Danish respiratory society position paper: palliative care in patients with chronic progressive non-malignant lung diseases

Kristoffer Marsaa, Svend Gundestrup, Jens-Ulrik Jensen, Peter Lange, Anders Lokke, Nassim Bazeghi Roberts, Saher Burhan Shaker, Anita Rath Sorensen, Ingrid Louise Titlestad, Laura Hohwu Thomsen, Ulla Moller Weinreich, Elisabeth Bendstrup, Torgny Wilcke

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Abstract

Background: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.Methods: 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.Results: The Danish version of the position paper was finally submitted for review and accepted by all members of DRS.Conclusion: 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.
Original languageEnglish
Article number1530029
JournalEuropean Clinical Respiratory Journal
Volume5
Issue number1
Pages (from-to)1-10
ISSN2001-8525
DOIs
Publication statusPublished - 16. Oct 2018

Keywords

  • Palliation
  • non-malignant
  • lung disease
  • end-of-life
  • terminal lung failure
  • chronic lung failure

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