Smith Tracy A, Disler Rebecca T, Jenkins Christine R, Ingham Jane M, Davidson Patricia M
1 St Vincent's Clinical School, Faculty of Medicine, UNSW Australia, Sydney, NSW, Australia.
2 Department of Respiratory & Sleep Medicine, Westmead Hospital, Wentworthville, NSW, Australia.
Palliat Med. 2017 Jun;31(6):566-574. doi: 10.1177/0269216316670286. Epub 2016 Oct 25.
Patients requiring non-invasive ventilation for acute-on-chronic respiratory failure due to chronic obstructive pulmonary disease or heart failure exacerbations may have a poor prognosis underscoring the importance of advance care planning.
We aimed to describe attitudes to, and experiences of, discussing the future among patients recently treated with non-invasive ventilation.
Qualitative research using thematic analysis.
Tertiary teaching hospital. Patients with acute hypercapnic respiratory failure requiring non-invasive ventilation.
Individuals recently treated with non-invasive ventilation describe feeling the future is beyond their control and instead controlled by their illness. Participants often recognised their poor prognosis but avoided discussing some difficult topics. The majority preferred not to undergo cardiopulmonary resuscitation but most had not discussed this with healthcare professionals. When participants voiced concerns about their future health to family members, they were met with polarised responses. Some encountered willingness for further discussion, while others met deflection, deterring further conversation. An overarching narrative of 'Looking through my illness to an uncertain but concerning future' unites these themes.
This study suggests opportunities and barriers for advance care planning in individuals with chronic disease. Patients' understanding of their prognosis and their attitudes to cardiopulmonary resuscitation suggests an opportunity for advance care planning. Structuring discussions around patients' preferences for care during future exacerbations may foster a sense of control over the future despite illness. The diversity of familial responses to patients' concerns about their future health has implications for advance care planning. These findings have the potential to improve care for patients with respiratory failure and suggest an important ongoing research agenda.
因慢性阻塞性肺疾病或心力衰竭加重而需要无创通气治疗急性慢性呼吸衰竭的患者预后可能较差，这凸显了预先护理计划的重要性。
我们旨在描述近期接受无创通气治疗的患者对讨论未来的态度和经历。
采用主题分析的定性研究。
三级教学医院。需要无创通气治疗的急性高碳酸血症呼吸衰竭患者。
近期接受无创通气治疗的个体表示感觉未来超出了他们的控制，而是由疾病控制。参与者通常认识到自己预后不良，但避免讨论一些困难的话题。大多数人宁愿不接受心肺复苏，但大多数人尚未与医护人员讨论过此事。当参与者向家人表达对未来健康的担忧时，他们得到的反应两极分化。一些人遇到了进一步讨论的意愿，而另一些人则遭到了回避，这阻碍了进一步的交谈。“透过疾病展望不确定但令人担忧的未来”这一总体叙述将这些主题联系在一起。
本研究揭示了慢性病患者预先护理计划的机遇和障碍。患者对自身预后的理解以及他们对心肺复苏的态度表明了预先护理计划的机遇。围绕患者在未来病情加重时对护理的偏好来组织讨论，可能会增强患者在患病情况下对未来的掌控感。家人对患者未来健康担忧的反应多样性对预先护理计划有影响。这些发现有可能改善对呼吸衰竭患者的护理，并表明了一个重要的持续研究议程。
