Category: Meeting Notes

Extra layer of supportive care – Palliative care empowers parents and adds care to support the patient and their family. Lightening the load by helping to navigate a complex medical system.
Looks at the whole patient – Personalized holistic care that looks at the physical, social and spiritual care of the patient taking into consideration goals, values and faith of the family unit.
Communicating with all the different specialists involved, weighing the burdens benefits of treatments so to build a plan that is centered around the whole patient and the family’s goal for their child.
Optimizing quality of life for patient and family and providing comfort for pain and distress.
Identify community based resources – Provide local resources to further help.
1. Courageous Parents - https://courageousparentsnetwork.org/
2. Coalition for Compassionate Care of California/Children’s Hospice Palliative Care Coalition - http://coalitionccc.org/
A familiar face and continuity – A care team who knows the patient and their family and communicates their wish across the different settings of clinic, hospital, skilled nursing facility and home.
Advocate for palliative care – When there is decline in health, frequent ER visits, longer hospitalizations, difficulty managing symptoms, desire to avoid hospitalizations and provide more care in the home, contact the palliative care team at your local children’s hospital.

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