Center for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany.
Department of Respiratory Diseases and Allergy, Aarhus University Hospital, Aarhus, Denmark.
Lancet Respir Med. 2017 Dec;5(12):968-980. doi: 10.1016/S2213-2600(17)30383-1. Epub 2017 Oct 13.
Progressive fibrotic interstitial lung diseases (ILDs) are characterised by major reductions in quality of life and survival and have similarities to certain malignancies. However, palliative care expertise is conspicuously inaccessible to many patients with ILD. Unmet patient and caregiver needs include effective pharmacological and psychosocial interventions to improve quality of life throughout the disease course, sensitive advanced care planning, and timely patient-centred end-of-life care. The incorrect perception that palliative care is synonymous with end-of-life care, with no role earlier in the course of ILD, has created a culture of neglect. Interventions that aim to improve life expectancy are often prioritised without rigorous assessment of the individual's health and psychosocial needs, thereby inadvertently reducing quality of life. As in malignant disorders, radical interventions to slow disease progression and palliative measures to improve quality of life should both be prioritised. Efficient patient-centred models of palliative care must be validated, taking into account religious and cultural differences, as well as variability of resources. Effective implementation of palliative care for ILD will require multidisciplinary participation from clinicians, specialist nurses, psychologists, social workers, and, in some countries, non-governmental faith and community-based organisations with access to palliative care expertise.
进展性纤维化间质性肺疾病(ILDs)的特点是生活质量和存活率显著降低,并且与某些恶性肿瘤有相似之处。然而,许多ILD 患者明显无法获得姑息治疗专业知识。未满足的患者和护理人员的需求包括有效的药物和心理社会干预措施,以在整个疾病过程中改善生活质量,进行敏感的高级护理计划,并及时进行以患者为中心的临终关怀。姑息治疗等同于临终关怀,在ILD 病程早期没有作用的错误观念导致了姑息治疗的忽视。旨在延长预期寿命的干预措施通常被优先考虑,而没有严格评估个人的健康和心理社会需求,从而无意中降低了生活质量。与恶性疾病一样,减缓疾病进展的激进干预措施和提高生活质量的姑息措施都应优先考虑。必须根据宗教和文化差异以及资源的可变性,对以患者为中心的姑息治疗模型进行有效的验证。ILD 的姑息治疗的有效实施将需要临床医生、专科护士、心理学家、社会工作者,以及在某些国家中,具有姑息治疗专业知识的非政府信仰和社区组织的多学科参与。