Experiences of patients and caregivers with early palliative care: A qualitative study.

BACKGROUND: Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective.

AIM: The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care.

DESIGN: Qualitative grounded theory study using individual interviews.

SETTING/PARTICIPANTS: The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team.

RESULTS: Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention.

CONCLUSION: The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.