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

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.

KEYWORDS:

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

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Kristoffer Marsaa

Kristoffer Marsaa, MD, Head of section Senior consultant palliative unite Copenhagen University Hospital Herlev and Gentofte, Denmark. Specialist in pulmonary medicine with clinical and research focus in COPD, pulmonary fibrosis, Chronic care, and palliative care.

Svend Gundestrup

Svend Gundestrup, MD, Specialist Registrar at Department of Respiratory Diseases, Bispebjerg University Hospital, Denmark. He is a specialist in training in pulmonary diseases, and his main focus is COPD and non-malignant palliative medicine.

Jens-Ulrik Jensen

Jens-Ulrik Jensen, MD, PhD, is Research Associate Professor at University of Copenhagen and consultant, Head of Respiratory Medicine Section at Herlev-Gentofte Hospital. He is a respiratory medicine specialist. Main research Area is COPD and complicated respiratory infections.

Peter Lange

Peter Lange, MD, Dr Med Sciences, is consultant at Medical Department O at Herlev -Gentofte Hospital and professor at section of epidemiology, Department of Public Health, University of Copenhagen, Denmark. He is a specialist in respiratory medicine and his main research focus is COPD and asthma.

Anders Løkke

Anders Løkke, MD, is a consultant at The Department of Respiratory Diseases and Allergy, Aarhus University Hospital, Denmark. He is a specialist in pulmonary diseases, and his main research focus is COPD.

Nassim Bazeghi Roberts

Nassim Bazeghi Roberts MD, PhD, graduated medicin from Iran, got her PhD degree and specialty in pulmonary disease in Copenhagen Medical University, working as a consultant in Bispebjerg University Hospital. Her main interest of area is COPD.

Saher Burhan Shaker

Saher Shake, MD, PhD, is a consultant at the Department of Respiratory Diseases at Herlev-Gentofte Hospital, Copenhagen. He is a specialist i Respiratory Medicine and his main research interest is interstitial lung diseases.

Anita Rath Sørensen

Anita Rath Sørensen, MD, is a consultant at Department of Internal Medicine, Horsens Regional Hospital, Denmark. She is a specialist in pulmonary medicine and her main focus is in palliative medicine.

Ingrid Louise Titlestad

Ingrid Louise Titlestad, MD, PhD, Ass.Prof., is a consultant at Department of Respiratory Medicine, Odense University Hospital, Denmark. She is a specialist in pulmonary diseases, and her main research focus is lung function decline, biomarkers in COPD and non-invasive ventilation.

Laura Hohwü Thomsen

Laura Hohwü Thomsen, MD, PhD, is a consultant at Department of Respiratory Diseases and Palliative Care, Hvidovre University Hospital, Denmark. She is a specialist in pulmonary diseases, and her main research focus is on lung function and imaging as well as palliative care in patients with lung diseases.

Ulla Møller Weinreich

Ulla Møller Weinreich, MD, PhD is a consultant at Department of Respiratory Diseases at Aalborg University Hospital, specialized in COPD and comorbidities and infectious lung diseases. Furthermore she is an Associate Professor at the Clinical Institute, Aalborg University.

Elisabeth Bendstrup

Elisabeth Bendstrup, MD, PhD, Ass. Prof., is a consultant at Department of Respiratory Diseases and Allergy, Aarhus University Hospital, Denmark. She is a specialist in pulmonary diseases, and her main research focus is interstitial lung diseases. 

Torgny Wilcke

Torgny Wilcke, MD, Ph.D., is consultant at Medical Department O at Herlev -Gentofte Hospital and associate professor at clinical section of University of Copenhagen, Denmark. He is a specialist in respiratory medicine and his main research focus is COPD, rehabilitation, home NIV and palliation.