Caring House The Smarties Series Care Planning for Smarties 1. The Six Keys to Care Planning Success 2. Who Ya Gonna Name? Plus Advance Directives 101 I’ve Been Named: How Do I Do an Amazing Job? 3. What Ya Gonna Tell Em? 4. I’ve Been Named. How Do I Do an Amazing Job? October 9, 2018 5. Care Lingo Decoded. Plus California’s End of Providing peace, comfort and Life Option Act support to men and women at the ends of their lives Background Handouts, Slides and More Ellen Gorbunoff, RN Ed Long, JD You can get all class materials and be notified about future classes by signing up at Handouts Time YourCaringHouse.org/materials Questions Core Concepts Keep Score / Up to Date 1. You have a right to decide whether to Agent selection -- start, Documentation -- decline or What’s Important -- stop Communication available medical treatment (“care decisions”). Copies at 2. You have a right to name another yourcaringhouse.org/scorecard person to make care decisions for you. Page 1
Legal Lingo Principal = The person signing the advance directive naming others to make decisions for them. Agent = A person named to make decisions under an advance directive. Star Trek Prime Directive Agent’s Prime Directive Starfleet personnel 1. Follow the Principal’s wishes shall not interfere with the internal development of 2. If not known, follow the Principal’s values alien civilizations. and views 3. If not known, use Agent’s best judgment and act in the Principal’s best interests Page 2
Top Duties Agent’s Part of the Conversation (It’s a collaboration) Subject Principal’s Duty? Agent’s Duty? Listen Communicate about Principal’s Yes Yes Ask questions wishes, values and views Keep up to date Yes Yes Echo back in your own words Strengthen and support the Yes Agent Confirm that you both understand Speak for and make care Yes Principal’s wishes, values and views decisions for the Principal Communicate Let’s Vote Would you be comfortable saying Two monologues “I don’t understand” do not equal to a doctor? a dialogue 1. Yes 2. No Agent’s List of Tasks See your handout Let’s create a list of tasks Page 3
Task #01 Task #02 Regularly communicate with the Get educated about how to do an Principal and others. awesome job. Task #03 Task #04 Be available when needed. Let the healthcare team know that you are the Agent. Task #05 Task #06 Establish who will be the “MD Ask questions until you have Quarterback.” enough information. Page 4
Task #07 Context Just getting started vs. ODTAA Syndrome Understand the context. Progressive illness? What stage? Exhaustion? Looking for a cure vs. Peace Time Task #08 Goals of Care Return to Create a Good Health Good Death Set and revise Goals of Care. Peace and Combat or comfort Slow Illness See Your Way page 11 Task #09 Two Hands Up? Question #1 -- Would the Make decisions. treatment be medically helpful? Question #2 -- Would the Principal say “Yes” to the treatment? Page 5
Two Hands Up? Task #10 Pursue Set time limits the treatment if Hours, days, weeks Don’t pursue the treatment if Task #11 Task #12 Keep family informed. Self-care. About Caring House John’s Story The first and only non-medical home in Los Angeles County totally focused on end-of-life care An IRC 501(c)(3) nonprofit Volunteer originated, professionally staffed, volunteer supported Revenues from resident/family payments and community donations Page 6
Where to Find Help Doctor Nurse Social worker Spiritual care Bioethics committee Family and friends Additional Resources Your Way, A Guide to Help You Stay in Charge of Decisions About Your Medical Care , from H.E.L.P . Hard Choices for Loving People , by Hank Dunn. End-of-Life, Helping with Comfort and Care , from NIA & NIH Being Mortal , Atul Gawande, book and Frontline documentary Kanako is the Principal You are the Agent Woman, age 76 Dementia, not recognize family for 2 years In hospital for urinary tract infection Can no longer swallow Feeding tube is proposed Page 7
Agent’s Prime Directive 1. Follow the Principal’s wishes 2. If not known, follow the Principal’s values and views 3. If not known, use Agent’s best judgment and act in the Principal’s best interests Five Steps to Doing an Deciding on Feeding Tube Amazing Job as an Agent 1. Know Principal’s wishes, values and views What wishes, values and views of Kanako 1 2 2. Gather information would tell you 3. Set goals of care Yes on feeding tube? 5 3 No on feeding tube? 4. Decide on care/treatment 4 Time limits on feeding tube? with time limits 5. Re-evaluate and return to #1 Caring House Handouts, Slides and More Coming Next You can get all class materials and be notified about future classes by signing up Care Lingo Decoded at Plus CA End of Life Option Act YourCaringHouse.org/materials Providing peace, comfort and support to men and women at the ends of their lives Page 8
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