Kendall Marilyn, Carduff Emma, Lloyd Anna, Kimbell Barbara, Cavers Debbie, Buckingham Susan, Boyd Kirsty, Grant Liz, Worth Allison, Pinnock Hilary, Sheikh Aziz, Murray Scott A
Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom; Allergy and Respiratory Research Group, Centre for Population Health Sciences, The Usher Institute of Population Health Sciences & Informatics, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
J Pain Symptom Manage. 2015 Aug;50(2):216-24. doi: 10.1016/j.jpainsymman.2015.02.017. Epub 2015 Mar 28.
Quality care for people living with life-limiting illnesses is a global priority. A detailed understanding of the varied experiences of people living and dying with different conditions and their family and professional caregivers should help policymakers and clinicians design and deliver more appropriate and person-centered care.
To understand how patients with different advanced conditions and their family and professional caregivers perceive their deteriorating health and the services they need.
We used a narrative framework to synthesize eight methodologically comparable, longitudinal, and multiperspective interview studies. We compared the end-of-life experiences of people dying from cancer (lung, glioma, and colorectal cancer), organ failure (heart failure, chronic obstructive pulmonary disease, and liver failure), and physical frailty and those of their family and professional caregivers in socioeconomically and ethnically diverse populations in Scotland.
The data set comprised 828 in-depth interviews with 156 patients, 114 family caregivers, and 170 health professionals. Narratives about cancer typically had a clear beginning, middle, and an anticipated end. Cancer patients gave a well-rehearsed account of their illness, hoping for recovery alongside fear of dying. In contrast, people with organ failure and their family caregivers struggled to pinpoint when their illness began, or to speak openly about death, hoping instead to avoid further deterioration. Frail older people tended to be frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying.
These contrasting illness narratives affect and shape the experiences, thoughts, and fears of patients and their carers in the last months of life. Palliative care offered by generalists or specialists should be provided more flexibly and equitably, responding to the varied concerns and needs of people with different advanced conditions.
为患有危及生命疾病的人提供优质护理是全球的一项优先任务。详细了解患有不同疾病的患者及其家人和专业护理人员在生与死过程中的各种经历，应有助于政策制定者和临床医生设计并提供更合适的、以患者为中心的护理。
了解患有不同晚期疾病的患者及其家人和专业护理人员如何看待自身健康状况的恶化以及他们所需的服务。
我们采用了一种叙事框架，综合了八项方法上具有可比性、纵向的、多视角的访谈研究。我们比较了在苏格兰社会经济和种族多样化人群中，死于癌症（肺癌、神经胶质瘤和结直肠癌）、器官衰竭（心力衰竭、慢性阻塞性肺疾病和肝功能衰竭）以及身体虚弱的患者及其家人和专业护理人员的临终经历。
该数据集包括对156名患者、114名家庭护理人员和170名卫生专业人员的828次深入访谈。关于癌症的叙述通常有明确的开头、中间和预期的结尾。癌症患者对自己的病情讲述得很熟练，既希望康复又害怕死亡。相比之下，器官衰竭患者及其家庭护理人员难以确定疾病何时开始，也难以公开谈论死亡，而是希望避免病情进一步恶化。体弱的老年人往往因逐渐丧失独立性而感到沮丧，他们更害怕患痴呆症或住进养老院，而不是死亡。
这些截然不同的疾病叙述会影响并塑造患者及其护理人员在生命最后几个月的经历、思想和恐惧。应由通科医生或专科医生提供的姑息治疗应更加灵活和公平，以回应患有不同晚期疾病的人们的各种关切和需求。
