The effects of advance care planning on end-of-life care

Arianne Brinkman-Stoppelenburg, MSc, researcher in the department of Public Health, Erasmus MC, Rotterdam, The Netherlands, explains the background to her longer research article that has been selected as Editor’s Choice in the September edition of Palliative Medicine.

Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. It enables patients and their families to consider what care and treatments might or might not be acceptable, and to try and make plans in line with their wishes. In our recent review to be published in Palliative Medicine, we investigated the effects of advance care planning on end-of-life care. 

Arianne Brinkman-Stoppelenburg

Arianne Brinkman-Stoppelenburg

What was the motive for performing this review?
In our department of Public Health at Erasmus MC, it’s good practice to start your PhD-trajectory by writing a review on a relevant (end-of life care) topic. Reading more about the topic, I became interested in advance care planning because it is a broad concept, involving a range of interventions and outcomes. Over the past years, the focus of advance care planning has shifted from the completion of written forms, to the social process. Advance care planning is now considered as an important aspect of end-of-life care. This made me curious about the effects of advance care planning on end-of-life care.

What was the aim of the study?
The aim of the study was to get insight into different forms and programmes of advance care planning, and to explore the effects on end-of-life care. In this review, we wanted to give a broad overview; therefore we chose to include different types of advance care planning and outcomes. We checked whether the search strategy covered studies from different countries, as not all countries use the same terminology.

What were the main findings?
We conclude that there is evidence that advance care planning positively impacts on the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients’ preferences than written documents alone. Few studies have been performed on the effects of advance care planning in the Netherlands and in Europe. More studies are needed with an experimental design, in different settings, including the community, also in the Netherlands and other European countries.

What have you learned?
I have learned that it takes a lot of effort to perform a good review. The definition of a proper search strategy, including relevant Mesh-terms, and defining good inclusion and exclusion criteria takes a lot of time at the start, but it turned out to be very worthwhile later on in the process of selecting papers.

How can this study be used in practice?
The review was helpful in preparing the study proposal for the ACTION trial (Advance Care Planning – An Innovative Palliative Care Intervention to Improve Quality of Life in Oncology), a large cluster randomised trial in six European countries that assessed the effects of advance care planning on symptom burden and quality of life of patients with advanced cancer. I hope this review will provide a useful overview of the current literature and that it helps to identify possible gaps that could be addressed with further research.

Read the full article in the September issue of Palliative Medicine

Read the full article in the September issue of Palliative Medicine

You can download a free copy of the longer article…
This post relates to the longer article, ‘The effects of advance care planning on end-of-life care: A systematic review’ by Arianne Brinkman-Stoppelenburg, MSc, Dr Judith AC Rietjens and Dr Agnes van der Heide, Palliat Med 2014 28:9, 2014, Vol. 28(8) 1000–1025. Published online before print 20 March 2014, DOI: 10.1177/0269216314526272.
EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (If you need to register or login to download this paper follow the instructions in the top right-hand corner of EAPC home page and scroll down to download the article). Click here to view other EAPC-originated papers.

Links and resources…

  • ACTION (Advance Care Planning – An Innovative Palliative Care Intervention to Improve Quality of Life in Oncology). 
  • The EAPC is currently preparing a new White Paper on Advance Care Planning. Check the EAPC website and social media links for future updates.
Posted in Palliative Medicine – Editor's Choice, Publications, Research | Tagged , | Leave a comment

Trying to make a difference: One medical student at a time

Clique aqui para ler a versão em português

Bárbara Antunes, Research Associate at Centro de Estudos e Investigação em Saúde da Universidade de Coimbra (CEISUC), Portugal, and Visiting Research Associate at Cicely Saunders Institute, King’s College London, UK.

Bárbara Antunes

Bárbara Antunes

Being a full-time researcher at King’s College London allowed me to acquire new skills, but it also meant I would be away from clinical psychology practice for a number of years.

In order to stay in the ‘real world’ I explored options. One of the best things I did was to facilitate role-playing communication sessions with medical students at King’s College London. From first years, on managing the clinical interview, to final years –almost doctors – on how to break bad news. These were the most challenging, but the most rewarding sessions.

