Preparing myself
At school we talked about how to help families go through a loss, but I think you can never really understand it or fully grasp it until you experience it. It would have been nice to hear from other professionals about how hard it is to lose patient after patient and to try to stay connected to the families, but at the same time, protect yourself. At the same time, I think it’s something you have to experience yourself. No one understands what you go through at the hospital unless they work here with you. You can go home and talk to somebody about it but they don’t fully grasp it.
Kristen Fowler, Child Life Specialist
Could we have helped you prepare more?
After a patient has passed away, sometimes we have meetings with the families, and the question sometimes comes up: “Could we have helped you prepare for this if there is a way to prepare?” There are some that say “Every day after the transplant was a gift, we were preparing for this since we were told our child would not survive.” Others say “You can never be prepared.”
Heather Bastardi, RN, Nurse
Helping families think through different issues
I think one of my main goals is to have families feel supported in whatever is their need. Also, that they feel not judged. I listen to them, respect them, learn about them, and I have to listen all the time for cues. I think it is beholden on me, and our team, to offer them choices very gently. To think about things that might fit within their culture, their family beliefs, and their faith and to not be afraid to bring things up. I always bring things up with a caveat. What I usually say is, “You know some families have taught me that this is how they would like to do it, other families have chosen this. I am here to support you in whatever makes sense for you. But, perhaps together we can think about what your child might want and what might be most meaningful for him or her and also, what your needs are and that is the parents and that is the brothers and sisters.”
Another goal I have is that hopefully families will not have regrets about what they did or did not do. I think parents almost always are going to question or feel guilty about some things. I often think: “What can I do to offer, to suggest, to allow for experiences to occur in way that makes sense for the family?”
Janet Duncan RN, Palliative and Advanced Care Team
Creating legacies
Some of the activities we frequently do is take pictures and other any legacy building things. I love to do pictures with their handprints. We’ll do a handprint and I’ll turn it into a sun and hang it up in their room. When they’re in the hospital, I try to take pictures. I always encourage the families to take pictures and the older siblings to journal. I’ll have the kids make “All About Me” posters and hang them up on their doors here in the hospital just to get the medical team to know who they are. At the bottom I try to have “My Three Wishes” and have the kids try to fill them out or if they’re infants the parents will fill them out. It’s neat to see the teens, children, and parents fill them out and how they change over the course of their life and their disease and their health. It’s always enlightening to see. I try to create and keep those legacies going and prepare for the worst but hope for the best. The things that are so important to parents after their child passes on are the journals and the pictures.
Kristen Fowler, Child Life Specialist