Pastoral Care in palliative care

1. Pastoral Care in palliative care Russell Armstrong Barwon Health Palliative Care Program 6 June 2013

2. Expected length of life at birth, Australia, 1901-10 to 2004-06 Sources: ABS Cat No. 3302.0; ABS Cat. No. 3105.0.65.001

4. From an Australian ‘prophet’…

5. In 2010 Australians had the second highest life expectancy in the world, behind Japan. [Although not for our Aboriginal brothers and sisters]

6. Why Spiritual Care? “Death is not the conclusion to a series of medical events but a profound human experience. As someone approaches death their emotional and spiritual needs are as great as if not greater than those of their bodies.” Michael Barbato, quoted in Legge 2011, ‘The death whisperers’, Weekend Australian Magazine, 21 May 2011

7. Why Spiritual Care? “Illness, aging, and the prospect of dying can trigger profound questions about who people are, what their life has meant, and what will become of them during the course of their illness and perhaps after they die. Who am I? How will I be remembered? These questions have the same importance in patients’ lives as do questions about treatment. Illness and dying are essentially spiritual processes in that they often provoke deep questions of meaning, purpose, and hope.” Puchalski & Ferrell, 2010:3

8. Why Spiritual Care? “I’ve been feeling increasingly disconnected, and now I’m scrambling to get back some sense of wholeness. The spiritual dimension of life has become more important to me the longer the journey goes, as it wears the soul down.” ‘Donna’ – long term cancer patient who has been on and off the palliative care program over several years

9. From the patient… “To the typical physician, my illness is a routine incident in his rounds, while for me it's the crisis of my life. I would feel better if I had a doctor who at least perceived this incongruity.” Anatole Broyard was a former editor of The New York Times Book Review, and died from prostate cancer on 11 Oct 1990, aged 70.

10. From the patient… “I see no reason or need for my doctor to love me - nor would I expect him to suffer with me… I just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh.” Anatole Broyard was a former editor of The New York Times Book Review, and died from prostate cancer on 11 Oct 1990, aged 70.

11. From the patient… “Just as he orders blood tests and bone scans of my body, I'd like my doctor to scan me, to grope for my spirit as well as my prostate. Without some such recognition, I am nothing but my illness.” Broyard, A 1992, Intoxicated by My Illness: And Other Writings on Life and Mortality (New York: Clarkson Potter, 1992), pp. 43-45.

12. WHO definition of Palliative Care Palliative 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. (emphasis added)

13. Standards for ProvidingQuality Palliative Care for all Australians Standards make frequent reference to • holistic needs of patients, caregiver/s, families and communities • holistic assessment • holistic care • the provision of emotional, religious or spiritual support • the provision of spiritual and/or pastoral care workers • resources to inform staff about customs, rituals and icons important for individual religious expression.

14. What do we mean by spirituality?

15. What do we mean by spirituality? Spirituality is a deeply intuitive, but not always consciously expressed, sense of connectedness to the world in which we live. Eckersley 2007:S54

16. What do we mean by spirituality? The secularisation of society that has undermined western religious institutions has not led to a corresponding disappearance of belief. Instead, religion has become deregulated. (Rumbold 2003a:1)

17. Religion and spirituality From Bridge & Lee 2009.

18. Religion and spirituality

19. Religion and spirituality

20. Religion and spirituality

21. Religion and spirituality

22. Spirituality as relationship or communion/connection (Communion with significant or sacred - Puchalski et al) Adapted from Chao et al 2002, reported in Chochinov 2006:88

23. Concerns re language 1 “Research shows that, while many patients do not distinguish between being religious or spiritual, others feel alienated from institutional religion and see themselves more as spiritual than as religious. This may be particularly true for patients in Australia. The term spirituality is vague enough to allow patients themselves to define the playing field.” Koenig 2007:S45

24. Spirituality as a web of relationships In a holistic understanding, like that promoted by palliative care, spirituality is manifested in a web of relationships that hold people together by connecting them with places, things, aspects of themselves, people, communities, memories, and beliefs that give meaning to their lives and nurture their spirits (Lartey 1997). So people are sustained by their spirituality irrespective of whether they are able to recognise and articulate particular aspects of it. Some people may be reflective about their spirituality, others may not, but all people are spiritual beings. For each person the basic pattern of the web is similar, connecting them with many levels of the systems in which they participate. However, the detailed structure of each web is unique for every person. Rumbold 2003a:2

25. Spirituality as a web of relationships “Religious belief may or may not be part of that web. “For each of us, these relationships form a unique pattern, and each of us needs that pattern to be largely intact in order to feel secure, or whole.” “Often we only become aware of strands in the web when they are stretched or broken, as happens with a life-changing event like a diagnosis of serious illness in ourselves or in someone we love.” Rumbold 2003b:S12

26. Finally, one helpful definition of spirituality 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 and the sacred. Puchalski, C et. al. 2009:887

28. Secular sources of meaning and connection

29. Nurturing our own spirituality “For healthcare professionals to have authenticity and integrity at the bedside, they must ask themselves the same questions patients and families are asking and grappling with.” Puchalski & Ferrell 2010, p. 170

