Hospiz im Park, Hospital for Palliative Care, Arlesheim, Switzerland.
Institute for History of Medicine and Science Studies, University of Lübeck, Lübeck, Germany.
PLoS One. 2019 Jan 17;14(1):e0210784. doi: 10.1371/journal.pone.0210784. eCollection 2019.
The motivations that lead to wishes to die (WTD) in palliative care patients with cancer are relatively well studied. But little is known about WTD in other pathologies and the relation between subjective understandings of dying trajectories and a WTD. We investigated the WTD of palliative patients in four different dying trajectories: neurological diseases, organ failure, frailty due to age, and cancer.
62 palliative cancer (n = 30) and non-cancer (n = 32) patients (10 neurological disease; 11 organ failure; 11 frailty), their families and health professionals in different palliative care settings (248 interviews).
Qualitative semi-structured interviews. Data analysis through Interpretive Phenomenological Analysis and Grounded Theory.
In addition to personal motivations, we found that people dealing with similar trajectories were often confronted with similar questions and concerns due to similar challenges. For four trajectories we show typical patterns, similarities and differences that should be considered when talking with patients about their WTD. These illness-related considerations do not explain the WTD completely, but give important information on the challenges for particular patient groups that might experience a WTD. In all patient groups, there were clear moments that triggered a WTD: for neurological patients it was experiencing breathlessness, high-dependency care, or when considering tube feeding or respiratory support; for persons with organ failure it was an acute burdensome crisis; for patients with cancer after the initial diagnosis, it was the first relapse or the move into advanced palliative care; for elderly frail persons it was the move into care facilities, or the loss of important relationships or capabilities. The feeling of being a burden to others was reported in all patient groups.
WTD can be triggered within disease trajectories by specific conditions and transitional points that affect agency and self-understanding. A better understanding of the concerns and challenges of a particular dying trajectory as well as its characteristic trigger points can facilitate early and comprehensive communication about patients' WTD, and the underlying motivations and protective factors.
在癌症姑息治疗患者中，导致死亡意愿（WTD）的动机已经得到了较为充分的研究。但是，对于其他疾病和 WTD 与对临终轨迹的主观理解之间的关系，我们知之甚少。我们研究了在四种不同临终轨迹中，姑息治疗患者的 WTD：神经疾病、器官衰竭、因年龄导致的虚弱以及癌症。
62 名姑息治疗癌症（n=30）和非癌症（n=32）患者（10 名神经疾病；11 名器官衰竭；11 名因年龄导致的虚弱），他们的家属和不同姑息治疗环境中的卫生专业人员（248 次访谈）。
定性半结构式访谈。通过解释现象学分析和扎根理论进行数据分析。
除了个人动机外，我们还发现，处理类似轨迹的人经常会因为类似的挑战而面临类似的问题和担忧。对于四种轨迹，我们展示了典型的模式、相似性和差异性，这些都应该在与患者讨论他们的 WTD 时加以考虑。这些与疾病相关的考虑并不能完全解释 WTD，但为特定患者群体面临的挑战提供了重要信息，这些患者群体可能会经历 WTD。在所有患者群体中，都有明确的时刻会引发 WTD：对于神经疾病患者来说，是呼吸困难、高度依赖护理，或考虑进行管饲或呼吸支持；对于器官衰竭患者来说，是急性负担过重的危机；对于癌症患者来说，是最初的复发或进入晚期姑息治疗；对于年老体弱的患者来说，是进入护理机构，或失去重要的人际关系或能力。所有患者群体都报告了自己成为他人负担的感觉。
在疾病轨迹中，WTD 可以由特定的条件和过渡点触发，这些条件和过渡点会影响自主性和自我理解。更好地理解特定临终轨迹的关注点和挑战，以及其特征性的触发点，可以促进早期和全面的沟通，了解患者的 WTD、潜在动机和保护因素。
