1. TM The EPEC-O Project Education in Palliative and End-of-life Care - Oncology The EPEC™-O Curriculum is produced by the EPEC TM Project with major funding provided by NCI, with supplemental funding provided by the Lance Armstrong Foundation.

2. EPEC  – Oncology Education in Palliative and End-of-life Care – Oncology Module 9: Negotiating Goals of Care Module 9: Negotiating Goals of Care

3. Overall message Setting goals sustains hope throughout the course of cancer care.

4. Objectives l Tell the truth while identifying reasonable hope. l Discuss potential goals of care. l Use a seven-step protocol to negotiate goals. l Identify goals when patient lacks capacity. l Tell the truth while identifying reasonable hope. l Discuss potential goals of care. l Use a seven-step protocol to negotiate goals. l Identify goals when patient lacks capacity.

5. Video

6. Introduction l Oncologists' role to clarify goals, treatment plan to achieve goals l Goals, expectations may change over time l Sustain hope l Oncologists' role to clarify goals, treatment plan to achieve goals l Goals, expectations may change over time l Sustain hope

7. Problems vs. Goals l List problems l Prepare plan to resolve each problem l Reassess each day l When problems solved, patient is better l List problems l Prepare plan to resolve each problem l Reassess each day l When problems solved, patient is better l Determine overall goal l Clarify priorities among competing goals l Choose plan to reach goals

8. Honesty and goals... Hope l Hope: expectation that good things will come  An optimistic frame of mind l Absence of hope is depression l Hopefulness can continue while object of hope changes l Hope: expectation that good things will come  An optimistic frame of mind l Absence of hope is depression l Hopefulness can continue while object of hope changes

9. l Wish: something desired, but unlikely l Wishes need not prevent appropriate choices l Wish: something desired, but unlikely l Wishes need not prevent appropriate choices... Honesty and goals Wish

10. Potential goals of care: A dichotomous intent

11. Interrelationship of goals l Not a linear sequence l Multiple goals often apply simultaneously l Goals are often contradictory l Certain goals may take priority over others l Not a linear sequence l Multiple goals often apply simultaneously l Goals are often contradictory l Certain goals may take priority over others

12. Potential goals of care l Cure cancer l Avoid premature death l Maintain or improve function l Prolong life l Cure cancer l Avoid premature death l Maintain or improve function l Prolong life l Relieve suffering l Quality of life l Stay in control l A good death l Support for families and loved ones

13. Palliative care l 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 l 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

14. Changing goals l Some take precedence over others l The shift in focus of care  Is gradual  Can occur many times  Is an expected part of the continuum of comprehensive cancer care l Some take precedence over others l The shift in focus of care  Is gradual  Can occur many times  Is an expected part of the continuum of comprehensive cancer care

15. The interrelationship of therapies with curative and palliative intent

16. Set goals to sustain hope l Establish how information will be shared l Define language l Prevent surprises l Prepare for decision points l Establish how information will be shared l Define language l Prevent surprises l Prepare for decision points

17. Common language Medical LanguageCommon Language CureThe cancer is gone, and won’t come back ControlSlow or stop the growth for a time Complete response or Remission There is no evidence of cancer, but it could come back Partial responseThe cancer is still there, but smaller Stable diseaseThe cancer is the same Progressive diseaseThe cancer is worse

18. Seven-step protocol to negotiate goals of care... 1. Create the right setting. 2. Determine what the patient and family know. 3. Explore what they are expecting or hoping for/Ask how much they want to know. 1. Create the right setting. 2. Determine what the patient and family know. 3. Explore what they are expecting or hoping for/Ask how much they want to know.

19. Identifying goals to hope for l False hope may deflect from other important issues l True clinical skill to help find hope for realistic goals l False hope may deflect from other important issues l True clinical skill to help find hope for realistic goals

20. Determine priorities for treatment, care l Based on values, preferences, clinical circumstances l Influenced by information from physician, team members l Based on values, preferences, clinical circumstances l Influenced by information from physician, team members

21. ... Seven-step protocol to negotiate goals of care 4. Suggest realistic goals. 5. Respond empathetically. 6. Make a plan and follow through. 7. Review and revise periodically. 4. Suggest realistic goals. 5. Respond empathetically. 6. Make a plan and follow through. 7. Review and revise periodically.

22. Language with unintended consequences l “Do you want to be aggressive?” l “Will you agree to discontinue care?” l “It’s time we talk about pulling back.” l “I think we should stop fighting.” l “Do you want to be aggressive?” l “Will you agree to discontinue care?” l “It’s time we talk about pulling back.” l “I think we should stop fighting.”

23. Won’t they give up hope? l “Come on, you’re a fighter!” l “You can’t just stop” l “Its important to keep trying!” l The “war” on cancer l “Come on, you’re a fighter!” l “You can’t just stop” l “Its important to keep trying!” l The “war” on cancer

24. Language to describe the goals of care... l “I want to give the best care possible until the day you die.” l “We will concentrate on improving the quality of your child’s life.” l “Our goal will be to shrink the cancer. We’ll know in 6 weeks.” l “I want to give the best care possible until the day you die.” l “We will concentrate on improving the quality of your child’s life.” l “Our goal will be to shrink the cancer. We’ll know in 6 weeks.”

25. ... Language to describe the goals of care l “I’ll do everything I can to help you maintain your independence.” l “I want to ensure that your father receives the kind of treatment he wants.” l “Your child’s comfort and dignity will be my top priority.” l “I’ll do everything I can to help you maintain your independence.” l “I want to ensure that your father receives the kind of treatment he wants.” l “Your child’s comfort and dignity will be my top priority.”

26. Cultural differences l Who gets the information? l How to talk about information? l Who makes decisions? l Ask the patient. l Consider a family meeting. l Who gets the information? l How to talk about information? l Who makes decisions? l Ask the patient. l Consider a family meeting.

27. When the physician cannot support a patient’s choices l Typically occurs when goals are unreasonable, impossible, illegal l Set limits without implying abandonment l Make the conflict explicit l Try to find an alternate solution l Typically occurs when goals are unreasonable, impossible, illegal l Set limits without implying abandonment l Make the conflict explicit l Try to find an alternate solution

28. Decision-making capacity... l Implies the ability to understand and make own decision l Patient must 1. Understand information 2. Use the information rationally 3. Appreciate the consequences 4. Come to a reasonable decision for him/ herself l Implies the ability to understand and make own decision l Patient must 1. Understand information 2. Use the information rationally 3. Appreciate the consequences 4. Come to a reasonable decision for him/ herself

29. ... Decision-making capacity l Any physician can determine l Capacity varies by decision l Other cognitive abilities do not need to be intact l Any physician can determine l Capacity varies by decision l Other cognitive abilities do not need to be intact

30. When a patient lacks capacity... l Proxy decision maker l Sources of information o Written advance directives o Patient’s verbal statements o Patient’s general values and beliefs o How patient lived his/her life o Best-interest determinations l Proxy decision maker l Sources of information o Written advance directives o Patient’s verbal statements o Patient’s general values and beliefs o How patient lived his/her life o Best-interest determinations

31. ... When a patient lacks capacity l Why turn to others? o Respects patient o Builds trust o Reduces guilt and decision-regret l Why turn to others? o Respects patient o Builds trust o Reduces guilt and decision-regret

32. Summary Setting goals sustains hope throughout the course of cancer care.