Palliative Care Updates & Advance Care Planning Part II

1. Anne Kinderman, MD Director, Supportive & Palliative Care Service, ZSFG Associate Clinical Professor of Medicine, UCSF Palliative Care Updates &Advance Care Planning Part II

2. Disclosures • No significant financial relationships to disclose

3. What I hope you will learn • Describe common cultural issues related to end-of-life care, among vulnerable San Franciscans • Identify practical strategies to motivate patients to engage in advance care planning discussions • Describe palliative care resources available in the SF Health Network, as well as continuing education opportunities in palliative care

4. Roadmap • Updates in palliative care in SFHN • Advance Care Planning Workshop • Highlight opportunities for continuing education & training in palliative care

5. Updates in Palliative Care in SFHN • Oncology-Plus Team launched Feb 2016 • Current staffing: 1 NP, 0.2 volunteer chaplain • Additional staffing anticipated in 2016-17 • Part-time MD • Full-time SW • Available for cancer patients, regardless of: • Cancer type • Cancer stage • Treatment options • (Not for pts who are ready for hospice, or whose cancer is cured or in remission)

6. Updates in Palliative Care in SFHN • Oncology-Plus Team (cont.) • Structure • 2 half-days of clinic (SFGH 4C) • Following pts when hospitalized, btw visits (phone f/u) • Services • Sx mgmt • Advance Care Planning • Care coordination • Counseling and support • How to access • eReferral • Page for urgent issues (443-8864, Mon-Fri 8a-5pm)

7. Updates in Palliative Care in SFHN • End of Life Option Act -- BASICS • Will go into effect June 9 • Requirements • CA resident, adult with capacity • 2 verbal requests (15 days apart) + 1 written request • Witnessed written request • Interpreter written statement for LEP patients • Attending + Consulting Physician assessments • Mental health specialist consult prn • Chart documentation of dx, prognosis, capacity assessment, information provided • Forms submitted to state by all parties (including pt) • Prescription needs to go directly from MD to pharmacy (not given to pt)

8. Updates in Palliative Care in SFHN • End of Life Option Act • Providers not obligated to participate • SFHN working on DPH policy • ZSFG Ethics Committee actively discussing • Active questions/issues • Access to medications • Translation of materials and role of interpreters • Process for homeless patients • Different policies in different settings

9. Advance Care Planning Workshop • Where are WE coming from? • Deeper dive into challenging cases • Spiritual/religious coping • Request not to inform • For each case • Small group observations, reflection • Brief didactic and suggestions • Small group practice, reflection • Group discussion

10. Culture of American Medicine • Emphasis placed on • Autonomy • Standardization • New (and costly) • Diagnostics • Role expectations • Provider • Patient • Family, caregivers

11. We bring our experiences • Previous patients • Experiences with family and friends • Culture • Norms in your practice location

12. What are YOU bringing to the conversation? • Poignant personal experiences • Family and friends • Patients • Personal preferences • Documentation completed (or not) How do you define a “good death”? What do you think is important at end of life? Go Wish Game

13. Pre-contemplation ACP and Motivational Interviewing Maintenance Contemplation Action ● Discuss with family ● Discuss with clinicians ● Document

14. Preparation & Values Clarification Pre- contemplation Action Maintenance • Little/no insight into declining health condition • No advance planning for emergency care • No identified or documented surrogate decision-maker Contemplation • Some insight into severity of condition, recognize decline, may voice concerns related to condition • May have thought about wishes but has not communicated them to anyone • May be able to name a potential surrogate but has not completed DPOA form • Willing to engage, discuss health condition; may or may not want information on prognosis • Willing to engage in conversation about values related to health care • Willing to consider filling out advance directive or POLST • Has insight into severity of condition, recognizes decline, may voice concerns related to condition • Recognizes that advance care planning is important, and states plan/intention to formalize preferences in advance directive and/or DPOA designation • May have discussed preferences with provider and/or friends/family, or is planning to do so • Has insight into severity of condition • Has completed some form of advance directive • Has discussed preferences with provider and/or friends/family

15. Case 1 You are seeing Mr. Rodriguez in follow-up. He is a 58 year-old man with non-small cell lung cancer, who just completed his last scheduled cycle of chemotherapy. He is due for a follow-up scan in 2 weeks. You want to bring up advance care planning now that things have settled a bit. When you ask him about planning ahead for his care, he says, “God will decide.”

16. Discussion with Partner • Have you had patients make similar statements? • How do you usually respond? • What thoughts/emotions do these statements trigger in you? • How ready is Mr. Rodriguez to engage in advance care planning? • What else might you want to ask to find out?

17. Expressions of spirituality • “God will decide.” • “I’m praying for a miracle.” • “We have to have faith.” • “God healed our brother.” • “Why is this happening to me?” • “I think God is punishing me for the things I’ve done in the past.”

