Sawicki Gregory S, Dill Edward J, Asher Daniel, Sellers Deborah E, Robinson Walter M
Division of Respiratory Diseases, Children's Hospital, Boston, MA 02115, USA.
J Palliat Med. 2008 Oct;11(8):1135-41. doi: 10.1089/jpm.2008.0051.
Because many patients with cystic fibrosis (CF) continue to survive into adulthood, discussion of end-of-life care decisions between clinicians and patients becomes a crucial part of CF adult care. Advance care planning (ACP) promotes alignment of patient care at the end of life with an individual's goals, however minimal research exists on ACP in CF.
We surveyed adults enrolled in the Project on Adult Care in Cystic Fibrosis (PAC-CF). We assessed experiences with ACP processes and communication and sought to identify factors associated with completion of an advance directive.
The mean age of respondents (n = 234) was 34 years and the mean forced expiratory volume in 1 second (FEV(1)) was 64% predicted. Seventy-four percent reported that they had spoken to someone, generally a family member, about the care they would want if they became too ill to make decisions for themselves. However, only 30% reported completing an advance directive. Although 79% reported feeling comfortable talking to their clinician about ACP, only 28% said that their CF clinicians have asked about ACP. Having specific wishes about treatment decisions (odds ratio [OR] 7.8, 95% confidence interval [CI] 1.9-32.1) and reporting that a clinician had discussed ACP (OR 4.4, 95% CI 1.5-12.6) were significantly associated with reporting the completion of an advance directive.
Though the majority of adults with CF report thinking about and communicating with family about advance care wishes, only a minority report completing an advance directive. Few adults with CF report being asked about ACP by their clinicians. Formulating specific wishes and discussing ACP with a clinician are strongly associated with completing an advance directive. Efforts to improve clinician communication with CF adults around ACP are needed to ensure that discussion of advance directives becomes an integral component of adult CF care.
由于许多囊性纤维化（CF）患者能够存活至成年，临床医生与患者之间关于临终护理决策的讨论成为CF成人护理的关键部分。预先护理计划（ACP）有助于使临终患者护理与个人目标保持一致，然而关于CF患者的ACP研究极少。
我们对参与囊性纤维化成人护理项目（PAC-CF）的成年人进行了调查。我们评估了ACP流程和沟通方面的经历，并试图确定与完成预先指示相关的因素。
受访者（n = 234）的平均年龄为34岁，1秒用力呼气量（FEV₁）平均为预测值的64%。74%的受访者表示他们曾与他人（通常是家庭成员）谈论过如果自己病情过重无法自行做决定时希望接受的护理。然而，只有30%的受访者表示完成了预先指示。尽管79%的受访者表示与临床医生谈论ACP感到自在，但只有28%的受访者表示他们的CF临床医生询问过ACP。对治疗决策有明确的意愿（优势比[OR] 7.8，95%置信区间[CI] 1.9 - 32.1）以及表示临床医生曾讨论过ACP（OR 4.4，95% CI 1.5 - 12.6）与完成预先指示显著相关。
尽管大多数成年CF患者表示思考过并与家人交流过预先护理意愿，但只有少数人表示完成了预先指示。很少有成年CF患者表示临床医生询问过他们的ACP。制定明确的意愿并与临床医生讨论ACP与完成预先指示密切相关。需要努力改善CF成年患者与临床医生围绕ACP的沟通，以确保预先指示的讨论成为成年CF护理的一个组成部分。