All groups are different, and of the 10 to 15 students per group, two or three will get to role-play in each 30-minute session. My favourite bit is at the end of the role-playing, after everyone has had a chance to share their thoughts and feelings: when they realise that in that particular moment, with that particular person, the best possible medical care they can deliver is not CPR manoeuvres or a highly complex drug prescription… rather it is to bear witness to that life-altering moment. To be silent. To acknowledge the person’s reality has changed forever, because before that conversation they still had a mother, or were healthy or were not faced with extremely difficult choices. It is to listen, to support someone’s anguish and sadness and to let them know they are not alone. To offer a tissue, a glass of water, or ask if there is someone they would like you to ring.

“And we just stand there?’’
You’re not ‘just’ standing there, you are ‘with’ them. You’re not answering the phone or checking messages, nothing is more important than that moment. Because you cannot change circumstances or save someone from death when it’s their time. But you can make people feel cared for. When they go home they might not remember half of what was said, but they will never forget your attitude, possibly in years to come. ‘’That was the worse day of my life, but the doctor was really nice to me, just stayed there to make sure I was okay and offered help,’’ as opposed to ‘’Not only it was the worse day of my life but the doctor seemed like they had more important things to do, they just brushed me off. It’s not right!’’

After the person leaves, it’s your turn to vent, if you need to – either with colleagues, alone, or with family and friends. And that is when, hopefully, I see the ‘epiphany’ look. Then I know they ‘got it’ and can only hope that they will remember when practising medicine: it’s about caring for another human being.

If you’d like to share your experiences of being part of an international research project please leave a comment below, or contact via email or Twitter: @B_CP_Antunes

Find out more…
If you’ve enjoyed this post, you might also be interested to read Dr Birgit Jaspers’ post on the EAPC blog describing a seminar for medical students where hospice volunteers act as patients.

Tentando fazer a diferença: um aluno de medicina de cada vez

Bárbara Antunes, Investigadora Colaboradora do Centro de Estudos e Investigação em Saúde da Universidade de Coimbra (CEISUC) Portugal e Investigadora Convidada no King’s College London, Instituto Cicely Saunders, Reino Unido.

Bárbara Antunes

Bárbara Antunes

Ser investigadora a tempo inteiro no King’s College London permitiu-me adquirir novas competências, ainda que tenha implicado ficar longe da prática clínica e, portanto, não exercer psicologia clínica durante alguns anos. Para ficar em contacto com o “mundo real” explorei opções. Uma das melhores coisas que fiz, foi facilitar sessões de role-playing em comunicação para os alunos de medicina da universidade. Desde alunos primeiro ano, sobre como realizar a entrevista clínica, até aos alunos do último ano – quase médicos – como dar más notícias. As sessões mais difíceis, mas as mais recompensadoras.

Todos os grupos são diferentes, e dos 10 a 15 estudantes por grupo, dois ou três terão a oportunidade de fazer role-playing durante cada sessão de 30 minutos. A minha parte favorita é no final do role-playing, depois de todos terem tido a oportunidade de partilhar os seus pensamentos e sentimentos: quando compreendem que, quando estiverem no mundo real, num determinado momento e com uma pessoa em particular, o melhor tratamento médico possível não será uma manobra de reanimação cardiorespiratória, ou prescrição complexa de medicamentos… antes, será testemunhar um momento preciso que para sempre alterará vidas. Estar em silêncio. Validar que a realidade daquela pessoa mudou para sempre, porque antes daquela conversa, a pessoa ainda tinha Mãe, ou era saudável, ou não estava perante decisões médicas complicadíssimas. Ouvir, suportar a angústia e tristeza daquela pessoa e permitir-lhe saber que não está sozinha. Oferecer um lenço, um copo de água ou perguntar se há alguém a quem gostaria que se telefonasse.

“E ficamos ali apenas?”
Não ficam “só” ali, estão com “com” aquela pessoa. Não estão ao telefone ou a ver mensagens, nada é mais importante do que aquele momento. Porque ninguém pode mudar as circunstâncias ou salvar alguém da morte quando chega a sua hora. Mas podem fazer com que sinta que alguém se preocupa. Quando aquela pessoa for para casa poderá não se lembrar de metade do que foi dito, mas nunca esquecerá a vossa atitude, possivelmente durante anos: “foi o pior dia da minha vida, mas o/a médico/a foi muito simpático/a, ficou comigo para se certificar de que eu estava bem e ofereceu-me ajuda.” Ao invés de “não só, foi o pior dia da minha vida, mas o/a médico/a parecia que tinha coisas mais importantes para fazer, simplesmente despachou-me! Não está certo!”. Depois da pessoa sair é a vossa vez de ventilar, se sentirem que é necessário. Seja com colegas, sozinho/a ou com família e amigos.

