"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning.

Publisher: Public Library of Science Country of Publication: United States NLM ID: 101285081 Publication Model: eCollection Cited Medium: Internet ISSN: 1932-6203 (Electronic) Linking ISSN: 19326203 NLM ISO Abbreviation: PLoS One Subsets: MEDLINE

Original Publication: San Francisco, CA : Public Library of Science

Advance Care Planning* ; Decision Making*; Caregivers/*psychology ; Patients/*psychology; Adult ; Aged ; Aged, 80 and over ; Chronic Disease/psychology ; Female ; Humans ; Interviews as Topic ; Male ; Middle Aged ; Terminal Care ; Young Adult

Background: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme.
Method: We conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach.
Results: Participants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs.
Conclusion: The directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death.
Competing Interests: The authors have declared that no competing interests exist.

Death Stud. 2009 Feb;33(2):153-74. (PMID: 19143109)
J Pain Symptom Manage. 2018 Aug;56(2):213-221.e4. (PMID: 29775694)
Palliat Support Care. 2013 Feb;11(1):37-46. (PMID: 22377014)
Death Stud. 2013 Nov-Dec;37(10):953-70. (PMID: 24517523)
BMJ. 2010 Mar 23;340:c1345. (PMID: 20332506)
BMC Fam Pract. 2020 May 25;21(1):94. (PMID: 32450812)
J Pain Symptom Manage. 2018 Nov;56(5):659-666.e2. (PMID: 30096442)
J Am Geriatr Soc. 2005 Feb;53(2):290-4. (PMID: 15673354)
Palliat Support Care. 2020 Aug;18(4):425-430. (PMID: 31699170)
J Transcult Nurs. 2009 Oct;20(4):405-16. (PMID: 19597187)
J Gen Intern Med. 2001 Jan;16(1):32-40. (PMID: 11251748)
J Pain Symptom Manage. 2018 Sep;56(3):436-459.e25. (PMID: 29807158)
J Pain Symptom Manage. 2013 Jun;45(6):1094-106. (PMID: 23017628)
Palliat Med. 2018 Sep;32(8):1305-1321. (PMID: 29956558)
BMC Med Res Methodol. 2013 Sep 18;13:117. (PMID: 24047204)
Age Ageing. 2013 Jul;42(4):455-61. (PMID: 23443510)
Chest. 2015 Jan;147(1):82-93. (PMID: 25103451)
Palliat Support Care. 2021 Feb;19(1):82-92. (PMID: 32744205)
Psychooncology. 2016 Apr;25(4):362-86. (PMID: 26387480)
J Am Med Dir Assoc. 2016 Apr 1;17(4):284-93. (PMID: 26861748)
Milbank Q. 2005;83(4):731-57. (PMID: 16279965)
J Palliat Med. 2004 Apr;7(2):335-40. (PMID: 15130214)
BMJ. 2000 Jan 8;320(7227):114-6. (PMID: 10625273)
Clin J Am Soc Nephrol. 2006 Sep;1(5):1023-8. (PMID: 17699322)
BMJ Support Palliat Care. 2017 Sep;7(3):335-340. (PMID: 26424073)
Omega (Westport). 2009-2010;60(3):225-39. (PMID: 20361723)
Singapore Med J. 2016 Jan;57(1):22-8. (PMID: 26831313)
J Am Geriatr Soc. 2010 Jul;58(7):1233-40. (PMID: 20649686)
BMJ. 2006 Oct 28;333(7574):886. (PMID: 16990294)

Date Created: 20210618 Date Completed: 20211117 Latest Revision: 20211117

20240829

PMC8213132

10.1371/journal.pone.0252598

34143798