Health Education North East, Newcastle-upon-Tyne, UK.
Population Health Sciences Institute, Newcastle University, Newcastle-upon-Tyne, UK.
Palliat Med. 2023 Oct;37(9):1413-1423. doi: 10.1177/02692163231192130. Epub 2023 Sep 12.
Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions.
This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice.
A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England.
Three themes ('overlooked', 'disjointed care' and 'awareness and expertise') were identified. Patients with chronic obstructive pulmonary disease are a 'forgotten about' population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning.
Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care.
尽管家庭无创通气可延长慢性阻塞性肺疾病伴持续高碳酸血症患者的住院再入院时间和改善预后，但他们的长期预后仍然较差。在该人群中需要使用无创通气时，应启动预先护理计划，但仅有 50%的患者参与了此类讨论。
本研究旨在探讨慢性阻塞性肺疾病患者家庭无创通气患者预先护理计划的障碍和促进因素，并提出改善实践的建议。
采用横断面访谈研究，纳入 10 名在家中接受无创通气的慢性阻塞性肺疾病患者和 12 名来自英格兰东北部的东北辅助通气服务医疗保健专业人员。
确定了三个主题（“被忽视”、“脱节的护理”和“意识和专业知识”）。慢性阻塞性肺疾病患者是一个“被遗忘”的群体，这一情况因偏见和不可预测的疾病轨迹而加剧。将其视为一个独特且服务不足的群体可能会改善护理和预先护理计划。所有参与者都认识到缺乏护理连续性，包括服务之间有限的协作和沟通，这是预先护理计划的一个重大障碍。此外，对预先护理计划的原理和积极影响缺乏了解，加上在困难对话方面缺乏专业知识，也是预先护理计划的障碍。
患者和医疗保健专业人员强调需要进行个体化和持续的预先护理计划，特别是围绕预后和护理偏好。应由熟悉的临床医生发起讨论。服务之间的有效沟通、明确的协议和规范以及提高医疗保健专业人员的技能水平可能确保护理的连续性。
