Caring for the Spirit in Palliative Care

1. Caring for the Spirit in Palliative Care To start, bring to mind one person you’ve cared for at the end of their lives…How do you see caring for their spirits to be? What does it involve? What might they need? From whom? Is this part of your role? As we go through this evening, bring them to mind… Meg Hegarty ~ November 2012

2. Experiences of dying • When someone comes into palliative care… • Facing illness, losses – of physical & mental function, roles, control of much …., • fears…primal fears of separation, the unknown… • AWE – dying is awesome!! – often gently awesome – we can forget this in our familiarity with dying • Can challenge our world view, beliefs about the way things should be (I’ve lived a good life) • Some people haven’t thought much or at all about illness or dying … • Even for those who have and have a strong spiritual life,… expectations…Gethsemane… • …dying is hard. • Yet it can also be a time of growth, insight, deeper understanding, freedom, joy. • For most people it contains many of all of these aspects. • We all live and die in ways that are individual, yet share commonalities… • Dad’s dying….struggle with cancer, then dementia, the LOSSES … • but resource, very real and intimate relationship with God – struggled with God… • Ready to die – paradox of looking forward to even closer unity with the One who had loved and accepted and nurtured him all of his life, but the grief of leaving this beautiful world and us… tears and anticipation, joy • luminous – radiated, oozed love…always had, but at end of his life when he couldn’t do anything else, this love that radiated from him was even more obvious. Died congruously, family with him praying, Fran sang…a traditional evening hymn, an old Latin prayer, committing oneself to God for the night…she sang the last note and he stopped breathing. • Yet for some people, dying congruously with their lives means continuing to struggle, “rage against the dying of the light” (Dylan Thomas) for all sorts of reasons - ? not known deep, accepting love…unable to trust letting go • However our experience of illness, ageing and dying is, care of our spirit during this time is important.

3. Do we recognise what’s happening for people? “the terms "existential pain" and "spiritual pain" are not heard at my workplace (nursing home) although we at times consider that a resident may have pain, anxiety and agitation relating to something other than physical pain.” (Student PALL8435, May 2012) Nor, perhaps, “existential or spiritual peace or joy or celebration”!

4. The Summer Day …I don't know exactly what a prayer is.I do know how to pay attention, how to fall downinto the grass, how to kneel in the grass,how to be idle and blessed, how to stroll through the fields,which is what I have been doing all day.Tell me, what else should I have done?Doesn't everything die at last, and too soon?Tell me, what is it you plan to doWith your one wild and precious life? Mary Oliver.

5. What is spirit? • Essence • Energy / life force • Spark of the Divine / God (known by many different names) • Ground of Being, Deep Mystery • Higher Self / The Self • The Human Spirit • “One closer to me than I am to myself”

6. “For me, spirit is the impulse towards life, the Eros in a person leaping forward, where meanings are made, where there is a sense of this gathering of perceptions, that our death is not the most important thing, nor our life…. and I feel a sense of collective soul, too, connected to the whole of life…” Michael Leunig, cartoonist

7. Spirituality Spirituality is the aspect of humanity that refers to the way individuals seek and express meaningand purpose and the way they experience their connectednessto the moment, to self, to others, to nature, and to the significant or sacred. - Consensus Conference, USA, 2009 http://www.ncbi.nlm.nih.gov/pubmed/19807235

8. The Big Questions – conscious or unconscious Spirituality is concerned with the deepest levels of human experiencing, the places of ultimacy, value, and deepest meaning for our lives. (Mercer,2006, p503)

9. Spirituality is about • Connection, relationship • Meaning • Faith and belief • Living fully – creativity, humour, awareness… • Values (including, love, compassion, hope congruence, integrity, dignity) • Transcendence • Becoming

10. Spirituality seems to be about • Connection • Meaning • Faith and belief • Living fully – creativity, humour, awareness… • Values (including hope, love/compassion, congruence, integrity, dignity) • Transcendence • Becoming • Trust / Letting go – yet active involvement When Death Comes Mary Oliver

11. Expressions of spirituality Depend on personality, culture (social, religious & family), the times in which we live, life experiences and developmental capacities.

13. SPIRITUAL RESOURCES: What nourishes life in me? What feeds my spirit? Where do I experience freedom, strength and deep joy within myself? Who or what helps me anchor? *

14. Common spiritual paths • Relationships–self, transcendent (God, Life, wisdom…), family, friends, community. • Nature– garden, sea, the bush, wilderness • Aesthetic pursuits– art, poetry, music etc • Metaphysical pursuits – silence, meditation, prayer, ritual, philosophy

15. There’s no one right way!

16. So what is Care of the Spirit? Care of the whole person A strengths model of care

17. We meet the person at soul level … we relieve them of the burden of being seen primarily as the sick one, the frail one… and we honour the significant journey they are on.

