1. End of Life Training Today that Supports Everyone Tomorrow Elizabeth Klein, MD FAAFP Providence Family Medicine Milwaukie Oregon

3. Introduction/ Review Objectives Objectives 1) Be able to describe issues around culturally competent, patient centered end of life care and training. 1) Be able to describe issues around culturally competent, patient centered end of life care and training. 2) Be able to describe and use Advance Directives, POLST forms and video tapes to provide excellent care and training around end of life issues. 2) Be able to describe and use Advance Directives, POLST forms and video tapes to provide excellent care and training around end of life issues.

4. Objectives continued 3) Be able to list competencies for end of life discussions and care. 3) Be able to list competencies for end of life discussions and care. 4) Be able to locate and use additional resources to assist with end of life discussions, care and training. 4) Be able to locate and use additional resources to assist with end of life discussions, care and training.

5. Individual Perspective/ Goals What is your perspective? What is your perspective? What are your goals for this session? What are your goals for this session? Working Seminar Working Seminar Review the handout Review the handout You will learn more from the activities/ exercises then the didactics. You will learn more from the activities/ exercises then the didactics.

7. Oregon Perspective Priority on deciding their own fate Priority on deciding their own fate We have developed systems to assist us. We have developed systems to assist us. ? What % of US citizens die in hospital? ? What % of US citizens die in hospital? ? What % of Oregonians die in hospital? ? What % of Oregonians die in hospital? ? What % of Oregonians die at home? ? What % of Oregonians die at home? ? What % of US Citizens want to die at home? ? What % of US Citizens want to die at home?

8. Oregon Perspective continued Oregon ranks #1 in use of home hospice care. Oregon ranks #1 in use of home hospice care. Feeding tubes are used less often in Oregon and withdrawn more often. Feeding tubes are used less often in Oregon and withdrawn more often. ? Adequate pain control is possible in what % of people at end of life? ? Adequate pain control is possible in what % of people at end of life? Only 50% of people believe that they have adequate pain control at end of life. Only 50% of people believe that they have adequate pain control at end of life.

9. Survival after CPR < 70 years old- 15 % survive < 70 years old- 15 % survive 70-79 years old – 12 % survive 70-79 years old – 12 % survive 80-89 years old- 10 % survive 80-89 years old- 10 % survive > 89 years old – 0 % survive > 89 years old – 0 % survive > 50 % do not want CPR again > 50 % do not want CPR again Schneider, AP J AM Board of Family Practice 1993: 6:91-101 Schneider, AP J AM Board of Family Practice 1993: 6:91-101

10. End of life care- What else can we offer? What can be done? Quality, comfort, dignity. Quality, comfort, dignity. Better pain relief. Better pain relief. Strengthening of relationships. Strengthening of relationships. Dying at home in familiar surroundings with family present free of medical machinery. Dying at home in familiar surroundings with family present free of medical machinery. Continuity of self. Continuity of self.

11. 2006 Perspective in United States Death Denying Death Denying Life Prolonging Life Prolonging High Tech Emphasis High Tech Emphasis But is this what everyone really wants? But is this what everyone really wants?

13. “Good Death” Exercise Pair Up Pair Up Think about a “Good Death”. Think about a “Good Death”. Who was it and what made it a “good death”? Who was it and what made it a “good death”? What did you or others contribute? What did you or others contribute? What about the setting contributed to “good”? What about the setting contributed to “good”?

15. Patient and Learner Perspective Understanding perspective of patient is essential for good End of Life Care Understanding perspective of patient is essential for good End of Life Care Learner centered communication is essential for teaching good End of Life Care Learner centered communication is essential for teaching good End of Life Care US consists of 2,700 different ethno- cultural groups each with its own language, culture and cultural code. US consists of 2,700 different ethno- cultural groups each with its own language, culture and cultural code.

