Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology and Department of Medicine, University of Sydney, Sydney, NSW, Australia.
Level 6 - North, Chris O'Brien Lifehouse, 119-143 Missenden Road, Camperdown, NSW, 2050, Australia.
Support Care Cancer. 2018 Feb;26(2):565-574. doi: 10.1007/s00520-017-3867-5. Epub 2017 Aug 28.
Patients' 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.
The 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.
Qualitative 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.
We 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.
The 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.
鼓励患者参与预先医疗照护计划（ACP），以增强其自主权。然而，对于什么是自主以及社会和结构性因素如何影响癌症患者行使自主权的能力，存在争议，并且对此的理解有限。
本研究旨在探讨肿瘤医生和姑息治疗医生对患者自主性的理解，这种理解如何影响终末期生命（EOL）决策的报告实施，以及 ACP 在 EOL 护理中的作用。
在澳大利亚的肿瘤中心和姑息治疗单位，对顾问肿瘤医生（n=11）和姑息治疗医生（n=7）进行了定性半结构式访谈。
我们发现，医生通常将自主性概念化为免受干扰，但这种对自主性的理解与 EOL 决策中的临床实践之间存在严重脱节。我们研究中的临床医生优先考虑护理、关系和“善终”，而不是患者自主性，并且实际上不愿“放弃”他们的患者，任由他们在决策中完全不受干扰。医疗保健中的患者自主性是有界限的，因为虽然一般鼓励患者表达他们对护理的偏好，但关于护理质量和“合理性”的医疗规范、服务的可用性以及患者的家庭关系会增强或限制患者实现其偏好的能力。虽然对许多人来说，这种理论与实践之间的脱节并没有降低 ACP 的修辞吸引力；但对其他人来说，这破坏了 ACP 的完整性，以及它与护理的相关性。对一些人来说，ACP 与患者自主性几乎没有关系，而是具有许多其他伦理、实践和政治功能。
ACP 相关学术文献和政策文件中嵌入的关于患者自主性的伦理假设与临床护理的现实脱节。围绕“善终”的医疗规范和专业界限对护理的影响大于患者的偏好。因此，ACP 计划可能被医疗保健专业人员视为与护理无关，或者当作为鼓励“正确”死亡的专业工具使用时，可能会无意中限制患者的自主权。对 ACP 计划的单一关注，将患者自主性简化为“勾选框”练习，可能无法以任何有意义的方式增强 EOL 护理。
