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

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.

Quality of palliative and end-of-life care: a quantitative study of temporal trends and differences according to illness trajectories in Quebec (Canada).

BACKGROUND: Our aim was to assess temporal trends and compare quality indicators related to Palliative and End-of-Life Care (PEoLC) experienced by people dying of cancer (trajectory I), organ-failure (Trajectory II), and frailty/dementia (trajectory III) in Quebec (Canada) between 2002 and 2016. METHODS: This descriptive population-based study focused on the last month of life of decedents who, based on the principal cause of death, would have been likely to benefit from palliative care. Five PEoLC indicators were assessed: home deaths (1), deaths in acute care beds with no PEoLC services (2), at least one Emergency Room (ER) visit in the last 14 days of life (3), ER visits on the day of death (4) and at least one Intensive Care Unit (ICU) admission in the last month of life (5). Data were obtained from Quebec's Integrated Chronic Disease Surveillance System (QICDSS). RESULTS: The annual percentage of home deaths increased slightly between 2002 and 2016 in Quebec, rising from 7.7 to 9.1%, while the percentage of death during a hospitalization in acute care without palliative care decreased from 39.6% in 2002 to 21.4% in 2016. Patients with organ failure were more likely to visit the ER on the day of death (20.9%) than patients dying of cancer and dementia/frailty with percentages of 12.0% and 6.4% respectively. Similar discrepancies were observed for ICU visits in the last month and ER visits in the last 14 days. CONCLUSION: PEoLC indicators showed more aggressiveness of care for patients with organ failure and highlight the need for more equitable access to quality PEoLC between malignant and non-malignant illness trajectories. These results underline the challenges of providing timely and optimal PEoLC.