Knop Jannis, Dust Gloria, Kasdorf Alina, Schippel Nicolas, Rietz Christian, Strupp Julia, Voltz Raymond
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
Department of Educational Science, Faculty of Educational and Social Sciences, University of Education Heidelberg, Heidelberg, Germany.
Palliat Support Care. 2023 Apr;21(2):261-269. doi: 10.1017/S1478951522000165.
Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers.
This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process.
Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want.
Our findings suggest the necessity for greater awareness of patients' and their relatives' needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.
处于生命最后一年的患者及其亲属常常觉得，医疗保健系统现有的护理结构无法充分满足他们的个人需求和应对他们面临的挑战。本研究从失去亲人的护理人员的角度，分析了处于生命最后一年的患者在健康和社会护理方面未得到满足的需求，这些需求表现为未解决的问题和不必要的决策。
这项定性研究基于作为科隆生命最后一年研究（LYOL-C）一部分通过邮政调查收集的已故患者非正式护理人员的自由文本评论。通过定性内容分析，分多个步骤开发了一个包含主要类别和子类别的分类系统。
从240名失去亲人的护理人员那里收集了自由文本评论和人口统计数据。特别是在临终关怀和姑息治疗服务之外，研究参与者提到了以下未解决的问题：与医护人员沟通不畅、对非正式护理人员的专业支持不足、对患者的心理社会支持不够以及疼痛和其他症状管理不善。受访者经常表示，他们的亲人不得不在自己家以外的地方接受护理并离世，而这是亲人所不愿意的。
我们的研究结果表明，有必要在患者生命的最后一年更加关注患者及其亲属的需求。满足个人需求、将姑息治疗和临终关怀整合到急症医院和其他医疗保健结构中，以及识别处于生命最后一年的患者及其护理人员，有助于实现更有针对性的干预措施并优化护理。
