1. 1 Communication at the End of Life Adapted from:The PERT Program 2004 Pain & Palliative Care Research Department Swedish Medical Center, Seattle, Washington Module 23 Geriatric Aide Curriculum NC Division of Health Service Regulation

2. 2 Objectives 1. Describe basic principles of communication at end of life 2. Describe factors that influence communication at end of life 3. Demonstrate effective ways of addressing family and resident concerns at end of life

3. 3 Objectives 4. Demonstrate effective ways of dealing with conflict at end of life 5. Explore individual communication styles and communication within the interdisciplinary team

4. 4 Basic Principles of Communication You cannot not communicate. You cannot not communicate. Communication is a two-way activity. Communication is a two-way activity. Words and actions are interpreted by the receiver base on personal experience. Words and actions are interpreted by the receiver base on personal experience. Much communication is nonverbal. Much communication is nonverbal. Listening is the most important part of end of life communication. Listening is the most important part of end of life communication.

5. 5 Factors Influencing Communication at End of Life Culture Culture Age Age Gender Gender Personal and family experiences Personal and family experiences

6. 6 Culture influences… The rules for communication (for example, is eye contact okay?). The rules for communication (for example, is eye contact okay?). How direct the communication around illness and death is allowed to be. How direct the communication around illness and death is allowed to be. How openly emotions are expressed. How openly emotions are expressed.

7. 7 Culture influences… (continued) How people view illness and death. How people view illness and death. The meanings of words (for example, family, faith). The meanings of words (for example, family, faith). How decisions are made and who speaks for the resident. How decisions are made and who speaks for the resident.

8. 8 Age Consider the developmental stage of the resident when determining how to talk about dying with the resident. Consider the developmental stage of the resident when determining how to talk about dying with the resident. Ask residents what they prefer to be called. Ask residents what they prefer to be called. Be aware of age-related factors, such as poor hearing and eyesight, that impair communication. Be aware of age-related factors, such as poor hearing and eyesight, that impair communication.

9. 9 Gender In general, men and women tend to communicate differently. In general, men and women tend to communicate differently. Culture and religion may affect the social status of men and women, which in turn influences how they expect others to communicate with them. Culture and religion may affect the social status of men and women, which in turn influences how they expect others to communicate with them. Older women may prefer their husband or son to make decisions or talk with the healthcare team. Older women may prefer their husband or son to make decisions or talk with the healthcare team.

10. 10 Life Experiences People who have never or rarely had the experience of trust probably won’t trust you. People who have never or rarely had the experience of trust probably won’t trust you. People who have been demanding all their lives will probably be demanding during the dying phase. People who have been demanding all their lives will probably be demanding during the dying phase. People tend to die the way they have lived, for example:

11. 11 Challenges in Communicating with Residents who are Dying and Their Families Societal denial of death Societal denial of death Lack of direct experience with death Lack of direct experience with death Residents’ and families’ fears and emotions Residents’ and families’ fears and emotions Dementia and other conditions Dementia and other conditions

12. 12 Challenges in Communicating with Residents who are Dying and Their Families (continued) Caregiver concerns: Not knowing what to say Not knowing what to say Not having “the answers” Not having “the answers” Making a mistake and upsetting the family/resident Making a mistake and upsetting the family/resident

13. 13 Challenges in Communicating with Residents who are Dying and Their Families (continued) Caregiver concerns: Fear of showing emotions Fear of showing emotions Difficulties dealing with residents’ and families’ responses Difficulties dealing with residents’ and families’ responses Caregiver’s personal fear of dying Caregiver’s personal fear of dying

14. 14 Therapeutic Communication at the End of Life: Basic Concepts

15. 15 Basic Concepts Use active listening Use active listening Being present, rather than what you say, is most important Being present, rather than what you say, is most important Let the resident and the family lead you – join in their journey Let the resident and the family lead you – join in their journey Encourage reminiscing – let residents and families tell their story Encourage reminiscing – let residents and families tell their story Let residents know that their life has meaning Let residents know that their life has meaning