E é nesse momento, espero eu, que vejo os olhares de ‘epifania’. Aí sei que compreenderam e só posso desejar que se lembrem quando exercerem medicina: é sobretudo cuidar de outro ser humano.

Se quiser partilhar as suas experiências de fazer parte de um projeto internacional, por favor deixe o seu comentário abaixo, ou contacte via email ou Twitter: @B_CP_Antunes

Obrigada à Dra Sofia Vilar Soares pela revisão do texto em Português.

Posted in Education and training | Tagged , , , | 3 Comments

German spirituality – spirituality in Germany  


Lukas Radbruch, President of the German Association for Palliative Care, and Chair of Palliative Medicine at the University of Bonn, Germany.

Prof Lukas Radbruch

Prof Lukas Radbruch

Rev Joep van de Geer, co-chair of the EAPC Task Force on Spirituality, recently contributed a post about the translation of the Dutch Guideline on Spiritual Care into German following a German course on spirituality in Mainz. The EAPC task force has translated the guideline as an example of the myriad of valuable tools and documents that are available in various countries, albeit only in the native language.

Without doubt, this translation will be very useful for palliative care or spiritual care professionals in Germany. However, reading the guideline I’d like to point out that there is a vibrant development in spiritual care in Germany, and a number of tools on spiritual care are already available. Here is some information on other German resources, with a rather random selection by me.

  • There is a Task Force on Spiritual Care within the German Association for Palliative Care, and the task force has published a paper on “What is spiritual care?” that is available online. This position paper from 2007 describes what spiritual care is, what are the tasks in clinical palliative care, in education and research, and in media work.
  • Traugott Roser has an academic chair for spiritual care in Munich, and he cooperates closely with the chair for social care (Maria Wasner) and the chair for palliative medicine (Claudia Bausewein) in the same city. There is a lot of education and research going on in his department. Traugott Roser is also the editor of an online journal on spiritual care. The latest issue in 2014 includes original papers on knowledge and opportunities for volunteers in psychosocial crisis intervention, on behaviourial therapy and spirituality as well as on the competencies of emergency spiritual care givers.
  •  Traugott Roser has also written an excellent German textbook entitled ‘Spiritual Care’ and, together with Thomas Hagen, Hermann Reigber and Bernadette Fittkau-Tönnesmann, a curriculum on palliative care for spiritual care givers.
  • Another excellent book is by Monika Müller, with many stories and reflections on how to accompany dying or grieving people as a spiritual pathway (‘Dem Sterben Leben geben: Die Begleitung sterbender und trauernder Menschen als spiritueller Weg’). I often use this for training courses of physicians.

There is a lot more in German language out there and I am sure that I have missed out on some important resources. Spiritual care really seems to be a most interesting topic in palliative care in Germany, as well as elsewhere.

I agree completely with Joep van de Geer that it is worthwhile to compare tools and resources between countries, languages and cultures. I hope the EAPC task force will continue with the translation of other material to facilitate exchange and comparison. There is so much to be gained from this exchange!

Links and resources

  • You can read more posts about spiritual care in palliative care on the EAPC blog, including Joep van de Geer’s post published on 18 August.


Spiritualität in Deutschland – deutsche Spiritualität  

Lukas Radbruch, Präsident der Deutschen Gesellschaft für Palliativmedizin, Lehrstuhl für Palliativmedizin, Universitätsklinik Bonn.

Prof Lukas Radbruch

Prof Lukas Radbruch

Rev Joep van de Geer, stellvertretender Sprecher der EAPC Task Force on Spirituality, berichtete vor kurzem im EAPC Blog über die deutsche Übersetzung der niederländischen Leitlinien zu Spiritual Care nach einem Kurs zu Spiritualität in Mainz. Die EAPC Arbeitsgruppe hat die Leitlinie übersetzt als Beispiel für die Vielzahl von nützlichen Instrumente und Dokumenten, die in den verschiedenen Ländern zur Verfügung stehen, wenn auch leider nur in der Sprache des jeweiligen Landes.

Diese Übersetzung wird sicherlich sehr nützlich sein für alle in der Palliativversorgung oder Spiritual Care Tätigen in Deutschland. Jedoch sollte auch darauf hingewiesen werden, dass die spirituelle Begleitung in Deutschland eine rasante Entwicklung erlebt, und eine Anzahl von Hilfsmitteln bereits verfügbar sind. Hier also ein paar Information zu anderen deutschen Ressourcen, wenn auch mit einer ziemlich willkürlichen Auswahl.

