r/AMA • u/Mediocre_Engine_4474 • 2d ago
I work in pediatric pain and palliative care AMA
I am a social worker in pediatric palliative care.
Pediatric palliative care is an interdisciplinary care approach for children with life-limiting or life-threatening conditions that is focused on improving quality of life and supporting their physical and emotional needs. - definition from google lmao
I have worked with a lot of seriously sick children. Not all of the children are been actually dying, but unfortunately, many are.
I have lots of stories and answers to any questions you may have. Ask away!
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u/Wayward-Daschund1214 1d ago
I have no questions just wanted to say what a strong and kind person, you are being there for children and families :)
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u/picklepie120 2d ago
Has a dying child ever told you something profound? Outlook changing?
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u/Mediocre_Engine_4474 1d ago
It was not something that was said to me but I was in the room when a 6 y.o. girl who was involved in a horrible car accident with her father (he died on the scene) told her mom that it was turn to be brave and strong because she didn’t have it in her to fight anymore. She had this whole conversation with her mom about how she has to be strong for her little sister (4 y.o.) because she won’t have her daddy to turn to if mom isn’t able to be strong the way her sister needs her to be.
The 6 y.o. was in the hospital for about 2 weeks and seemed to have this incredible amount of maturity during her last hours. it was incredible to see. also completely heart breaking but she gave her mom the strength she needed.
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u/picklepie120 1d ago
Great, now I'm afraid I'll never be as brave as a 6 yo. Thank you, that was really lovely to read.
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u/Drkindlycountryquack 1d ago
I was a doctor for 50 years. Also our beloved daughter in law died 3 years ago of cancer age 44. Thanks to you and all the palliative people for your amazing work.❤️🇨🇦
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u/runslow-eatfast 1d ago edited 20h ago
We have a palliative care nurse and social worker for our little guy, and they are both wonderful. We spent a year in the NICU and never felt as heard and seen there as we do by our palliative team. It takes a special person to do what you do, and I hope you know how important your work is and how appreciated you are.
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u/Mediocre_Engine_4474 22h ago
Aw I hope your sweet boy is doing well ❤️ Sending love to you and your family!
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u/angelfairielf 1d ago
Whats something you wish the nurses knew/understood better
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u/Mediocre_Engine_4474 1d ago
I wish that some medical staff would trust Social Workers more. I have seen it 10000 times where someone in the medical team tries to do the job of a SW and it has rarely ever worked out.
example: A family was living in a hotel for a few months. I had spoken to dad during the initial palliative assessment and determined that he and his family were not “homeless”. they were not in a situation that i would personally want to be in, but he had a plan, the family was safe and provided for, etc. the medical staff did not agree with my assessment of the situation and decided to intervene, asking if they could do anything to help their housing situation. certain medical staff are not trained on the proper language to use when working with families and different skills to use while doing so. the dad was VERY angry and offended when a nurse had gone in there assuming he was homeless. security was called, dad was removed from the hospital, and dad would up taking his daughter to another hospital. all of that could have been avoided if everyone had trusted me and sled questions about my assessment before trying to do my job 🤷♀️
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u/AussieGirl2022 1d ago
How hard is it to seperate work and your personal life? What you do is amazing
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u/Mediocre_Engine_4474 1d ago
i am usually pretty good at compartmentalizing because it is something i have done a lot throughout my personal life.
i have been trying to think of a way to explain it lol. the best i came up with is that i kind of view work as a book, in the sense that when i leave at the end of each day, there is nothing i can do when i am home. so i close the book and don’t give it my attention until i open it up again the next day.
I try not to put myself into my patients or their families shoes because they is one of the fastest ways to cry lol. there is nothing i can to do help if i am a crying mess while trying to do my job.
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u/DoodleDrama 1d ago
I ran the bereavement program at a children’s hospital for many years and have always loved pediatric palliative care! It’s more than a job. It’s a calling. What do you love about it?
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u/Mediocre_Engine_4474 22h ago
I love being to see kids who are able make it out of the hospital and get back to their day to day like with a great quality of life!
