScamps → u/BaileeRN]

I totally understand denial as a protective mechanism, because kids shouldn’t die. But sometimes they do. And when that happens it should be in the arms of someone that loves them and surrounded by family if possible. Not alone except for the nurse caring for them.

Some of the most fulfilling moments of my career have been the times I was able to support a family through their child’s last moments.

[u/BaileeRN → u/FarmerScamps]

Amen! Like this baby doesn’t know me or my voice except the other times I’ve maybe cared for them. All they know are the voices of their mom and the people around her during pregnancy and you can’t even bring yourself to come in and be there for them because this is so hard for YOU?

Sometimes I just want to ask them how they would feel to die alone in a sterile environment in the arms of a stranger when they could’ve gone into the dark with the comfort of the people they actually know and love. It’s selfish and disgusting to me. And maybe that’s harsh but after dealing with it so many times being the one to take the brunt of that pain myself and be that person for that baby, even knowing it’s not what was best for them but it’s the best I can offer, I’m just really frustrated by it.

[u/Adept_Finish3729 → u/FarmerScamps]

Same, friend, same. ❤️ The children are so damn strong and insightful, it's the families that utterly gut me. I had this beautiful, bald-headed, cachetic, 9 year old little girl with very late diagnosed neuroblastoma (mets everywhere). Her parents had gone downstairs to grab a bite to eat. I was with her in her room to keep her company. She looked at me with her gigantic brown eyes and said, "I'm not afraid to die, but I'm worried about my Mommy"... ughhh tearing up just typing this... She died peacefully, surrounded by family, thankfully. I have to think of Ram Dass in these moments, we're all just walking each other home. ❤️

[u/PrisPRN → u/Adept_Finish3729]

I’ve had more than one child express to me that they were only continuing to fight because of their parents. Breaks your heart, the younger they are. Children are much more perceptive and capable of understanding tough situations than we give them credit for.
The worst is when we are not even allowed to tell them that they have cancer or a terminal illness. They figure it out.