Stories Interrupted: Weaving Creativity, the Sacred and Meaning at the End-of-Life

1. Stories Interrupted: Weaving Creativity, the Sacred and Meaning at the End-of-Life Brenda Kenyon, LCSW St.Vincent Hospice, Indianapolis, IN Tony Pinto, MDiv, CT Indianapolis, IN

2. Learning Objectives • Articulate three loss oriented outcomes • Identify four components of a holding environment • Articulate three constructs defining creativity • Define refuge as a function of the sacred • Identify four methods of interdisciplinary creative collaboration

3. Contemplative Exercise • Engage audience in using concentration through centering • Introduce breath & voice modulation techniques

4. Blueprint for Today 3 Clinical Frameworks to assess, intervene, and provide care to those whose stories have been interrupted. • First provide a panoramic view of two stories interrupted. • Then we set the stage for the Holding Environment. • Explore the frameworks of meaning, creativity, and the sacred.

5. The Box Experiential Exercise • Reduced capacity/capability • Diminished treatment options • Collateral losses associated with terminal diagnosis • Shift from external to internal • Approaching death

6. Your Blessing Box • Use today to capture ideas, thoughts, and Interventions that will bless your work in the future.

7. Two Case Studies • PTSD, adjustment counseling, interdisciplinary themes, twelve-step model and hospice graduation • Terminal awareness, family dynamics, interdisciplinary ritual, creativity, religious imagery and hospice graduation

8. Motorcycle Mamma • 81 year old Caucasian female • Enrolled in hospice 13 months • Diagnosed with Rectal Cancer 5 months prior • Radiation treatments caused extreme weakness • Highly independent until her diagnosis • Currently bedbound, unable to move legs • Prided herself in being able to ride a motorcycle until age 80

9. Motorcycle Mamma’s Threads • Loss of identity (loss of independence and increased dependence) • Loss of personal narrative (will not live to 92) • Disenfranchised grief around significant love relationship. • Dissolution of social network (square dancing & motorcycle clubs) • Matriarch and protector unable to assist her children with their restlessness • Trauma associated with terminal diagnosis/hospice placement

10. Catherine (of Sienna) • 89 year old Caucasian female • Enrolled in hospice for 9 months • Diagnosed with End-Stage Ovarian Cancer • Long term care resident since 2006 • In harmony with her own self narrative • Matriarch of her multigenerational family • Devoted Roman Catholic with a deep sense of mystic spirituality

11. Catherine of Sienna’s Threads • Used sense of humor to cope • “I ordered homemade chicken noodle soup and got canned tomatoes instead.” • Relied on her multigenerational family • Verbalized her sense of resolution • Support to family to address anticipatory grief issues and recognition of her terminal awareness

12. Story Interrupted (Patient) Other Weavers Holding Environment Thread-maker (Clinician) Weaving The Components of Weaving

13. Clinical Components of the Interrupted Narratives • Suffering • Suffering can be defined as an actual or perceived threat to the integrity or continued existence of the whole person. (Cassell, 1982) • PTSD • Our observation indicates that the persons’ interrupted stories tend to mimic the signs and symptoms of PTSD. • When we implement interventions that address PTSD patients can experience a significant benefit. (Boss, 2006)

14. Clinical Components of Motorcycle Momma’s Interrupted Story • Disruption of the Personal Narrative • Loss of identity • Loss of meaning • Loss of purpose • Interruption of the Family Narrative • Generational threat (end of tradition, end of the future line) • Leaderless clan • Emerging responsibilities (concrete and psychodynamic)

15. Clinical Components of Catherine’s Family Story Interrupted • Stability of the multigenerational family unit • Validation of her terminal awareness • Need to address impending loss with her grieving daughters • To die a happy and peaceful death as opposed to the traumatic memory of her aunt’s dramatic death • Recognition that she has lived a long and productive life of faith and family

