Multidisciplinary Clinicians and the Relational Autonomy of Persons with Neurodegenerative Disorders and an Advance Care Plan: A Thematic Analysis

References

• Regan L, Preston NJ, Eccles FJR, Simpson J. The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis. Aging Ment Health. 2019;23(2):149–157. doi:10.1080/13607863.2017.1396578
   PubMed Web of Science ®Google Scholar
• Australian Health Ministers’ Advisory Council. A National Framework for Advance Care Directives. Australian Government Department of Health and Ageing; 2011. Available from http://www.coaghealthcouncil.gov.au/Portals/0/A%20National%20Framework%20for%20Advance%20Care%20Directives_September%202011.pdf. Accessed May 25, 2021.
   Google Scholar
• Awang H, Mansor N, Nai Peng T, Nik Osman NA. Understanding ageing: fear of chronic diseases later in life. J Int Med Res. 2018;46(1):175–184. doi:10.1177/0300060517710857
   PubMed Web of Science ®Google Scholar
• Bryden C, Spiritual Journey A. Into the I-Thou relationship: a personal reflection on living with dementia. J Relig Spiritual Aging. 2016;28(1–2):7–14. doi:10.1080/15528030.2015.1047294
   Web of Science ®Google Scholar
• Low L-F, Swaffer K, McGrath M, Brodaty H. Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies. Int Psychogeriatr. 2018;30(6):807–831. doi:10.1017/S1041610217001545
   PubMed Web of Science ®Google Scholar
• Watson M, Thomas M. Spiritual and ethical aspects of advance care planning. In: Thomas K, Lobo B, Detering K, editors. Advance Care Planning in End of Life Care. 2 ed. Oxford: Oxford University Press; 2018:58–68.
   Google Scholar
• Swerissen H, Duckett S. Dying Well. Report No. 2014-10. Grattan Institute. Available from: https://grattan.edu.au/wp-content/uploads/2014/09/815-dying-well.pdf. Accessed October 22, 2019.
   Google Scholar
• Australian Law Reform Commission. Elder Abuse-A National Legal Response: final Report 2017. Available from https://www.alrc.gov.au/publication/elder-abuse-A-national-legal-response-alrc-report-131/. Accessed January 15, 2021.
   Google Scholar
• Kabeer N. Resources, agency, achievements: reflections on the measurement of women’s empowerment. Dev Change. 1999;30(3):435–464. doi:10.1111/1467-7660.00125
   Web of Science ®Google Scholar
• Giddens A, Pierson C. Conversations with Anthony Giddens: Making Sense of Modernity. Stanford University Press; 1998.
   Google Scholar
• Robins-Browne K, Hegarty K, Guillmen M, Komesaroff P, Palmer V. The role of relational knowing in advance care planning. J Clin Ethics. 2017;28(2):122–134.
   Google Scholar
• Wilson F, Ingleton C, Gott M, Gardiner C. Autonomy and choice in palliative care: time for a new model? J Adv Nurs. 2014;70(5):1020–1029. doi:10.1111/jan.12267
   PubMed Web of Science ®Google Scholar
• Gómez-Vírseda C, de Maeseneer Y, Gastmans C. Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature. BMC Med Ethics. 2019;20(1):76. doi:10.1186/s12910-019-0417-3
   PubMed Web of Science ®Google Scholar
• Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53(5):821–832.e821. doi:10.1016/j.jpainsymman.2016.12.331
   PubMed Web of Science ®Google Scholar
• Advance Care Planning Australia. Advance care planning explained; 2020. Available from https://www.advancecareplanning.org.au/understand-advance-care-planning/advance-care-planning-explained. Accessed January 8, 2021.
   Google Scholar
• Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Oxford University Press, USA; 2001.
   Google Scholar
• World Medical Association. WMA International Code of Medical Ethics; 2018. Available from https://www.wma.net/policies-post/wma-international-code-of-medical-ethics/. Accessed August 4, 2019.
   Google Scholar
• Ryan T, McKeown J. Couples affected by dementia and their experiences of advance care planning: a grounded theory study. Ageing Soc. 2020;40(2):439–460. doi:10.1017/S0144686X1800106X
   Web of Science ®Google Scholar
• Medical Board of Australia. Good medical practice: a code of conduct for doctors in Australia; 2014. Available from https://www.medicalboard.gov.au/Codes-Guidelines-Policies/Code-of-conduct.aspx. Accessed August 1, 2019.
   Google Scholar
• Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ (Online). 2010;24:340.