  • In der Deutschen Gesellschaft für Palliativmedizin gibt e seine Arbeitsgruppe zur Spiritualität, die ein Positionspapier zu Spiritual Care veröffentlicht hat. Das Positionspapier von 2007 ist online verfügbar, und beschreibt was spirituelle Begleitung ist, was ihre Aufgaben in der Palliativversorgung sind, wie auch in Forschung, Lehre und in der Öffentlichkeitsarbeit.
  • Traugott Roser hat den Lehrstuhl für Spiritual Care in München, und kooperiert eng mit dem Lehrstuhl für Social Care (Maria Wasner) und dem Lehrstuhl für Palliativmedizin (Claudia Bausewein), beide auch in München. Mit seiner Arbeitsgruppe sind eine ganze Reihe von Schulungs- und Forschungsprojekten im Gange. Traugott Roser is auch der Herausgeber einer Online-Zeitschrift zu Spiritual Care.  In der aktuellen Ausgabe sind Originalarbeiten zu Kenntnissen und Möglichkeiten von Ehrenamtlichen in der Notfallversorgung, Verhaltenstherapie und Spiritualität sowie zu den Kompetenzen der Notfallseelsorger zu finden.

Diese Auflistung ist natürlich unvollständig, und ich bin sicher, dass ich hier einige wichtige Ressourcen vergessen habe. Die spirituelle Begleitung scheint von besonderem Interesse in der Palliativversorgung in Deutschland, wie auch in vielen anderen Ländern.

Ich stimme Joep van de Geer absolute zu, dass es nützlich und wertvoll ist, die Werkzeuge und Resourcen zwischen verschiedenen Ländern, Sprache und Kulturen zu vergleichen. Ich hoffe, dass die EAPC Arbeitsgruppe auch andere Materialien übersetzen wird, um Austausch und Vergleich zu erleichtern. Wir können so viel lernen von diesem Vergleich!

Links und Resourcen

  • Weitere Beiträge zur spirituellen Begleitung in der Palliativversorgung im EAPC Blog unter anderem auch den Beitrag von Rev Joep van de Geer.
Posted in EAPC Taskforces/special projects, Education and training, Publications, Spiritual care | Tagged , , | 1 Comment

Translating spiritual care directives: Share your hidden national wisdom!

Translating EAPC documents is a challenging yet vital task. Rev Joep van de Geer, Hospital Chaplain/Project Leader Palliative Care, Medical Centre Leeuwarden, The Netherlands, and Co-Chair of the European Association for Palliative Care Taskforce on Spiritual Care, explains how his taskforce is succeeding in this important work.

Rev Joep van de Geer

Rev Joep van de Geer

Following a course on spiritual care in another country is such an inspiring, yet puzzling experience. Together with my colleague and friend, Carlo Leget, I followed the course ‘Auf der Spur der Spiritualität’ led by Dr Erhard Weiher 1 and Dr Ruthmarijke Smeding  in Mainz, Germany. It confirmed my belief that throughout Europe there must be a number of inspiring projects and documents which we do not know about, simply because all relevant documents are written in the native language.

But we do need to exchange this ‘hidden wisdom’ in order to move spiritual care forward throughout Europe. We need English translations of relevant documents but the group of participants on our course also confirmed the need to translate relevant documents into their language for discussion purposes.

Even though Dutch and German are closely related languages, and reading and speaking German is not a problem for me, translating consensus-based concepts on spiritual care from Dutch to German proved to be more complex than expected. But we have made a start and the core elements of the Dutch guideline on spiritual care are now translated into German.

A small dedicated working group with three German and two Dutch colleagues began by translating and discussing the basic concepts and core parts of the Dutch guideline.

It was an interesting process: exploring each other’s subtle linguistic nuances, in the context of healthcare systems with different structures. Important professionals conditions proved to be different in spiritual palliative care.

For example, in Germany the development of palliative medicine as a specialism is an important development, whereas in The Netherlands palliative care is supposed to be an integral part of every medical discipline. Another, is the position and professional profile of healthcare chaplains in the healthcare system: in both countries these are completely different. In The Netherlands, healthcare chaplains are employed by healthcare institutions; 2 in Germany the vast majority are employed by churches. These, and other political, cultural and professional differences would make a complete, detailed translation pointless.

