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End-of-life communication in advanced cancer: international trends (2009–2014)
  1. Mariëtte N Verkissen1,
  2. Yolanda W H Penders2,
  3. Bregje D Onwuteaka-Philipsen3,
  4. Sarah Moreels4,
  5. Gé A Donker5,
  6. Tomás Vega Alonso6,
  7. Lieve Van den Block1 and
  8. Luc Deliens1,7
  1. 1Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium
  2. 2Epidemiology, Biostatistics and Prevention Institute, University of Zürich, Zürich, Switzerland
  3. 3Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Expertise Center for Palliative Care, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
  4. 4Epidemiology and Public Health, Health Services Research, Sciensano, Brussels, Belgium
  5. 5NIVEL Primary Care Database - Sentinel Practices, Netherlands Institute for Health Services Research, Utrecht, The Netherlands
  6. 6Public Health General Directorate, Regional Ministry of Health (Dirección General de Salud Pública, Consejería de Sanidad), Castile and León, Valladolid, Spain
  7. 7Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
  1. Correspondence to Mariëtte N Verkissen, Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium; mariette.verkissen{at}vub.be

Abstract

Objective To examine trends in end-of-life communication with people with cancer in general practice.

Methods Mortality follow-back survey among general practitioners (GPs) in representative epidemiological surveillance networks in Belgium (BE), the Netherlands (NL) and Spain (ES) in 2009–2010 (ES: 2010–2011) and 2013–2014. Using a standardised form, GPs registered all deceased adult patients in their practice and reported for five end-of-life care topics whether they had been discussed with the patient. Non-sudden cancer deaths were included (n=2306; BE: 1233; NL: 729; ES: 344).

Results A statistically significant increase was found between 2009/2010 and 2014 in the prevalence of communication about diagnosis (from 84% to 94%) and options for end-of-life care (from 73% to 90%) in BE, and in GPs’ awareness of patients’ preferences for medical treatment and a proxy decision-maker in BE (from 41% and 20% up to 53% and 28%) and the NL (from 62% and 32% up to 70% and 52%). Communication about options for end-of-life care and psychosocial problems decreased in the NL (from 88% and 91% down to 73%) and ES (from 76% and 77% down to 26% and 39%).

Conclusion Considerable change in GP–patient communication seems possible in a relatively short time span, but communication cannot be assumed to increase over time. Increasing specialisation of care and task differentiation may lead to new roles in communication for healthcare providers in primary and secondary care. Improved information sharing between GPs and other healthcare providers may be necessary to ensure that patients have the chance to discuss important end-of-life topics.

  • cancer
  • communication
  • social care

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Footnotes

  • Contributors All authors contributed equally to the concept of this manuscript. LVdB, LD, BDO-P and TVA designed the EURO SENTIMELC study. SM, GAD and TVA were responsible for organising and monitoring data collection. MNV and YWHP analysed the data. All authors contributed equally to data interpretation. MNV and YWHP drafted the article. All authors critically revised the article and granted approval for publication.

  • Funding Data collection was funded by the Belgian Scientific Institute of Public Health (now Sciensano), the Netherlands Institute for Health Services Research and the Regional Ministry of Health of Castile and León (Spain). The first author received funding from the European Union’s Seventh Framework Programme FP7/2007-2013 (grant agreement no. 602541).

  • Disclaimer The funding agencies were not involved in the decision to write or submit this manuscript.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval For Belgium, ethics approval was obtained from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel (VUB). Formal approval for this research project by a medical ethics committee was not required in the Netherlands according to the Medical Research (Human Subjects) Act (WMO), but permission for the study was sought and obtained from the board of the NIVEL network. The NIVEL Primary Care Database extracts data according to strict guidelines for the privacy protection of patients and GPs. Ethics approval was not required for posthumous collection of anonymous patient data in Spain, according to the legislation of this country.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data may be obtained from a third party and are not publicly available. Data may be made available on request to the relevant national institute.

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