Role matters in understanding ‘quality’ in palliative care: a qualitative analysis of patient, caregiver and practitioner perspectives

Abstract

ObjectivesTo compare the discussions from two panels on the concept of palliative care quality for patients with advanced cancer, exploring the priorities reflected in each group’s perspectives.DesignWe convened two RAND-UCLA appropriateness panel discussions on palliative care quality in advanced cancer. Discussions were audio-recorded and transcribed verbatim. Panel transcripts were analysed thematically using a matrix approach to examine perceptions and experiences of quality.SettingDiscussions were framed within the context of advanced cancer care and palliative care.ParticipantsThe patient–caregiver panel had 9 patients with current or a history of cancer and caregivers, and the practitioner panel had 10 expert practitioners representing fields of oncology, primary care, social work, palliative care, nursing, pain management and ethics.ResultsOur analysis identified three thematic categories for understanding quality common across both groups and nine subthemes within those categories. At the highest level, quality was conceived as: (1) the patient and caregiver experience of care, (2) technical competence and (3) the structure of health system. Among the subthemes, four were present in only one of the two group’s discussions: ‘purpose and action’ was specific to the patient–caregiver panel, whereas ‘adhering to best medical practice’, ‘mitigating unintended consequences and side effects’, and ‘health system resources and costs’ were specific to the practitioner panel.ConclusionsWhile both panels aligned on the three key domains of quality, the particular dimensions through which they perceived quality varied in relation to their experience and role as a professional provider of care versus recipient of healthcare services. These differences suggest the importance of adopting a collaborative approach to quality measurement and improvement so that the values of all interested parties are represented in improvement efforts.