Wednesday, October 11, 2006
When You Least Expect It
We were on opposite sides of her, me gently patting with one hand and very slowly syringing milk into her NG tube with the other. Her mother wrapping her tighter to stop busy limbs from flailing. Hoping for sleep.It'd been a horrible day for them, a catastrophic diagnosis revealed, and little time to take it all in.
They always say it: "I don't know how you do your job."
I smiled gently. "There are good days and bad days. Mostly you just try to make things better, a little bit at a time. Even when I know I can't fix what's wrong, the main problem, I can usually help with the rest."
I paused, unsure whether to make the point or not. Patronising? Maybe, but it felt right. "Maybe that's something to think about, when you go home with her. Nobody knows how to make her better, but doing the little things will make a big difference to her, to the way she feels."
Next day I was astonished to discover the baby had died suddenly later that evening, only hours after I'd been with her. No-one had expected it.
Hindsight isn't always a wonderful thing. I wish I hadn't talked about the family going home.
Posted by PaedsRN at 7:20 PM
You followed your heart and your gut. Don't be so hard on yourself. You do a job that is a calling, not just a job, you can't be perfect in every aspect of your life, everyday.My heart goes out to every family who loses a child, but my heart goes out to you also, because you care.
I am a PICU nurse and I used to do pediatric burn care, so I have long heard "I don't know how you do your job". (Once when I was doing burn care, a patient's mother said to me, "I suppose you don't have any children- I don't suppose anyone could work on this ward and have children." I assured her that many of the nurses had families.)
My only response is that if I didn't do my job, that wouldn't make sick children, burned and dying children go away. Some children will become critically ill, and when they do they need compassionate, knowledgeable care. Why shouldn't I be someone who helps provide that care?
I sometimes want to say to people who work in a cubicle all day "I don't know how you do your job!".
Don't worry about your comment. I sometimes feel in talking with parents that I am walking a fine line between unbounded hope and total despair. You want to give parents something to hope for and help equip them for discharge, all the while never being totally certain that the child will be discharged. You want them to be somewhat aware of this possibility, but not overwhelmingly so...It's a tougher job than sitting in a cubicle! (and one can never go for coffee or lunch whenever one wishes...)
You gave hope to the family, sometimes this is the best gift of all. You told them that you couldn't fix the problem but you could help with the rest, this may have also put the parents more at ease and more accepting of the final outcome. (faith, hope, and love, the greatest of these is hope.)
I don't think you did or said anything wrong. One of the main things that I think we can do is to give families hope. I know I have always been taught about not giving false hope, yes... but... We have a support group that all the parents come to and talk (support each other and vent about things they don't like). It is confidential, but sometimes we get feed back from it. We never know what parent is saying it or what nurse they are talking about.. but if something is significant enough we are told.. only to prevent it from happened again. One of the main things that parents said in that group was hope was the only thing they had... the only thing getting them through (even when the odds weren't in favor). One parent talked about how sick her daughter was and how no one believed she would make it. It really upset that parent that nurses were coming up to her and saying "i'm sorry." In her mind, the child was still alive and still fighting, so she didn't want any apologies- she wanted hope. It was unexpected and you had no way of knowing. Maybe you gave the family falso hope of going home, but how were you to know at the time. We aren't perfect and we aren't future readers... you were just trying to comfort and provide support. Other than that I think you said some great things to that mother. You did say that no one knows how to make her better. Also the comment about the little things will make a big difference.... The parents will be dealing with the grief of their loss for much time to come, but they will know that the nurse who took care of their child actually cared. Giving them the thought that the little things were making a big difference will give the parents comfort in knowing that in her short life everyone did all they could do and made her comfortable.
Keep your head up... you really did all you could.