BACKGROUND Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. The existing literature shows problems in the organizational structure of this care, e.g., lack of clear care pathways. Furthermore, negative attitudes of healthcare professionals (HCPs) and stigmatization surrounding SUD, and patients' care-avoidance and non-disclosure of substance use are hindering factors in providing timely and person-centered PC. Furthermore, the experiences and needs of patients and proxies themselves are unknown. Therefore, this study aims to explore which problems and needs patients with SUD and multiple problems, and their proxies, experience in a PC phase. METHODS Data-collection of this qualitative study consisted of semi-structured interviews with patients with SUD and multiple problems in a PC phase, and their proxies, about their experiences in PC and their well-being. Interviews were inductively analyzed. RESULTS Nine patients and three proxies were included. Six patients suffered from COPD, one patient from cirrhosis of the liver and two patients from both. Seven patients stayed in a nursing home and two had a room in either a social care service (hostel) or an assisted living home where medical care was provided. Five themes were identified: 1) healthcare delivery (including HCPs behaviour and values); 2) end-of-life (EOL) preferences (mostly concerning only the individual patient and the 'here-and-the-now'); 3) multidimensional problems; 4) coping (active and passive) and; 5) closed communication. Proxies' experiences with healthcare differed. Emotionally, they were all burdened by their histories with the patients. CONCLUSIONS This study shows that talking about and anticipating on PC with this patient-group appears hard due to patients' closed and avoiding communication. Furthermore, some of patients' EOL-preferences and needs, and coping-strategies, seem to differ from the more generally-accepted ideas and practices. Therefore, educating HCPs in communicating with this patient-group, is needed.

中文翻译：

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对物质使用障碍和多重问题患者的姑息治疗：对患者和代理人经历的定性研究。

背景技术对于患有物质使用障碍（SUD）和多种问题的人的姑息治疗（PC）的系统研究很少。现有文献表明这种护理的组织结构存在问题，例如缺乏明确的护理途径。此外，医护人员（HCP）的消极态度和对SUD的污名化，以及患者的避免护理和不透露药物使用情况，都是阻碍及时提供以人为本的PC的因素。此外，患者和代理人本身的经验和需求是未知的。因此，本研究旨在探讨PC阶段有哪些问题和需要SUD和多个问题的患者及其代理。方法该定性研究的数据收集包括对SUD和PC期多个问题的患者进行半结构化访谈，以及他们关于PC经历和幸福感的代理。对访谈进行归纳分析。结果纳入9例患者和3个代理。有6例患有COPD的患者，1例患有肝硬化的患者和2例均患有肝硬化的患者。七名患者住在疗养院，两名患者在社会护理服务（旅馆）或提供医疗服务的辅助生活之家有一个房间。确定了五个主题：1）医疗保健的提供（包括HCP的行为和价值观）；2）生命终止（EOL）偏好（主要仅针对个体患者和“此时此地”）；3）多维问题；4）应对（主动和被动）；5）封闭沟通。代理在医疗保健方面的经验有所不同。从情感上讲，他们都对患者的病史感到负担。结论本研究表明，由于患者的封闭和避免沟通，在与该患者组讨论和期待PC上看起来很困难。此外，一些患者的EOL偏好和需求以及应对策略似乎与更普遍接受的想法和实践有所不同。因此，需要教育HCP与该患者群体的交流。此外，一些患者的EOL偏好和需求以及应对策略似乎与更普遍接受的想法和实践有所不同。因此，需要教育HCP与该患者群体的交流。此外，某些患者的EOL偏好和需求以及应对策略似乎与更普遍接受的想法和实践有所不同。因此，需要教育HCP与该患者群体的交流。