31. Signposts – exploring everyday spirituality honouring the sacred allowing stillness

32. Signposts – exploring everyday spirituality embracing change searching for meaning

33. Signposts – exploring everyday spirituality walking through shadow wondering at the mystery

34. Signposts – exploring everyday spirituality struggling finding connection

35. Signposts – exploring everyday spirituality remembering blessings forgiving

36. Signposts – exploring everyday spirituality lasting the distance standing in uncertainty

38. Spiritual or existential needs • Moadel and colleagues identified “unmet spiritual or existential needs” in 248 ethnically diverse, urban cancer outpatients in the USA. • Patients wanted help in • overcoming fears (51%), • finding hope (42%), • finding meaning in life (40%), • finding spiritual resources (39%), • having someone to talk with about the meaning of life and death (25%). (Chochinov & Cann 2005:S-104)

39. Spiritual or existential needs Subtle cues and clues: • References to not wanting to be a burden • “Why?” questions • “What’s the point?” references • References to loss of dignity • References to it “not being fair” • Desire to die statements Sometimes/often no clue at all if we don’t offer or ask (thus the importance of spiritual screening/discernment)

40. Spiritual or existential needs Subtle cues and clues: Patient had been talking to chaplain for some time and in a very positive way about how well she was coping, before quietly adding… P: “Well, most of the time, anyway”. C: [gently] “Sometimes you’re not quite so sure?” P: [tears welled up] C: “If that’s uncomfortable when can leave it there” P: “No, I need to work it through”

41. Spiritual or existential needs Sometimes we might make a reasonable guess: • Know disruption to their relationship web • recent bereavement • removed from local community for treatment • having to stop work • being unable to continue with important activities • Transition from curative to palliative treatment • urgent need to redefine the nature of their hope • Approaching end of life • Unresolved business, wanting to repair/heal broken strands in web

42. What do we mean by spiritual care? “Spiritual care is fundamentally the ability to be present for another, entering into the sacred spaces where we respond with infinite respect to the mystery of another’s suffering.” Linda M. McWilliam ‘Spiritual Interventions in Bereavement Support: Theory Strategies and a Case Study’ Spiritual Care Australia Conference 2010

43. What do we mean by spiritual care? “Each person defines their own spiritual needs [in their own unique way], so spiritual care may not mean providing answers to a person’s spiritual questions but rather listening to them and taking them seriously, that is, accompanying and supporting an individual in their exploration of their particular understanding of spirituality and in their development of their own sense of spiritual well-being.” Vivat, 2008: 860

44. What do we mean by spiritual care? “We find that spiritual care is about connectedness, but also about incompleteness. It is about knowledge, but equally about what we do not know. It is about coherence and integrity, but also about vulnerability. It is about belief, but also about doubt.” Rumbold quoted in Hudson 2008b:41

45. What do we mean by spiritual care? After a slow account from a patient about his loneliness, pain and despair, references to not seeing the point in going on, no fear in dying C: Sounds like dying has more appeal for you than living just now. P: [reaching out and taking my hand with surprising strength] Thank-you my friend, thank-you. Patient then released my hand, rolled onto his back and closed his eyes. It was time for me to leave.

46. What do we mean by spiritual care? “The person who can be silent with us in a moment of despair or confusion, who can be silent with us in our hour of grief and bereavement, who can tolerate not knowing, not curing, not healing, and face with us the reality of our powerlessness, this is the one who cares.” Palliative Care for Infants, Children and Adolescents, Chap 6. Quoted by Liese Groot-Alberts, PCIC, Perth, September 2009.

47. Spirituality and mystery [Suffering] demands that we reject simplistic answers, both "religious" and "scientific," and learn to embrace mystery, something our culture resists. Mystery surrounds every deep experience of the human heart: the deeper we go into the heart's darkness or its light, the closer we get to the ultimate mystery of God. But our culture wants to turn mysteries into puzzles to be explained or problems to be solved, because maintaining the illusion that we can "straighten things out" makes us feel powerful. Yet mysteries never yield to solutions or fixes - and when we pretend that they do, life becomes not only more banal but also more hopeless, because the fixes never work. Palmer 2000: 60

48. Spirituality, mystery and meaning We search and we search and yet find no meaning. The search for a meaning leads to despair. And when we are broken the heart finds its moment To fly and to feel and to work as it will Through the darkness and mystery and wild contradiction. For this is its freedom, its need and its calling; This is its magic, its strength and its knowing. To heal and make meaning while we walk or lie dreaming; To give birth to love within our surrender; To mother our faith, our spirit and yearning; While we stumble in darkness the heart makes our meaning And offers it into our life and creation That we may give meaning to life and creation For we only give meaning we do not find meaning The thing we can’t find is the thing we shall give. To make love complete and to honour creation. Michael Leunig, The Prayer Tree.

49. What do we mean by spiritual care? “Finally, spiritual care is implicit in good care - that is, care that attends to the person. It begins in shared human values rather than external belief structures. Humility, and a willingness to treat the other's experience as a social reality to be engaged, not a phenomenon to be examined and then approved or dismissed on ‘scientific’ grounds, are required of the caregiver. A necessary condition for spiritual care is preparedness to engage with the other as a fellow human being. An expert stance at this point can only block the possibility of spiritual encounter. This is not to say that there cannot be expertise in offering spiritual care, but such expertise involves the ability to join the other in a process of discovery, not having expert knowledge that objectifies the other.” (Rumbold 2003a:3)

50. How do we offer spiritual care?