Understanding the Meaning of a Good Death for People living with Parkinson’s Disease: Qualitative study

Abstract

ABSTRACT Background and Objectives Parkinson’s disease is the second most common neurodegenerative disorder globally. Despite its prevalence, the provision of Palliative Care for people living with Parkinson’s disease (PLwPD) is often delayed or entirely absent. To date, no study has explored what constitutes a "good death", a central goal of palliative care, from the perspective of PLwPD themselves. We aimed to give voice to PLwPD on this topic through a qualitative approach. Methods In this cross-sectional multicenter qualitative study, we conducted semi-structured interviews with 30 PLwPD selected through purposive sampling from four geriatric and neurology outpatient clinics between May 2021 and December 2022. An interdisciplinary team analyzed the transcripts using inductive thematic analysis. The process involved independent coding by three researchers, followed by iterative collaborative team discussions to refine and standardize the analysis, all grounded in a constructionist paradigm. To ensure methodological rigor, we employed techniques of triangulation, thick descriptions, and reflexivity. Results The sample was diverse in terms of race/ethnicity, gender, age (36–84 years), religious affiliation, educational background, and disease stage. We identified two major themes: Fears and Coping . Reported fears included experiencing disability, pain and discomfort, fear of feeling shame, fear of being a burden, fear of being abandoned and left helpless. Coping was a multidimensional theme, comprising the relational experience of feeling well cared for (defined by being valued, receiving clear and honest communication, and being treated with love and kindness) alongside the active strategies of finding opportunities for joy and drawing on religiosity and spirituality. Religiosity/spirituality appeared as a key factor in emotional regulation, fostering a sense of purpose and acceptance in the face of death. Discussion Our findings suggest that improving palliative care for PLwPD requires an approach that actively addresses specific fears and strengthens the multiple dimensions of coping, which includes fostering opportunities for joy, supporting spirituality, and enhancing the relational experience of feeling well cared for. This study illuminates often-overlooked aspects of care and provides a basis for the development of person-centered interventions aimed at preventing and alleviating suffering in this population.