Therefore we decided to make a core translation. This document aims to facilitate multidisciplinary discussion on the specific demands of developing spiritual care in German-speaking healthcare systems.

To stimulate contributions to the international debate from non-English speaking countries, the EAPC Taskforce on Spiritual Care invites authors to translate relevant national guidance documents (standards, guidelines, programmes). A list of publications related to our taskforce is available to download. Please contact me by email or via our task force website if you would like to discuss.

1. Weiher E. Das Geheimnis des Lebens berühren. Spiritualität bei Krankheit, Sterben, Tod. Eine Grammatik für Helfende. Stuttgart: Kohlhammer; 2011.

2. van de Geer J, Leget CJW. How spirituality is integrated system-wide in the Netherlands Palliative Care National Programme. Progress in Palliative Care 2012(20):98-105.

Links and resources



Posted in EAPC Taskforces/special projects, Publications, Spiritual care | Tagged , | 1 Comment

The politics of palliative care, rights of older persons, and the EU

Katherine Pettus, Advocacy Officer, International Association for Hospice and Palliative Care, (IAHPC), reports on the Open Ended Working Group on Ageing held at the United Nations, New York, on July 29-August 1.

Dr Katherine Pettus

Dr Katherine Pettus

By 2025, more than 20% of Europeans will be 65 or over. The demographic reality of ageing populations poses intense social, economic, clinical, and bioethical challenges for European societies. Ageing will affect all European Union countries in most policy domains and presents multiple opportunities for cross-cutting advocacy and civil society collaboration.

I attended the 5th session of the Open Ended Working Group on Ageing (OEWGA) at the United Nations in New York, for IAHPC. Ours was the only civil society organisation (out of many) to make any statement about palliative care and access to medicines in the plenary sessions. Colombia was the only Member State that mentioned the issues. My colleague Dr Stephen Connor of the Worldwide Palliative Care Alliance (WPCA), and I presented about our respective organisations at a well-attended side event. It was such a privilege to meet and collaborate with passionate members of this established global movement to support ageing populations.

Exhibition of photographs  of older women by Zulma Recchini

Exhibition of photographs of older women by Zulma Recchini

The bioethical stakes of supporting the campaign for the rights of older people are high: first, it focuses on high levels of abuse and neglect of the elderly, and second, by promoting palliative care, it can address the prospect of legalised euthanasia. Without appropriate education, states may conclude that universal palliative care is too expensive and may decide not to subsidise the ’unproductive’ elderly. This elephant in the room will not be ignored in times of economic scarcity if politicians persuade voters that elderly citizens are a drain on the public purse. Global, regional, national and local palliative care movements must continue to claim palliative care as a human right. Care of elders and assurance of a dignified death is an ethical imperative of decent societies in the 21st century.

Mr Mateo Estrémé (Argentina), chair, speaking at the Open Ended Working Group on Ageing 5th session

Mr Mateo Estrémé (Argentina), chair, speaking at the Open Ended Working Group on Ageing 5th session

Considerable discussion at the OEWGA focused on whether a new international convention is needed to protect the rights of older people, similar to those on the rights of children, women, migrants, people with disabilities, etc. The EU as a bloc, the only outlier being Slovenia, does not favour a new convention. With Canada, Japan and US, the EU claims that existing national and international human rights laws and mechanisms are sufficient but must be implemented. In contrast, almost all the countries in the global south, led by Latin America, member states civil society, favour a binding legal instrument. They argue that since existing human rights conventions fail to explicitly identify older people as ‘vulnerable populations’, they simply fall through the treaty cracks.

The EU supports the mandate of the newly appointed Independent Expert on Ageing (IE), Dr Rosa Kornfield Matte of Chile, who will report back to the Human Rights Council on the global state of the rights of ageing populations.

Links and resources

Posted in Advocacy | Tagged , , | 1 Comment

Sleep disturbance in patients with advanced cancer disease 

Gunnhild Jakobsen, Anne Kari Knudsen and Pål Klepstad, The European Palliative Care Research Centre, NTNU, Norway, explain the background to their longer article published in the July/August issue of the European Journal of Palliative Care.

Left to right: Pål Klespads (courtesy Geir Mogen, NTNU); Gunnhild Jakobsen and Anne Kari Knudsen  (courtesy Lena Sæternes).

