Henry Llewellyn

Spiritual beliefs near the end of life: a prospective cohort study of people with cancer receiving palliative care

Despite growing research interest in spirituality and health, and recommendations on the importance of spiritual care in advanced cancer and palliative care, relationships between spiritual belief and psychological health near death remain unclear. We investigated (i) relationships between strength of spiritual beliefs and anxiety and depression, intake of psychotropic/analgesic medications and survival in patients with advanced disease; and (ii) whether the strength of spiritual belief changes as death approaches.

Experiences of healthcare professionals in the community dealing with the spiritual needs of children and young people with life-threatening and life-limiting conditions and their families: report of a workshop

Objective We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice. Method We analysed thematically presentations and small group discussions with HCP that took place as part of a day-long workshop exploring the place of spirituality in paediatric healthcare. Results (1) HCP conceptualised spirituality as highly individualised searches for meaning, hope and connectedness to self, others and the world. They saw spirituality within a developmental context. (2) HCP described spiritual concerns that were tied to their own conceptualisations of spirituality, centring on ideas of loss, including loss of hope or meaning. (3) HCP approached spiritual concerns of CYP and families by ‘being there’ and supporting spiritual enquiry. (4) Challenges to their work included managing hopes of CYP and families in the face of poor prognoses, discussions about miracles and issues with their own faith. Spiritual care was seen as different to other areas of care which HCP felt had a greater prescription in delivery. Conclusions The findings underscore the complexity of spirituality in times of illness and the challenges faced in its management. HCP should be alerted to the myriad ways spirituality emerges in serious illness and opportunities for developing confidence in attending to spiritual issues with CYP and families through training. Research should explore with patients, families and HCP how tensions among CYP, autonomy, the maintenance of hope and miracle beliefs are best approached within care.

Social and structural conditions for the avoidance of advance care planning in neuro-oncology: a qualitative study

Background Primary brain tumours newly affect >260 000 people each year worldwide. In the UK, every year >10 000 people are diagnosed with a brain tumour while >5000 die annually from the disease. Prognoses are poor, cognitive deterioration common and patients have prolonged palliative needs. Advance care planning (ACP) may enable early discussion of future care decisions. Although a core commitment in the UK healthcare strategy, and the shared responsibility of clinical teams, ACP appears uncommon in practice. Evidence around ACP practice in neuro-oncology is limited. Objectives We aimed to elicit key social and structural conditions contributing to the avoidance of ACP in neuro-oncology. Design A cross-sectional qualitative study design was used. Setting One tertiary care hospital in the UK. Participants Fifteen healthcare professionals working in neuro-oncology participated in this study, including neuro-oncologists, neurosurgeons, clinical nurse specialists, allied healthcare professionals and a neurologist. Method Semi-structured interviews were conducted with participants to explore their assumptions and experiences of ACP. Data were analysed thematically using the well-established framework method. Results Participants recognised the importance of ACP but few had ever completed formal ACP documentation. We identified eight key factors, which we suggest comprise three main conditions for avoidance: (1) difficulties being a highly emotive, time-intensive practice requiring the right ‘window of opportunity’ and (2) presence and availability of others; (3) ambiguities in ACP definition, purpose and practice. Combined, these created a ‘culture of shared avoidance’. Conclusion In busy clinical environments, ‘shared responsibility’ is interpreted as ‘others’ responsibility’ laying the basis for a culture of avoidance. To address this, we suggest a ‘generalists and specialists’ model of ACP, wherein healthcare professionals undertake particular responsibilities. Healthcare professionals are already adopting this model informally, but without formalised structure it is likely to fail given a tendency for people to assume a generalist role.

Living Up to a Good Death: Complexities and Constraints in End of Life Choices

The concept of choice has gained favour with politicians and policymakers over the past two decades as a means of driving down costs, driving improvements in healthcare and empowering patients in decisions about their care. It is a concept equally taken up by patients and families and now appears to have secured its place as a moral imperative in the public imagination. In the UK NHS, as with other high-income healthcare systems, choice has become a key principle guiding the way that healthcare is organised and delivered. Recently, attempts have made been to apply the logic of choice to the context of care at the end of life. This chapter considers two central accounts of choice: the market version of choice and the civic version of choice. It introduces the ideas that underpin each version of choice and discusses the ways in which patients are implicated and defined in relation to them. It then discusses how each version becomes complicated in the context of end of life, taking the ideal of a “good death” as the central point of reference. The aim is to outline tensions in the choice agenda and to highlight the complexities inherent in the application of choice to care at the end of life.