16. 16 Important Messages to Communicate to Residents and Families at the End of Life I will listen to you. I will listen to you. I will respect you. I will respect you. I will ask you what your hopes, values, and goals are. I will ask you what your hopes, values, and goals are. Adapted from the ELNEC Curriculum, 2000

17. 17 Important Messages to Communicate to Residents and Families at the End of Life (continued) I will try always to act according to your values and goals. I will try always to act according to your values and goals. I will help you meet your goals/realize your hopes. I will help you meet your goals/realize your hopes. Adapted from the ELNEC Curriculum, 2000

18. 18 Important Messages to Communicate to Residents and Families at the End of Life (continued) I will always tell you the truth. I will always tell you the truth. If I don’t know how to address your question or concern, I will ask others to help me. If I don’t know how to address your question or concern, I will ask others to help me. Adapted from the ELNEC Curriculum, 2000

19. 19 Important Messages to Communicate to Residents and Families at the End of Life (continued) I will encourage you to ask questions and answer your questions in a timely way. I will encourage you to ask questions and answer your questions in a timely way. I will tell you about resources available to you. I will tell you about resources available to you. Adapted from the ELNEC Curriculum, 2000

20. 20 I accept you and I will not abandon you.

21. 21 Messages to Give to the Dying I love you I love you I forgive you I forgive you Please forgive me Please forgive me Thank you Thank you Goodbye Goodbye -- Ira Byock, M.D.

22. 22 Timing Make sure the resident and/or family is physically comfortable before starting a conversation. Make sure the resident and/or family is physically comfortable before starting a conversation. Whenever possible, use the resident’s and family’s timetable, not yours. Whenever possible, use the resident’s and family’s timetable, not yours.

23. 23 Asking Questions Ask only necessary questions. Ask only necessary questions. Focus questions on the resident’s and family’s concerns. Focus questions on the resident’s and family’s concerns. Respect privacy, including the privacy of the resident’s and family’s emotions. Respect privacy, including the privacy of the resident’s and family’s emotions. If you need to ask a sensitive question, explain first why you need to ask it. If you need to ask a sensitive question, explain first why you need to ask it.

24. 24 Instilling Hope at the End of Life

25. 25 Dimensions of Hope Experiential: Experiential: Accepting and moving beyond current suffering Accepting and moving beyond current suffering Rational Thought: Rational Thought: Setting goals and maintaining control Setting goals and maintaining control

26. 26 Dimensions of Hope Relational: Relational: Connectedness to other people Connectedness to other people Spiritual: Spiritual: Connectedness to God or something “bigger” than oneself Connectedness to God or something “bigger” than oneself

27. 27 Experiential Prevent and manage symptoms Prevent and manage symptoms Use lightheartedness and humor skillfully Use lightheartedness and humor skillfully Support resident and families in positive self talk Support resident and families in positive self talk

28. 28 Experiential (continued) Help residents and families “go beyond” their suffering Engagement in creative, joyous, aesthetic activities Engagement in creative, joyous, aesthetic activities Encourage reminiscing Encourage reminiscing Focus on past and present joys Focus on past and present joys Share positive, hope-inspiring Share positive, hope-inspiring stories stories

29. 29 Spiritual Help resident participate in religious rituals Help resident participate in religious rituals Assist in arranging clergy or other spiritual advisor visits Assist in arranging clergy or other spiritual advisor visits Help resident and family find meaning in the experience Help resident and family find meaning in the experience

30. 30 Relational Provide time for relationships Provide time for relationships Affirm resident’s and family's sense of self- worth Affirm resident’s and family's sense of self- worth Establish and maintain an open, respectful connection Establish and maintain an open, respectful connection

31. 31 “Hope is an act of collaboration, it cannot be achieved alone. We offer grains or fragments of hope to one another so that everyone’s sense of possibility can grow. In this way we can do together what might seem impossible alone.” ~Kathleen Fischer

32. 32 Rational Thought Assist resident and family to identify, obtain, and revise goals Assist resident and family to identify, obtain, and revise goals Help resident and family identify resources to achieve goals Help resident and family identify resources to achieve goals Maintain resident & family sense of control Maintain resident & family sense of control

33. 33 Rational Thought (continued) Provide accurate information about the resident's condition Provide accurate information about the resident's condition Help resident & family identify past successes Help resident & family identify past successes

34. 34 Symbolic Language “I want to go home”

35. 35 Symbolic Language Explore with the family the possible meanings Explore with the family the possible meanings Don’t contradict statements; either be silent or ask the person how he or she feels Don’t contradict statements; either be silent or ask the person how he or she feels Don’t assume delirium Don’t assume delirium

36. 36 Working with Families at the End of Life

37. 37 Needs of the Family in Long-Term Care Participating Participating Letting Go/Letting In Letting Go/Letting In Going Through the Stages of Grief Going Through the Stages of Grief Achieving Connection Achieving Connection ~Bill Keane

38. 38 There is the potential for growth and change throughout the family lifecycle.

39. 39 Fear Anger Sadness Relief Hopelessness Helplessness Ambivalence Acceptance Guilt Resident and Family: Emotions and Responses to Impending Death

40. 40 How can families be angry with us when we haven’t done anything wrong?

41. 41 Dealing with Conflict at the End of Life

42. 42 If You get Caught in the Middle of a Family Conflict, Remember: There are many points of view in every situation There are many points of view in every situation You’re only seeing a snapshot You’re only seeing a snapshot Don’t take sides Don’t take sides Grief can be expressed as anger Grief can be expressed as anger Anger may be directed at people who are “safe” targets (for example, staff!) Anger may be directed at people who are “safe” targets (for example, staff!)

43. 43 Tips for Managing Your Own Responses Remove yourself from the situation Remove yourself from the situation Ask yourself: What am I feeling? Anger? Fear? Ask yourself: What am I feeling? Anger? Fear? Are you expressing these emotions? How? Are they affecting your care? Are you expressing these emotions? How? Are they affecting your care?

44. 44 Tips for Managing Your Own Responses (continued) Talk with other team members Talk with other team members Make a plan for dealing with the conflict Make a plan for dealing with the conflict Use “I” statements, such as “I feel uncomfortable when you raise your voice.” Use “I” statements, such as “I feel uncomfortable when you raise your voice.”

45. 45 When Communicating With Someone Who is Upset: Put yourself in that person’s position – how would you feel? Put yourself in that person’s position – how would you feel? Treat the person with respect Treat the person with respect Answer the person’s questions or find someone who can Answer the person’s questions or find someone who can Stay calm; don’t raise your voice Stay calm; don’t raise your voice Don’t argue or touch the person Don’t argue or touch the person

46. 46 When Communicating With Someone Who is Upset: (continued) Use active listening skills – let the person vent but don’t let the person abuse Use active listening skills – let the person vent but don’t let the person abuse Remember that anger is a normal part of the grieving process Remember that anger is a normal part of the grieving process Report the person’s behavior to the team Report the person’s behavior to the team

47. 47 Strengthening Your Communication Skills

48. 48 Strengthen Your Skills What’s your communication style? Direct? Quiet? What’s your communication style? Direct? Quiet? What communication styles are easy for you to deal with? What communication styles are easy for you to deal with? What styles are difficult for you? What styles are difficult for you? Does your nonverbal communication match your verbal message? Does your nonverbal communication match your verbal message?

49. 49 Strengthen Your Skills (continued) What are the communication styles of other team members? What are the communication styles of other team members? How do these different styles cause tension? How can the styles strengthen the team? How do these different styles cause tension? How can the styles strengthen the team? Do you understand your role on the team? Do you understand your role on the team? Can you tell others about your role? Can you tell others about your role?

50. 50 Respect

51. 51