1. Stories Matter Narrative Ethics in Patient Care Martha Montello, Ph.D. Center for Bioethics Harvard Medical School

2. Mr. Gremen 76 yo male w nonsmall cell lung cancer, T4N2M0. Treatment options: –Chemotheraphy/ radiation –Surgery Underwent concurrent chemotherapy & radiation for 5 months. Surgery: right lower lobectomy. Pathology: extensively sampled specimen showed radiation changes but no evidence of cancer. Complete remission.

3. The story… Surgery complicated by post op pneumonia, pulmonary edema. Patient wound up intubated. The advance directive…. Eldest daughter, DPOA Palliative care consult, requested by family.

4. Oncologist wondered, “What should I do”? Oncologist wondered, “What should I do”? Accuse the daughters of being “a little too eager to “pull the plug.” Tell the palliative care team to “take a hike.” Explain that I don’t think this is what the patient intended by his advance directive. Override the daughters, and “go for life.” Argue for a 3-day trial on the ventilator & then revisit the question of extubation.

5. The rest of the story…. Meetings with the daughters, Working with the palliative care team. Patient was extubated and died quickly. And his doctor was frustrated, angry, and feeling guilty: “I can’t stop thinking about this. Did I do the right thing?”

6. Moral distress This case did not resolve.

7. “ … while ethical principles often function well in a post hoc explanation of the conclusions that are reached, they play little role in the actual deliberations that precede and lead to the conclusions, especially in cases that are difficult and at the margins of accepted practice.” Robert Truog, Meta Medical Ethics: The Philosophical Foundations of Bioethics. Boston Studies in the Philosophy of Science 1995.

8. What are we after ? Solve vs Resolve

9. Solve To find the correct answer to a problem. To settle a question conclusively. And to do so with precision.

10. Resolve Latin: Unfasten, loosen, release

11. Resolve To break up or disintegrate. To clear away or dispel (e.g. doubts, fears) Chemistry: To separate (a racemic mixture) into optically active components. Medicine: To cause (swelling, inflammation, etc) to disappear without suppuration. Music: To progress from a dissonance to a consonance.

12. Resolution For patients, families, and caregivers

13. Narrative Ethics A mode of engagement with moral issues in clinical cases.

14. Narrative approach to ethics Doesn’t provide a method of ethical justification that replaces or is superior to moral principles or rule-based ethics. Fleshes out principles, so that we can see moral dimensions as embedded in the flow of people’s lives and values. Often, then we can make decisions that fit better with people’s lives as they live them.

15. Mattering Map Entering worlds

16. Mattering map “ People occupy the mattering map…. The map is…a projection of its inhabitants’ perceptions. A person’s location on it is determined by what matters to him, matters overwhelmingly….” “One and the same person can appear differently when viewed from different positions, making interterritorial communication sometimes difficult.” The Mind-Body Problem, Rebecca Goldstein, 1983. p. 22

19. Narrative Elements in Clinical Ethics VoiceCharacterPlotContextTimeReader

20. For Mr. Gremen CharacterVoiceContextTimePlot

21. Peripeteia Aristotle’s word for the sudden intrusion of the unexpected that changes everything. Reversal of expectation.

22. Experience helping families make decisions and cope with new sets of reality… 5 years: Boston Children’s Hospital Ethics Committee. 8 years: University of Kansas Hospital, Pediatric Ethics Committee, Chair. 5 years: University of Kansas Hospital, Ethics Committee Chair. Ethics Committee Chair. Consult team leader. Consult team leader.

23. Experience with helping physicians and families make decisions about premature babies, Experience with helping families cope with a whole new set of realities for their families.

24. I thought I understood. I was wrong.

25. Not until my own grandchildren, twin boys, were born at 23 weeks, did I begin the long road to understanding the experience of many parents of very low birth weight babies… …from a very different perspective.

26. Will and Sam were born at 23 weeks to my daughter and her husband. Babies rushed to the NICU, intubated. Sam lived only 1 day.

27. A little history Will stayed in the NICU almost 6 months. Heart surgery, eye surgery, pseudomonas, and other serious infections. Many times we thought he was dying. Will is 10 years old now.

28. Two strong, highly educated parents, With the baby in NICU constantly, actively participating in decisions about his care. Months of grief, despair, fear, isolation, and suffering.

29. How do parents come through this terrible time? Although each family is different, what can we learn from their experience?

30. Something that helped: Personal website written by patients & families Password protected Created by patients & family Goal: communication between patients/families and friends/other family Sponsored by hospitals Free to users

31. 2 of the biggest and most popular in the U.S. CaringBridge (www.caringbridge.org) www.caringbridge.org Founded: 1997 in Minnesota CarePages (www.carepages.com) www.carepages.com Founded: 2000 in Michigan

32. Helpful for parents who have very premature babies in intensive care. Parents are: Are isolated because they stay in the hospital. Cannot receive support and comfort. Cannot give information easily to family and friends.