   Google Scholar
• Davies JK. The concept of precedent autonomy. Bioethics. 2002;16(2):114–133. doi:10.1111/1467-8519.00274
   PubMed Web of Science ®Google Scholar
• Witt K. In defence of advance directives in dementia. Pac Philosophical Quart. 2020;101(1):2–21. doi:10.1111/papq.12292
   Web of Science ®Google Scholar
• Johnson SB, Butow PN, Kerridge I, Tattersall MHN. Patient autonomy and advance care planning: a qualitative study of oncologist and palliative care physicians’ perspectives. Support Care Cancer. 2018;26(2):565–574. doi:10.1007/s00520-017-3867-5
   PubMed Web of Science ®Google Scholar
• Jimenez G, Tan WS, Virk AK, Low CK, Car J, Ho AHY. Overview of systematic reviews of advance care planning: summary of evidence and global lessons. J Pain Symptom Manage. 2018;56(3):436–459.e425. doi:10.1016/j.jpainsymman.2018.05.016
   PubMed Web of Science ®Google Scholar
• Smith AK, Lo B, Sudore R. When previously expressed wishes conflict with best interests. JAMA Intern Med. 2013;173(13):1241–1245. doi:10.1001/jamainternmed.2013.6053
   PubMed Web of Science ®Google Scholar
• Schenker Y, Crowley-Matoka M, Dohan D, et al. Want to be the one saying ‘we should just let him die’: intrapersonal tensions experienced by surrogate decision makers in the ICU. J Gen Intern Med. 2012;27(12):1657–1665. doi:10.1007/s11606-012-2129-y
   PubMed Web of Science ®Google Scholar
• Mast L. Against autonomy: how proposed solutions to the problems of living wills forgot its underlying principle. Bioethics. 2020;34(3):264–271. doi:10.1111/bioe.12665
   PubMed Web of Science ®Google Scholar
• Craig DP, Ray R, Harvey D, Shircore M. Factors which influence hospital doctors’ advance care plan adherence. J Pain Symptom Manage. 2020;59(5):1109–1126. doi:10.1016/j.jpainsymman.2019.12.008
   Web of Science ®Google Scholar
• Sinclair C, Nolte L, White BP, Detering K. Advance care planning in Australia during the COVID‐19 outbreak: now more important than ever. Intern Med J. 2020;50(8):918–923. doi:10.1111/imj.14937
   PubMed Web of Science ®Google Scholar
• Funk DC, Moss AH, Speis A. How COVID-19 changed advance care planning: insights from the West Virginia center for end-of-life care. J Pain Symptom Manage. 2020;60(6):e5–e9. doi:10.1016/j.jpainsymman.2020.09.021
   PubMed Web of Science ®Google Scholar
• Craig DP, Ray R, Harvey D, Shircore M. Advance care plans and the potentially conflicting interests of bedside patient agents: a thematic analysis. J Multidiscip Healthc. 2021;14:2087. doi:10.2147/JMDH.S314664
   Web of Science ®Google Scholar
• Charmaz K. Constructing Grounded Theory. 2nd ed. London: Sage; 2014.
   Google Scholar
• Wong RE, Weiland TJ, Jelinek GA. Emergency clinicians’ attitudes and decisions in patient scenarios involving advance directives. Emerg Med J. 2012;29(9):720–724. doi:10.1136/emermed-2011-200287
   PubMed Web of Science ®Google Scholar
• National Health and Medical Research Council. Australian Code for Responsible Conduct of Research; 2018. Available from https://www.nhmrc.gov.au/about-us/publications/australian-code-responsible-conduct-research-2018. Accessed May 25, 2021.
   Google Scholar
• Howie, L. (2010). Narrative enquiry and health research. In: Liamputtong P, editor, Research methods in health foundations for evidence-based practice. South Melbourne: Oxford University Press. 2010:77–90.
   Google Scholar
• Queensland Government. My Care My Choices. Advance Care Planning; 2019. Available from https://metrosouth.health.qld.gov.au/acp/explained. Accessed May 1, 2019.
   Google Scholar
• Mackenzie C, Stoljar N. Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self. Oxford University Press; 2000.