16. Characteristics of Catherine of Sienna’s Story Interrupted • Urgent desire for supportive creativity and spiritual imagination (Fox, 1979) • Strong spiritual path transcendent of religious affiliation • Strong sense of creativity and “play”

17. Story Interrupted (Patient) Other Weavers Holding Environment Weaving Thread-maker (Clinician) The Components of Weaving

18. Holding Environment • Borrowed extrapolation from A. Modell’s (1976) ideas around the therapeutic relationship as he applied D. W. Winnicott’s theoretical constructs of “the Holding Environment” • Gives a basis for understanding boundaries and components to acknowledge, as well as, to leverage for positive patient/family outcomes in the journey

19. Holding Environment • Intention • Filter and Clear Distractions • Single Pointed Focus/Presence • Therapeutic Alliance • Developing trust • Becoming the safe object • Stabilization • Normalize reactions to absurd events • Name the interruption and its effects

20. Interventions To Create A Holding Environment • Scanning of the physical environment • Search of obstacles and chaos • Identify the sacred • Engage the immediate family and the patient in the creation of the holding environment • Facilitate the transformation of the holding environment • Cultivation of the psychodynamic “holding” • Trust (consistent, information sharing, mediate communication with team and family) • Honesty (remain objective, establish boundaries/limitations) • Reassurance of hope • Reframing of the experience (redirect to opportunity) • Reinforce strenghts and meaning

21. Story Interrupted (Patient) Other Weavers Holding Environment Weaving Thread-maker (Clinician) The Components of Weaving

22. Weaving 3 Clinical Frameworks • Meaning Making (R. Neimeyer, T. Attig) • Search for purpose/naming • Achieving Resolution/Maintaining Resolve • Coherence/Making Sense • Reframing • Creativity (R. May, S. Langer, D.W.Winnicott, A. Modell) • Congruent Forms • Holding Environment/Field of Play • Sacred/Symbolic Immortality (M. Fox, E. J. Cassel, J. Halifax) • Refuge practice • Power of Intention • As transcendence

23. Meaning-making The Hierarchy of Hope by Helen Wong

24. Meaning • Making sense of the experience is coping with emotional, physical, social, spiritual and intellectual consequences…..by transforming the CHAOS into a newly meaningful order. (Machin, 2009) • “Narrative methods can play a role in restoring or re-storying a sense of autobiographical coherence that has been disrupted by loss (Neimeyer, 2007) • Significant life losses, bring forth spiritual awareness; and yearning for meaning that transcends everyday explanation. (Martin & Doka, 2000)

25. Meaning-making • Meaning can refer to a spiritual sense of purpose in life, which centers around the capacity of an individual to feel the worth of his/her individual life (story). (Marcia Lattanzi-Licht, “Religion, Spirituality and Dying”, 2007) • Victor Frankl offers three avenues for discovering meaning: Creating a work/doing a deed; Experiencing truth, beauty and love; and the Attitude we assume towards unavoidable suffering. (Frankl, 1959)

26. Meaning Making Interdisciplinary Interventions • Grasping and naming emerging themes • Use of visualization and creative imagery to reconstruct meaning • Name the fragments, find congruent forms, reframe language

27. Creativity • Is a means of finding cohesion and integration in the midst of chaos • A force inextricably linked to the sacred • Creativity is a way of living, a spirituality just as compassion is (Fox, 1990) • It is the energy of hope

28. Creativity • Creativity is about overcoming fears by entering into them and spiraling out of them. It takes courage to create. (Fox, 1979) • Creativity is a supportive field to begin the necessary work of transformation, re-integration and meaning finding. It is also a significant component of the holding environment. (Kenny, 1989)

29. Creativity • Congruent Forms (Langer, 1972) • Humans must have “congruent forms of feeling” to be completely subjectively understood. • When the helper reflects to the patient, images and themes that find resonance, then the patient is able to perceive the congruent form of feeling. As a result of finding the congruent form, the patient experiences the feeling of being profoundly understood.

