Fried Terri R, Bradley Elizabeth H
Clinical Epidemiology Unit, VA Connecticut Healthcare System, West Haven, Connecticut 06516, USA.
J Palliat Med. 2003 Apr;6(2):237-44. doi: 10.1089/109662103764978489.
Several methods exist to elicit end-of-life treatment preferences. However, little work has been done to elicit from patients themselves the aspects of treatment decision-making most important to them when making end-of-life treatment decisions.
Participants consisted of 23 patients, 60 years of age and older with a primary diagnosis of congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or cancer identified by their physicians as having a limited life expectancy. They took part in in-depth semistructured interviews and focus groups in which they were asked to discuss how they had made previous decisions about the treatment of their illness and/or would think about making future decisions. Transcripts were analyzed qualitatively using the constant comparative method.
There were three major influences on treatment preferences: treatment burden, treatment outcome, and the likelihood of the outcome. Treatment burden was bearable if the outcome of treatment was desirable, but participants were less willing to endure the burden for more marginal outcomes. Certain outcomes were so unacceptable that they determined preference regardless of burden. However, some participants revealed that their willingness to tolerate these adverse outcomes may increase as their illness progresses. Although participants generally believed that physicians know with certainty the outcomes of treatment, most understood the concept of uncertainty, and the likelihood of a given outcome influenced their preferences.
A patient-centered approach to advance care planning needs to incorporate a consideration of both treatment burdens and treatment outcomes, including the likelihood of these outcomes. Patients' valuations of these outcomes may change over time.
有多种方法可引出临终治疗偏好。然而，在让患者自己说出在做出临终治疗决策时对他们而言最重要的治疗决策方面，所做的工作很少。
参与者包括23名年龄在60岁及以上的患者，他们的主要诊断为充血性心力衰竭（CHF）、慢性阻塞性肺疾病（COPD）或被医生认定预期寿命有限的癌症。他们参与了深入的半结构化访谈和焦点小组讨论，在讨论中他们被要求谈论自己此前如何做出关于疾病治疗的决策以及/或者会如何考虑做出未来的决策。使用持续比较法对访谈记录进行定性分析。
对治疗偏好有三大影响因素：治疗负担、治疗结果以及结果的可能性。如果治疗结果理想，治疗负担是可以承受的，但参与者不太愿意为更微不足道的结果承受负担。某些结果是如此不可接受，以至于无论负担如何都决定了偏好。然而，一些参与者表示，随着病情进展，他们容忍这些不良结果的意愿可能会增加。虽然参与者普遍认为医生确切知道治疗结果，但大多数人理解不确定性的概念，特定结果的可能性会影响他们的偏好。
以患者为中心的预立医疗计划方法需要同时考虑治疗负担和治疗结果，包括这些结果的可能性。患者对这些结果的评估可能会随时间而改变。
