Bella Vivat and Marie-Jose Gijsberts, co-chairs of the EAPC Spiritual Care Reference Group, outline the Group’s history and approach, their own backgrounds and interests, and reflect on planned future work.
Spiritual care has been understood as integral to palliative care from the start, being one of the four interwoven aspects of Cicely Saunders’ “total care”, alongside physical, social, and emotional. Spiritual care was originally understood as synonymous with religious care, but its meaning has evolved with increasing secularisation, particularly in industrialised societies. It is now generally understood as seeking to address an essential need for palliative care patients and their relatives, which may be religious or much wider, and for people of all religions and none. Spiritual care may be provided by any health or social care professional, although some professionals, such as chaplains, have particular expertise.
Our Reference Group evolved from a Task Force, established in 2011, which developed the following working definition of spirituality:
‘Spirituality is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred.’
The EAPC Spiritual Care Task Force included three interlinked subgroups, focusing on research, education and training, and implementation. Task Force members conducted, presented and published findings from surveys of priorities for spiritual care research and definitions of spiritual care. Papers describing spiritual care in individual countries, written by Task Force members, were published in a series for the European Journal of Palliative Care running from 2012 to 2017. Members, including specialists (health care chaplains), generalists (physicians and nurses), and social scientists, frequently presented at EAPC conferences on spiritual distress and wellbeing, and spiritual care in palliative care.
In 2019 we applied to the EAPC to become a Reference Group as a successor to the Task Force. Our application was approved in May 2019, and Marie-Jose then became one of the two co-chairs, together with Joep van der Geer, who, alongside Carlo Leget, had been one of the Task Force co-chairs from the beginning. Marie-Jose is a palliative care and elderly care physician, who conducted her PhD on Spiritual Care at the end of life in Dutch Nursing Homes. In 2019 she was the first author on: “Spiritual Care in Palliative Care: A Systematic Review of the Recent European Literature”.
In October 2020, Bella Vivat replaced Joep as Marie-Jose’s co-chair. Bella is a social scientist and has been researching spiritual care in palliative care since the late 1990s. She began with an ethnographic study of a Scottish hospice for her PhD, which evolved into a project to develop the EORTC QLQ-SWB-32, a measure of spiritual wellbeing for people receiving palliative care, on behalf of the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group.
Our Reference Group continues and develops the activities begun by the Task Force, including the core aim of fully integrating spiritual care in palliative care. We seek to keep spiritual care central to palliative care and remind palliative care practitioners and the wider community that spiritual care and wellbeing matter, not only for patients but also for their friends and relatives, and professional carers too. We continue to present regularly at EAPC conferences, and hold linked Open and Closed Group meetings, currently online.
In 2020 members of the Reference Group published a White Paper on multi-disciplinary education for spiritual care in palliative care in BMC Palliative Care. Our current projects include translating this paper into other European languages. We are also working on a collection of short papers for online publication on the current situation for spiritual care in individual countries, written by colleagues in those countries. This collection will update and build on the 2012-17 series of nine papers published in the European Journal of Palliative Care, written by individual Spiritual Care Task Force members. We would welcome any offers to contribute to this collection from colleagues across Europe, and welcome new Reference Group members at any time. Colleagues can also join our Reference Group open meetings without any commitment.
Notes:
EAPC Reference Groups have a core group membership of at least five people representing geographical and professional diversity and who demonstrate expertise on a particular topic often producing EAPC White Papers, policy documents and tools for practice and research. Find out more about EAPC Reference Groups here
An EAPC White Paper is an authoritative report or guide that informs readers concisely about a complex issue and presents the EAPC’s balanced philosophy and position on the matter. It is meant to help readers understand an issue, solve a problem, or make a decision.
Links and resources:
Join the EAPC Spiritual Care Reference Group or to find out more, click here
You can also request to join the 453 members of our LinkedIn group and our Twitter is @EAPCSpiritualC1
Gijsberts MJ et al. 2019, Spiritual Care in Palliative Care: A Systematic Review of the Recent European Literature.
European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (EORTC) QLQ-SWB32
Some EAPC blogs from us about spiritual care:
Attending to patients’ spiritual needs at the end of life: Exploring the physician’s role
Opening the door for discussing spiritual wellbeing: Implementing spiritual care in palliative care
More about the authors:
Bella Vivat is currently Principal Research Fellow at the Marie Curie Palliative Care Research Department at University College London, UK.
Marie-José Gijsberts provides medical care in a high care hospice and nursing homes in the Netherlands. She is a visiting professor at the End-of-Life Care Research Group at the Vrije Universiteit in Brussels and at Gent University in Belgium.
WELCOME TO EAPC 12TH WORLD RESEARCH CONGRESS ONLINE –18 – 20 MAY 2022. REGISTER NOW!
- REGISTER
- FOLLOW @EAPCvzw #EAPC2022.
- Sign up to the EAPC blog to hear more about the Congress
EAPC Blog 