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

Abstract

There 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.