Children are not mini-adults and pediatric palliative care is very different from adult palliative care. Children's symptoms and medications are very specific at the end of life. Hospice physicians and nurses caring for your child should be very familiar with the unique needs of children at this delicate time. Hospice social workers and chaplains should be familiar with the unique emotional and spiritual needs of your child and family as you navigate this difficult time together. Not every hospice is trained or equipped to care for children and their families.
Some questions you can ask to determine if the hospice you are interviewing is equipped to care for your child include:
- How many children have you cared for in the past year?
- Are any of your staff certified in pediatric palliative care?
- Does your agency provide your staff with education or training in pediatric end-of-life issues, and if so, how often?
- What kind of grief support can you offer our family both before and after death?
Ideally the hospice agency you choose will have cared for several children in the past year. It's not essential that they have staff certified in pediatric palliative care, but it is a bonus if they do. They should provide some education or training on pediatric end-of-life issues for their staff at least yearly. Grief support for you and your family is essential and should begin before death occurs. A really good grief program will have specialized programs for siblings, parents, and other family members.
There are many other factors to consider when choosing a hospice agency after you've determined that they are equipped to care for your child and family. See Tips for Choosing a Hospice Agency for more advice.
Choosing the right hospice to care for your child and support your family through this difficult time will make a difference in the quality of your child's final days and improve your precious time spent together.