dying child...how to cope?

purplemania, BSN, RN · May 5, 2004

Be proud that you are able to provide comfort to the patient. As for the DNR status, that needs to be clarified. Maybe social work or ethics committe should be approached. You sound like a caring nurse.

Shed13911 · May 6, 2004

I agree that the ethics team should be involved and help the family to decide what is best for the family/child. It is hard to let children go but sometimes, letting them go is the "right thing to do" as they are suffering more if they stay on this earth. Please let us know what the outcome is for this baby boy.

kzyndarn · May 10, 2004

I currently have a nine-month-old patient who has come to my hospital to die. When he first arrived, he was weaned from his CPAP and was taken off all meds, but we were still feeding him and giving him morphine. Now, his parents decided that they don't want that anymore. He is now back on a nasal canula and is on CPAP PRN with codes, yet he is a DNR. I am confused about me feelings of this. It seems to me that his parents are just prolonging the inevitable. I understand that it has got to be a horrible decision for any parent to make, but these parents are never around. They never visit him, they just call maybe once a day to check on his status. I've actually seen them just once. I just don't know what to think of it. Any advice on how to cope?

Hello,

I work in the PICU and deal with dying children and grieving families frequently. There is no easy answer and it is a situation where it is not for us to decide what is right or wrong for the parents to do. You have to remember they are not educated in the medical field, so they see thing so differently. My priority is making the patient comfortable and being there for the patient and family as I see best. Make sure everyones needs are met and the family is made available the resourses they need. We have had many parents that did the same, ie didn't come to visit, etc. If this baby was in the NICU after birth for a long period of time, we see this alot. It is weird and hard to accept. We have had kids die here without family and we all take turns holding the children so they won't be alone when they die. It is a hard job, but the kids have us..and I know that makes a difference. Take care, Karen

AmPmRnoncall · May 11, 2004

Do you have a pallative care MD on staff.. I work at a children's hospital that has a pallative care MD and She is the BEST. I do homecare and she came out at 2:30 AM to help me with a 1 year old dying at home. Sounds like with your patient, the MD's aren't being really aggressive with the parents about the reality of the situation. best of luck and you are in my prayers

Lois RN:balloons:

hock1 · May 18, 2004

Give him the best of your love that you can. Realize he is going to die and there is nothing to stop it. As far as the parents...they may view the situatioin as hopeless and just can't deal. People have different viewpoints on how much 'children can understand and feel'. At one time babies didn't even received anestetic (spelling). Some parents need to stay away. So like I said, give that baby the best you can give. If it comforts you to be with the child then do so. Good luck. Prayers to you and the baby.

Dixiedi · May 18, 2004

They have two other children. I recently found out that transportation and childcare is an issue, but at the same time I'm forced to judge a little. I don't have children myself, but I feel like if I did, I would do whatever it took to be with my dying child. It's hard for me to put myself in their position since I can't relate what-so-ever, but I just feel like there are ways to work out situations like these. I've been feeling a little better about things since I realize that I am this child's family while I'm working. I feel like he knows I am here for him.

It's not a choice for you to make, you simply have to live with the choice and behavior the parents make.

When you are with him, you must turn on your compassionate self, cuddle him (as possible), love him, try to fill some of the human contact needs as well as his nursing needs.

When you hit that time clock, remember, he is just another in a long line of patients. Do not take him with you in your heart or mind.

It sounds cruel but a great nurse is one who cares deeply for her patients when it is time to and doesn't "give them the time of day" when off duty. It's the way to survive. You must separate work from home and keep your personal safe distance on the floor.

I work in home care, there is a co-worker on one of my cases that constantly worries about the child. Calls on her days off and even stops in on her days off! She has even set herself up to be mom's best friend.

I fear for her, if this child does not "make it" mom will be looking for someone to blame,that's part of the grieving proccess. Who do you think mom will blame? Her best friend, the nurse, who didn't get her son well. She is setting herself up for a really big hurt two ways. Might not happen that way, but would you want to take the risk? Keep your emotional distance.

Kyriaka · May 18, 2004

They never visit him, they just call maybe once a day to check on his status. I've actually seen them just once. I just don't know what to think of it. Any advice on how to cope?

_______________

Please try to be a little understanding of the parents since you do not know the situation at home. If their child has been in and out of the hospital for a long time I am sure at least one or both of the parents have had to go back to work full time in order to keep health insurance and make payments.

They may have other children at home who also need their attention. Some of the children at home may have physical problems and need extra attention.

Perhaps another relative is term. ill and they are having to take care of that relative as well. They may even be taking on extra jobs and arranging a funeral. One or both of the parents could be having a mental breakdown.

There could be a host of things going on...

My question would be dont these poor people have any relatives to help?? Where are the grandparents, aunts, uncles?? Anyone...anyone at all??

***

My children are no longer living so I see things more from the other side so I dont mean to be harsh. But perhaps the parents just cannot take any more.

As far as coping. That truly is a decision. You can become the walking dead by dying inside. Dont let that ever happen. Sometimes no matter what you do, your patient will not make it. But what you can do...do well.

Energizer Bunny · May 18, 2004

Is there an update from the OP on the baby???? I'm curious as to how he is doing?