18. Spirituality: Common disconnect Patients • 93% of Americans believe in God or a higher power • 45% to 73% of seriously ill patients indicate that their religious beliefs affect their medical decisions • Providers • 76% of physicians say they believe in God • 90% of physicians do not take a spiritual history • 45% think this is inappropriate • Only 5% of physicians report getting training on taking spiritual hx Koenig HG, “Religious Practices and Health: An Overview” Curlin FA, 2005 JGIM

19. Case Review: Opportunities • Explore important means of coping, identity • Explore potential underlying emotions • Explore preferences re: information and decision-making

20. Explore spirituality* • F – Faith and Belief • Is faith or spirituality important to you? • I – Importance/Influence • What importance does your spirituality have in our life? • Has your spirituality influenced how you take care of yourself, your health? Does your spirituality influence you in your healthcare decision making? • C – Community • Are you part of any religious or spiritual community? • A– Address in Care • What should I know about your spiritual beliefs, as your provider? *spiritualty doesn’t always make sense in other languages

21. Explore Emotion • What do you notice? • Verbal • Non-verbal • Respond – see handout • Naming • Understanding • Respecting • Supporting • Exploring

22. Explore preferences fordecision-making • Level of information/detail desired • Best way pt takes in information • Who else should be involved • Desire for recommendations from you

23. Revisit Mr. Rodriguez with partner • 1 person Mr. Rodriguez, other is his provider • Pick up conversation from provider asking him whether he’s thought about what he would want if he got sicker • Provider: Try out communication technique • Explore spiritual history • Explore emotion • Explore decision-making preferences

24. Case 2 You are about to see Mr. Li, a 65 year-old Cantonese-speaking man who became your patient after immigrating to the US in 2013. You recently referred him for colonoscopy for weight loss and bloody stools, and bx was consistent with invasive adenocarcinoma. As you approach the exam room, his son is standing outside and stops you, asking about the diagnosis, and tells you not to inform Mr. Li that he has cancer.

25. Discussion with Partner • Have you gotten similar requests from family members? • How do you usually (or would you) respond? • What thoughts/emotions do these requests trigger in you? • How ready is Mr. Li to engage in advance care planning? • What else might you want to ask to find out?

26. Requests to withhold information: where do they come from? • Cultural/societal norms • Chinese culture • Other cultures, religions • Culture/norms of other medical systems • Family roles • Fear that talking about bad things takes away hope

27. Hope in serious illness • Study of hope and ACP in advanced CKD • Most pts wanted more information • “information was seen as vital in maintaining their ability to hope” “Healthcare providers are reluctant to talk about EOL issues. I think they are afraid of how you are going to react. I don’t think they know what to say. No, I want to talk about it, but nobody will talk to me. At least that’s how I feel! Unless they think I’m not taking it in as much as I should because I’m laughing all the time. But, inside I am hurting like mad, but I can’t get that out” Davison SN, 2006 BMJ

28. Hope in serious illness, cont. • Partial disclosure risks breaking trust with pt, eroding hope • No evidence of increased depression or anxiety in ACP studies • Enables other important EOL tasks • Meaning making • Prioritizing “bucket list” • Leaving legacy • Relieving burden on family

29. What is son concerned about? • What do you notice? • Verbal • Non-verbal • Communication Techniques • Ask-Tell-Ask • First with son • Next with patient • Allow silence (Count to 3 before responding)

30. Revisit Mr. Li with partner • 1 person Mr. Li’s son, other is his provider • Pick up conversation from son asking provider not to tell Mr. Li about his diagnosis • Provider: Try out communication technique • Ask-Tell-Ask • Allow silence • Explore emotion (NURSE)

31. Advance Care Planning Wrap-Up • What techniques were helpful? • What do you need to practice more? • What are you taking with you to next ACP discussion? • Awareness of own preferences/beliefs? • New tools to use?

32. Additional Education and Training in Palliative Care • Continuing Education and Training • For Nurses: ELNEC http://www.aacn.nche.edu/elnec • Communication Training: VitalTalk http://vitaltalk.org/courses • EPEC (Education in Palliative and End-of-Life Care) http://www.epec.net/ • CME courses on pain management • SF Heath Plan • CA Medical Board http://www.mbc.ca.gov/Licensees/Continuing_Education/Pain_Management_Classes.aspx • Mayo Clinic, Cleveland Clinic, AAFP, UC Davis, etc.

33. Continuing Education and Training:Deeper Dives • UCSF: Continuing Interprofessional Education in Palliative Care: A Longitudinal Learning Experience • CONTACTS: Wendy Anderson, DorAnne Donetsky • Harvard Program in Palliative Care Education and Practice (PCEP) • Interdisciplinary Certificate Programs • CSU Institute for Palliative Care • U Colorado Denver Masters in Palliative Care • UW Interprofessional Graduate Certification Course in PC

34. Suggested Reading

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