Let me paint you a picture:
A precious child arrives early one morning at the oncology clinic. She is cozy in her little pink bathrobe. She clutches on to her beloved unicorn stuffed animal in one arm, squeezing her mom’s hand tightly in the other. She looks down at her toes as she waits to hear her name called. She begins to sniffle thinking of what will come next. A port access.
“Angela?” The nurse calls. “We are ready for you.”
The seemingly soft spoken patient lets out a shrill, “No! I don’t want to do this!” She looks to her mom, big tears welling up in her eyes, and begs for her mom to protect her. She screams for someone, anyone to spare her from pain.
The nurse looks over at the child life specialist and says, “You coming in to help this poor little girl?”
“No.” The child life specialists responds.
Say waa?
“I even struggle with self-doubt and question if my decision to stay out of the room was right.”
Why in the world would a child life specialist not rush to the scene to help a frightened child?!
Real talk: when I choose to stay out of a patient room it can feel so defeating for that moment. I feel helpless. I desperately wish I could do more and radically remove a child’s fear and agony. I even struggle with self-doubt and question if my decision to stay out of the room was right. I worry about others are perceiving of my choice…do they think that I don’t know what I am doing? That I am being apathetic or uncaring?
Though there is no black and white way to determine which patient is a candidate for child life remaining in the room or not, there are a few factors that I take into consideration when determining how child life services are best utilized for that particular patient. For example, I consider if:
- the patient is waking up from anesthesia and is still heavily sedated
- the patient has severe altered mental status and is needing immediate mental health interventions
- the patient does not appear to respond to coaching of coping skills/ distraction and remains escalated
“You still play a vital role in supporting this patient and there are other creative ways you can support this child throughout the experience.”
In this particular scenario with little Angela, what was my reasoning to stay out of the room? Steroids. You know, a little medication that causes severe mood swings, can alter personality, heightens emotions and creates intense irritability…
You see, I had met Angela several times before and had even attempted to provide support with each dreadful port access. However, I began to assess that she wasn’t benefiting from my presence. To Angela, I was only one of the many strangers in the room. She wouldn’t respond to my suggestions of how to help things go easier. She wouldn’t answer my choices. She wouldn’t engage in my coaching or distraction. She did, however, greatly benefit from a comfort hold from her mom and for her mom to be the one voice in the room to calm and reassure her through every sob.
And so, after several attempts to support Angela, I made the decision…to step out of the room.
But wait! That is not to say that I don’t go back in the room or that I don’t try other ways of caring for Angela. I made sure to communicate my decision and reasoning to Angela, her parents and the medical staff. I remained physically visible and available during her visits. I always debriefed after each and every poke and provided play and therapeutic activities. I continuously checked-in and reassessed what Angela needed and evaluated how I could best support her.
I understand that my decision to stay out of certain rooms may not be the practice of every child life specialist. Each child life specialist should make his or her own assessment of what they think the patient needs and should consider other variables, too (for example: if the patient has a chronic illness, what unit is the specialist on, etc.).
However, when I do determine that my child life services can be used in vital alternative ways instead of being directly in the room for a procedure, here are four things I try to keep in mind to help me stay confident:
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There is a difference between assessment and apathy.
I don’t choose to stay out of a room because “I just don’t feel like it today” or “the patient probably wouldn’t respond to me anyways, so what does it matter?” I make my assessment of what I think the patient needs in light of being confident and committed to the value of child life services. I use my training of child development to guide how to best support the patient and how to minimize the anxiety, even if that means eliminating how many people are in the room (including myself!) -
Be a good and constant communicator.
Talk with the medical staff and parents to help them understand how you plan on providing child life services to the patient and family, even if it looks more indirect for the time. Continue to follow up with the family and be a supportive and consistent presence. -
This isn’t about what makes YOU feel better.
We are here to serve the needs of the patient. A crying child doesn’t always mean that is our opportunity to swoop in and save the day. In fact, doing so can sometimes create more chaos, anxiety and perhaps stirs even some tension between medical staff who feel you are stepping on their toes. As I have blogged about before, our identity should not wrapped up in who approves of us or even in our profession. Of course it is heart wrenching to see a child suffer and feel that we can’t change that. And it does not feel good to be the child life specialist standing outside of the room! But we cannot let our own ego or insecurities dictate how we provide services. Instead, we need to humbly ask “What does this child need?” -
Try your best…and then keep trying.
If a child continues to have difficulty coping and does not appear to benefit from your presence, to a certain extent that is completely out of your control. Don’t accept defeat. You still play a vital role in supporting this patient and there are other creative ways you can support this child throughout the experience (debriefing, play, etc.). Keep giving it your all and persevere. You never know when your Angela may start benefiting from child life distraction and practicing coping skills for her port access on another day…