By Tony Pirrone, Hospice Chaplain
During my first two years as a clinical chaplain at Hospice of the Panhandle, I provided spiritual support to a multitude of patients with an average age of well over 70. Entering my third year though, I wasn’t ready for a new experience—a pediatric patient. I had never worked with a pediatric patient, and honestly, wasn’t very confident in my ability to deliver the same level of care and compassion, but then, I m
et Andrew.
Andrew Dion, 17, began his end-of-life journey with Hospice in February 2021, following a year-long fight against a malignant peripheral nerve sheath tumor at Children’s National in Washington D.C. He was a typical teenager in every sense of the word, despite his terminal illness. His favorite things included SpongeBob, Angry Birds and his family—his mother Loretta, father Mike and older brother Timothy
One of my favorite aspects of working at Hospice of the Panhandle is living out the words, “Teamwork makes the dreamwork.”
Pediatric hospice care requires an even higher level of coordination and teamwork to support these special patients and their entire families through their journey. Not only do we have to coordinate between the Hospice team and the family but we work closely with the child’s medical teams that are often located at hospitals like Children’s National. Another thing that is different with hospice care for children is that, unlike adults, children can receive treatments to cure their illness while they are receiving hospice care. If the treatments are successful or improve the child’s condition to the point that they no longer qualify for hospice care, then the child would be discharged from Hospice. They can be readmitted to our care if they ever need our services again—we always hope that they don’t.
In addition to myself, Andrew’s care team included registered nurse Jennifer Dagg and social worker Candice Mahood. None of us had prior experience working with a pediatric patient, but we were supported by nurse manager Adaira Green, clinical educator Renee Bledsoe and social work manager Julie Sayre, who have all been trained to provide pediatric palliative care through the Panda Cubs program at Children’s National. Our pediatric care team met weekly to discuss Andrew’s needs, any concerns and any challenges with providing care.
In addition to providing pastoral care and companionship to Andrew, I worked closely with his father Mike. I provided one-on-one pastoral counseling, emotional support, encouragement, helped him develop coping strategies and addressed his anticipatory grief.
Social worker Candice Mahood worked very close with Andrew and his mother Loretta, providing compassion, a listening ear and a wealth of knowledge about community resources.
Nurse Jennifer Dagg used all her nursing experience to provide Andrew with the comfort measures and clinical interventions he needed to continue living life on his terms.
Andrew seemed to really enjoy the attention and care provided by his Hospice team at every visit. Most of our visits with Andrew lasted about an hour, depending on his specific needs. His physical decline was evident as time moved forward, but his zest for life never faltered.
A day to celebrate life, family and fun
Andrew expressed a passionate desire to take a family trip to the Great Wolf Lodge in Williamsburg, Virginia. Unfortunately, due to his physical limitations and concerns about safe transportation, that wasn’t possible, but the team came up with an alternative. In August 2021, we were able to get Andrew and his family to have a day of fun at Jay Dee’s Family Fun Center in Inwood. A very big shout out to Jay Dee’s for hosting Andrew, his family and his hospice care team. Andrew was able to spend some quality time with his family, play games, go swimming, eat pizza and cash in plenty of tickets for prizes. It was a day to celebrate life, be a teenager and simply have some fun.
Later in August, Andrew began to show signs of declining. His hospice care team increased visits and continued to support his family through his final days.
On Aug. 26, 2021, Andrew Dion passed away in the presence of his family, in the comfort of his home and with the full support of his hospice care team. Nurse Jennifer was with the family just minutes after his passing. Social Worker Candace and I arrived shortly after. We provided emotional support to Andrew’s family. We laughed. We cried. We prayed, and we shared the most sacred of moments together.
So many wonderful lessons learned! I will always be grateful for the privilege to serve on Andrew’s care team. We can all learn from Andrew how to live life fully, on our own terms until we take our last breath. We need to remember to embrace our families, to engage with our community and always remember that hospice care is about living not dying.
An offer and an opportunity
Andrew’s parents Mike and Loretta Dion would welcome the opportunity to discuss their experiences with families in similar circumstances. If you or someone you know would like to speak with the Dions and learn more about Andrew’s journey, please contact Hospice of the Panhandle at 304-264-0406.
Tony Pirrone is a clinical chaplain with Hospice of the Panhandle where he provides spiritual support to hospice patients and their families according to their individual preferences, beliefs and traditions, regardless of what faith they practice. For more information about hospice care, call (304) 264-0406 or go to hospiceotp.org