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The EPEC-O TM Education in Palliative and End-of-life Care - Oncology Project The EPEC-O Curriculum is produced by the EPECTM Project with major funding provided by NCI, with supplemental funding provided by the Lance Armstrong Foundation. E P E C EPEC – Oncology Education in Palliative and End-of-life Care – Oncology O Module 9 Negotiating Goals of Care Overall message Setting goals sustains hope throughout the course of cancer care Objectives Tell the truth while identifying reasonable hope Discuss potential goals of care Use a 7-step protocol to negotiate goals Identify goals when a patient lacks capacity Video Introduction Oncologists' role to clarify goals, treatment plan to achieve goals Goals, expectations may change over time Sustain hope Problems vs. Goals List problems Prepare a plan to resolve each problem Determine overall goal Clarify priorities among competing goals Choose plan to reach goals Reassess each day When problems solved, patient is better Truth-telling and goals. . . Hope Hope: expectation that good things will come An optimistic frame of mind Absence of hope is depression Hopefulness can continue while object of hope changes . . . Truth-telling and goals Wish Wish: something desired, but unlikely Wishes need not prevent appropriate choices Potential goals of care: A dichotomous intent The interrelationship of goals Not a linear sequence Multiple goals often apply simultaneously Goals are often contradictory Certain goals may take priority over others Potential goals of care Cure cancer Relieve suffering Avoid premature death Quality of life Stay in control A good death Support for families and loved ones Maintain or improve function Prolong life Palliative care Focuses on relieving suffering, improving quality of life Any cancer Any time during illness May be combined with curative therapies, or the focus of care Includes supportive care Changing goals Some take precedence over others The shift in focus of care Is gradual Can occur many times Is an expected part of the continuum of comprehensive cancer care The interrelationship of therapies with curative and palliative intent Set goals to sustain hope Establish how information will be shared Define language Prevent surprises Prepare for decision points Common language Medical Language Cure Control Common Language The cancer is gone and won’t come back. Slow or stop the growth for a time. There is no evidence of cancer, but it could come back. Complete response / Remission Partial The cancer is still there, but response smaller. Stable disease The cancer is the same. Progressive disease The cancer is worse. 7-step protocol to negotiate goals of care . . . 1. Create the right setting 2. Determine what the patient and family know 3. Ask how much they want to know and discuss with you 4. Explore what they are expecting or hoping for Identifying goals to hope for False hope may deflect from other important issues True clinical skill to help find hope for realistic goals Determine priorities for treatment, care Based on values, preferences, clinical circumstances Influenced by information from physician, team members . . . 7-step protocol to negotiate goals of care 5. Suggest realistic goals 6. Respond empathetically 7. Make a plan and follow-through Language with unintended consequences Do you want to be aggressive? Will you agree to discontinue care? It’s time we talk about pulling back I think we should stop fighting Won’t they give up hope? “Come on, you’re a fighter!” “You can’t just stop” “Its important to keep trying!” The ‘war’ on cancer Language to describe the goals of care . . . I want to give the best care possible until the day you die We will concentrate on improving the quality of your child’s life Our goal will be to shrink the cancer. We’ll know in 6 weeks . . . Language to describe the goals of care I’ll do everything I can to help you maintain your independence I want to ensure that your father receives the kind of treatment he wants Your child’s comfort and dignity will be my top priority Cultural differences Who gets the information? How to talk about information? Who makes decisions? Ask the patient Consider a family meeting When the physician cannot support a patient’s choices Typically occurs when goals are unreasonable, impossible, illegal Set limits without implying abandonment Make the conflict explicit Try to find an alternate solution Decision-making capacity . . . Implies the ability to understand and make own decision Patient must Understand information Use the information rationally Appreciate the consequences Come to a reasonable decision for him / her . . . Decision-making capacity Any physician can determine Capacity varies by decision Other cognitive abilities do not need to be intact When a patient lacks capacity . . . Proxy decision-maker Sources of information Written advance directives Patient’s verbal statements Patient’s general values and beliefs How patient lived his / her life Best interest determinations . . . When a patient lacks capacity Why turn to others Respects patient Builds trust Reduces guilt and decision-regret E P E C Summary O Setting goals sustains hope throughout the course of cancer care