We all have a story--that one patient, one family, one moment in our careers that defines us. Some of us have more than one. I’m lucky enough to have had many in my short career as a PICU nurse--the child who made it when we never thought he would, the one who thanked you for her life when you knew greater forces were at play, the one you can’t shake, or the one you will never forget. The patients who are why we do what we do.
Last summer, I was the primary nurse for a patient who lived in the pediatric ICU for 11 months. For 36 hours a week, every week for 11 months, I cared for this baby and her wonderful family. Her parents were told before she was born that no one knew how long she would survive. Like us, they made plans. They made a plan for her delivery--when to push on and when not to advance care; how much oxygen was to be given, how far they wanted to go. Throughout her whole hospitalization, they were an integral part of her care and her care plan. The most important thing to this family was that she was the most loved little girl in the world. They knew they didn’t have long with her, but they also knew that while she was here, she would feel loved.
With the help of an amazing medical team and a truly amazing family, after 11 months of ICU care and countless near death experiences, we sent this little girl home. I rode in the ambulance with the family on the transport home, and watching that dad carry his little girl into their new home will always be one of the best moments of my life. I’ll never forget that day. At that moment, I knew she was one of the stories that would last.
Patients and families have their own stories. Time spent in the hospital, no matter what unit or for what length of time, is something parents and patients don’t forget. Longer stays often become a defining time in their lives. Everything else falls into the category of “before” or “after.” As caregivers, it’s easy to see these days as their stories. But we often fail to remember that they’re our stories, too. This family would become another one of my forever stories, one that I hoped not to have to tell, but a story that defined me as a person and a nurse nonetheless.
Months after she went home, the family came back for what looked like a routine admission for them. There were concerns, as always, about the fragility of the child's life, but at this point the PICU had become a second home for them as it does for some of our families. They had heard the words “life-threatening” dozens of times before.
In what seemed like a rapid, unreal series of events, she died; less than 24 hours after admission to the ICU. Perhaps it was my own personal relationship with the family that blinded me, but in truth, I don't think anyone saw it coming. Had she died on the unit during her initial stay, it would’ve been a different story; the family was ready to make end-of-life decisions at that time. This time around, they just weren't ready. There was no time for meetings with the family, no time to make plans, and no time to decide how far we wanted to push.
It felt like one of our traumas; the hardest kind, where a child gets hit by a car or has an accident and comes in dying, a family who has a child and plans for the future one moment, and the next is trying to plan a funeral. The only difference is that in those traumas, we don't know the family. We can distance ourselves emotionally because we don’t know who they are. This time it was different. This family was a major part of all of our lives for almost a year. They were my friends, and I wasn't even there. By the time someone called me the next morning, it was already over. I wasn't able to do anything at all. There was no way to say goodbye, even if it would’ve been in the worst way--through medications, and coding, and futile hope.
We went to the funeral. Somewhat foolishly, we thought we could help them celebrate her life, but I don't think they knew we were there. There was no closure; they weren't ready and, to be honest, neither were we. I felt completely lost. I didn't get to say my goodbyes. I didn't get to check anything off my list. I didn't know how to grieve without these things. It was a chapter I wasn't quite ready to close. We deal with death all the time in this field, and most days I like to think I've gotten pretty good at handling it. But I wasn't ready for this one. I so badly wanted theirs to be a story of hope and success that we all remembered, not one of unexpected sadness and grief.
In the months that have followed, I can’t say I feel like I've gotten all that much closure. In the 5 years I’ve worked in the PICU, this is probably the most affected I’ve ever been by a patient death. I still imagine seeing the mother and being able to tell her all the things I wanted to say--that her daughter was indeed the most loved little girl I knew, that they helped me decide what kind of person and what kind of parent I want to be, that the loss wasn’t theirs alone, and we would all carry her daughter with us into the world. I don't think I’ll ever be able to say those things to her. I don't think she'll ever be able to look at me and not see that day--the day her daughter died, and the day they buried her.
A few things have helped: telling my story and her story, sharing it with the only people who would understand--her medical team. I went to the debriefing and talked about the day we sent her home. To this day, I’m still so happy the family got to go home. It’s something for which I think they’ll forever be grateful. It’s something in which I will forever be grateful to have played a part. I tell people who ask me how the funeral was the truth: I share how hard it was and how lost we felt. As a nurse, I always want to take care of people and that day, we weren't able to take care of them. But we were able to take care of each other. Three of us went out after the service and talked about her life and her family. We grieved together as a unit and as a care team. For now, that’s all I can do.
There will always be these stories that define us, but we don't always get to pick the endings. As caregivers, we try not to think of patient stories as our own. We say things like “it’s just a job” and we try to be thankful that we’re secondary characters in the story and not the primary ones. But at some point it helps to acknowledge that we were there, that it’s something we have to survive as well, even if it’s in a completely different way than the patient or family.
No one likes to lose control. As an ICU nurse, there’s nothing worse. Emotions are messy and we try to tuck them away, not allowing them to get in the way of the care we provide. I’ve learned that, sometimes, being tough isn’t always the answer. Sometimes, sharing our loss together and acknowledging our grief is the only way to heal.
By Jenna Marie Brandolini, BSN, RN, CCRN
Children's Hospital of Philadelphia