What constitutes a good death? Perceptions of the public and professionals working within generalised and specialised palliative care services in the South East of Ireland.

Abstract

Death is universal, making end of life care (EOLC) crucial for all (Cipolletta & Oprandi, 2014). Health and social care professionals are faced with a monumental task more so than any other profession, as they may only have one chance to get care right for the terminally ill and their family/loved ones (Irish Hospice Foundation (IHF), 2017). Therefore, a fundamental line of inquiry is, what constitutes adequate EOLC and where can possible improvements be made? (Meier et al., 2016). Thus, this research centres upon the concept of a ‘good death’ (GD). Minimal international studies and none to date in Ireland have explored this component from both public and professional viewpoints (McLoughlin, 2017; Meier et al., 2016). Thus, it is unknown if current palliative and EOLC service delivery reflects public expectation. Recent legislative developments in Ireland, namely the Assisted Decision Making (Capacity) Act (2015), have further prioritised the need for individual preferences in EOLC (House of Oireachtas, 2019). Correspondingly, this research is a timely investigation into both public and professional perceptions of the meaning of a GD. A qualitative methodological approach involving the use of in-depth, semi-structured interviews was adopted. Findings revealed consensus among the public and generalised professionals on their views of a GD, while specialised professionals had some divergent ideals on this topic. Five main findings of a GD were also uncovered; (1) Pain, (2) Family, (3) Control, (4) Maintaining Personhood, (5) Independence. Independence is a newly emerging finding on what constitutes a GD in Ireland. Thus, this study provides new insight on public perceptions of a GD in Ireland and extends previous national and international research. Results further provided an evaluation of current palliative care supports and services to obtain a GD. Key challenges hindering the accomplishment of a GD were; (1) Resource issues, (2) Lack of public awareness of EOLC services, initiatives and resource issues (3) Media influence, (4) Lack of supports for family, loved ones, informal caregiver(s) and professionals (5) Professional challenges. Key conclusions include; (1) A GD may be impossible to define, (2) Current unmet needs in palliative care means a GD may be largely unattainable, (3) Lack of professional training, (4) Many resource issues remain in palliative care in the southeast of Ireland, (5) Accessibility and availability of financial supports is problematic, (6) Decision-making initiatives cause confusion and professional fears on safeguarding individuals in their care. This study recommends; (1) Heightened efforts by government and policy makers to reduce identified resource issues, (2) Increased public awareness campaigns, (3) Accurate education to the public, (4) Enhanced prior and post bereavement supports for family/loved ones, (5) Heightened supports for professionals, (6) Training for informal caregivers, (7) Committed provision of supervision, (8) Training across all palliative care services.