{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,30]],"date-time":"2026-07-30T13:19:16Z","timestamp":1785417556910,"version":"3.56.0"},"reference-count":61,"publisher":"Cambridge University Press (CUP)","license":[{"start":{"date-parts":[[2026,7,23]],"date-time":"2026-07-23T00:00:00Z","timestamp":1784764800000},"content-version":"unspecified","delay-in-days":203,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Pall Supp Care"],"published-print":{"date-parts":[[2026]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec id=\"S1478951526103277_sec1a\">\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Individuals with Parkinson\u2019s disease (PD) often experience delays in initiating advance care planning (ACP) and palliative care (PC) which can impact their autonomy as cognitive function declines. Because patient autonomy and decision-making in ACP and PC for individuals with PD is insufficiently explored, this systematic review with narrative synthesis aims to fill this gap by reviewing the existing literature on these topics. It examines how awareness and timing influences ACP and PC implementation, how illness narratives shape decision-making and autonomy perceptions and the roles of caregivers and neurologists in supporting patient autonomy.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526103277_sec2b\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a systematic review with narrative synthesis of original research investigating ACP and PC in individuals with PD in accordance with PRISMA guidelines. The methodological quality of included studies was assessed using the Critical Appraisal Skills Programme checklists. Illness narrative types were categorized according to Arthur W. Frank\u2019s framework (chaos, restitution and quest narratives). Findings were synthesized narratively and organized thematically in line with the review objectives.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526103277_sec3c\" sec-type=\"results\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We included 42 studies using quantitative and qualitative methodologies involving 4154 individuals with PD and 2191 caregivers. Several themes were identified. Limited knowledge of ACP and PC explained its lower occurrence. ACP is often delayed due to uncertainty and misconceptions leading to late or crisis-driven discussions. Narrative medicine shows most individuals with PD share chaos narratives reflecting a focus on motor symptoms over autonomy. Lastly, individuals with PD expressed a need for greater autonomy support while ACP counseling is well received and improves understanding of care needs and end-of-life decisions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1478951526103277_sec4d\">\n                    <jats:title>Significance of results<\/jats:title>\n                    <jats:p>Delays in initiating ACP and PC are associated with diminished autonomy in individuals with PD. Narrative medicine could help neurologists start ACP and PC discussions earlier, supporting autonomy and thereby aligning care with patient preferences.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1017\/s1478951526103277","type":"journal-article","created":{"date-parts":[[2026,7,23]],"date-time":"2026-07-23T07:46:55Z","timestamp":1784792815000},"update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":0,"title":["Patient autonomy in advance care planning for Parkinson\u2019s disease: Systematic review with narrative synthesis"],"prefix":"10.1017","volume":"24","author":[{"given":"Evie Z.","family":"Bouma","sequence":"first","affiliation":[{"id":[{"id":"https:\/\/ror.org\/05xvt9f17","id-type":"ROR","asserted-by":"publisher"}],"name":"Leiden University Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jan W.","family":"Schoones","sequence":"additional","affiliation":[{"name":"Leiden University Medical 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Published by Cambridge University Press.","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http:\/\/creativecommons.org\/licenses\/by\/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.","name":"license","label":"License","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This content has been made available to all.","name":"free","label":"Free to read"}],"article-number":"e204"}}