Murray Scott A, Kendall Marilyn, Grant Elizabeth, Boyd Kirsty, Barclay Stephen, Sheikh Aziz
St. Columba's Hospice, and Primary Palliative Care Research Group, Division of Community Health Sciences: General Practice Section, University of Edinburgh, 20 West Richmond Street, Edinburgh, UK.
J Pain Symptom Manage. 2007 Oct;34(4):393-402. doi: 10.1016/j.jpainsymman.2006.12.009. Epub 2007 Jul 5.
Typical trajectories of physical decline have been described for people with end-stage disease. It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. We sought to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses. The subjects were 48 patients with advanced lung cancer (n=24) and heart failure (n=24) who gave a total of 112 in-depth interviews. Data were analyzed within individual case studies and then cross-sectionally according to the stage of physical illness. Characteristic social, psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the social trajectory mirrored physical decline, while psychological and spiritual well-being decreased together at four key transitions: diagnosis, discharge after treatment, disease progression, and the terminal stage. In advanced heart failure, social and psychological decline both tended to track the physical decline, while spiritual distress exhibited background fluctuations. Holistic end-of-life care needs to encompass all these dimensions. An appreciation of common patterns of social, psychological, and spiritual well-being may assist clinicians as they discuss the likely course of events with patients and carers and try to minimize distress as the disease progresses.
对于终末期疾病患者，已有关于身体机能衰退典型轨迹的描述。社会、心理和精神层面的痛苦可能也会遵循特定模式。我们试图通过综合两项纵向、定性、深入访谈研究的数据，来识别和比较终末期疾病患者在生命最后一年中心理、社会和精神需求的变化，这两项研究调查了晚期疾病患者的经历和需求。研究对象为48例晚期肺癌患者（n = 24）和心力衰竭患者（n = 24），他们总共接受了112次深入访谈。在个案研究中对数据进行分析，然后根据身体疾病阶段进行横断面分析。可以看出社会、心理和精神层面临终阶段的典型轨迹。在肺癌患者中，社会轨迹反映了身体机能衰退，而心理和精神幸福感在四个关键转变阶段同时下降：诊断、治疗后出院、疾病进展和终末期。在晚期心力衰竭患者中，社会和心理衰退都倾向于与身体衰退同步，而精神痛苦则呈现出背景波动。全面的临终关怀需要涵盖所有这些方面。了解社会、心理和精神幸福感的常见模式，可能有助于临床医生与患者及护理人员讨论可能的病程，并在疾病进展过程中尽量减少痛苦。
