Bella Vivat, Research Lecturer, School of Health Sciences and Social Care, Brunel University, UK, and a member of the EAPC Taskforce on Spiritual Care in Palliative Care, explains the background to her longer article that is published in this month’s European Journal of Palliative Care.
I am a sociologist/anthropologist of health and illness and have been interested in the spiritual aspects of palliative care since the early 1990s. For my PhD at the University of Edinburgh, I conducted an ethnographic study in 1997-8, using participant observation to explore spiritual care in a Scottish hospice.1,2 The hospice workers were all aware of the philosophy of hospice/palliative care, specifically, that palliative care included spiritual care, and that spiritual care was not necessarily the same as religious care. However, many were uncertain about what spiritual care meant for their individual practice, and few claimed to provide it. I concluded that spiritual care involved accompanying patients as they explored the meaning to them of approaching the end of their lives. Yet most workers were hesitant to initiate conversations about these kinds of issues with patients, often owing to concern that patients might become distressed. It seemed to me, however, that any distress patients felt was already there. Thus, raising spiritual issues, rather than causing distress, might instead help patients to express and perhaps partly address the distress they were already experiencing.
I wondered whether a tool might help staff initiate such discussions with patients. A measure of spiritual wellbeing, by raising issues relating to the end of life, thereby stimulates reflection on those issues. Such a measure might therefore serve to ‘open the door’ for discussion. The person administering the measure demonstrates their interest by giving the measure to a patient, who can then choose whether or not to respond to this interest.
I was therefore keen to take the opportunity that arose in 2001 to develop a measure of spiritual wellbeing for people receiving palliative care for cancer. This work, on behalf of the Quality of Life Group of the EORTC (European Organisation for Research and Treatment of Cancer), began in 2002, and has been ongoing since then.3,4 Currently the measure is undergoing psychometric field-testing internationally: in 10 European countries, and in Australia, China, Chile, Iran, Japan, Mexico, and Singapore. Interestingly, even during measure development, patients in many collaborating countries have engaged with the measure by discussing those issues it contains which are most important to them.3,5
Uncertainty continues to be an issue for spiritual care,6,7 and, perhaps because of this, its provision is patchy. We hope that once our measure is available for general use it will contribute to improving the provision of spiritual care, in the UK and internationally, alongside the work of the EAPC Spiritual Care Task Force.
1.Vivat, B (2004). The whole and the parts: Spiritual aspects of care in a West of Scotland hospice. Unpublished PhD, University of Edinburgh.
2. Vivat, B (2008). “Going down” and “getting deeper”: physical and metaphorical location and movement in relation to death and spiritual care in a Scottish hospice. Mortality, 13(1): 42-64.
3. Vivat B, Young T, Efficace F et al. (2012). Cross-cultural development of the EORTC QLQ-SWB36: A stand-alone measure of spiritual wellbeing for palliative care patients with cancer. Palliative Medicine, July 2012 (Online First).
5. Vivat, B (under review). Can research into spiritual wellbeing also be a spiritual intervention? UK patients’ responses when pilot-testing an EORTC measure of spiritual wellbeing.
6. Dein S (2009). The role of health professionals in spiritual care: attitudes, practices and interventions. European Journal of Palliative Care, 16: 296-300.
7. Nolan S, Saltmarsh P, Leget C (2011). Spiritual care in palliative care: working towards an EAPC Task Force. European Journal of Palliative Care, 18(2): 86-90.
To find out more…
- The article to which this post relates, Implementing spiritual care at the end of life: the UK by Bella Vivat, is published in the January/February 2013 issue of the European Journal of Palliative Care (vol. 20, issue 1). If you already have a web-based subscription to the EJPC you will be able to download and print this issue, plus all articles in the EJPC archive. Members of the EAPC receive discounted subscription rates to the EJPC – click here to subscribe online.
- Click here to read more posts on spiritual care in Europe.
- Click here for more information on the EAPC Taskforce on Spiritual Care in Palliative Care.