“I may be dead tomorrow, but I’m not dying”: The role of palliative care in COPD

To explore the care needs of patients with end stage COPD and their carers. Fifteen participants from metropolitan Adelaide and regional South Australia with end-stage COPD agreed to two semi-structured in-depth interviews at six monthly intervals. This was one part of a larger NHMRC funded study.

The interview focused on the participants' well-being, their understanding of their disease, and issues related to oxygen use. Activities of daily living were explored, and how they managed with or without a carer and other supports. Information was sought about services involved and perceptions of those services. Access to medical services such as General Practitioners and specialists, including transport and other issues in getting to appointments, and the use of Emergency Departments and ambulance services were explored. Issues related to end-of- life decision-making were also discussed.

There were nine male and six female participants, age range 53 to 79 years. Eight had a resident carer, four received support from family or a friend and three had no carer. Eleven participants were using home' oxygen, and although this enabled them to remain at home, all experienced physical and social restrictions as a result of the oxygen. All participants reported a significant impact from the symptom of breathlessness on their physical capabilities and on levels of anxiety and panic. Two participants did not receive any outside help while other participants reported services ranging from assistance with gardening, cleaning or home aids; four received support for showering. There was no clear, co-ordinated pathway to receive care. Two participants were referred to Specialist Palliative Care Services during the study and this dramatically increased the level and coordination of care. One participant died without being referred to palliative care. End-of-life discussions with this group were not generally addressed although all participants were comfortable with the discussion during the interview.

Provision of care for patients with end stage COPD is currently less than optimal. Strategies to strengthen a palliative approach and to facilitate end-of-life discussions are required urgently. End-of-life care for COPD requires a model with improved communication and co-ordination between services in hospitals and primary care, including palliative care, with appropriate support for patients and carers.