16. USA Diversity 2004 1 in 4 US physicians was foreign born and foreign trained 2004 1 in 4 US physicians was foreign born and foreign trained 2 million new immigrants to US each year 2 million new immigrants to US each year 35-40 % of patients differ culturally from their caregiver/ physician 35-40 % of patients differ culturally from their caregiver/ physician Gottfried Oosterwal, Ph. D Gottfried Oosterwal, Ph. D

17. Chinese Culture Example Do not tell patient regarding terminal illness Do not tell patient regarding terminal illness Live long but live well. “ Die with a full stomach” Live long but live well. “ Die with a full stomach” Organ and tissue donation are not to be done. Organ and tissue donation are not to be done. Body is a gift, keep it whole. Body is a gift, keep it whole.

18. 2 Different Approaches Learn beliefs of each individual culture or…… Learn beliefs of each individual culture or…… Believe that every person assigns meaning to their disease and value to treatments. Believe that every person assigns meaning to their disease and value to treatments. Our job is to find out that meaning and create a “shared reality” Our job is to find out that meaning and create a “shared reality”

19. Many Issues to Confront Denial vs. affirmation Denial vs. affirmation Denial vs. preparation Denial vs. preparation Attitudes towards pain and pain management Attitudes towards pain and pain management Role of family Role of family Rituals around death, sharing food, grief, loss and bereavement Rituals around death, sharing food, grief, loss and bereavement

20. Seek to Understand Engage- Optimize time and place and info Engage- Optimize time and place and info Empathize- Observe and respond to feeling Empathize- Observe and respond to feeling Educate- Ask what they know about the disease process Educate- Ask what they know about the disease process Enlist- Establish goals and overall plan Enlist- Establish goals and overall plan

21. Video Tape Exercise Groups of 3 Groups of 3 Listen, seek to understand the patient’s perspective and goals for end of life and end of life care Listen, seek to understand the patient’s perspective and goals for end of life and end of life care

23. Skills for Teaching End of Life Care Case conference, seminars, didactics, video- precepting, video taping, co-management, and in-hospital teaching Case conference, seminars, didactics, video- precepting, video taping, co-management, and in-hospital teaching 12 Fast Facts 12 Fast Facts  Prognostication  Personal Mortality  Delivering “Bad News”  Taking a Spiritual History

24. Skills for Teaching End of Life Care continued  Hope and Truth Telling  Decision Making Capacity  8 Myths around Advance Decision Making  Discussing DNR Orders  Family Meetings  Informing others of patient’s death

25. Skills for Teaching End of Life Care continued  Grief and Bereavement  Expressing condolences  Addressing patient and family anger or other emotions

26. End of Life Competency Form Ralph Bramucci PhD Building a Relationship Building a Relationship Patient Centered Interview Patient Centered Interview Gathering Information Gathering Information Signs of Empathy Signs of Empathy Interaction Style Interaction Style Patient Education Patient Education Planning and Closure Planning and Closure

28. Systems to Support Good End of Life Care Health Care Proxy on Vital Signs Form in EHR. We ask about this at routine visits. Health Care Proxy on Vital Signs Form in EHR. We ask about this at routine visits. Advance Directives and reminders Advance Directives and reminders POLST forms and reminders POLST forms and reminders

29. Vital sign form

30. POLST - Physician Orders for Life Sustaining Treatment Video Review Video Review Electronic Health Record of POLST Electronic Health Record of POLST

31. EHR POLST Example

32. POLST page 2

33. References Gordon, Geoffrey H. MD, Conversations at the End of Life, The Bayer Institute for Health Care Communication Inc, West Haven, CN, 2003 www.bayerinstitute.org Gordon, Geoffrey H. MD, Conversations at the End of Life, The Bayer Institute for Health Care Communication Inc, West Haven, CN, 2003 www.bayerinstitute.orgwww.bayerinstitute.org Fast Facts & Concepts, End of Life Physicians Education Resource Center, www.eperc.mcw.edu Fast Facts & Concepts, End of Life Physicians Education Resource Center, www.eperc.mcw.edu www.eperc.mcw.edu www.polst.org www.polst.org www.polst.org

36. Each Person Leaves Gifts What did you learn? What did you learn? What will you take back to your program? What will you take back to your program? Questions and answer session Questions and answer session