SD Undiagnosed Family Support Group
  • Home
  • Blog
  • About
  • Resources
  • Contact
  • Facebook Group

Blog

Kimberly Bower M.D. FAAHPM, HMDC, Chief of Palliative Medicine, Rady Children's Hospital San Diego (Meeting Nov. 4, 2017)

11/4/2017

0 Comments

 
Meeting Notes
  1. 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.
  2. 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. 
  3. 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.
  4. Optimizing quality of life for patient and family and providing comfort for pain and distress. 
  5. 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/
  6. 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. 
  7. 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.
0 Comments



Leave a Reply.

    Picture
    The San Diego Undiagnosed Family Support Group brings together families of undiagnosed children to learn, share, and support each other amidst their long journey in search of a diagnosis.

    Categories

    All
    Events
    Meeting Notes
    Mother's Day

    Archives

    July 2020
    June 2020
    April 2020
    February 2020
    September 2019
    July 2019
    May 2019
    March 2019
    November 2018
    October 2018
    June 2018
    May 2018
    February 2018
    January 2018
    November 2017
    October 2017
    August 2017
    June 2017
    May 2017
    February 2017
    November 2016
    October 2016
    August 2016
    July 2016
    May 2016
    January 2016
    October 2015
    July 2015
    April 2015
    January 2015
    November 2014
    August 2014
    June 2014

    RSS Feed

Powered by Create your own unique website with customizable templates.
  • Home
  • Blog
  • About
  • Resources
  • Contact
  • Facebook Group