European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease

Abstract

There is increased awareness of palliative care needs in people with chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD.The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the ‘Population, Intervention, Comparison, Outcome’ (PICO) format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation (GRADE) for assessing the evidence. Four additional questions were addressed narratively. An ’evidence-to-decision’ framework was used to formulate recommendations.The following definition of palliative care for people with COPD or ILD was agreed: A holistic and multidisciplinary, person-centred approach aiming to control symptoms, and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers to: consider palliative care when physical, psychological, social, or existential needs are identified through holistic needs assessment; offer palliative care interventions, including support for informal caregivers, in accordance with such needs; offer advance care planning in accordance with preferences; and integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

Treatment of idiopathic pulmonary fibrosis and progressive pulmonary fibrosis: A position statement from the Thoracic Society of Australia and New Zealand 2023 revision

“…Early palliative care input benefits cancer patients by improving their quality of life and survival, as well as their family caregivers 217–220 . The European Respiratory Society published a Clinical Practice Guideline on palliative care for people with COPD and ILD in May 2023 221 . They suggest that palliative care be initiated when there are unmet physical, psychological, social or spiritual/existential unmet needs.…”

Integrating palliative care education in pulmonary rehabilitation: a randomized controlled study protocol

“…Pulmonary rehabilitation (PR) and palliative care are two multicomponent interventions crucial for people with COPD or ILD irrespective of their prognosis [ 3 , 7 , 18 , 19 ]. They have been recognized as “two sides of the same coin” [ 20 ], by sharing several key characteristics such as: 1) specific aims of managing symptoms, optimizing functional independence and improving HRQoL; 2) a holistic and person-centered approach; 3) individualized goal setting; 4) family and/or friend caregivers involvement and support; and 5) access based on needs [ 3 , 18 ]. Differences have also been described, namely in the type of treatment interventions used.…”

“…Recognizing family and/or friend caregivers as a cornerstone of the unit of care has been consistently advocated by palliative care in different chronic progressive diseases [ 7 , 21 ] and is clearly stated in the most recent recommendations for serious respiratory illness [ 18 , 22 ]. Less explored has been the role of PR to support family and/or friend caregivers [ 9 , 13 , 15 – 17 ].…”

“…In recent years, universal PR and upstream palliative care have been advocated, based on unmet needs [ 3 , 18 , 22 ]. Needs of patients and family and/or friend caregivers living with COPD or ILD encompass multiple life dimensions and include e.g., validation and support throughout the disease, public awareness, need to act and be treated normally, meeting others in similar circumstances, coping strategies, open communication, be included in decision-making, understand the disease, strategies for social participation, support from others but allowing autonomy and medication management/equipment handling [ 5 , 6 , 23 , 24 ].…”

“…Needs of patients and family and/or friend caregivers living with COPD or ILD encompass multiple life dimensions and include e.g., validation and support throughout the disease, public awareness, need to act and be treated normally, meeting others in similar circumstances, coping strategies, open communication, be included in decision-making, understand the disease, strategies for social participation, support from others but allowing autonomy and medication management/equipment handling [ 5 , 6 , 23 , 24 ]. However, palliative care remains highly underused in people with chronic respiratory diseases [ 18 ]. One of the reasons reported is the unclear awareness of the potential role of palliative care allied to inadequate knowledge and misperceptions of this field among patients [ 18 , 25 , 26 ].…”