People with chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD) have significantly less access to palliative care compared to cancer patients and the majority of COPD patients die without such care.1 Studies have also shown that people with non-malignant diseases benefit significantly from timely palliative care. This includes a lower symptom burden, fewer visits to the emergency department, and fewer hospitalisations.
Perhaps this is due to the widespread misperception that palliative care only begins when the patient is "out of therapy", almost synonymous with hospice care. However, in the best sense, palliative care should not be offered instead of, but augmented by, routine therapy. The term "supportive therapy" may trigger the more correct association among physicians and patients, but this term is primarily occupied by oncology. Perhaps a new understanding of the term "palliative care" needs to be developed.
The authors of the first European guideline on palliative care in severe COPD or ILD define it as follows: "A holistic and multidisciplinary patient-centred approach that aims to control symptoms and improve the quality of life of people with serious health conditions due to COPD or ILD, and to support their families."2,3
The guideline, which is aimed at healthcare professionals, primarily encourages the inclusion of palliative care not just shortly before death, but at the same time as course-modifying therapies, from the point at which the patient is no longer able to lead their life as usual and needs support.
Good symptom management, improved quality of life, support for carers, and care in the place of choice can help to reduce the time spent in hospital and help the seriously ill to feel less burdened by their symptoms. Important components include the alleviation of physical pain, emotional difficulties and other stresses as well as social, psychological and spiritual support.
According to the working group, advance care planning and living wills should also be discussed at an earlier stage for anyone with COPD or ILD. This should give those affected the opportunity to discuss what treatments they would like (or not want) in the future, how they would like to die and who can make decisions if they are no longer able to express themselves.
Chronic lung disease patients often suffer from refractory breathlessness, unrecognised anxiety and depression as well as a reduced quality of life. Despite the high symptom burden, there is a considerable unmet need for supportive co-care, which palliative care can already provide at the same time as standard therapies.1