Horrible as it is to watch a spouse or parent as they die, it's everyone's worst-case scenario to lose a child.
After I wrote in April about caring for my husband at home as he died of brain cancer, Stacy and Ari Goldberg, whose teenage daughter Rina died in 2010, and Tammy Kang, a pediatric neuro-oncologist, wrote to share their thoughts on children and hospice.
Their e-mails are below. If you have other issues about caregiving at the end of life, death, or widowhood, contact me at firstname.lastname@example.org or 215-854-4944.
- Stacey Burling
We appreciate your sharing in such a public forum your own loss and experience with hospice. Indeed, we believe you are giving a space to discussion that is needed.
Everything [you wrote] was about caregiving and hospice for adults and the elderly. [But] this is a topic for children and parents too.
Our 15-year-old daughter passed away on Dec. 29, 2010, after a valiant battle with mitochondrial disease. She was on hospice the last eight weeks of her life.
I would like to bring to attention the incredible blessed work that Keystone Care of Wyndmoor does as a pediatric home hospice agency.
They gave us the ability to be at home with our daughter, and for her to be surrounded by peace, tranquillity, and all the comforts of home.
The pediatric clinical nurse, Shannon Buffler, is one of the most incredible women we have ever met. She gave with her whole heart with incredible dedication beyond words. To be a pediatric hospice nurse, dealing with babies, children, and teenagers at the end of their life and supporting the family, is something to be recognized with much admiration.
Wishing you peace,
Stacy and Ari Goldberg
Thank you so much for sharing your personal experiences and for helping educate the community about the benefits of palliative care and hospice. As a pediatric neuro-oncologist and the cofounder and director of the palliative care service at CHOP, I found your articles particularly relevant and poignant. As difficult as it is for providers and society to acknowledge death in young adults and the elderly, it seems even more of an uphill battle to acknowledge the same for children.
Many parents find themselves in [the difficulties you described] with the added pressure that parents are expected to care for their child 24/7, regardless of how complicated caring for someone with advanced illness can be. For parents of adolescents and young adults with similar practical issues, it can be impossible. We do encourage our families to engage in hospice services early, especially now that children can receive hospice care while still pursuing curative treatments. But the perception that hospice equals giving up and the limited number of pediatric trained hospice providers are formidable barriers.