A social work perspective in connecting with medically complex children and families
Amanda Hedrick ASW
Connection is a large part of end of life care. Some connections are built, some are felt, and some have to be created. Connecting with non-verbal, non-ambulatory children is one of my biggest challenges and most rewarding experiences. Building rapport with others without verbal dialogue or body language rivaled everything I knew about social and professional relationships. Working as a pediatric hospice and palliative care Social Worker, I’ve learned the most valuable and reliable way to set the stage for connection is approaching each family with a sense of humility and honor. I couple this approach in making the parents experts on their children and share their joy and sorrows as they naturally occur. Below I describe my first visit with a pediatric patient and her lovely family.
I had my list of assessment questions tucked into a file folder, nestled in my rolling bag which held my agency issued lap top, resource guides, and memory making activities. All things necessary for my initial home visit. I felt ready for my first pediatric palliative care patient. Considering I’d waited 9 months to meet her, I was more than ready. My feet were wet with agency orientation, shadowing, sending faxes, and phone calls, but there is something different when it comes to having my caseload. With my own caseload I could be creative with my approach and build a professional bond that only a home based social worker could do. I watched my coworkers build profound connections with families in the midst of medical complications, even death, and I was honored to begin that journey.
Before my current position, I was employed at a for-profit adult hospice. An 80 patient caseload is not uncommon at a for-profit agency nor are endless to do lists, and a schedule that would make even the most energetic worker sigh. Before hospice work, I was a county child welfare social worker, on call at night and in the field during the day. I will never forget the day I worked for 24 hours straight. After that, I swore off required on-call shifts and non-mandatory, but expected, overtime. Years after building my “social work chops” and “paying my dues”, I found a non-profit organization that did not require on-call shifts. Finally, I was employed by an organization that offered me the opportunity to blend my social work passions, children, and end of life care. I was ready, even eager, for my patient and her family.
Walking down their street I wondered what the patient would be like. I’d read through her medical record, I could tell you her diagnosis, recent temperature and weight (in Celsius and kilos mind you), but I couldn’t grasp who she was. That is my goal, to learn about who she is and share it with her home based medical team so we could coordinate optimal care for her.
The American medical system has progressed drastically when it comes to patient care. When all needed information about the patient was their diagnosis, we have evolved to include a multi-faceted approach that includes culture, religion, and family dynamics to name a few. In the early 1900s, social workers began working in the hospital and had a crucial role in order to treat the patient as whole. My organization also feels that expressions including art, music, massage and child life therapies are important in enhancing quality of life for pediatric patients. But before I could integrate the various resources and therapists, I needed to get in the door.
Her mother, father, and toddling younger brother welcomed me. Two sweet and smiley adults with looks of appreciation that only parents who know the struggle of caring for a medically fragile child have. Faces previously streaked with tears as they wondered if their daughter would live until tomorrow or see her younger brother run someday. Faces wrought with exhaustion and honor, providing medical interventions day in and out that trained nurses perform in a hospital. I am humbled in their presence, which usually translates to shyness by smiling at the ground and bowing my head. They’re younger than me, in their twenties and have lived a life that I am so new to understanding. A life dedicated to the comfort, care, and health of their daughter. Their lives are dedicated to keeping their daughter alive.
I have been in relationships before, and I would say I’ve been in love before. But what I witness in these parents is a love I never gave or received firsthand. A love that keeps you awake at 11:00pm then wakes you at 2:00am, then 5:00am, and every three hours thereafter to provide an hour long breathing treatment. A love that makes you neglect your biological and visceral need for food and sleep well after the infant and toddler years. One that demands the complete elimination of self-indulgences and frivolousness. To be in the presence of such pure and true love is like seeing all the wonders of the world in one place, awesome, in every sense of the word.
I met my patient, who sat in her pink wheelchair, and stared mouth agape. “Hello” I say to her, trying to make eye contact and then realizing that due to neurological devastation, she may not be able to see me. From what I learned about the brain and senses is that they can work like a poorly functioning lightbulb, sometimes flickering on and off, other times completely out. Nevertheless, I knew that it is always important to look at every patient regardless if they could do the same. She was never able to walk or talk and dependent on her parents or machines for every aspect of her life. All of this information I read in the medical record, but knowing her on paper was not the task at hand. I wanted to know her.
It’s easy to build a connection with someone who can communicate, smile, and interact but when it comes to children without these abilities, this type of connection needed to be created. From her parents I learned that she loves princesses, Minnie Mouse and all things girly. It was like a page of my childhood was thumbed to and splayed right open. They went on with grins and explained that she enjoys the movie Frozen and children’s music. They know this because she will wake up from her slumber just so she could listen to the familiar tunes. Like a flashback, I saw myself singing songs from The Little Mermaid at the top of my lungs and making a point to swim with my two legs together as one “fin.” She would also whimper when her favorite songs or movie ended, a feeling I was all too familiar with as a child. We watched a few of her favorites on a cell phone, smiling and dancing as a way to encourage the patient’s happiness. Finding the similarities between her and I helped create our connection beyond conventional or familiar forms of communication.
A priority for this particular family is to eat together. They told me about her favorite foods and eating habits. They said that when she is eating well and gaining weight she will develop a double chin. They look at each other and laugh adoringly as they say how much they love the chubby little deposit on their daughter. Her mother starts stroking the daughter’s chin lovingly. I laughed too, because in my entire life I’ve never heard a double chin discussed so endearingly. She doesn’t have a double chin anymore because eating has become more difficult. The connection between the mind and body has frayed to the point where the brain can’t communicate to the throat muscles when to swallow, resulting in coughing fits. When parents can no longer nourish their children there’s a sense of shame, embarrassment and failure. Like a new mother whose baby won’t latch, there’s frustration, pressure, and feelings of inadequacy. These feelings don’t dwindle, if anything they’re magnified when children are unable to eat at 8 years old. The mood shifts from laughter to somber and a period of silence falls as tears well up in the mother’s eyes. There’s no need to change the topic, no need to find a silver lining because there is none. The only need at this very moment is to hold the space for her to experience her grief. To give her permission to feel profound loss, which is the sum of little losses, compounded over time. And there I was again, staring at the wonders of the world, right in the face.