How to discuss – The Complex Care Guide

- - All healthcare providers should talk with their patients about their preferences regarding end of life care
    - Talk early and often
    - May be useful to talk routinely (ie, at the annual health maintenance exam)
  - Shared decision making
    - The patient and family specify their goals of care, the healthcare team offers medically reasonable options and together they make a plan of care
    - The healthcare provider may offer a recommendation regarding care plan and specifics of ADs
      - Example: “Would you like my recommendation?” (Yes) “I think Johnny is very sick and even if we put in a breathing tube it would not cure him and would likely only hurt him. “
  - Be specific
    - Example: “No breathing tubes, cardiac resuscitation, or intensive care unit if my healthcare team determines a low probability of me returning to my prior state of functioning” instead of “No life support if I can’t get better”
  - These conversations should engage and include the child, adolescent, or young adult to the extent that they are developmentally, cognitively, and emotionally able to participate
    - Children
      - My Wishes is a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill
      - To preview: https://www.agingwithdignity.org/shop/product-details/pediatric-my-wishes
    - Adolescents and young adults
      - Voicing My Choices is an advance care planning guide for AYA
      - To preview: https://agingwithdignity.org/docs/default-source/Samples/vmc-sample.pdf?sfvrsn=4
  - These conversations can be emotionally difficult for the patient, caregiver and provider
    - Acknowledge this difficulty
    - Emphasize importance
    - May be helpful to pace conversations
      - Example: Introduce topic at one visit, talk about general topics at next visit, allow patient/family to think and discuss, discuss questions and document specific wishes at next visit, follow up
  - Language to approach ACP
    - “I talk about this with all my patients”
    - “It is important that we know what your goals and wishes are if someday you are too sick to tell us.”
    - “There is no right or wrong to this and you can change your goals and wishes at any time”

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