Transitions regarding palliative and end-of-life care in severe chronic obstructive pulmonary disease or advanced cancer: Themes identified by patients, families, and clinicians

Background: Classic trajectories of illness at end of life (EOL) suggest different care needs for patients with cancer versus chronic obstructive pulmonary disease (COPD) and may lead to different experiences of transitions over the course of a life-limiting illness. Patients may experience transitions in different ways than clinicians. No prior studies have examined this issue from patients', families', and clinicians' perspectives. Objectives: We sought to explore transitions, defined as experiences that patients and family members viewed as milestones in the evolution of their illnesses and therapies, and compare these perceptions with the perspectives of the patient's physician and nurse to provide insights about communication concerning EOL care. Methods: We conducted a qualitative study using grounded theory to examine participants' perspectives on the experiences of key transitions in the context of living with advanced COPD or cancer. In-depth interviews with patients, family members, nurses, and physicians were conducted by experienced interviewers. Results: Six themes were identified regarding participants' experiences with transitions. Themes that defined transitions among both patients with COPD and those with cancer included: new or different treatments and no more treatments available. Themes unique to patients with COPD were activity limitations due to functional decline and initiation of oxygen therapy. One theme unique to clinicians was acute exacerbation of illness or hospitalization. Conclusions: This study identified differences in the meaning of transitions for patients versus clinicians and for patients with COPD versus those with cancer. These findings may offer clinicians the opportunity to provide a more patient-centered approach to communication about end-of-life care by acknowledging and addressing transitions in palliative care from the perspective of the patient and family.