33. Website communication My daughter and son-in-law wrote on the website several times a day, Updates on the baby’s status, And their own thoughts & emotions. Friends and family members wrote back, often 50 messages or more every day, Sending support and love.

34. During the months, I got to know other parents of NICU babies, who were also writing online journals. I read their journals. Many similarities. Followed a pattern.

35. Pattern in the Journal entries Early Focus: medical details and connecting with family and friends for support. Move toward combining emotions and thoughts in words. Changed Focus: Integrating the experience into a new life. Changed Focus: Integrating the experience into a new life.

36. Many parents recognize that their lives are broken now. They write passages like this:

37. Repairing a broken life “We have been here in the hospital for a whole month. It has been the longest month of my life. The future for us and our baby is unclear. We know that we have a special little girl on our hands and our life has surely changed. We are all going to have to learn to adapt to our new life and try to figure out what normal is for us now.”

38. Reading these journal messages, we learn that parents are trying to write a story.

39. Every life is a story. The story of our life and how we tell it to ourselves is how me make sense of the world.

40. The life-threatening illness or death of a child ruptures the life story of the parents & family.

41. Families in the NICU A family’s life is coming undone. They were in the middle of one story of their lives, when the plot changed suddenly. They must change themselves in order to live in this altered story. What happens to the baby happens to the entire family.

42. Sudden transformative event: One pediatrician calls it Day 1: That’s the day that the dream of a healthy family disappears.

43. “Day 1” That day changes the entire family forever. It is often the death of the dream of a certain kind of family.

44. A ruptured story The experience of losing someone very dear to us, especially a child, can be so painful, so disorienting, so shattering that it can call up a counter-motion, a restorative process toward order and hope and meaning.

45. When old stories cannot absorb new losses, they need to undergo a kind of Narrative Repair.

46. Narrative repair A major mechanism of change and recovery. Essential for psychological & emotional survival. When the story is broken, we need to restore a lost cohesion, to bind it all together again.

47. R.J. Lifton: doctor, historian Death in Life: Survivors of Hiroshima Studied survivors of Hiroshima’s atomic bomb. Discovered they went through a “psychic rebuilding,” a way of binding life together again and returning to the world of the living. Challenge: to construct a bridge between the self and the world.

48. R.J. Lifton: 3 elements necessary for constructing the bridge …for healing Sense of CONNECTION Sense of COHESION Sense of MOVEMENT

49. CONNECTION Coming out of isolation One man wrote: “First, I had to learn how to grieve. I grieved too much alone. It took months before I was even able to confess that I was broken. Only after I stopped trying to hold my old self together was I able to begin reintegrating the pieces of my new life.”

50. CONNECTION He learned that he needed to speak his grief, to tell his story. Another man wrote, “I must tell you. You need to know. It’s part of who I am now. And unless you know what has happened to me, you cannot know me, and I am alone.”

51. CONNECTION The telling itself is part of the work of mourning. Give sorrow words. The grief that does not speak, whispers the o’erfraught heart and bids it break. Shakespeare, The Tragedy of Macbeth, IV, III

52. COHESION Binding it all together again Making sense of what has happened. Finding a meaning. We need to put the world back together again– but in a new way. It can never be the same.

53. COHESION Binding it all together again Memory: The story of the past can be a path to cohesion. Paula by Isabel Allende: When her daughter was dying, Allende found the way to re-shape the story of her daughter’s life: Memory. Remembering was Allende’s main task.

54. Paula by Isabel Allende “These pages are an irreversible voyage through a long tunnel. I cannot see an exit but I know there must be one.” She tells the story of being Paula’s mother. She tells the story to give shape to her own life, to bind it together again, so that she herself will not feel so lost as she lives on without Paula. Power of memory

55. COHESION Binding it all together Surgeon, professor, father. Son died. Car accident. Peripeteia. Father: Far away, long drive home to the hospital, to his grieving wife. Mother: Grateful for those 3 hours alone with the body of her son: “I began the hard work of keeping him with me, of remembering.”

56. MOVEMENT Living past an ending Integrate the loss with who we are (Speaking & Memory) so that life begins to Cohere, to bind together again in new ways. Allende absorbs Paula into herself through memory, and begins to move back into her life. Motion. Change. Moving back into the world.

57. Movement re-entering the world R.J. Lifton’s understanding of regaining an outward motion in our lives after a devastating loss. We are changed, but move out into the world.

58. Narrative Repair Connection, Coherence, Motion How do we move through these elements? What provides the forward motion?

59. Narrative Repair Viktor Frankl, Man’s Search for Meaning After surviving one of Hitler’s death camps but losing entire his family: “Suffering which finds meaning ceases somehow to be suffering.”

60. Narrative Repair Out of the disorder of a life story broken by illness, death, and loss, healing can sometimes happen. Life is never the same. The story is changed forever.

61. Narrative Repair Many people who suffer extreme loss in their lives move through a kind of Narrative Repair, helped by connecting with someone else, binding the broken past together with memory, and moving back out into the world.

62. Narrative Integrity