Palliative Care Service Use in Four European Countries: A Cross-National Retrospective Study via Representative Networks of General Practitioners

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Abstract

Background

Due to a rising number of deaths from cancer and other chronic diseases a growing number of people experience complex symptoms and require palliative care towards the end of life. However, population-based data on the number of people receiving palliative care in Europe are scarce. The objective of this study is to examine, in four European countries, the number of people receiving palliative care in the last three months of life and the factors associated with receiving palliative care.

Methods

Cross-national retrospective study. Over two years (2009–2010), GPs belonging to representative epidemiological surveillance networks in Belgium, the Netherlands, Italy, and Spain registered weekly all deaths of patients (≥18 years) in their practices and the care they received in the last three months of life using a standardized form. Sudden deaths were excluded.

Results

We studied 4,466 deaths. GPs perceived to have delivered palliative care to 50% of patients in Belgium, 55% in Italy, 62% in the Netherlands, and 65% in Spain (p<.001). Palliative care specialists attended to 29% of patients in the Netherlands, 39% in Italy, 45% in Spain, and 47% in Belgium (p<.001). Specialist palliative care lasted a median (inter-quartile range) of 15 (23) days in Belgium to 30 (70) days in Italy (p<.001). Cancer patients were more likely than non-cancer patients to receive palliative care in all countries as were younger patients in Italy and Spain with regard to specialist palliative care.

Conclusions

Although palliative care is established in the countries studied, there are considerable differences in its provision. Two potentially underserved groups emerge non-cancer patients in all countries and older people in Italy and Spain. Future research should examine how differences in palliative care use relate to both patient characteristics and existing national health care policies.

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Most cited references 29

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Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey.

Bregje Onwuteaka-Philipsen, Arianne Brinkman-Stoppelenburg, Corine Penning … (2012)

In 2002, the euthanasia act came into effect in the Netherlands, which was followed by a slight decrease in the euthanasia frequency. We assessed frequency and characteristics of euthanasia, physician-assisted suicide, and other end-of-life practices in 2010, and assessed trends since 1990. In 1990, 1995, 2001, 2005, and 2010 we did nationwide studies of a stratified sample from the death registry of Statistics Netherlands, to which all deaths and causes were reported. We mailed questionnaires to physicians attending these deaths (2010: n=8496 deaths). All cases were weighted to adjust for the stratification procedure and for differences in response rates in relation to the age, sex, marital status, region of residence, and cause and place of death. In 2010, of all deaths in the Netherlands, 2·8% (95% CI 2·5-3·2; 475 of 6861) were the result of euthanasia. This rate is higher than the 1·7% (1·5-1·8; 294 of 9965) in 2005, but comparable with those in 2001 and 1995. Distribution of sex, age, and diagnosis was stable between 1990 and 2010. In 2010, 77% (3136 of 4050) of all cases of euthanasia or physician-assisted suicide were reported to a review committee (80% [1933 of 2425] in 2005). Ending of life without an explicit patient request in 2010 occurred less often (0·2%; 95% CI 0·1-0·3; 13 of 6861) than in 2005, 2001, 1995, and 1990 (0·8%; 0·6-1·1; 45 of 5197). Continuous deep sedation until death occurred more frequently in 2010 (12·3% [11·6-13·1; 789 of 6861]) than in 2005 (8·2% [7·8-8·6; 521 of 9965]). Of all deaths in 2010, 0·4% (0·3-0·6; 18 of 6861) were the result of the patient's decision to stop eating and drinking to end life; in half of these cases the patient had made a euthanasia request that was not granted. Our study provides insight in consequences of regulating euthanasia and physician-assisted suicide within the broader context of end-of-life practices. In the Netherlands the euthanasia law resulted in a relatively transparent practice. Although translating these results to other countries is not straightforward, they can inform the debate on legalisation of assisted dying in other countries. The Netherlands Organization for Research and Development (ZonMw). Copyright © 2012 Elsevier Ltd. All rights reserved.

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Daily symptom burden in end-stage chronic organ failure: a systematic review.

Jos Schols, E Wouters, Martijn Spruit … (2008)

Chronic diseases are nowadays the major cause of morbidity and mortality worldwide. Patients with end-stage chronic organ failure may suffer daily from distressful physical and psychological symptoms. The objective of the present study is to systematically review studies that examined daily symptom prevalence in patients with end-stage chronic organ failure, with attention to those that included patients with either congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) or chronic renal failure (CRF). Thirty-nine articles (8 CHF, 7 COPD, 2 CHF and COPD, 22 CRF) have been included. The included studies used various study designs. There was a wide range of daily symptom prevalence that may be due to the heterogeneity in methodology used. Nevertheless, findings suggest significant symptom burden in these patients. This review highlights the need for further prospective and longitudinal research on symptom prevalence in patients with end-stage CHF, COPD and CRF to facilitate the development of patient-centred palliative care programs.

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Estimating the size of a potential palliative care population.

