Advance care planning in life-threatening pulmonary disease: a focus group study

Abstract

Advance care planning (ACP) is a communication process for mapping a patient's wishes and priorities for end-of-life care. In preparation for the introduction of ACP in Norway, we wanted to explore the views of Norwegian pulmonary patients on ACP.

We conducted four focus group interviews in a Norwegian teaching hospital, with a sample of 13 patients suffering from chronic obstructive pulmonary disease, lung cancer or lung fibrosis. Analysis was by systematic text condensation.

Participants' primary need facing end-of-life communication was “the comforting safety”, implying support, information and transparency, with four underlying themes: 1) provide good team players; 2) offer conversations with basic information; 3) seize the turning point; and 4) balance transparency. Good team players were skilled communicators knowledgeable about treatment and the last phase of life. Patients preferred dialogues at the time of diagnosis and at different “turning points” in the disease trajectory and being asked carefully about their needs for communication and planning. Transparency was important, but difficult to balance.

ACP for patients with life-threatening pulmonary disease should rest upon an established patient–doctor/nurse relationship and awareness of turning points in the patient's disease progression. Individually requested and tailored information can support and empower patients and their relatives.