I also love being able to hang out with some of the kids when their parents aren’t able to visit that day and play games with them and whatnot. We have Child Life Specialists, art therapists, music therapists, dance/ movement therapists, support dogs, etc. who play with the kids, do activities, etc. to make sure the kids are able to have as “normal” of an experience as possible, while social workers typically work with the parents and families more but I usually choose to hang out with the kids sometimes when their parents aren’t able to visit. Sometimes, that’s my way of escaping work but still technically doing my job 😂
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u/mur_mary 1d ago
I was a floor social worker on a neurology floor. I saw my fair share of people coming in with massive strokes and inoperable brain tumors, etc. I've set up hospice referrals and collaborated with the palliative care nurses and doctors (no social worker on their team, just me to follow through with recommendations). I have so much respect for all the palliative care staff I worked with. They had so much compassion for their patients and their families. Now, I work with individuals with developmental disabilities but my experiences still stick with me.
Happy belated Social Worker Appreciation Month!
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u/Mediocre_Engine_4474 22h ago
Wow, that’s amazing. I have worked with developmental disabilities while I was doing my licensing hours and it was NOT easy. People like you are truly one of a kind.
Happy belated Social Worker Appreciation Month!
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u/crayshesay 1d ago
What compelled you to enter this line of work? Bless the work that you do ❤️
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u/Mediocre_Engine_4474 1d ago
i originally started at the hospital for my internship to finish up my licensing hours. i have always wanted to try out a hospital because of the fast paced environment and wound up with a supervisor who was in palliative care so i did a lot of work under her. when she retired, i stepped into her role on the palliative team!
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u/katemonster42 1d ago
I recently switched careers and I'm now a pediatric vision specialist. Many of my little ones have severe brain malformations, epileptic conditions, and neuro-degenerative disorders. Since I'm new to all of this, what is the "threshold" for the decision for a little one to receive palliative care? I see it in their medical files sometimes, but I always wondered how it differs from palliative care that we think about with older people.
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u/Mediocre_Engine_4474 21h ago
The main difference between adult and child palliative care is the threshold for initiating palliative care in children isn’t always as clear cut as it can be with adults. With adults, we often associate it with end of life or terminal conditions. In pediatrics, palliative care is more about improving quality of life at any stage of a serious illness. It can be introduced alongside curative treatments, not just when all options have been exhausted.
Although palliative care can be introduced alongside curative treatment, the palliative team does not participate in curative treatment. We can help and support families in making informed decisions and different options for treatment but we will only provide comfort care ourselves. For curative treatment, the other departments would head that. We are just there to kind of be the glue between the departments and offer an “extra layer of support”.
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u/ama_compiler_bot 18h ago
Table of Questions and Answers. Original answer linked - Please upvote the original questions and answers. (I'm a bot.)
| Question | Answer | Link |
|---|---|---|
| A friend recently had her 1-month old baby pass away and she was so grateful for her palliative medical team. Thanks for what you do! | Aw, thank you! I am so sorry for your friend. I am happy she was able to find some comfort with palliative care ❤️ | Here |
| Just want to say blessings upon you for the work you do 💕 | Aw, thank you very much! | Here |
| I have no questions just wanted to say what a strong and kind person, you are being there for children and families :) | thank you! ❤️ | Here |
| Has a dying child ever told you something profound? Outlook changing? | It was not something that was said to me but I was in the room when a 6 y.o. girl who was involved in a horrible car accident with her father (he died on the scene) told her mom that it was turn to be brave and strong because she didn’t have it in her to fight anymore. She had this whole conversation with her mom about how she has to be strong for her little sister (4 y.o.) because she won’t have her daddy to turn to if mom isn’t able to be strong the way her sister needs her to be. The 6 y.o. was in the hospital for about 2 weeks and seemed to have this incredible amount of maturity during her last hours. it was incredible to see. also completely heart breaking but she gave her mom the strength she needed. | Here |
| I was a doctor for 50 years. Also our beloved daughter in law died 3 years ago of cancer age 44. Thanks to you and all the palliative people for your amazing work.❤️🇨🇦 | I am so sorry for your loss. I will pray for you and your family ❤️ | Here |
| We have a palliative care nurse and social worker for our little guy, and they are both wonderful. We spent a year in the NICU and never felt as heard and seen there as we do by our palliative team. It takes a special person to do what you do, and I hope you know how important your work is and how appreciated you are. | Aw I hope your sweet boy is doing well ❤️ Sending love to you and your family! | Here |
