Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: a qualitative study.

BACKGROUND: Palliative care for people with life-limiting non-malignant disease is increasingly prioritised. People with end-stage chronic obstructive pulmonary disease are among a key group of non-cancer patients likely to benefit from specialist palliative care, but it remains uncertain whether the needs of this group are met by existing services.

AIM: To evaluate the experiences of patients with chronic obstructive pulmonary disease who accessed specialist palliative care.

DESIGN: Data from semi-structured interviews were analysed using a hermeneutic phenomenological approach.

SETTING/PARTICIPANTS: Eight patients accessing specialist palliative care within one city in North West England.

RESULTS: Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical and psychological symptoms, reduced social isolation and a broadened physical environment. Participants were mainly aware of their poor prognosis, but discussion of referral to palliative care sometimes caused distress owing to the historical associations between dying and hospice care. Following engagement with services, participants' perceptions changed: palliative care was associated with social inclusion and opportunities to engage in reciprocal and altruistic social action. Negative associations were replaced by uncertainty and anxiety about the prospect of discharge.

CONCLUSIONS: Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access.