Louise McNamara, A Blackmore, L Rosenwax … (2005)

To develop a method for estimating the population who could potentially benefit from receiving palliative care in the last year of their lives, and then apply the estimates to the Western Australian population to ascertain characteristics of these people. Three estimates of the potential palliative care population, Minimal, Mid-range and Maximal, were developed through focus groups, interviews and the literature. These estimates were applied to the cohort of people who died in Western Australia between 1 July 2000 and 31 December 2002 by linking death records with hospital morbidity data through the Western Australian Data Linkage System. Between 0.28% and 0.50% of people in the Western Australian population in any one year could potentially benefit from palliative care, many of whom die from conditions other than neoplasms. While neoplasms accounted for 59.5% of all underlying causes of deaths in the Minimal Estimate, heart failure (21.0%), renal failure (9.8%), chronic obstructive pulmonary disease (9.6%), Alzheimer's disease (4.0%), liver failure (3.2%), Parkinson's disease (1.3%), motor neurone disease (0.9%), HIV/AIDS (<0.01%) and Huntington's disease (<0.01%) accounted for other conditions in this estimate. The study was expanded to include Mid-range and Maximal Estimates. Characteristics of the Western Australian population in these three estimates are described. Unlike traditional palliative care estimates that focus on malignant disease, this study included nonmalignant conditions in a set of three estimates of a potential palliative care population. By using population-based data to describe characteristics of people who compose palliative care populations, these results offer a tool for planning equitable healthcare services.

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Author and article information

Contributors

Gozde Ozakinci: Role: Editor

Journal

Journal ID (nlm-ta): PLoS One

Journal ID (iso-abbrev): PLoS ONE

Journal ID (publisher-id): plos

Journal ID (pmc): plosone

Title: PLoS ONE

Publisher: Public Library of Science (San Francisco, USA )

ISSN (Electronic): 1932-6203

Publication date Collection: 2013

Publication date (Electronic): 30 December 2013

Volume: 8

Issue: 12

Electronic Location Identifier: e84440

Affiliations

[1 ]End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

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

[3 ]Clinical and Descriptive Epidemiology Unit, Cancer Prevention and Research Institute, Florence, Italy

[4 ]Dutch Sentinel General Practice Network, NIVEL, Netherlands Institute for Health Services Research, Utrecht, The Netherlands

[5 ]Public Health General Directorate, Regional Ministry of Health (Dirección General de Salud Pública, Consejería de Sanidad), Castile and Leon, Valladolid, Spain

[6 ]Italian Society of General Medicine (Società Italiana di Medicina Generale), Florence, Italy

[7 ]Department of Public and Occupational Health, EMGO+ Institute, VU University Medical Center, Amsterdam, The Netherlands

University of St Andrews, United Kingdom

Author notes

* E-mail: lara.pivodic@ 123456vub.ac.be

Competing Interests: The authors have declared that no competing interests exist.

Conceived and designed the experiments: LP KP LVdB BOP LD. Performed the experiments: VVC GM GD TVA JLA PLA. Analyzed the data: LP KP LVDB. Wrote the paper: LP. Made critical revisions of manuscript: KP LVdB LD BOP VVC GM GD TVA JLA PLA. Final approval of the manuscript: LP KP LVdB BOP LD VVC GM GD TVA JLA PLA.

Article

Publisher ID: PONE-D-13-07755

DOI: 10.1371/journal.pone.0084440

PMC ID: 3875565

PubMed ID: 24386381

SO-VID: cfcbcf90-5499-486c-bcdb-93ce0334c5c3

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

History

Date received : 19 February 2013

Date accepted : 22 November 2013

Page count

Pages: 11

Funding

Funding for the study came from the Institute for the Promotion of Innovation by Science and Technology in Flanders ( http://www.iwt.be) as a Strategic Basic Research project (SBO) (contract SBO IWT 050158) (2006–2010), as part of the ‘Monitoring Quality of End-of-Life Care (MELC) Study’, a collaboration between the Vrije Universiteit Brussel, Ghent University, Antwerp University, the Scientific Institute for Public Health, Belgium, and VU University Medical Center Amsterdam, the Netherlands. Funding also came from the Italian Ministry of Health ( http://www.salute.gov.it) through the ‘Evaluation, testing and implementation of supportive care, care interventions, integrated programs and improving the quality of care for cancer patients’ program (‘Integrated Oncology Project n°6, years 2008–2011’) led by Massimo Costantini (IRCCS AOU San Martino-IST, Genoa), from the annual budgets of the Autonomous Community of Castilla y León ( http://www.jcyl.es) and Comunitat Valenciana ( http://www.gva.es) and from EURO IMPACT: European Intersectorial and Multidisciplinary Palliative Care Research Training, funded by the European Union Seventh Framework Programme (FP7/2007–2013, under grant agreement n° [264697], http://ec.europa.eu/research/fp7). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Palliative Care Service Use in Four European Countries: A Cross-National Retrospective Study via Representative Networks of General Practitioners

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Abstract

Background

Methods

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Conclusions

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Most cited references 29

Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey.

Daily symptom burden in end-stage chronic organ failure: a systematic review.

Estimating the size of a potential palliative care population.

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