Emeritus Professor Margaret Holloway University of Hull

Emeritus Professor Margaret Holloway University of Hull

Cicely Saunders The hospice vision Total care for total pain

Statistical evidence of sharp decline in religious observance (Crockett & Voas 2006) except fundamentalist Distinction between doctrinal beliefs & personal beliefs (Astley 2002) Surprising array of fragments of religious belief in secular societies; pick n mix (Heelas & Woodhead 2005; Spencer & Weldin 2012; Holloway et al 2013) Religion remains a way of life for minority ethnic and migrant populations BUT spirituality discourse has paid little attention to belief(s) or their content; spiritual not religious position increasingly under attack

The religious instinct is an essential element in the human make-up and will continue in some shape or form irrespective of the social and cultural context. Belief in God and an afterlife is the ultimate insurance policy against the fear and impact of death. It has to do with personal meaning-making and does not require external reference points.

My starting points Spiritual A dimension which brings together attitudes, beliefs, thoughts, feelings and practices reaching beyond the wholly rational and material. Faith Humanistic or religious beliefs which guide the way an individual seeks to live. Lloyd, M. [M. Holloway] (1997) Dying and bereavement, Spirituality and Social work in a Market economy of Welfare, BJSW 27:2.

Religion answers a need for meaning, order, purpose; but it is not itself that need it is one expression of a kind of thinking which is in fact characteristic of human mental processes, but which we become more than usually aware of in situations of existential challenge (p.95) Grainger, R. (1998) The Social Symbolism of Grief and Mourning, London, Jessica Kingsley.

You need to have a theory of social complexity to try and understand where religion is in a society and what s happening to it. People often imagine that religion is still a completely separate function this completely unique sphere of society that you deal with churches and mosques and that s what religion is and it s absolutely bounded. Well, religion isn t like that. So de-differentiation is where neat boundaries between different social spheres like education, law, entertainment get blurred and fuzzy...and that affects religion as well as other spheres (Woodhead quoted in Rowson 2014)

1. Beliefs from childhood 2. Beliefs/ values developed through crisis 3. Mature religious faith 4. Humanistic approaches 5. No frameworks

Thinking about death and its relationship to life was part of making sense Religious even people of faith don t know, we call it a Christian hope Materialist beliefs like all animals we re born, we live and we die. Eco-spiritual I don t believe that you can die and your energy or your soul whatever you want to call it can just disappear. Dualist we all have a soul and that soul is us, whatever is wrapped round it is irrelevant and that soul goes on Transition this tunnel that you go through towards the light Re-uniting I do believe that they do come together Reincarnation I believe that you re reborn again. you re not born into the world just to die

1. Personal meaning-making located within wider religious, quasi-religious and philosophical frameworks. 2. Belief is expressed in practices not words: spiritual literacy lacking. 3. Little evidence of wholesale secularism - death is not quite the end. I think that very few people nowadays would seem to see that the purpose of a funeral is to serve a higher being but there is often a sense of serving a higher meaning but that, that meaning is not nearly so well defined it s spiritual but it s not defined. (independent funeral arranger).

Free-writing study in palliative care and bereavement Rev Dr Andrew Goodhead Memorial book entries commonly draw on religious and cultural norms, cultural norms known to the writer Traditional terms and theological themes (heaven, angels) are drawn upon by writers to express their understanding of where the deceased is and what the deceased has become Death is described as an end to suffering and a transition to a state of peace. Themes of letting go, continuing bonds and re-union predominate Memorial services are often broadly religious events into which secular music, poetry and prose are added. Ritual is lacking in many services. The memorialisation aspect of the event is taken up by attendees and is the aspect of the event with they most readily engage. This is a moment of personal meaning making. RememberMe: The Changing Face of Memorialisation 12

love joy creativity mystery connectedness awe compassion wonder

a dimension within every person (Golberg 1998), including atheists, agnostics, humanists and hedonists (Baldacchino and Draper 2001); that it permeates, energizes and enlivens every aspect of the person (Ross 1997); that it can help us access a mode of perception that goes beyond logical reasoning and leads to congruence through a sense of unity with the universe (Friedemann et al 2002); that it is an appeal to, or a recognition of, a higher level existence wherein the paradoxes and antinomies of our mundane existence are to be resolved (Dawson 1997); that it is a mysterious and transcendental force which transcends the rational and intellectual capabilities of our human state, uniting us with the whole of creation both at a material and supernatural level (McSherry 2006); and that it is everlasting phenomenon that sustains and pervades all cultures (Narayanasamy and Owens 2001) Has spirituality become a sort of giant conceptual sponge? (Paley, 2008, p.5)

Spirituality is more basic than religiousness. It is a subjective experience that exists both within and outside traditional religious systems. Spirituality relates to the way in which people understand and live their lives in view of their core beliefs and values and their perception of ultimate meaning. Spirituality includes the need to find satisfactory answers to ultimate questions about the meaning of life, illness and death. It can be seen as comprising elements of meaning, purpose, and connection to a higher power or something greater than self. Holloway et al (2011) Spiritual care at the end of life: a systematic review of the literature, p. 18. Published online DH.

there is an emerging secular spirituality which is typically atheistic or humanistic but does not disavow the idea that some forms of experience, ritual or practice may be deeper or more meaningful than others; a perspective that still finds value in the term spiritual as a way to encapsulate that understanding (Rowson 2014) Human society which only sees and acknowledges its physical realities has little scope for development beyond the physicality of consumerism. This has become the dominant paradigm of post modernity.humanity more aware of its metaphysical nature can engage with open narratives inspired by myth to develop its spiritual life (Crocker, G. (2010) An Enlightened Philosophy. Can an atheist believe anything?

