Marsaa Kristoffer, Gundestrup Svend, Jensen Jens-Ulrik, Lange Peter, Løkke Anders, Roberts Nassim Bazeghi, Shaker Saher Burhan, Sørensen Anita Rath, Titlestad Ingrid Louise, Thomsen Laura Hohwü, Weinreich Ulla Møller, Bendstrup Elisabeth, Wilcke Torgny
Palliative Unit, Herlev-Gentofte Hospital, University of Copenhagen, Copenhagen, Denmark.
Respiratory Research Unit, Department of Respiratory Medicine, Bispebjerg University Hospital, Copenhagen, Denmark.
Eur Clin Respir J. 2018 Oct 16;5(1):1530029. doi: 10.1080/20018525.2018.1530029. eCollection 2018.
Chronic non-malignant lung diseases such as chronic obstructive pulmonary disease (COPD) and interstitial lung diseases (ILD) result in reduced quality of life (QoL), a high symptom burden and reduced survival. Patients with chronic non-malignant lung disease often have limited access to palliative care. The symptom burden and the QoL of these patients resembles patients with cancer and the general palliative approach is similar. However, the disease trajectory is often slow and unpredictable, and the palliative effort must be built on accessibility, continuity and professional competences. The Danish Health Authority as well as the WHO recommends that there is access to palliative care for all patients with life-threatening diseases regardless of diagnosis. In 2011, the Danish Health Authority requested that the national medical societies would to formulate guidelines for palliation. In 2015, a group of members of the Danish Respiratory Society (DRS) was appointed for this purpose. It was composed of experienced ILD and COPD researchers as well as clinicians from different parts of Denmark. A literature review was made, a draft was prepared, and all recommendations were agreed upon unanimously. The Danish version of the position paper was finally submitted for review and accepted by all members of DRS. In this position paper we provide recommendations on the terminology of chronic and terminal lung failure, rehabilitation and palliative care, advanced care planning, informal caregivers and bereavement, symptom management, the imminently dying patient, and organization of palliative care for patients with chronic non-malignant lung diseases.
慢性非恶性肺部疾病，如慢性阻塞性肺疾病（COPD）和间质性肺疾病（ILD），会导致生活质量（QoL）下降、症状负担加重和生存期缩短。患有慢性非恶性肺部疾病的患者往往难以获得姑息治疗。这些患者的症状负担和生活质量与癌症患者相似，一般的姑息治疗方法也类似。然而，疾病发展轨迹通常缓慢且不可预测，姑息治疗必须基于可及性、连续性和专业能力。丹麦卫生当局以及世界卫生组织建议，所有患有危及生命疾病的患者，无论诊断如何，都应能够获得姑息治疗。2011年，丹麦卫生当局要求各国家医学协会制定姑息治疗指南。2015年，为此任命了一组丹麦呼吸学会（DRS）成员。该小组由经验丰富的ILD和COPD研究人员以及来自丹麦不同地区的临床医生组成。进行了文献综述，起草了一份草案，所有建议均获得一致通过。立场文件的丹麦语版本最终提交审核，并得到了DRS所有成员的认可。在本立场文件中，我们就慢性和终末期肺功能衰竭的术语、康复与姑息治疗、高级护理计划、非正式照护者与丧亲之痛、症状管理、濒死患者以及慢性非恶性肺部疾病患者的姑息治疗组织等方面提供建议。
