Recently I had the good fortune to tour the Neonatal Intensive Care Unit (NIC-U) at Wolfson Children’s Hospital in Jacksonville, Florida and meet their paediatric chaplains. I was unprepared for the flood of emotion that overwhelmed me and took me back 17 years earlier, when my wife and I were the young parents in a NIC-U. The sights, sounds and smells rocked me and retrieved memories that I had thought were dealt with and buried.
The chaplains noticed and asked if I was okay. I told them my story, and let them know how blessed these families were to have the luxury of spiritual support from them, a support that my family had lacked. Later, I stumbled across the Syndromes Without A Name (SWAN) web page. This group advocates for children suffering from as yet undiagnosed illnesses. As I looked through their site (and the sister site SWAN USA) it brought me back to when my son suffered with multiple birth defects that went undiagnosed for the first year and half of his life.
Even after the diagnosis was finally made, we had to travel over 2,200 miles (3560 km) from Montana to the University of Florida for surgery. There, the first paediatric cardiovascular surgeon refused to perform the procedure, saying there was no hope of survival. Fortunately, the other surgeon on staff agreed to perform the surgery (he placed survival odds at 5%) and asked if he could call his church in to provide spiritual support for us.
How I wish there had been paediatric chaplains available to us then. How I wish there had been a SWAN network to stand beside us. While grateful to the surgeon who was compassionate, caring, and took on the role of a chaplain, being alone and far from home left us overwhelmed and vulnerable, unable to find anyone except other parents in the waiting room to talk and share concerns with.
According to the National Hospice and Palliative Care Organization, in 2001 over 8,000 children would have been eligible for palliative services on any given day, but only 5,000 of the 53,000 children who died that year received hospice services, and those only briefly. Less than 30% of US hospices provided paediatric care in 2013. Even the hospice I serve in as chaplain is very hesitant to take paediatric patients.
Why the hesitancy?
There are a number of reasons that I have found in my research, but in the forefront is the fear of the care staff that they will become “too attached” to the patient. Another is that many caregivers are so used to caring for the elderly that they are afraid that they will not know how to care for children. While it is hard to see them suffering instead of running and playing, the gratitude they show for your time spent with them transcends the heartbreak.
I continue to push for my hospice and the hospices in surrounding towns to take children as patients. Our nurses and aides have the training. Our doctors are competent. Support from social workers, chaplains and volunteers is available. There is no real excuse why a hospice should not take paediatric patients.
I advocate for palliative care for children because I live with children who have incurable, reoccurring birth defects. I know what it is like to need support and not be able to find it. I know how parents feel in a hospital room when the doctor comes in and delivers devastating news. I also advocate for hospice care for paediatric patients because I know that the care we give to our adult patients can be delivered just as well to the children of our community. It is my dream that by 2020, every hospice will be providing paediatric care.
About the author
David Herndon is the chaplain/bereavement counselor with Comfort Care Hospice in Baxley, Georgia. If you would like to correspond with him, he can be reached at firstname.lastname@example.org.
- National Hospice and Palliative Care Organization ChiPPS White Paper. A Call for Change: recommendations to improve the care of children with life threatening conditions. October 2001
- Lindley LC, Mark BA, Lee S-Y, Domino M, Song M, Jacobson-Vann J. Factors associated with the provision of pediatric hospice care. J Pain Symptom Management. 2013; 45(4): 701-711