Reflecting on choices and responsibility in palliative care in the context of social disadvantage

This is the final version. Available on open access from SAGE Publications via the DOI in this recordThere is a need to understand how to improve palliative care provision for people impacted by social inequity. Social inequity, such as that related to socioeconomic circumstances, has profound impacts on experiences of death and dying, posing personal and professional challenges for frontline professionals tasked to ensure that everyone receives the best standard of care at the end of their lives. Recent research has highlighted an urgent need to find ways of supporting healthcare professionals to acknowledge and unpack some of the challenges experienced when trying to deliver equitable palliative care. For example, those involved in patient or person-centred activities within health settings often feel comfortable focusing on individual choice and responsibility. This can become ethically problematic when considering that inequities experienced towards the end of life are produced and constrained by socio-structural forces beyond one individual's control. Ideas and theories originating outside palliative care, including work on structural injustice, cultural safety and capabilities approach, offer an alternative lens through which to consider roles and responsibilities for attending to inequities experienced at the end of life. This paper draws upon these ideas to offer a new way of framing individual responsibility, agency and collective action that may help palliative care professionals to support patients nearing their end of life, and their families, in the context of socioeconomic disadvantage. In this paper, we argue that, ultimately, for action on inequity in palliative care to be effective, it must be coherent with how people understand the production of, and responsibility for, those inequities, something that there is limited understanding of within palliative care

'No matter what the cost': A qualitative study of the financial costs faced by family and whnau caregivers within a palliative care context

Background: There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. Aim: To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. Design: In-depth qualitative interviews were conducted with 30 family/wha¯nau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Setting: Auckland, New Zealand. Findings: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Conclusion: Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and wha¯nau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings

Spiritual Diversity, Spiritual Assessment, and Māori End-of-Life Perspectives: Attaining Ka Ea

Copyright © 2020 by the authors. The contemporary world is endowed with increasingly diverse spiritual and cultural perspectives, yet little is known about the spiritual concerns and spiritual resilience of Māori from Aotearoa New Zealand at the end of life. A context is provided for the value of spiritual assessment and identification of spiritual needs or concerns. Spiritual concerns and the desire to attain a state of ka ea (fulfillment, gratitude, or peace) may point to interventions, helping activities, or referrals that guide treatment. We reflect on qualitative findings from the 2017–2020 Pae Herenga study of 61 caregiving families, their helping professionals, and religious/spiritual leaders. We explore essential spiritual values and practices that support kaumātua (older tribal people) who have a life-limiting illness in achieving a sense of satisfaction and fulfilment at the end of life. Three themes emerged: the relational is spiritual, the need to live into the future, and value of spiritual end-of-life care. While some scholars have lamented the lack of culturally appropriate rapid assessment instruments, we suggest that a more open-ended assessment guide is better suited to understand key elements of spiritual diversity and spiritual concerns, particularly the spiritual strengths and resources that lead to well-being and even thriving at life’s end. Finally, learning about spiritual diversity can assist others to reconnect to lost meanings and regain a more holistic and centred view of life