1. Spirituality and end of life care Rev Prof Elizabeth MacKinlay AM PhD, RN Centre for Ageing and Pastoral Studies School of Theology, Charles Sturt University www.centreforageing.org.au

2. The search for meaning. From birth to death: change is a constant feature of being alive, at some level we continue to ask: Why? What does this mean? The search for meaning lies at the centre of what it means to be human The search for meaning is essentially a spiritual search. Meaning is something that can only be found by the individual (Frankl, 1984). Although others can help and support, it is the individual experiencing the challenge of impending death who must come to their own sense of meaning.

3. Meaning in life and in dying Deena Metzger reflecting on her anticipated death wrote: “What I ask from my death, is that at the last minute I will be able to look back over my life and know, without any doubt, the entire story I have been living... Then I will know, despite pain, disappointment, and limitation, that this life of mine has been a good and meaningful work” Deena Metzger: Writing for Your Life, 1993

4. aWho am I? aWhy am I here? What is my purpose in life? a What do I hope for? aWhat would I want to have done/experienced before I die, to complete my life? Some questions to ponder - as we walk the journey with those who are dying

5. The process of dying Part of the approach to end-of-life issues is to see the context of dying and death. Cousins (1981) wrote : ‘Death is not the ultimate tragedy of life. The ultimate tragedy is depersonalisation, dying...separated from the spiritual nourishment that comes from being able to reach out to a loving hand, separated from a desire to experience the things that make life worth living, separated from hope’ (in MacKinlay 2012 Palliative Care, Ageing and Spirituality. London: Jessica Kingsley Publishers p. 16).

6. Fear of dying  100% of independent living older people expressed fears of future vulnerability. (MacKinlay 2001)  45% of participants in the residential group study expressed fears related to the process of dying and/or losing control of their situation. (MacKinlay 2006) The journey The journey into death is feared by many. Death itself is feared by few older people. The final career, the individual journey into death is unknown still today, as it has been from the beginning. Each of us has to make that journey, unless we meet with sudden death.

7. Issues of pain in palliative care Fear of dying: will I have to suffer unbearable pain? Physical pain Existential pain Jewish concepts of pain make an important distinction in the understanding of pain and suffering. (Kestenbaum 2001 p5) : ‘Suffering is a response to pain; it results from the emotional and spiritual meaning that the pain has in one’s life. Medicine treats pain; caregiving responds to suffering’

8. Spirituality: inner being spirituality - core meaning, deepest life meaning and relationship, for many people this is worked out in relationship with God and others, for others, there is no relationship with God: relationship with others becomes primary. What lies at the centre, the heart of our being is from where we respond to all of life. Anger, hate, love, forgiveness, hope comes from the heart.

9. S P I R I TU A L I T Y- Ultimate Meaning Mediated through Religion: Worship Prayer Reading of Scripture Meditation Relationship: Intimacy with others and/or God Creation / Environment: Nature, sea, mountains, gardens, work, human imagination The arts: Music, art, poetry, drama, dance Spirituality and Religion MacKinlay 2006 adapted

10. What is spiritual care? Spiritual care addresses needs of people in search for meaning Helps people make sense of their lives, especially in the journey toward death It includes emotional care Addresses issues such as fear, guilt, forgiveness, grief, finding meaning in the face of death, reconciliation and new beginnings It is principally delivered by pastoral carers and chaplains, but is also provided by nurses, doctors, social workers and others.

11. Spiritual care involves finding ways to say thanks, celebrating the good things of life, affirming important memories affirming hope Designing meaningful rituals and symbols The spiritual dimension also nourished through : religious practices of prayer, Scripture readings, liturgy, services of thanksgiving, sacramental absolution and pronouncement of forgiveness of sins

12. Is religion always helpful for a person who is dying? A person who is dying, or family member, should have access to pastoral care offered according to their own culture, and/or religious beliefs. If they change their mind and wish for religious support, which previously they have not ever wanted, or have rejected, their wishes must be respected. For people with no religious beliefs, to be badgered by well-meaning religious people is just as distressing as not being offered religious support would be for someone to whom religion is important. (MacKinlay 2012 Palliative Care, Ageing and Spirituality. London: Jessica Kingsley Publishers)

13. The final life career The journey toward death. What is most needed by those making this journey? A midwife to be on this journey with them

14. Supporting older people facing death & dying Talking about death and dying Is that possible? Listening Journeying with another Supporting family

15. What does it mean to ‘die well’? To feel the time is right – sense of life completion To have come to final life meanings To be comfortable, and pain free To be reconciled to others To have handed over the story to the next generation To have hope

16. Doing spiritual care in palliative care Often ‘doing’ is ‘being’ Spirituality in palliative care and dying is about accompanying someone on the last significant journey of their lives. It’s about intimacy, it’s about sharing It’s about listening, even when the person may not seem to be able to speak. The listening is done with all your senses, not just ears.

17. Conclusion To die is not only a biological process, but for each person, death is also a unique and a spiritual journey. Medicalisation of the dying process has largely removed death from the intimacy of family and friends; there is a need to re-claim the spiritual dimension so that people are not isolated in their dying. Humans are by nature meaning makers and core meaning is a spiritual concept. Finding meaning becomes more important in later life, and especially in the last career of life Walking this final journey in life with the one dying is a special position for those privileged to be a part of this journey.