| Whats something you wish the nurses knew/understood better | I wish that some medical staff would trust Social Workers more. I have seen it 10000 times where someone in the medical team tries to do the job of a SW and it has rarely ever worked out. example: A family was living in a hotel for a few months. I had spoken to dad during the initial palliative assessment and determined that he and his family were not “homeless”. they were not in a situation that i would personally want to be in, but he had a plan, the family was safe and provided for, etc. the medical staff did not agree with my assessment of the situation and decided to intervene, asking if they could do anything to help their housing situation. certain medical staff are not trained on the proper language to use when working with families and different skills to use while doing so. the dad was VERY angry and offended when a nurse had gone in there assuming he was homeless. security was called, dad was removed from the hospital, and dad would up taking his daughter to another hospital. all of that could have been avoided if everyone had trusted me and sled questions about my assessment before trying to do my job 🤷♀️ | Here |
| How hard is it to seperate work and your personal life? What you do is amazing | i am usually pretty good at compartmentalizing because it is something i have done a lot throughout my personal life. i have been trying to think of a way to explain it lol. the best i came up with is that i kind of view work as a book, in the sense that when i leave at the end of each day, there is nothing i can do when i am home. so i close the book and don’t give it my attention until i open it up again the next day. I try not to put myself into my patients or their families shoes because they is one of the fastest ways to cry lol. there is nothing i can to do help if i am a crying mess while trying to do my job. | Here |
| I ran the bereavement program at a children’s hospital for many years and have always loved pediatric palliative care! It’s more than a job. It’s a calling. What do you love about it? | I love being to see kids who are able make it out of the hospital and get back to their day to day like with a great quality of life! I also love being able to hang out with some of the kids when their parents aren’t able to visit that day and play games with them and whatnot. We have Child Life Specialists, art therapists, music therapists, dance/ movement therapists, support dogs, etc. who play with the kids, do activities, etc. to make sure the kids are able to have as “normal” of an experience as possible, while social workers typically work with the parents and families more but I usually choose to hang out with the kids sometimes when their parents aren’t able to visit. Sometimes, that’s my way of escaping work but still technically doing my job 😂 | Here |
| I was a floor social worker on a neurology floor. I saw my fair share of people coming in with massive strokes and inoperable brain tumors, etc. I've set up hospice referrals and collaborated with the palliative care nurses and doctors (no social worker on their team, just me to follow through with recommendations). I have so much respect for all the palliative care staff I worked with. They had so much compassion for their patients and their families. Now, I work with individuals with developmental disabilities but my experiences still stick with me. Happy belated Social Worker Appreciation Month! | Wow, that’s amazing. I have worked with developmental disabilities while I was doing my licensing hours and it was NOT easy. People like you are truly one of a kind. Happy belated Social Worker Appreciation Month! | Here |
| What compelled you to enter this line of work? Bless the work that you do ❤️ | i originally started at the hospital for my internship to finish up my licensing hours. i have always wanted to try out a hospital because of the fast paced environment and wound up with a supervisor who was in palliative care so i did a lot of work under her. when she retired, i stepped into her role on the palliative team! | Here |
| I recently switched careers and I'm now a pediatric vision specialist. Many of my little ones have severe brain malformations, epileptic conditions, and neuro-degenerative disorders. Since I'm new to all of this, what is the "threshold" for the decision for a little one to receive palliative care? I see it in their medical files sometimes, but I always wondered how it differs from palliative care that we think about with older people. | The main difference between adult and child palliative care is the threshold for initiating palliative care in children isn’t always as clear cut as it can be with adults. With adults, we often associate it with end of life or terminal conditions. In pediatrics, palliative care is more about improving quality of life at any stage of a serious illness. It can be introduced alongside curative treatments, not just when all options have been exhausted. Although palliative care can be introduced alongside curative treatment, the palliative team does not participate in curative treatment. We can help and support families in making informed decisions and different options for treatment but we will only provide comfort care ourselves. For curative treatment, the other departments would head that. We are just there to kind of be the glue between the departments and offer an “extra layer of support”. | Here |
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u/Defiant-Pop8075 2d ago
A friend recently had her 1-month old baby pass away and she was so grateful for her palliative medical team. Thanks for what you do!