Understanding the Meaning of a Good Death for People Living With Parkinson's Disease: Qualitative Study
8 affiliations
- 1Public Health Department Medical School Botucatu, São Paulo State University (UNESP) Botucatu Brazil
- 2Centre for Health Services Studies, University of Kent Canterbury UK
- 3Internal Medicine Department Medical School Botucatu, São Paulo State University (UNESP) Botucatu Brazil
- 4Movement Disorders Division, Neurology Department Federal University of São Paulo São Paulo Brazil
- 5Universidad Andrés Bello Faculty of Nursing Viña del Mar Chile
- 6Millenium Institute for Care Research (MICARE) Santiago Chile
- 7Geriatrics Division, Internal Medicine Department Medical School Botucatu, São Paulo State University (UNESP) Botucatu Brazil
- 8Pain and Palliative Care Division, Surgical Specialties and Anesthesiology Department Medical School Botucatu, São Paulo State University (UNESP) Botucatu Brazil
Abstract
Background: 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).
Objective: To explore the meaning of a good death for PLwPD.
Methods: 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.
Results: 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.
Conclusion: 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.
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BibTeX
@article{martins2026understanding,
title = {{Understanding the Meaning of a Good Death for People Living With Parkinson's Disease: Qualitative Study}},
author = {Leonardo Martins and Rasa Mikelyte and Ricardo Silva Carvalho and Henrique Ballalai Ferraz and Déborah Oliveira and Julia Maria Vanelli and Natália Rocha Tardelli and Fernanda Bono Fukushima and Edison Iglesias de Oliveira Vidal},
journal = {Journal of the American Geriatrics Society},
year = {2026},
month = jun,
doi = {10.1111/jgs.70541},
url = {https://doi.org/10.1111/jgs.70541},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Understanding the Meaning of a Good Death for People Living With Parkinson's Disease: Qualitative Study
AU - Leonardo Martins
AU - Rasa Mikelyte
AU - Ricardo Silva Carvalho
AU - Henrique Ballalai Ferraz
AU - Déborah Oliveira
AU - Julia Maria Vanelli
AU - Natália Rocha Tardelli
AU - Fernanda Bono Fukushima
AU - Edison Iglesias de Oliveira Vidal
PY - 2026
DA - 2026/06/30
JO - Journal of the American Geriatrics Society
DO - 10.1111/jgs.70541
UR - https://doi.org/10.1111/jgs.70541
AB - Background: 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). Objective: To explore the meaning of a good death for PLwPD. Methods: 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. Results: 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. Conclusion: 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.
SN - 0002-8614
SN - 1532-5415
ER -