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Palliative Medicine
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The role of general practitioners in continuity of care at the end of life: a qualitative study of terminally ill patients and their next of kin

Eva Michiels

Care Research Group, Vrije Universiteit Brussel, Brussels

Reginald Deschepper

Care Research Group, Vrije Universiteit Brussel, Brussels,rdeschep{at}vub.ac.be

Greta Van Der Kelen

Care Research Group, Vrije Universiteit Brussel, Brussels

Jan L. Bernheim

Care Research Group and Dept. of Human Ecology, Vrije Universiteit Brussel, Brussels

Freddy Mortier

Centre for Environmental Philosophy and Bioethics, Ghent University, Ghent

Robert Vander Stichele

Heymans Institute of Pharmacology, Ghent University, Ghent

Luc Deliens

Dept. of Public and Occupational Health, EMGO Institute, VU University Medical Centre, Amsterdam, Vrije Universiteit Brussel, Brussels

Objectives : Exploring terminal patients' perceptions of GPs' role in delivering continuous end-of-life care and identifying barriers to this. Design : Qualitative interview study with patients (two consecutive interviews). Setting : Primary care Belgium. Participants : Seventeen terminally ill cancer patients, informed about diagnosis and prognosis. Results : Terminal patients attribute a pivotal role to GPs in different aspects of two types of continuity. Relational continuity: having an ongoing relationship with the same GP, of which important aspects are eg, keeping in touch after referral and feeling responsible for the patient. Informational continuity: use of information on past events and personal circumstances to provide individualised care, of which important aspects are eg, exchange of information between GPs, specialists and care facilities. Patients also identify barriers to continuity eg, lack of time and of GPs' initiative. Conclusions : At the end of life when physicians can no longer rely on biomedical models of diagnosis-therapy-cure, patients' perspectives are of utmost importance. This qualitative study made it possible to gain insights into terminal patients' perceptions of continuous primary end-of-life care. It clarifies the concept and identifies barriers to it. Palliative Medicine 2007; 21 : 409—415

Key Words: continuity of patient care • palliative care • primary health care • terminally ill

Palliative Medicine, Vol. 21, No. 5, 409-415 (2007)
DOI: 10.1177/0269216307078503
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