The terminal phase in Parkinson's disease: a mixed methods systematic review

Abstract

Background: Extending specialist palliative care to people with Parkinson's disease (PD) has been a priority over the past two decades. Despite improvements in advance care planning and early integration of palliative services, little is known about the dying phase of PD. Aims: To systematically review and synthesise the literature describing the occurrence and management of symptoms in the terminal phase of PD. Methods: Searches of MEDLINE, Embase, CINAHL, PsycInfo and Web of Science from 1990 to 2020 were conducted. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were integrated to produce the final analysis. Findings: 285 articles were reviewed and 18 met the inclusion criteria. Professionals found recognition of the terminal phase challenging, and palliative care services are underused. Difficulties include titration of dopaminergic medication, leading to premature termination, or incorrect dosing, of medication. Conclusion: More research is needed to capture the terminal phase of PD, in both the hospital and community setting, in order to increase the evidence base for symptom management.