Defining the palliative care patient

Dr Wouter Van Mechelen, Research Assistant, Department of Public Health and Primary Care, KU Leuven, Belgium, introduces a research study that was selected as ‘Editor’s choice’ in the March edition of Palliative Medicine.

Dr Wouter Van Mechelen

We are delighted that our paper was nominated as ‘Editor’s choice’ for the March 2013 edition of Palliative Medicine. As a research group started in 2008, the members of RITUALL (Research In The Ultimate Aspects of Life, KU Leuven) are also honoured to tell the story behind their work to readers of the EAPC blog.

In 2008, the Constant Van de Wiel Chair for General Practice was created at our Department of Public Health and Primary Care with the aim of improving the quality of primary care. The chair was funded by a legacy from Professor Emeritus Dr Constant Van de Wiel (theologian KU Leuven, Professor of Canon Law), who died in 2007. Inspired by the good palliative care that Prof Van de Wiel had received from his own GP at the end of his life, we decided to make our research relevant to GPs and to focus on palliative care at home.

Professor Emeritus
Dr Constant Van de Wiel, 1924-2007

One of the first questions was to define a palliative care patient. The question was easy, the answer difficult: What is the definition of a palliative care patient? Surprised by the lack of a clear definition, we aimed to propose minimum characteristics that could define this patient group. So we did a systematic review of medical literature and searched for descriptions of study populations recruited to randomised controlled trials in palliative care.1

We concluded that randomised controlled trials in palliative care have no clear definitions of their palliative care patients. Instead, we illustrated the diversity of this patient population. This diversity makes it difficult to describe these patients clearly and the resulting ambiguity is illustrated by some remarkable findings.

For instance, we would like to emphasise the ambiguous use of the adjective ‘palliative’ even in our peer-reviewed medical literature. Forty-nine per cent of the non-cancer studies (n=172) in our review were excluded because the trials did not refer to palliative care at all, although they were labelled with the mesh term ‘palliative care’. Patients in these studies suffered from endometriosis, osteoarthritis, HIV and low back pain – essentially pathologies with no curative treatment options. This prompts the careful allocation of the mesh term ‘palliative care’ to research articles and the necessary attention to this in the reviewing process.

We hope our article will contribute to the difficult search for a useful and internationally accepted definition of a palliative care patient, and that it will be of interest to clinicians, researchers and health policymakers.

Read the full article in the March 2013 edition of Palliative Medicine

1.Van Mechelen W, Aertgeerts B, De Ceulaer K, Thoonsen B, Vermandere M, Warmenhoven F, et al. Defining the palliative care patient: A systematic review. Palliat Med 2013 Mar; 27(3): 197-208. First published on 6 February 2012, doi: 10.1177/0269216311435268. (To download a free copy of this paper, please see below).

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