School of Psychology, University of Plymouth, Plymouth, UK.
Department of Psychological Sciences, University of Liverpool, Liverpool, UK.
Health Expect. 2022 Aug;25(4):1498-1507. doi: 10.1111/hex.13490. Epub 2022 Apr 26.
Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision-making from conceptualizations of a 'well-considered' decision.
UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of 'well-considered' decision-making, where 'well-considered' decisions involve consideration of all likely outcomes.
Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty.
While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as 'well-considered'. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome.
This paper is a direct response to a patient-identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants' ideas drove the analysis and shaped the interviews to come.
技术进步使得癌症预后越来越准确，但往往无法改变。然而，对有限预期寿命的可靠预测可能会引起心理困扰。人们应该仔细考虑预后预测的建议，但人们如何以及为何决定进行预后预测知之甚少。本研究以葡萄膜黑色素瘤（UM）患者为例，旨在确定：（i）UM 患者如何以及为何决定接受预后预测；（ii）他们的决策与“深思熟虑”决策的概念在多大程度上一致和存在分歧。
UM 为阐明预后预测的临床和伦理观点提供了范例，因为预后预测是可靠的，但预后大多无法改善。我们使用定性方法研究了 20 名 UM 患者如何以及为何选择预后预测。我们将研究结果与“深思熟虑”决策的模板进行了比较，其中“深思熟虑”的决策涉及考虑所有可能的结果。
参与者希望进行预后预测以减少对不确定预期寿命的未来担忧。他们在做出决定时会自然而然地希望有一个好的预后，但在很大程度上没有考虑到预后不佳的 50%可能性。当被追问时，他们认为一个糟糕的结果至少带来了确定性。
尽管尊重参与者的决策是其意愿的有效表达，但我们担心他们没有明确考虑预后不佳的现实可能性，以及这将如何影响他们。因此，很难将他们的决策视为“深思熟虑”。我们建议使用非指导性偏好探索技术帮助人们考虑预后不佳的可能性。
本文直接回应了治疗和对话中出现的、由患者确定和定义的问题。研究得到了患者参与者的回应的启发，因为我们使用访谈中的材料动态地形成了访谈指南。因此，参与者的想法推动了分析，并形成了后续的访谈。
