Yes, hospice exists for kids.
The grandmother of one of my patients said that to me last week.
In the last week, I have learned the ins and outs of this all-important transitions. Two of my patients on the ward went home yesterday. By ambulance. One with a chest tube that persisted in pouring out fluid speckled with malignant lymphoma, the other with a body that was devastated at birth, yet still managed to allow one of the most beautiful spirits to inhabit the earth for a short time.
It's a sad time, but also a celebratory time. I didn't fully understand that until this week. This is the critical time for these families, now that they've made this most difficult decision, to celebrate the life of their child, their love for each other. Once that focus shifts, it's as if all the love just pours out.
Some families never get there. Perhaps there is something yet inside them that cannot let go. One of the families was in a most bizarre quagmire of arranging home hospice and comfort care, including the pre-hospital DNR/DNI order, but are still hoping that the alternative medicine treatments will save her. Her mother said to me as they were leaving yesterday that she hoped to bring her back in in a few months, a completely healthy girl. I smiled on the outside and murmured, "I hope so, too." On the inside, what I am hoping for is that they find the strength to let her go before it's too late for them to say goodbye, before it's too late to help her prepare for her death. She's 12. She's scared. She needs them now more than ever to guide her. I hope with all my heart that they can let her go so that her last days might be peaceful.
They are both wonderful children whose lives are far too short. But we love and care for them while they are here. That's the best we can offer, right?