Spirituality is concerned with meaning and purpose, in particular, the search for meaning; Spirituality is experienced through relationships, and those relationships may be with an external or higher source, or they may be experienced through families, friends or communities; Spirituality promotes certain behaviours and practices, within oneself and also towards the other person.

Spirituality... has no definition on which all can agree but many definitions in which all can share (Burke (2007) p.3). We need to find a model which is: INCLUSIVE DO-ABLE

Spirituality can be beneficial for patients facing the end of their lives Religious coping Meaning production Hopeful reframing Spiritual care can be difficult to provide Lack of clarity over what it is Secular professionals lack confidence to address spiritual need Changing roles of chaplaincy and clergy Resistance based on particular assumptions about religion

The relationship between a more generic spirituality and human well-being. Most of the research is done in the US within a much more religious context How well professionals understand the concept of spirituality. Evaluations of the implementation of the Liverpool Care Pathway revealed that health care professionals do not adequately address the spiritual dimension due to lack of understanding of the concept What strategies and models are being used, particularly within the UK to deal with spiritual issues. Companioning and competency models are favoured by UK practitioners

Practitioners in secular professions show confusion, uncertainty and ambivalence about spiritual care (McSherry, 2006; Pulchalski et al, 2006; Holloway, 2007a) Constant calls for training of health care professionals to include spirituality (e.g. Pulchalski et al, 2009; Yardley, 2009). Chaplains uncertain of their role in pluralist contexts and in m-d team (Billings, 1992; Lloyd, M. [M. Holloway],1995; Sinclair et al, 2006) Some voices raised against secular chaplains (Paley, 2008)

Being there Helping to find sources of meaning Supportive care holding a safe nurturing space Empathy and compassion entering into weak places Attentive listening Sharing the journey Sustaining Spiritual care = BEING rather than DOING

1. Cultural pluralism 2. Dementia 3. Spiritual care in the community

To die at peace, with one s affairs in order; Care which manages distressing symptoms in the most effective way To die in a place of one s choosing; To be surrounded by and reconciled with loved ones; To be treated with compassion and respect and afforded dignity.

Importance of underpinning ontological assumptions. Approaches to relationships and significance of relatedness. Relationship between culture and identity. Cultural style

universal approaches show sensitivity and openness to cultural difference culturally specific approaches focus on specific elements and practices Need to interpret the meanings embodied in those practices and embedded in traditions; knowledge must be multicultural, recognising specific differences, our approach must be transcultural, communicating across difference

Significant contribution from indigenous peoples of N America, Australia, NZ Understands relationship between people and their environments differently from western paradigm: I am not in this place but this place is in me (Zapf, 2005) implications for care environments? ageing and dying in place? (O Connor and Pearson, 2004; Berkman, 2006; Chui, 2008). The sacred is embedded in everyday life and practices implications of living until I die?

If we cannot find an understanding of spirituality that is relevant in the case of people with late-stage dementia, either: (a) spirituality is not, in fact, part and parcel of what it is to be a person or (b) a person with dementia is not a person

If we cannot incorporate spiritual needs and resources into person-centred practice with people with late-stage dementia, either (a) Our practice is not holistic, or (b) a person with dementia is not a whole person

Celebrating the Life? The hidden face of dementia Emeritus Professor Margaret Holloway, Dr Miroslava Hukelova and Dr Louis Bailey The Continuing Self.Biography, narrative, personhood and the spiritual journey for the person with dementia Holloway, Laurenson, Sloan, Harman, Morrow, Kevern I think he had questions, but I think he would rather meditate on them himself rather than go to something formal to have somebody else I think he kept his beliefs to himself quite a lot, my Dad. I would say he had spiritual beliefs, but I am not sure that they expressed themselves he definitely believed that there was something higher Dad made some reflection on his death as well he didn t say anything for a few seconds.. but then what he said made sense, that we don t really understand death, as philosophical observation, we think we do, we don t really Prayer became important to him more in later life, you know, and he said you have to really mean it RememberMe: The Changing Face of Memorialisation 30

Who Were They? Trans Identities and Memorialisation Dr Louis Bailey Only 9 respondents wanted a traditional/religious funeral service (n=141). Emphasis on feeling excluded Spirituality expressed through connectedness online important. RememberMe: The Changing Face of Memorialisation 31

UK practitioners favour 2 approaches: Companioning Competency-based models and use of story-telling (DH lit review 2011) Narrative is a means of refashioning personal biography in the search to make sense of our present circumstances and our past. In the describing and re-describing of our life s events those receiving end of life care may not only be providing an account of events but also discovering underlying patterns of meaning in their life. e-elca spirituality module session2

Marie Cure Religious/spiritual competencies Level 1: All staff /volunteers who have casual contact with patients/ families/carers Basic awareness, communication Level 2: All staff and volunteers whose duties require contact with patients and their families/carers Ability recognise and refer difficult needs Level 3: Staff and volunteers who are members of the multidisciplinary team - undertake assessment, develop plan Level 4: Staff or volunteers whose primary responsibility is for the spiritual and religious care of patients, visitors and staff Manage/facilitate meeting of complex spiritual/ existential needs

JOINING Spiritual awareness. Start where the person is. Appropriate for everyone LISTENING Spiritual sensitivity. Assessment of significance of spiritual issues. Everyone up to a point INTERPRETING Spiritual exploration. Only workers with specialist training. In conjunction with religious professional/ spiritual care advisor UNDERSTANDING Spiritual empathy. Only workers with understanding of own spirituality

Means problematic situation no longer has problematic, painful or oppressive impact Transcendence Transformation Spirituality which creates transformational change May mean holding all the messy bits together Wholeness Hope Not losing sight of the goodness of life even when not visible