The Importance of Pediatric Palliative Care

Ananya Domala and Sumukhi Tunuguntla, Guest Writer

In the United States there are only three Pediatric Palliative Care (PPC) Homes. I am sure that the majority of you reading this, don’t even understand what PPC is. The lack of awareness for PPC makes it harder to open more homes. The term Pediatric Palliative Care is used to describe end-of-life needs for children. This care is directed towards children that are “incurable” and moves treatment from the quantity of life to quality of life. George Mark Children’s House in San Leandro is the only PPC home in California. There needs to be more homes for PPC and not programs located in hospitals as children may not be able to understand the concept of death and families may have a hard time coping in an environment like a hospital. PPC has the same facilities as a hospital. However, the environment is kept small (8-12 rooms) with separate beds for guests and suites for the whole family. Accommodations like these allow for the child and family to focus on the child’s needs before their passing. 

 

Per Ken Sommer, the Director of Advancement at George Mark Children’s House, the primary goal of the Children’s House is to keep the child relaxed and comfortable. For example, there is a bereavement room where family and friends can grieve. 

 

Hospital equipment is hidden with murals. George Mark Children’s House wanted to remember all the children that they have cared for. To do this they created teddy bears out of the children’s favorite toys. They also dedicated each tile on the wall to a child cared for in their facility as shown in Image 1 below.

George Mark Children’s House Staff

The Children’s House modified its method of care due to the effect of COVID-19. End-of-life care and transitional care were still allowed during the California lockdowns, but the number of people allowed to visit was limited to immediate family members who tested negative for COVID-19. Due to these precautions, the Children’s House has been COVID-19 free for the majority of the pandemic. 

 

Despite multiple challenges, PPC has prevailed for families in need. The healthcare system is ever-changing and expanding, but it still doesn’t put enough importance on the process and effects of death on families and patients. As a community, we can help support George Mark Children’s Home through financial donations to showcase the importance of PPC.  

 

Please donate by clicking on this link: https://georgemark.salsalabs.org/fundraise/t/mhhsppcawareness