Porteri Corinna, Ienco Giulia, Turla Edda Mariaelisa, Piccinni Mariassunta, Pasqualetti Patrizio
Bioethics Unit, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Via Pilastroni, 4, Brescia, 25125, Italy.
Department of Political Science, Law and International Studies - SPGI, Università di Padova, Padua, Italy.
BMC Med Ethics. 2024 Dec 20;25(1):145. doi: 10.1186/s12910-024-01150-9.
There is wide convergence in the positions of scientific societies, patient associations and public bodies regarding the advisability of advance care planning (ACP) in cognitive disorders and dementia to respect the specificity of the person. Nevertheless, planning in advance for dementia represents a unique challenge. In Italy, law n. 219/2017 introduced ACP for the first time at the regulatory level, under the name of shared care planning (SCP). Few surveys on the law implementation have been conducted in Italy, but none have specifically involved patients with cognitive disorders and their caregivers. To contribute filling the gap, we conducted a survey among patients and caregivers attending a memory clinic to investigate what their knowledge, attitudes and experiences were regarding SCP.
We developed two semi-structured questionnaires for patients and caregivers organized into the following sections: (i) knowledge of the law; (ii) general attitude on SCP; (iii) experience about SCP; (iv) attitude about realizing a SCP; (v) advance directives. Participation in the survey was offered to consecutive patients discharged from the memory clinic during 26 target weeks and to their caregivers. The interviews were conducted on the occasion of the last scheduled visit to the facility; telephone interview was also provided. Information was collected by means of an online platform (Google Forms). Descriptive and basic inferential analysis was performed by means of SPSS (IBM). The analysis of the open-ended questions was also conducted with the support of the Voyant Tools.
Sixty-six patient and 65 caregiver interviews were collected. No participant reported that a doctor has ever talked to the patient about SCP. The large majority of patients (85%) and almost all caregivers (95%) agree/absolutely agree with the opportunity for patients to realize SCP. Almost all participants agree/absolutely agree with the usefulness for the patients of indicating a trusted person to act on their behalf (91% patients and 95% caregivers). Forty-three (65%) patients and 48 (74%) caregivers believe it would be good to start SCP with the patient when the time is right. Among them, 20 caregivers and 12 patients believe it is already time to talk about SCP.
Study results showed patients' and caregivers' interest in the SCP process and, at the same time, their mixed attitude when SCP is referred specifically to themselves or their loved ones. This indicates the need to introduce the discourse on SCP into clinical practice while remaining very sensitive to the individual patient's pace and wishes, including his/her possible refusal to talk about SCP.
科学协会、患者协会和公共机构在认知障碍和痴呆症的预先护理计划（ACP）对于尊重个人特殊性的可取性方面立场广泛趋同。然而，为痴呆症提前做规划是一项独特的挑战。在意大利，第219/2017号法律首次在监管层面引入了ACP，名为共享护理计划（SCP）。意大利很少有关于该法律实施情况的调查，且没有一项调查专门涉及认知障碍患者及其护理人员。为填补这一空白，我们对前往记忆诊所就诊的患者及其护理人员进行了一项调查，以了解他们对SCP的知识、态度和经历。
我们为患者和护理人员编制了两份半结构化问卷，分为以下几个部分：（i）法律知识；（ii）对SCP的总体态度；（iii）SCP的经历；（iv）对制定SCP的态度；（v）预先指令。在26个目标周内，向记忆诊所连续出院的患者及其护理人员提供参与调查的机会。访谈在患者最后一次预定的就诊时进行；也提供电话访谈。信息通过在线平台（谷歌表单）收集。描述性和基本推断性分析通过SPSS（IBM）进行。开放式问题的分析也在Voyant Tools的支持下进行。
共收集了66份患者访谈和65份护理人员访谈。没有参与者报告医生曾与患者谈论过SCP。绝大多数患者（85%）和几乎所有护理人员（95%）同意/完全同意患者有机会制定SCP。几乎所有参与者都同意/完全同意为患者指定一个值得信赖的人代表其行事的有用性（91%的患者和95%的护理人员）。43名（65%）患者和48名（74%）护理人员认为在时机合适时与患者开始SCP会很好。其中，20名护理人员和12名患者认为现在已经是谈论SCP的时候了。
研究结果显示了患者和护理人员对SCP过程的兴趣，同时，当SCP具体涉及他们自己或他们所爱的人时，他们的态度不一。这表明有必要将关于SCP的讨论引入临床实践，同时对个体患者的节奏和意愿保持高度敏感，包括其可能拒绝谈论SCP。
