Quality of palliative and end-of-life care: a qualitative study of experts' recommendations to improve indicators in Quebec (Canada)

Abstract

Background: In 2021, the National Institute of Public Health (INSPQ) (Quebec, Canada), published an update of the palliative and end-of-life care (PEoLC) indicators. Using these updated indicators, this qualitative study aimed to explore the point of view of PEoLC experts on how to improve access and quality of care as well as policies surrounding end-of-life care.

Methods: Semi-directed interviews were conducted with palliative care and policy experts, who were asked to share their interpretations on the updated indicators and their recommendations to improve PEoLC. A thematic analysis method was used.

Results: The results highlight two categories of interpretations and recommendations pertaining to: (1) data and indicators and (2) clinical and organizational practice. Participants highlight the lack of reliability and quality of the data and indicators used by political and clinical stakeholders in evaluating PEoLC. To improve data and indicators, they recommend: improving the rigour and quality of collected data, assessing death percentages in all healthcare settings, promoting research on quality of care, comparing data to EOL care directives, assessing use of services in EOL, and creating an observatory on PEoLC. Participants also identified barriers and disparities in accessing PEoLC as well as inconsistency in quality of care. To improve PEoLC, they recommend: early identification of palliative care patients, improving training for all healthcare professionals, optimizing professional practice, integrating interdisciplinary teams, and developing awareness on access disparities.

Conclusions: Results show that PEoLC is an important aspect of public health. Recommendations issued are relevant to improve PEoLC in and outside Quebec.

Keywords: Care access; Care equity; PEoLC; Quality improvement.