My Journey to and in palliative care has been a series of steps both small and large (and forward and back), u-turns, roads taken and not, sprints, detours and a voice announcing “recalculating,” but through it all has been a sense of being led into this work in the first place and deeper in as time has gone on.
Over time, it’s easy to lose perspective on how important the work is, because it becomes what we do every day. Every once in a while though, something happens that makes me say, “THIS is why we do what we do.” Sometimes it’s a family’s spoken and unspoken relief at realizing they’re not alone. Sometimes it’s a measurable change in a child’s distressing symptoms because of an intervention we’ve implemented.
Recently, reward has come in the form of breaking through the myths and misconceptions surrounding palliative care and hearing families say, “When I first heard about palliative care, I thought: not for my child, but now I wish I had known about your team long ago.”
Persistence, education and presence are paying off, and if we keep going, access to high-quality palliative care will eventually be the norm for every child and family who could benefit from what we have to offer.
Dr. Friebert is the Director of Akron Children’s Hospital’s Haslinger Family Pediatric Palliative Care Center. Her program was recently featured in an article on pediatric palliative care published in The New Yorker.