The crisis of illness. What are the questions of spiritual pain? How can we respond?

1. Illness.A time for reflection and meaning making. Listening to the spiritual questions.Jenny Cuypers, chaplain

2. Rose:Who am I?What would it be like to have to ask this question?How, as carers, do we respond?At times of illness, we are at our most vulnerable. In that space of brokenness, deep questions are asked, re reflect on life and we are trying to make sense of it and get some answers. There are no definite answers.There s a need to be accompanied, to be listened to.

3. What disturbed me deeply and has continued to disturb me, is the almost complete lack of spiritual help for the dying that exists in modern culture.SogyalRinpoche, The Tibetan Book of Living and Dying.

4. The crisis of illness.What are the questions of spiritual pain?How can we respond?

5. WHO definition of palliative carePalliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.The spiritual pillar tends to be the one that is most hidden, most intimate, least concrete, least measurable.

6. Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature and to the significant or sacred.Christina Pulchiski

7. The European Association for Palliative Care:Spirituality is the dynamic dimension of human life that relates to the way a person (individual and community) experience, expresses and/or seek meaning, purpose and transcendence and the way they connect to the moment, to self, to others, to nature and to the significant and/or the sacred.

8. Existential questionsregarding identity, meaning, suffering and death, guilt, reconciliation, hope and despairConsiderations and attitude based on valuesReligious concerns and beliefsconcerns re beliefs, faith, God, the transcendent – including the concept of Horizontal transcendence as understood in the atheist literature

9. Spirituality ? Religion?Spirituality is more individualistic and self-determined, whereas religion typically involves connections to a community with shared beliefs and rituals. In discussing these matters with patients it is best to use the term spiritual because of its broad and inclusive nature which allows the patient to interpret the meaning for himself or herself…H. G. Koenig

10. People often say: I am not religious but I am spiritualI am Catholic but I don’t go to mass anymoreParish catholics: those who adhere to beliefs and are practicingSpiritual catholics: those who adhere to all or some beliefs but have little interest in the institutionCultural catholics: those who may go to funerals and weddings but have little or no faith grounding

11. There is a vagueness and lack of clarity around the term spirituality and that can actually be a strength.It lends to an openness to the use in the care setting. It allows for an attitude of searching, for development of understanding and growth.

12. Illness: a time of crisisOur culture is one of being in control, being busy, of being productive, of perfection…The patient is transported into a world of inactivity, dependence, boredom, lack of control..

13. A shift from the forgetfullness of beingto a state of mindfulness of being

14. Trying to make sense of a critical event:Why should this have happened? Does it have any purpose for them or the family? What resources can they draw upon for support and guidance?an inner dialogue begins

15. If spiritual care is to be of benefit and support, it must engage at some point with that ongoing inner dialogue within a relationship of trust.

16. Basic spiritual needs:the need to give and receive lovethe need to be understoodthe need to be valued as a human beingthe need for forgiveness, hope and trustthe need to explore beliefs and valuesthe need to express feelings honestlythe need to find meaning and purpose in life.

17. Spiritual questions are often asked, expressed, hinted at in small every day things….How do we notice them?

18. Listening for spiritual needsat times asking direct and open questionsat times listening for the answers in the patient’s story

19. What do you believe in that gives meaning to your life?How important is your faith / religion/ spirituality to you?Do you find comfort from your beliefs and practices at the moment? What is particularly helpful to you?

20. Spiritual needs*met through physical care*through reflectionThe secret in the care of a person is in the caring…Francis Peabody

21. All health carers have the potential to contribute to the spiritual care of the sick and dying and yet there is a definite role for specific spiritual care.

22. Questions asked by chronically ill and dying patients

23. Why is this happening to me now?When someone gets ill, their view on life gets dismantled, their relationships changes, they experience losing control in many areas of their life, their experience of God can change… And that loss can lead to seeing no sense, no meaning. The pain is often expressed n questions such as: Why? Why me? What have I done to deserve this?

24. The need to explore beliefs and values

25. Will my family survive my loss?

26. Will I be missed?Will I be remembered?

27. Will I have time to finish my life’s work?

28. When we have to let go of life, we have to hold on to that life one more time. In the end phase of life, a lot of energy goes to the past and to re-live that past. We try to find the story in our life, to find the wholesome-eness of life.

