A qualitative exploration of the needs of patients with severe chronic obstructive pulmonary disease (COPD)

Observational study - end of life issues for patients with severe COPD and their family members. a) Chronic obstructive pulmonary disease (COPD) is a common diagnosis, representing the 4th most common cause of death in Australia. It is associated with a similar symptom burden and prognosis as many cancer diagnoses, yet patients suffering this illness frequently do not receive coordinated end of life care, including palliative care. This study aims to (1) identify the concerns of patients with severe COPD and their families including physical, emotional, and social, (2) obtain insights into bereaved families’ experiences of caring for someone with COPD and their end of life care, (3) explore staff perceptions of the palliative care needs of COPD patients (and their families), and (4) explore the information needs of patients, families, bereaved families and staff with particular focus upon the illness course, prognosis and goals of care. b) Semi-structured in-depth interviews will take place with patients who have COPD, with family members and with bereaved family members. Focus groups will be held with health care professionals. c) It is anticipated that the information obtained from the study will be combined with results from epidemiological and quantitative investigations to inform how palliative care may best serve the COPD population. In turn it is anticipated this will assist with the management of the significant symptom burden and care planning associated with advanced COPD. The revised model of palliative care based upon COPD will potentially have broad and helpful applications to other chronic, non-malignant illnesses which follow a relapsing progressive course, such as congestive cardiac failure. d) Semi-structured interviews will be conducted by a palliative care research nurse and the focus groups will be conducted by a palliative care physician. e) Semi-structured interviews and focus groups will be conducted at a time and place suitable to the participant. The project is anticipated to run from April 2008 to April 2009. f) The semi-structured interviews and focus groups will take approximately 1 hour. g) Patients, family members and bereaved family members will particpate in ONE semi-structured interviews. Health care professionals will particpate in ONE focus group.