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Strategies for approaching common issues in palliative and end-of-life care that may be culturally influenced: Advance care planning (ACP) and advance directives (ADs)

Strategies for approaching common issues in palliative and end-of-life care that may be culturally influenced: Advance care planning (ACP) and advance directives (ADs)
Strategies Suggested phrases and tools
  • Find out what the patient has discussed previously with other clinicians or loved ones.
  • Recognize that patients vary in their knowledge and readiness to engage in ACP.
    • Explain the purpose of ACP and ADs if needed.
  • Include family members and/or surrogate decision-makers as much as possible if acceptable to the patient.
  • "Have you ever heard about advance care planning or advance directives? Would it be okay if I tell you more about them?"
  • "Have you ever completed a form called an advance directive? Where is it? What did you write down? Why? Do you still feel the same?"
  • "Is there anyone in your life you trust to make medical decisions for you if you are ever unable to make them?"
    • "If yes, what have you talked about in terms of medical care that is important to you?"
    • Have you written that person's name down on any official forms? Do you have this form? Have you written anything else down?"
    • "Does the person you have chosen to help make decisions know that they were chosen? Have you talked with them about what is important to you and what you want from your medical care?"
    • "Would it be okay if we all talk together? That way, we can make sure their questions are answered, and we could make sure we all know what is important to you in case they ever need to make decisions for you."
  • Consider directing families and patients to freely accessible ACP materials.[1-4]
  • Examples of online toolkits and websites for ACP:
    • prepareforyourcare.org – Includes easy-to-read, evidence-based, legally valid ADs in English and Spanish for all 50 states, and an evidence-based, online, interactive, step-by-step ACP guide with video stories.
    • theconversationproject.org – Provides written conversation guides in several languages to help people talk about their wishes for end-of-life care.
    • americanbar.org – Universal Durable Power of Attorney forms for all 50 states.
    • joincake.com – Includes estate, funeral, and legacy planning.
References:
  1. Sudore RL, Landefeld CS, Barnes DE, et al. An Advance Directive Redesigned to Meet the Literacy Level of Most Adults: A Randomized Trial. Patient Educ Couns 2007; 69:165.
  2. Sudore RL, Schillinger D, Katen MT, et al. Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trail. JAMA Intern Med 2018; 178:1616.
  3. Sudore RL, Boscardin J, Feuz MA, et al. Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans: A Randomized Clinical Trail. JAMA Intern Med 2017; 177:1102.
  4. Sabatino CP. Advance Care Planning Tools That Educate, Engage, and Empower. Public Policy Aging Rep 2014; 24:107.
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