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Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals

Published online by Cambridge University Press:  08 November 2019

Oindrila Dutta Open the ORCID record for Oindrila Dutta [Opens in a new window] ,
Priya Lall Open the ORCID record for Priya Lall [Opens in a new window] ,
Paul Victor Patinadan Open the ORCID record for Paul Victor Patinadan [Opens in a new window] ,
Josip Car Open the ORCID record for Josip Car [Opens in a new window] ,
Chan Kee Low ,
Woan Shin Tan Open the ORCID record for Woan Shin Tan [Opens in a new window]  and
Andy Hau Yan Ho Open the ORCID record for Andy Hau Yan Ho [Opens in a new window]
Oindrila Dutta
Affiliation:
Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore
Priya Lall
Affiliation:
School of Geography, Queen Mary University of London, London, UK
Paul Victor Patinadan
Affiliation:
Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore
Josip Car
Affiliation:
Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore
Chan Kee Low
Affiliation:
Economics Program, School of Social Sciences, Nanyang Technological University, Singapore
Woan Shin Tan
Affiliation:
Health Services & Outcomes Research Department, National Healthcare Group, Singapore
Andy Hau Yan Ho*
Affiliation:
Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore The Palliative Care Centre for Excellence in Education and Research (PalC), Singapore
*
Author for correspondence: Andy Hau Yan Ho, 14 Nanyang Drive, HSS-04-03, Nanyang Technological University, Singapore637332. E-mail: andyhyho@ntu.edu.sg
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Abstract

Objectives

Asia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients’ autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled.

Methods

Guided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals’ attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis.

Results

The extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices.

Significance of results

Healthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

Keywords

Advance care planningCross-cultural comparisonFocus groupsHealth personnelQualitative research
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Special Issue 4: Palliative and Supportive Care During The COVID-19 Pandemic , August 2020 , pp. 425 - 430
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Copyright
Copyright © Cambridge University Press 2019

