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Open Access Highly Accessed Research article

GPs’ recognition of death in the foreseeable future and diagnosis of a fatal condition: a national survey

Susanne JJ Claessen1*, Anneke L Francke12, Michael A Echteld13, Bart PM Schweitzer4, Gé A Donker2 and Luc Deliens15

Author affiliations

1 VU University medical center (VUmc), EMGO Institute for Health and Care Research, Department of Public and Occupational Health & Expertise Center Palliative Care VUmc, Amsterdam, the Netherlands

2 NIVEL, Netherlands Institute for Health Services Research, Utrecht, the Netherlands

3 Erasmus Medical Center Rotterdam, Intellectual Disability Medicine, Department of General Practice, Rotterdam, the Netherlands

4 VU University medical center (VUmc), EMGO Institute for Health and Care Research, Department of General Practice, Amsterdam, the Netherlands

5 Ghent University & Vrije Universiteit Brussel, End-of-life Care Research Group, Brussels, Belgium

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Citation and License

BMC Family Practice 2013, 14:104  doi:10.1186/1471-2296-14-104

Published: 22 July 2013

Abstract

Background

Nowadays, palliative care is considered as a care continuum that may start early in the course of the disease. In order to address the evolving needs of patients for palliative care in time, GPs should be aware in good time of the diagnosis and of the imminence of death. The aim of the study was to gain insight into how long before a non-sudden death the diagnosis of the disease ultimately leading to death is made and on what kind of information the diagnosis is based. In addition, we aimed to explore when, and based on what kind of information, GPs become aware that death of a patient will be in the foreseeable future.

Methods

A written questionnaire focusing on the GPs’ experiences with their last patient who died non-suddenly was sent to a random representative sample of 850 GPs in the Netherlands.

Results

The data were analysed of the 297 GPs who responded. 76% of the reported cases were cancer patients and 24% were patients with another non-sudden cause of death. The diagnosis was made only in the last week of life for 15% of the non-cancer patients and 1% of the patients with cancer. GPs were most likely to have been informed of the diagnosis by the medical specialist, although particularly in the case of non-cancer patients GPs also relied on their own assessment of the diagnosis or on other information sources.

The GP remained unaware that the patient would die in the foreseeable future until the last week of life in 26% of the non-cancer group, while this was the case for only 6% of the cancer patients. GP’s awareness was most likely to be based on the GP’s own observations of problems and/or symptoms.

Conclusions

The GP often only becomes aware of a fatal diagnosis and of death in the foreseeable future at a late stage in the disease trajectory, particularly in the case of non-cancer patients. It can be assumed that if the diagnosis and the nearing death are only recognised at a late stage, palliative care is either started at a very late stage or not at all.

Keywords:
General practice; Primary care; Palliative care; End-of-life care; Diagnosis; Cancer; Chronic diseases