18. Caring for the spirit To create a safe space To be with & to bear witness To engage the depth To support them in accessing resources (past + new; inner + outer)

19. Create & Hold a Space A space for what?

20. Create & Hold a Space For presence & listening: • Where it is possible to “experience the experience” (Peter Barr); to be oneself • Where the mystery and paradox of life can unfold – and perhaps transcendence occurs “A safe place to suffer” (Stedeford A, 1987; p73-4)

21. 3 Kinds of Listening • Diagnostic listening - listening for • Empathic listening – listening to • Contemplative listening – listening with (Byrne M, 2011)

22. Contemplative listening Shift from “fixing” to presence/staying with “the vulnerability of listening and having no answers” (Lunn, 1990) “living the questions…” (Rainer Marie Rilke, 1934)

23. “When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” ― Henri J.M. Nouwen, The Road to Daybreak: A Spiritual Journey

25. Language of the spirit “the language of spirituality is an attempt to give expression to something that defies or resists language…an awareness of things that are intangible, cannot be spoken of with clarity, and yet are experienced as real”. Mercer, 2006, p504

26. Language of the spirit Includes head, heart, gut Often symbolic – image, metaphor, story – meaning Poetry Music, Art Embodied – dance, touch, laughter, tears... Ritual- celebration Prayer Silence – beyond words...Tagore

27. Symbolic language • Story of Mick (Barbato)

28. Silence Some experiences are too deep for words

29. Ritual

30. Dementia The unique essence of “me” is at my core, and this is what will remain with me at the end. I will be perhaps more truly “me” than I have ever been.” (Christine Boden, 1997, pp49-50) “…a kind of passage from the mind into the heart.” (FrenaGray Davidson, 1995, p7)

31. Dementia • Importance of the moment of experience (Boden, 1998) • Hope is not destroyed by dementia (McFadden, 2003) • PWD experiences transcendence – lives full, valuable, worth living. • Person centred care

32. Who cares for the spirit?

33. What’s needed for this work?For all of us: • Deep reverence for the wisdom of the other’s spirit • A capacity to be present with equanimity in the suffering and anguish of the person’s journey • Openness to possibilities (hope) • To let go of the need to know – to live in the not-knowing with serenity, trust “all will be well” • Recognition of the language of the spirit • Doing our own spiritual / inner work; having a regular spiritual practice. • Self care.

34. What’s needed for this work?For “specialists” Training & ongoing supervision Recognition of different spiritualities Understanding of dynamics of suffering, hope, faith (“ultimate concerns”), transcendence etc Recognition of role of music, art, story etc. in connecting with, experiencing and expressing spirituality Supporting, mentoring team

35. Connecting with my own spiritual resources: Caring for and strengthening my own spirit

36. Having a spiritual practice • Regular daily practice • Integrate into professional life (e.g. basis of call, stress management, honoring patient) • Use of rituals • Spiritual community • Integrating forgiveness and gratitude rituals into one’s practice Christina Puchalski

37. Spiritual self care • Recognise, enjoy & celebrate beauty and the extraordinary in the ordinary • Become at home in the rhythms of life • Practice gratitude, forgiveness, compassion • Learn to delight in the paradoxes of life • Hold things lightly…learn to let go • Find the place deep within you where God/life/ and where your energy, love, creativity, goodness spring from – and spend some time there regularly.

38. Tell me, what is it you plan to doWith your one wild and precious life? Mary Oliver.

39. AnamCara “We live in the shelter of each other.” (Celtic wisdom)

40. Recap • Everyone has a spirit, a spirituality and spiritual needs. • Holistic care entails caring for all of a person. • We experience and express spirituality differently, but share needs to find meaning and for connection. • We can care for people’s spirits at different levels. • All of us can respect dignity, listen and care, provide a safe space and refer on when someone with more specialised training is needed. • We need to be aware of our own spiritual resources and care for our own spirits too.

41. How am I going to continue to develop my capacities for caring for the spirit – knowledge, skills, attributes, attitudes?

42. “Strong back, soft front”

43. References & Resources Aldridge D 2000, Spirituality, Healing and Medicine: return to the silence, London: Jessica Kingsley Publishers. Halifax J 2009 Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death.Shambhala: Boston. Hegarty M 2007 Care of the spirit that transcends religious, ideological and philosophical boundaries. Indian Journal of Palliative Care, 12(2):42-47. Killick J 2006 Helping the flame to stay bright: Celebrating the spiritual in dementia. Journal of Religion, Spirituality and Aging, Vol 18, Issue 2/3. PuchalskiC 2006 A Time for Listening and Caring, Oxford: Oxford University Press.

44. Resources • www.gratefulness.org • Puchalski, Cobb & Rumbold 2012 The Oxford Textbook of Spirituality and Healthcare. OUP. • Rachel Naomi Remen • Henri Nouwen • Elizabeth MacKinlay (sp & ageing)

45. meg.hegarty@flinders.edu.au

46. Screening & assessment Discernment, not assessment? Screening: • “Are you at peace?” (Steinhauser et al) • Support needs (Hegarty, Currow, Olver, Abernethy, 2011) Spiritual history Assessing strengths and resources, as well as needs. A story, told over time. Validated tools – e.g. FICA

47. Spiritual Reminiscence • Looking back over your life, what do you remember with joy? With sadness? • Tell me about the emotional and spiritual supports you have. Are these from family and friends? • What things do you worry about? • What gives meaning to your life? • What are the good things in your life? • Do you have any fears? • What are the hardest things in your life just now? • Do you have an image of God? What is this like? • As you get to the end of your life, what do you look forward to? (Trevitt & MacKinlay, 2006)

48. Trevitt C & MacKinlay E 2006 “I am just an ordinary person…”: Spiritual reminiscence in older people with memory loss. Journal of Religion, Spirituality and Aging, Vol 18, Issue 2/3.