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References

REFERENCES

Advance Care Planning (2019) Retrieved October 24, 2019, from Living Matters website: https://livingmatters.sg/Google Scholar
Bowman, KW and Singer, PA (2001) Chinese seniors’ perspectives on end-of-life decisions. Social Science and Medicine 53(4), 455–464. https://doi.org/10.1016/S0277-9536(00)00348-8CrossRefGoogle ScholarPubMed
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oaCrossRefGoogle Scholar
Brinkman-Stoppelenburg, A, Rietjens, JACC and van der Heide, A (2014) The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine 28(8), 1000–1025. https://doi.org/10.1177/0269216314526272CrossRefGoogle ScholarPubMed
Chaturvedi, SK, Loiselle, CG and Chandra, PS (2009) Communication with relatives and collusion in palliative care: A cross-cultural perspective. Indian Journal of Palliative Care 15(1), 1–11. https://doi.org/10.4103/0973-1075.53485CrossRefGoogle ScholarPubMed
Collins, JW, Zoucha, R, Lockhart, JS, et al. (2018) Cultural aspects of end-of-life care planning for African Americans: An integrative review of literature. Journal of Transcultural Nursing 29(6), 578–590. https://doi.org/10.1177/1043659617753042CrossRefGoogle ScholarPubMed
Doorenbos, AZ and Nies, MA (2003) The use of advance directives in a population of Asian Indian Hindus. Journal of Transcultural Nursing 14(1), 17–24. https://doi.org/10.1177/1043659602238346CrossRefGoogle Scholar
Entwistle, VA, Carter, SM, Cribb, A, et al. (2010) Supporting patient autonomy: The importance of clinician-patient relationships. Journal of General Internal Medicine 25(7), 741–745. https://doi.org/10.1007/s11606-010-1292-2CrossRefGoogle ScholarPubMed
Fuenmayor, R (1991) Truth and openness: An epistemology for interpretive systemology. Systems Practice 4(5). https://doi.org/10.1007/BF01104462CrossRefGoogle Scholar
Harnett, PJ and Greaney, AM (2008) Operationalizing autonomy: Solutions for mental health nursing practice. Journal of Psychiatric and Mental Health Nursing 15(1), 2–9. https://doi.org/10.1111/j.1365-2850.2007.01183.xCrossRefGoogle ScholarPubMed
Ikonomidis, S and Singer, PA (1999) Autonomy, liberalism and advance care planning. Journal of Medical Ethics 25(6), 522–527. https://doi.org/10.1136/jme.25.6.522CrossRefGoogle ScholarPubMed
Irwin, CA and Chung, WH (2010) Advance care planning – ahead of our time or never too late (No. 1; Vol. 40). Retrieved October 24, 2019 from The College Mirror website: http://www.cfps.org.sg/publications/the-college-mirror/article/869Google Scholar
Johnson, S, Kerridge, I, Butow, PN, et al. (2017) Advance care planning: Is quality end of life care really that simple? Internal Medicine Journal 47(4), 390–394. https://doi.org/10.1111/imj.13389CrossRefGoogle ScholarPubMed
Johnstone, M-JJ and Kanitsaki, O (2009) Ethics and advance care planning in a culturally diverse society. Journal of Transcultural Nursing 20(4), 405–416. https://doi.org/10.1177/1043659609340803CrossRefGoogle Scholar
Kai, J, Beavan, J and Faull, C (2011) Challenges of mediated communication, disclosure and patient autonomy in cross-cultural cancer care. British Journal of Cancer 105(7), 918–924. https://doi.org/10.1038/bjc.2011.318CrossRefGoogle ScholarPubMed
Krishna, L and Menon, S (2014) Understanding the practice of collusion on end of life care in Singapore. JMED Research 2014, 1–8. https://doi.org/10.5171/2014.543228Google Scholar
Lai, DWL (2009) Filial piety, caregiving appraisal, and caregiving burden. Research on Aging 32(2), 200–223. https://doi.org/10.1177/0164027509351475Google Scholar
Lien Centre for Palliative Care, Duke-NUS Graduate Medical School (2011) Report on the National Strategy for Palliative Care. Retrieved October 24, 2019 from https://www.singaporehospice.org.sg/en/wp-content/uploads/2018/08/Report_on_National_Strategy_for_Palliative_Care-5Jan2012.pdfGoogle Scholar
Low, JA, Kiow, SL, Main, N, et al. (2009) Reducing collusion between family members and clinicians of patients referred to the palliative care team. The Permanente Journal 13(4), 11–15. Retrieved October 24, 2019 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2911829/CrossRefGoogle Scholar
McGuire, AL, McCullough, LB, Weller, SC, et al. (2005) Missed expectations? Physicians’ views of patients’ participation in medical decision-making. Medical Care 43(5), 466–470. https://doi.org/10.1097/01.mlr.0000160415.08497.11CrossRefGoogle ScholarPubMed
McLaughlin, LA and Braun, KL (1998) Asian and Pacific Islander cultural values: Considerations for health care decision making. Health & Social Work 23(2), 116–126. https://doi.org/10.1093/hsw/23.2.116CrossRefGoogle ScholarPubMed
McLeod, C and Sherwin, S (2000) Relational autonomy, self-trust, and health care for patients who are oppressed. In MacKenzie, C and Stoljar, N (eds), Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self (Vol. 345, pp. 259–279). Retrieved October 24, 2019 from https://ir.lib.uwo.ca/cgi/viewcontent.cgi?article=1348&context=philosophypubGoogle Scholar
Ochoa-Arias, AE (1998) An interpretive-systemic framework for the Study of Community Organizations. Systemic Practice and Action Research 11(5), 543–562. https://doi.org/10.1023/A:1022460828246CrossRefGoogle Scholar
Pope, C, Ziebland, S and Mays, N (2000) Qualitative research in health care: Analysing qualitative data. BMJ: British Medical Journal 320(7227), 114.CrossRefGoogle ScholarPubMed
Proctor, E, Silmere, H, Raghavan, R, et al. (2011) Outcomes for implementation research: Conceptual distinctions, measurement challenges and research agenda. Administration and Policy in Mental Health and Mental Health Services Research 38(2), 65–76. https://doi.org/10.1007/s10488-010-0319-7CrossRefGoogle ScholarPubMed
Robins-Browne, K, Palmer, V and Komesaroff, P (2014) An unequivocal good? Acknowledging the complexities of advance care planning. Internal Medicine Journal 44(10), 957–960. https://doi.org/10.1111/imj.12556CrossRefGoogle ScholarPubMed
Schim, SM, Doorenbos, A, Benkert, R, et al. (2007) Culturally congruent care: Putting the puzzle together. Journal of Transcultural Nursing 18(2), 103–110. https://doi.org/10.1177/1043659606298613Google ScholarPubMed
Schlesinger, M (2002) A loss of faith: The sources of reduced political legitimacy for the American Medical Profession. The Milbank Quarterly 80(2), 185–235. https://doi.org/10.1111/1468-0009.t01-1-00010CrossRefGoogle ScholarPubMed
Searight, HR and Gafford, J (2005) Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician 71(3), 515–522. Retrieved October 24, 2019 from https://www.aafp.org/afp/2005/0201/p515.htmlGoogle ScholarPubMed
Tan, CT and Farley, JU (1987) The impact of cultural patterns on cognition and intention in Singapore. Journal of Consumer Research 13(4), 540–544. https://doi.org/10.1086/209087Google Scholar
Walter, JK and Ross, LF (2014) Relational autonomy: Moving beyond the limits of isolated individualism. Pediatrics 133, 16–23. https://doi.org/10.1542/peds.2013-3608DCrossRefGoogle ScholarPubMed
Werth, JLJ, Blevins, D, Toussaint, KL, et al. (2002) The influence of cultural diversity on end-of-life care and decisions. The American Behavioral Scientist 46(2), 204–219. https://doi.org/10.1177/000276402236673CrossRefGoogle Scholar