Experience of Dying: Concerns on Palliative Care for A Parkinson’s Disease Patient

Abstract

<p>More than 10 million people worldwide are living with Parkinson’s disease (PD). It is estimated that by 2030, Chinese PD patients will be accounting for a half of the worldwide PD patients. The motor and non-motor complications of PD caused degrading end-of-life quality for the PD patients. Previous studies on PD emphasized the importance of involvement of caregivers in education of palliative care for PD patients. The lack of knowledge created additional burdens to the healthcare system and prolonged the grief period of family members of PD patients. It is important to consider how experiences of PD affect end-of-life care. As such, it could enhance the end-of-life quality of the patient and caregivers.</p><p>Through reference to my own experience as a caregiver for my late father who has PD, the reflective narrative uses an auto-ethnographic format to interpret how the illness brings suffering to the patient and family caregivers as occurring in the last three months of his life. This enhances our understanding of the PD through descriptions of dying and caring processes. Knowledge and wisdom are further interpreted as enhancing researchers’ understanding the needs of palliative care to PD patients. The narrative also addresses the lack of information and knowledge communication with the caregivers in the current healthcare system.</p><p>Concepts presented in this article aid researchers’ understanding of how quality palliative care might be achieved. Such knowledge has important implications for the management of patients of PD, which may be most clearly described through the lens of the caregivers.</p>