Families are confused by palliative care because we (the collective we) keep referring to it as end-of-life care, and the messaging is 95% about planning for death instead of the quality of LIFE being lived.
The quotable Shawshank Redemption rings loudly: "Get busy living, or get busy dying."
The term palliative is not approachable for understanding... I'd love to see a rebrand to medically-complex care, or something to that effect.
Painting all kids on the severe neurological impact spectrum as imminently dying, when many of them live long, high-quality lives does a disservice to their dignity and personhood.
We must be careful with the intention and unintended impact of messaging if we want to build a better comprehensive approach to caring for medically complex children and their families.
Care planning, considerations for advanced directives, succession planning, and financial planning are all very important considerations, but let's not lose focus of the terms LIVING and LIFE.
#PediatricPalliativeCare #SoapboxoftheDay #QualityofLife
Moving forward through healthcare technology
3moThis is such a special team! I was fortunate enough to have my twin boys at Miramar and witness the attention to detail that the team provides to patients and their families. Beautiful pictures!