29. Reflecting on the end of lifeIs there a desire to live? To die?Arranging to meet family?Asking for sacraments / rituals?Attachment is paramount in our culture.How to let go?

30. Is there a God?If so, will He be there for me?There can be a deep feeling of abandonment, a deep spiritual pain. We can not change that feeling by an answer, only by listening and acknowledging it and by being compassionate and loving…

31. While such existential concerns are normal and to be expected in the short term, some patients get stuck in these spiritual struggles and without help are unable to resolve them on their own. The result is that they can not rely on spiritual beliefs that might otherwise give them comfort and hope. Koenig

32. It could be because of past experiences of teachings. It can be very helpful for them to have someone listen to their pain and support them in a non judgemental way. That in itself is transformative. It helps to move away from what has been taught and had to be accepted, and to grow in their own faith , to help them find their ground and their inner self again.

33. What will happen to me after I die? It is not unusual for people, even those who have been religious all their life, to question life after that. That what was learned, now has to be integrated.

34. Beliefs and hopes regarding what happens after death.Does she believe in the afterlife? The resurrection?Or is it over? Full stop? Or is one’s life taken up in the universe?Does she hope to continue living in the memory of others? Will she see them again?How does she experience the presence/absence of those who went before her?

35. What about her relationship with God? What about faith? Is prayer important? orAre there non-religious rituals available to the patient? Maybe of their own making?

36. Death is the ultimate unknown. In the last century people were brought up with vivid descriptions of the after lfie. Now there is often silence. Taboo.How doe we recognise the fear of the patient?In as far as we can bring some peace, safety and openness to those feelings and can recognise the thougths and feelings of the terminally ill. We need to become aware of our own feelings and thoughts, of our own mortality.

37. ForgivenessI am sorry, I forgive you, I love you, I thank you

38. A dynamic processWithin the inner world, spiritual and religious, there is always a dynamic process going on.There can be growth through suffering.

39. Nine months seems like a long timeI watch my body changeTired I sit staring out at lifeBooks and music transport me beyond my bodyNine months finally pass I give birth to my childAll the discomfort and pain is now justifiedChemotherapy and radiationTwelve months seems like a long timeI watch my body changeTired I sit staring out at lifeBooks and music transport me beyond my bodyTwelve months finally passI give birth to myselfAll the discomfort and pain is now justified(Anonymous, from website of Bernie Siegel)

40. Reflective domain:shared by the nursing professionand chaplaincy

41. What are the spiritual identifiers?Is the patient at peace with herself?Is she hopeful, or despairing?What nourishes her personal sense of value?Does her beliefs help her to cope with her anxiety about death and with her pain?What are the unresolved issues and fears?

42. Spiritual care: I have sought to define spiritual care, not as a particular activity or intervention, but as a quality of a relationship that is a professional relationship, but one focused on the person rather than the illness,and that allows for a degree of reciprocity in order to be a real rather than a wholly one-sided relationship.(Colin Jay)

43. Spiritual care: a process of relationship. Acceptance Support Care

44. How to accompany someone? Listening Presence Hope Compassion

45. ListeningBeing aware and showing respect for the unique spirituality of the patient

46. No one wishes to be “rescued” with someone else’s beliefs. Remember you task is not to convert anyone to anything, but to help the person in front of you get in touch with his or her own strength, confidence, faith and spirituality.SogyalRinpoche

47. Presencean accompanying presencea comforting presencea hopeful presence

48. An accompanying presenceBeing there Being with

49. Being with someone has an inherently spiritual quality. Being in the emotional space of a person who might be without hope, to enter with them in their darkness. Being there with them, to listen and speak from that connection of a shared experience and easing their sense of isolation.Being there without agenda.

50. The art of being present and still.Just as we think, there is nothing going to be said, the floodgates open.Mere being present allows the patient to be himself and to speak, think, feel from that deeper inner self. Everything is within, it is all there but it has to be allowed to surface. If we keep talking, if we keep filling space, it won’t happen.