Department of Public and Occupational Health, EMGO Institute for Health and care research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands.
Department of Medical Humanities, EMGO Institute for Health and care research, VU University Medical Center, Amsterdam, The Netherlands.
PLoS One. 2014 Jun 25;9(6):e100435. doi: 10.1371/journal.pone.0100435. eCollection 2014.
Patients are often encouraged to participate in treatment decision-making. Most studies on this subject focus on choosing between different curative treatment types. In the last phase of life treatment decisions differ as they often put more emphasis on weighing quantity against quality of life, such as whether or not to start treatment aimed at life prolongation but with the possibility of side effects. This study aimed to obtain insight into cancer patients' preferences and the reasons for patients' preferred role in treatment decision-making at the end of life.
28 advanced cancer patients were included at the start of their first line treatment. In-depth interviews were held prior to upcoming treatment decisions whether or not to start a life prolonging treatment. The Control Preference Scale was used to start discussing the extent and type of influence patients wanted to have concerning upcoming treatment decision-making. Interviews were audio taped and transcribed.
All patients wanted their physician to participate in the treatment decision-making process. The extent to which patients themselves preferred to participate seemed to depend on how patients saw their own role or assessed their own capabilities for participating in treatment decision-making. Patients foresaw a shift in the preferred level of participation to a more active role depending in the later phase of illness when life prolongation would become more limited and quality of life would become more important.
Patients vary in how much involvement they would like to have in upcoming treatment decision-making. Individual patients' preferences may change in the course of the illness, with a shift to more active participation in the later phases. Communication about patients' expectations, wishes and preferences for participation in upcoming treatment decisions is of great importance. An approach in which these topics are openly discussed would be beneficial.
通常鼓励患者参与治疗决策。大多数关于这个主题的研究都集中在选择不同的治疗类型上。在生命的最后阶段，治疗决策有所不同，因为它们更强调权衡生活质量和数量，例如是否开始旨在延长生命但可能有副作用的治疗。本研究旨在了解癌症患者在生命末期对治疗决策的偏好以及患者对治疗决策中 preferred role 的原因。
在开始一线治疗时，纳入了 28 名晚期癌症患者。在是否开始延长生命的治疗之前，进行了深入的访谈。使用控制偏好量表开始讨论患者希望在即将到来的治疗决策中发挥多大程度和类型的影响。采访进行了录音和转录。
所有患者都希望医生参与治疗决策过程。患者自己 preferred role 似乎取决于患者如何看待自己的角色或评估自己参与治疗决策的能力。患者预计会根据疾病的后期阶段，即生命延长变得更加有限和生活质量变得更加重要，将 preferred level of participation 转移到更积极的角色。
患者在即将到来的治疗决策中参与程度存在差异。随着疾病的发展，个别患者的偏好可能会发生变化，在后期阶段更积极地参与。关于患者对参与即将到来的治疗决策的期望、愿望和偏好的沟通非常重要。一种公开讨论这些话题的方法将是有益的。
