The goal of pediatric palliative care is to improve the lives of both the child with a complex medical condition and their family. Palliative care offers a source of support and comfort for patients and their families. This support may include helping with symptom management, providing social or emotional support, or assisting families with defining or communicating their goals. The Courageous Parents Network provides information about pediatric palliative care.
When there are no more curative care options to be offered, hospice care can offer beneficial services for children and their families. Hospice organizations provide end-of-life care for patients as well as counseling and other resources for caregivers and siblings.
Hospice organizations can be found in your community, either by searching online or by referral from your provider or the Pediatric Enhanced Care Program.
Because We Care Program at Brenner Children’s Hospital
Losing one's child to death can often be the single most devastating tragedy a parent can ever face. The purpose of the Because We Care program is to walk alongside families travelling down the road of grief.
In 1992, following the loss of her son, Linda Burdick and another pediatric nurse began Because We Care, the pediatric bereavement program of Brenner Children's Hospital. Since the time of inception Because We Care has provided support to over 2000 families throughout North America. The program offers support to families whether their child was a current or previous patient at Brenner Children's through handwritten notes, bereavement literature, and cards sent to families over the course of two years. We also remember families at the especially sensitive and difficult times such as holidays, birthdays, and anniversary of their child's death.
This support is provided by staff members who volunteer to be the contact for a family, often following the development of a relationship with the family during their child's hospitalization. A unique aspect of our program is the yearly memorial service held in December in the chapel of our hospital. The first year following the death of their child, families are invited to attend the service and a star with their child's name on it is placed on a memorial tree. At the conclusion of the service families are provided a reception during which they can interact with staff who cared for their child as well as other families of bereaved children. Families are invited for two years to the service, but often they return for multiple years.
- Heartstrings is a local support for bereaved parents, offering compassion and bereavement support for families who have lost a pregnancy, an infant, or a child. One of the resources offered is a peer-support program guided by bereaved parents in partnership with facilitators.
- Compassionate Friends offers online grief support for families who have lost a child. The website contains online support as well as links to local support chapters.
- Contact your local hospice or church community for further bereavement support/resources. Many local hospices will provide free grief counseling regardless of whether or not the child was a hospice patient.