30. Creativity • This yearning for form is a way of trying to find and constitute meaning in life. The creative process is the struggle against disintegration, the struggle to bring into existence new kinds of being that give meaning and integration. (May, 1975)

31. Creativity • The helper, meets the patient in this space. The helper enters through intention, active listening (presence) and evidencing the congruent form (naming). The patient enters through perceiving the congruent form and embracing the emerging force of creativity.

32. Creativity • “The point is that when people are experientially moved by feelings evoked through the creative process, they are in a place where change is less frightening and relational revisions become more possible.” (Boss, 2006)

33. Creative Interventions • Rituals (Angel Cards, Blessing Box) • Honoring /Celebration of Life Ceremonies • Art therapy techniques (“I Am A Tree”, These Hands, family art carts, pillow cases, “Land of Grief”) • Music interventions (CD Compilation, music and art sessions, comfort music) • Legacy projects (“words of wisdom”) • Creative writing projects (poetry-writing, memory pages, favorite scripture pages)

34. Sacred • The Sacred is Present in the Story Interrupted • The Sacred emerges in the Story Renewed • The Sacred is weaved through underscoring symbolic immortality in the emerging post traumatic self

35. Sacred • One is frozen in the moment of traumatization. The disruption of memory in trauma is a corollary to the disruption of self. (Kauffman, 2007) • We use the Sacred as means of reintegrating self as it is weaved into the emerging self narrative.

36. Sacred • Life is threatened when death is not transcended. (Lifton,1979) • Humanity needs reassurance about the eternal survival of the self. (Rank, 1958) • The approach to the interrupted narrative must include an element of belief in the sacredness of the story.

37. Symbolic Immortality as Sacred • Biological Immortality: the sense that one continues to live through one’s descendants • Theological Immortality: a reunion with the Divine in the afterlife • Works Immortality: the feeling of having created an enduring contribution • Natural Immortality: the satisfaction of one’s continuation in the cycle of life • Transcendent Immortality: the psychic depth that sees the cessation of time, space, life and death and only perceives a continuous present (Lifton, 1979)

38. Sacred • One of the congruent forms we lift is reflected by T.S. Elliot when he says: “What we call the beginning is often the end, and to make an end, is to make a beginning; the end is where we start from” (Elliot, 1936)

39. Sacred • Young and Erickson see trauma as disrupting the sense of continuity, leaving one alienated and isolated. The trauma disturbs experience so severely that the pre- and post- traumatic self are discontinuous. (Young & Erickson, 1989) • The introduction of the Sacred into the Holding Environment becomes a congruent form symbolizing continuity.

40. Refuge & Ritual • Sacred is found as we seek and discover refuge. Refuge is also a practice, a mental exercise that requires creative imagery and freedom to feel. • Rituals and ceremonies evoke a cognitive means of making sense of our traumatic losses. (Richards, 2001) • Ritual provides a way to release the chaos of the story interrupted. (Golden, 1996)

41. Spiritual Practice • A spiritual practice can give us a refuge, a shelter in which to develop insight as to what is happening outside us and within our minds and hearts. (Halifax, 2008) • It can cultivate wholesome mental qualities such as compassion, joy, non-attachments--qualities that give us resilience to face and possibly transform suffering. (Halifax, 2006)

42. Sacred • This meeting in the holding environment “can be looked upon as sacred to the individual, in that it is here that the individual experiences creative living.” (D.W. Winnicott, 1971)

43. Sacred Interventions • Commendation/Sending Off Ritual • Contemplative Prayer • Mandala making • Creation and claiming of symbolic spaces • Music • Rosaries and mantras

44. Story Interrupted (Patient) Other Weavers Holding Environment Weaving Thread-maker (Clinician) The Components of Weaving

45. Other Weavers • Family • Significant Others • Facility Staff • Community • Hospice Team

46. The Story Ends Encourage to widen your creative horizons Embrace the risk taker in you Engage in creative paths that thrust you to a new level of experience Cultivate presence in the holding environment Open your eyes to congruent forms Weave