Differences in primary palliative care between people with organ failure and people with cancer: An international mortality follow-back study using quality indicators

Author:

Penders Yolanda WH1ORCID,Onwuteaka-Philipsen Bregje2,Moreels Sarah3,Donker Gé A4,Miccinesi Guido5,Alonso Tomás Vega6,Deliens Luc17,Van den Block Lieve1

Affiliation:

1. End-of-Life Care Research Group, Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

2. Amsterdam Public Health Research Institute, Department of Public and Occupational Health, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands

3. Scientific Institute of Public Health (Wetenschappelijk Instituut Volksgezondheid, Institut Scientifique de Santé Publique), Unit of Health Services Research, Brussels, Belgium

4. NIVEL Primary Care Database—Sentinel Practices, Netherlands Institute for Health Services Research, Utrecht, The Netherlands

5. Clinical and Descriptive Epidemiology Unit, Cancer Prevention and Research Institute, Florence, Italy

6. Public Health Directorate, Regional Ministry of Health (Dirección General de Salud Pública, Consellería de Sanidad), Valladolid, Spain

7. Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium

Abstract

Background: Measuring the quality of palliative care in a systematic way using quality indicators can illuminate differences between patient groups. Aim: To investigate differences in the quality of palliative care in primary care between people who died of cancer and people who died of organ failure. Design: Mortality follow-back survey among general practitioners in Belgium, the Netherlands, and Spain (2013–2014), and Italy (2013–2015). A standardized registration form was used to construct quality indicators regarding regular pain measurement, acceptance of the approaching end of life, communication about disease-related topics with patient and next-of-kin; repeated multidisciplinary consultations; involvement of specialized palliative care; place of death; and bereavement counseling. Setting/participants: Patients (18+) who died non-suddenly of cancer, cardiovascular disease, or respiratory disease ( n = 2360). Results: In all countries, people who died of cancer scored higher on the quality indicators than people who died of organ failure, particularly with regard to pain measurement (between 17 and 35 percentage-point difference in the different countries), the involvement of specialized palliative care (between 20 and 54 percentage points), and regular multidisciplinary meetings (between 12 and 24 percentage points). The differences between the patient groups varied by country, with Belgium showing most group differences (eight out of nine indicators) and Spain the fewest (two out of nine indicators). Conclusion: People who died of organ failure are at risk of receiving lower quality palliative care than people who died of cancer, but the differences vary per country. Initiatives to improve palliative care should have different priorities depending on the healthcare and cultural context.

Publisher

SAGE Publications

Subject

Anesthesiology and Pain Medicine,General Medicine

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