I'm a private duty nurse, homecare pediatrics. Sometimes I know from the get-go that this particular child is not likely to live long.
Severe BPD and oxygen dependent with high vent pressures. An infant who cannot tolerate being off the vent for even 20 seconds. A two-month-old infant who weighs less than birth weight. A four-year-old who is vent-dependent because of cystic fibrosis. Stage IV cancer. Severe, multiple birth defects.
My goals for these kids are to keep them as healthy as possible, keep them safe, have fun while promoting normal growth and development, keep family life as normal as possible, and help their parents become competent, confident caregivers.
My goal is not to see them grow up to be adults.
Hey. if they beat the odds and grow up, I'm with them all the way! But - in my heart of hearts - I am not expecting them to beat the odds. This mindset helps me to move forward. Yes, I mourn them when they die, but I also move on.
I don't tell the parents what I think about the prognosis unless they ask. If they keep bringing it up, I'll ask what their doctor said, and, if I agree, I'll say so. I emphasize that I don't know, that this is something that they need to discuss with their doctor.
This, I think. is the hardest part of working with these kids; their parents want answers.
Others recognize that they couldn't do it and that is good. It is great that you do this type of nursing as these little ones need loving care. I work on the other end of the spectrum and get some of the same comments.
Some families will never be ready to say no-code. A traumatic full code feels right to them. (Everything that can be done, will be done.) I accept what they say; I don't argue with them.
I wonder how hospice nurses handle that. I know they will come and talk to the family before taking the case. Perhaps the fact that the parents have asked about hospice shows that they are already thinking along those lines.
I am a home health/hospice nurse (where I live we are one and the same). I work with adults, though, not little ones, and my guys are largely mentally ill drug addicts living in marginal housing (or homeless). Like someone else said upthread, there are times when I've been talking about work and have realized that my job is completely horrifying to most non-medical people.
I have had the "code or no code" chat many times. I always start by asking folks what their understanding of their illness is (so many times people shrug and say "I don't know, they haven't told me much!") and clarify any confusing or unclear points. I think a lot of folks don't really know what CPR looks like, especially CPR outside of a hospital setting, so I ask their permission and if they agree, I tell them. I also tell them what their odds of it working are, and what the rest of their life would be likely to look like if it did. I do make sure to emphasize that I have no skin in this game and if a full code is what they want, then that's what they'll get - and I want them to be able to make the most informed choice possible.
Most of my guys truly have lived very difficult lives already and very few want resuscitation, but there's always the odd one here or there. Usually as I get to know them (and they get to know me), we keep talking about it, and as they get sicker, folks tend to change their minds. I can honestly only think of one client I've had who declined to sign the DNR all the way up until the end.
I one time went on a date with a guy who asked what I did for a living. At the time, I was a visiting nurse for pediatric patients, primarily oncology patients. I specifically remember talking about a child I was seeing for G/J teaching and weight checks who had hypoxic ischemic encephalopathy from prolonged shoulder dystocia during delivery and realizing at that time that my work was completely horrifying to the average human being.
I am slowly coming to the realization myself. I can really only talk about it with my partner who is in law enforcement and who has seen her fair share of horrors (especially hospital-based -- she got to see a cardiac massage on a stab wound victim! LUCKY!!!). Everyone else kind of changes the subject if I mention anything. It kind of bums me out. I want to share the awesome things that happen and the stuff I have learned! I am focusing on a career in hematology/oncology (I work as a nursing assistant right now) and when I talk with buddies about my experiences it's really only keeping it to the more "simple," less horrific med/surgy type stuff. Everything else no one can stand to hear and I don't get it. I find it endlessly fascinating (especially because when I first started out in nursing school I was convinced I would find it endlessly horrific - don't knock it til you try it!).
I am slowly coming to the realization myself. I can really only talk about it with my partner who is in law enforcement and who has seen her fair share of horrors (especially hospital-based -- she got to see a cardiac massage on a stab wound victim! LUCKY!!!). Everyone else kind of changes the subject if I mention anything. It kind of bums me out. I want to share the awesome things that happen and the stuff I have learned! I am focusing on a career in hematology/oncology (I work as a nursing assistant right now) and when I talk with buddies about my experiences it's really only keeping it to the more "simple," less horrific med/surgy type stuff. Everything else no one can stand to hear and I don't get it. I find it endlessly fascinating (especially because when I first started out in nursing school I was convinced I would find it endlessly horrific - don't knock it til you try it!).
My Mom was a nurse, and my Dad was a medic in the army (WWII). Mom & I had the mother-daughter bond as well as being fellow nurses. And I grew up hearing about surgeries Dad had assisted in - in full detail - while we were eating dinner! It's kind of hard to consider my work as being horrific after that.
My Mom was a nurse, and my Dad was a medic in the army (WWII). Mom & I had the mother-daughter bond as well as being fellow nurses. And I grew up hearing about surgeries Dad had assisted in - in full detail - while we were eating dinner! It's kind of hard to consider my work as being horrific after that.
I am in the same field and I love it. I work nights and I've learned quite a few lullabies to comfort them.
I make up my own lullabies, too, sometimes from scratch and sometimes just changing the words. A lot of faster, zippier tunes can be slowed down to a gentle lull.
I did have to learn to rock them more slowly, though.
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Kitiger, RN
1,834 Posts
Excellent thread. Thank you.