Left to right: Pål Klespads (photo courtesy Geir Mogen, NTNU); Gunnhild Jakobsen and Anne Kari Knudsen (courtesy Lena Sæternes)

Have you ever experienced poor sleep quality? If so, you may imagine the discomfort patients with advanced cancer experience as a result of sleep disturbance. We know that patients entering the door to our clinic experience bad sleep quality, but we do not yet know enough about the specifics of sleep disturbance, the consequences of sleep disturbance and the best treatment for sleep disturbance in patients with advanced cancer. As health care providers we give sleep disturbance too little attention, both in clinical cancer research and in daily oncology and palliative care.

Why does sleep quality in patients with advanced cancer receive so little attention?
The answer is complex because it is related to the complexity of the advanced cancer itself. Patients with advanced cancer have multiple symptoms. Pain, nausea and other debilitating physical symptoms are often in focus in clinical consultations. Thus, assessment and treatment of sleep disturbance is not in the forefront of clinicians’ priorities. Of course, if pain is the main problem for the patient and sleep quality is influenced by the intensity of this severe pain, the focus should be on removing the causative condition, pain. Nevertheless, we see that assessment of sleep quality is often not a priority even when symptom control is reached.

What should we do?
We should simply ask the patients about their sleep quality the very same day as they are admitted to our clinic. We can learn about their sleep habits outside the hospital, and get to know their difficulty with initiating sleep or maintaining sleep. We can ask for how many nights each week the sleep difficulty is present and perhaps most importantly assess whether a sleep difficulty causes impairment of daytime functioning or not. This knowledge is essential in later stages when the complexity of symptoms is high.

Keep it simple!
Let the patient understand that we really care about his or her sleep quality and that we want to pay attention to it. We know that patients sometimes do not talk about their sleep disturbance. Because we rarely ask, they do not think that we care about sleep. Let us contribute to good sleep quality, it is important for the patients.

Read more about how to screen for sleep disturbance in advanced cancer and the available treatment options in our article in this month’s European Journal of Palliative Care.

ejpc214coverRead a copy of the full article…
This post relates to a longer article, ‘Sleep disturbance in patients with advanced cancer disease’ by Gunnhild Jakobsen, Anne Kari Knudsen and Pål Klepstad, which is published in the July/August 2014 issue of the European Journal of Palliative Care (vol. 21.4). If you have a web-based subscription to the journal you can download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Links and resources
The European Palliative Care Research Centre


Posted in European Journal of Palliative Care, Publications, Research | Tagged , | 1 Comment

Spiritual care and spiritual wellbeing for people receiving palliative care for cancer

Bella Vivat, PhD, Research Lecturer, College of Health and Life Sciences, Brunel University, UK, gives some background to the plenary talk she gave at the 8th EAPC World Research Congress in Lleida in June.

Dr Bella Vivat

Dr Bella Vivat

I am a sociologist/anthropologist of health and illness and have been interested in the spiritual aspects of palliative care since the early 1990s. My PhD was an ethnographic study of a Scottish hospice, conducted during 1997-8, using participant observation to explore the spiritual aspects of care. I found that most workers were hesitant to initiate conversations about issues related to spirituality with patients, often owing to concern that patients might become distressed. It seemed to me, however, that any distress patients felt was already there, and so engaging in discussion around spiritual issues, rather than causing distress, might in fact 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. Thus, assessing or measuring spiritual wellbeing necessarily also initiates an intervention. A measurement tool also therefore serves to ‘open the door’ for discussion, that is, a care provider can demonstrate their interest by giving the measure to a patient, and the patient can then choose whether to respond to this interest, by completing the measure, and to what extent.

Stemming from this, for the past several years I have been one of the two principal investigators on an international study to develop a measure of spiritual wellbeing for people receiving palliative care for cancer, on behalf of the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group. My co-principal investigator is Teresa Young, of the Lynda Jackson Macmillan Centre, Mount Vernon Cancer Centre in north-west London. Data collection for the final, validation phase of the study was completed in mid-2013, with data from 458 patient participants in seven European countries (Austria, France, Italy, the Netherlands, Norway, Spain and the UK), plus Australia, Chile, China, Iran, Japan, Mexico and Singapore, and we completed initial data analysis in early 2014.

We were delighted that our abstract reporting on the validation phase of this study was selected for presentation in the opening plenary of the 8th World Research Congress of the EAPC in Lleida in June. Uncertainty continues to be an issue for spiritual care and, perhaps because of this, its provision is patchy. