Impact of Grief: Ours and Those We Serve

1. Impact of Grief: Ours and Those We Serve Tani Bahti - RN, CT, CHPN Executive Director Passages Support, Education in End of Life Issues ¡Vida! Educational Series

2. Educational Objectives Appraise the impact of grief on you as a provider List 4 possible manifestations of grief Describe ways to support those who are grieving Identify ways in which grief opens us to change and growth Discuss the ways our own grief may impact our ability to help others make difficult decisions

3. On Being Human

4. ON Being the Student Taking lessons from our patients and families

5. On Being a Healer Healing requires the recognition of human face of each person and the communication that both healer and the healed share a bond that ties them to each other through their humanity and their mortality. -Rachael Naomi Remen MD

6. Acknowledge the grief

7. Emotional Manifestations of Grief Denial Withdrawal Anger Acting out Depression Blaming Guilt Distancing

8. Physical Manifestations of Grief • Sleeping • Eating • Joint Pain • Symptoms of ill person • Forgetfulness • Irritability • Stomach or chest pain • Weakness • Fatigue/over-active

9. Responding to our grief and that of others….

10. Better or bitter? My heart has broken... ...open

11. Understanding our Grief REactions Is it triggering our own losses? Is it incongruency between our perception of what we hoped for as a good death and what happened? Is it triggering fear about our future losses?

12. About Grief • There is no right way to grieve • There is no timetable for grieving • No one “gets over it” • The pain of grief is much longer and harder than you ever thought possible • Talking about loss divides the burden • We can’t take away another person’s grief

13. There is no way out of the desert except through it. -African proverb

14. There are no magic words

15. . But there IS magic in the power of your presence

16. The Healing Power of Connection   “ I recently read a story about a cow who gave birth to a stillborn calf. She was weak and in pain after the ordeal. And still, she managed to get up and walk a long distance across miles of fields to find her own mother for comfort. She was found in the distant field with her mother wrapped around her nuzzling her. Their two large bodies like one.” ~Rae Sikora

17. . By expressing our own grief, we may be providing the necessary permission for them to express theirs

18. We are doing well with our grief when we are grieving • Somehow we have it backwards • We think people are doing well when they aren’t crying • Grief is a process of walking through some painful periods toward learning to cope again • We do not walk this path without pain and tears • When we are in the most pain, we are making the most progress • When the pain is less, we are coasting and resting up for the next steps www.hopeforbereaved.com

19. People need to grieve. Grief is not an enemy to be avoided; It is a healing path to be walked. www.hopeforbereaved.com

20. The Work of Grief Changes our world Redefines our priorities Increases awareness of our own mortality and those around us Increases our sense of vulnerability Helps us live more consciously

21. Role of Hope and Healing avoid complicated grief through preparation

22. If I had only known…. There are no do-overs

23. Recognizing the Barriers to Good Communication • Fear • Guilt • Grief

24. When grief means not letting go What does “do everything possible” really mean?

25. 30% cancer patients die in the hospital

26. Who are we really palliating? Are we using technology as buffer to ameliorate our own feelings of helplessness? We did everything…….

27. I even raised with her the possibility that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes. Oncologist

28. When unresolved grief or ability to let go affects ourcare • Dr. S • Chris and Colton

29. My belief is that the use of heroic & experimental technology is often a moral outrage, showing callous disrespect for the sacredness of human life and pathetic inability to face the reality of human death • Peggy Stinson -The Long Dying of Baby Andrew

30. The number of respondents was 10,078 from 25 specialties through Medscape • Would you ever recommend or give life-sustaining therapy when you judged that it was futile? • Yes, 23.6% • No, 37.0% • It depends, 39.4%

31. Would you ever prescribe a treatment that's a placebo, simply because the patient wanted treatment? • Yes, 23.5% • No, 58.3% • It depends, 18.2% • Would you hide information from a patient about a terminal or preterminal diagnosis in an effort to bolster their spirit or attitude? • Yes, I soften it and give hope even if there's little chance, 14.6% • Yes, unless someone is going to die imminently, I don't tell them how bad it is, 1.7% • No, I tell it exactly as I see it, 59.8% • It depends, 23.8%

32. Just because someone is dying… No one failed

33. The role of a healer is to be present in the midst of profound helplessness.

34. Understand Your Own Barriers Fear Resistance Death history Discomfort with disagreements, anger, grieving Discomfort with helplessness Making assumptions about what the family knows/sees

35. Family Barriers Lack of information Misinformation Technology Unresolved issues Fear Ability to let go Jinxing - “If we talk about it, it will happen” Inability to hear happen”

36. Impact of Having the Discussion About End of Life Care People are not more depressed after having a discussion Less use of aggressive intervention and improved quality of life of those facing death Cancer patients live longer and more comfortably under hospice care Improved quality of life for patients is correlated to improved bereavement adjustment of caregivers after death. Results of NCI and NIMH study at the Dana Farber Cancer Institute Study

37. The Advocate’s Role • Investigate • Explore • Educate • Advocate • Support

38. Illness is a dynamic and transformative process

39. Are you giving up on me? • “I do not think we should continue with the cancer treatment. It is time to stop focusing just on the cancer and spend more of our effort focusing on the rest of you.” • Atul Gawande, NYT article, “Letting Go”

40. Giving up vs. Letting Go:Defining the Good Fight

41. Transforming Dying Acknowledging, embracing, preparing despite the pain

42. Life is not measured by the number of breaths you take,but by the number of moments that take your breath away.

43. A New Dialogue • What do I need to live my remaining life as well as possible? • What do I need to accomplish? • What is my source of strength? • How do I still have value? • Where do I find meaning in all this? • How can I help my loved one/family to make the best of difficult circumstances?

44. Obtaining Closure Facilitating a good death

45. While death is inevitable, knowing you are loved is not. When I saw Hannah’s radiant face in the center of that circle, I realized that healing can happen even without a cure. No matter when Hannah died, she would die knowing that her life mattered, that she was completely loved. I couldn’t imagine a more profound healing than that. Maria Housden, excerpt from Hannah’s Gift - Lessons From a Life Fully Lived

46. People may not remember what you said. People may not remember what you did. But they will always remember how you made them feel.

47. What you leave behind is not what is engraved in stone monuments, but what is woven into the hearts of others. -Pericles

48. Starfish Story