   Google Scholar
• Richfield EW, Johnson MJ. Palliative care in Parkinson’s disease: review of needs assessment tools. Ann Palliat Med. 2019;9(Suppl 1):S6–S15. doi:10.21037/apm.2019.09.18
   Web of Science ®Google Scholar
• Browne B, Kupeli N, Moore KJ, Sampson EL, Davies N. Defining end of life in dementia: a systematic review. Palliat Med. 2021;02692163211025457. doi:10.1177/02692163211025457
   Web of Science ®Google Scholar
• Willmott L, White B, Tilse C, Wilson J, Purser K. Advance health directives: competing perceptions, intentions and use by patients and doctors in Queensland. QUT Law Rev. 2013;13:30. doi:10.5204/qutlr.v13i1.532
   Google Scholar
• Leder N, Schwarzkopf D, Reinhart K, Witte OW, Pfeifer R, Hartog CS. The validity of advance directives in acute situations - A survey of doctors’ and relatives’ perceptions from an intensive care unit. Dtsch Arztebl Int. 2015;112(43):723–729. doi:10.3238/arztebl.2015.0723
   Web of Science ®Google Scholar
• White B, Willmott L, Cartwright C, Parker M, Williams G, Davis J. Comparing doctors’ legal compliance across three Australian states for decisions whether to withhold or withdraw life-sustaining medical treatment: does different law lead to different decisions? BMC Palliat Care. 2017;16(1):63. doi:10.1186/s12904-017-0249-1
   PubMed Web of Science ®Google Scholar
• White B, Willmott L, Williams G, Cartwright C, Parker M. The role of law in decisions to withhold and withdraw life-sustaining treatment from adults who lack capacity: a cross-sectional study. J Med Ethics. 2017;43(5):327–333. doi:10.1136/medethics-2016-103543
   PubMed Web of Science ®Google Scholar
• Moore N, Detering KM, Low T, Nolte L, Fraser S, Sellars M. Doctors’ perspectives on adhering to advance care directives when making medical decisions for patients: an Australian interview study. BMJ Open. 2019;9(10):e032638. doi:10.1136/bmjopen-2019-032638
   PubMed Web of Science ®Google Scholar
• Billings JA, Krakauer EL. On patient autonomy and physician responsibility in end-of-life care. Arch Intern Med. 2011;171(9):849–853. doi:10.1001/archinternmed.2011.180
   PubMed Web of Science ®Google Scholar
• Shah SGS, Farrow A, Robinson I. The representation of healthcare end users’ perspectives by surrogates in healthcare decisions: a literature review. Scand J Caring Sci. 2009;23(4):809–819. doi:10.1111/j.1471-6712.2008.00674.x
   PubMed Web of Science ®Google Scholar
• Pope TM. Legal fundamentals of surrogate decision making. Chest. 2012;141(4):1074–1081. doi:10.1378/chest.11-2336
   PubMed Web of Science ®Google Scholar
• Kwak J, Wallendal MS, Fritsch T, Leo G, Hyde T. Advance care planning and proxy decision making for patients with advanced Parkinson disease. South Med J. 2014;107(3):178–185. doi:10.1097/SMJ.0000000000000075
   PubMed Web of Science ®Google Scholar
• Fritch J, Petronio S, Helft PR, Torke A. Making decisions for hospitalized older adults: ethical factors considered by family surrogates. J Clin Ethics. 2013;24(2):125.
   Google Scholar
• Frost DW, Cook DJ, Heyland DK, Fowler RA. Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: a systematic review. Crit Care Med. 2011;39(5):1174–1189. doi:10.1097/CCM.0b013e31820eacf2
   Web of Science ®Google Scholar
• Bullock K. The Influence of Culture on End-of-Life Decision Making. J Soc Work End Life Palliat Care. 2011;7(1):83–98. doi:10.1080/15524256.2011.548048
   PubMedGoogle Scholar
• Queensland Clinical Senate, Health Consumers Queensland. Charter for care of adult patients at the end of life. Queensland Government. Available from https://clinicalexcellence.qld.gov.au/priority-areas/clinician-engagement/queensland-clinical-senate/publications. Accessed January 16, 2021.
   Google Scholar
• Queensland Government. Advance Care Planning Clinical Guidelines; 2018. Available from https://clinicalexcellence.qld.gov.au/priority-areas/service-improvement/improving-care-end-life-queensland/care-plans-clinical-tools. Accessed January 18, 2021.
   Google Scholar
• Queensland Government. Advance Care Planning; 2016. Available from https://clinicalexcellence.qld.gov.au/priority-areas/service-improvement/improving-care-end-life-queensland/advance-care-planning. Accessed May 11, 2019.
   Google Scholar
• Royal Australian College of General Practitioners. Position Statement: advance care planning should be incorporated into routine general practice; 2012. Available from https://www.racgp.org.au/advocacy/position-statements/view-all-position-statements/clinical-and-practice-management/advance-care-planning. Accessed January 25, 2020.
   Google Scholar
• Gutierrez KM. Advance directives in an intensive care unit: experiences and recommendations of critical care nurses and physicians. Crit Care Nurs Q. 2012;35(4):396–409. doi:10.1097/CNQ.0b013e318268fe35
   Google Scholar