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ImportancePatients' are encouraged to participate in advance care planning (ACP) in order to enhance their autonomy. However, controversy exists as to what it means to be autonomous and there is limited understanding of how social and structural factors may influence cancer patients' ability to exercise their autonomy.ObjectiveThe objective of this study is to explore oncologists' and palliative care physicians' understanding of patient autonomy, how this influences reported enactment of decision-making at the end of life (EOL), and the role of ACP in EOL care.Design and settingQualitative semi-structured interviews were conducted with consultant oncologists (n = 11) and palliative medicine doctors (n = 7) working in oncology centres and palliative care units across Australia.ResultsWe found that doctors generally conceptualized autonomy in terms of freedom from interference but that there was a profound disconnect between this understanding of autonomy and clinical practice in EOL decision-making. The clinicians in our study privileged care, relationships and a 'good death' above patient autonomy, and in practice were reluctant to 'abandon' their patients to total non-interference in decision-making. Patient autonomy in healthcare is bounded, as while patients were generally encouraged to express their preferences for care, medical norms about the quality and 'reasonableness' of care, the availability of services and the patients' family relationships act to enhance or limit patients' capacity to realize their preferences. While for many, this disconnect between theory and practice did not diminish the rhetorical appeal of ACP; for others, this undermined the integrity of ACP, as well as its relevance to care. For some, ACP had little to do with patient autonomy and served numerous other ethical, practical and political functions.ConclusionThe ethical assumptions regarding patient autonomy embedded in academic literature and policy documents relating to ACP are disconnected from the realities of clinical care. Medical norms and professional boundaries surrounding 'good deaths' have a greater influence on care than patient preference. ACP programs, therefore, may be rejected by healthcare professionals as irrelevant to care or may have the unintended consequence of limiting patient autonomy when used as a professional tool to encourage a 'right' way to die. A singular focus on bureaucratic ACP programs, which reduce patient autonomy to a 'tick box' exercise, may fail to enhance EOL care in any meaningful way.

Original publication

DOI

10.1007/s00520-017-3867-5

Type

Journal article

Journal

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

Publication Date

02/2018

Volume

26

Pages

565 - 574

Addresses

Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology and Department of Medicine, University of Sydney, Sydney, NSW, Australia. stephanie.johnson@sydney.edu.au.

Keywords

Humans, Palliative Care, Terminal Care, Personal Autonomy, Qualitative Research, Middle Aged, Physicians, Advance Care Planning, Male, Patient Preference, Oncologists