Understanding the Meaning of a Good Death for People Living With Parkinson's Disease: Qualitative Study

Parkinson's disease is the second most common neurodegenerative disorder globally. Despite growing attention to palliative care in Parkinson's disease, little is known about what constitutes a "good death" from the perspective of people living with Parkinson's disease (PLwPD).

To explore the meaning of a good death for PLwPD.

In this cross-sectional multicentre qualitative study, we conducted semi-structured interviews with 30 PLwPD recruited through purposive sampling from four geriatric and neurology outpatient clinics between May 2021 and December 2022. Transcripts were analyzed using inductive thematic analysis. The process involved independent coding and iterative discussions grounded in a constructionist paradigm.

The sample was diverse in terms of race, gender, age, religious affiliation, educational background, and disease stage. We identified two major themes related to the participants' last days of life: 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.

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 include 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 enhancing the quality of dying-and of life-in this population.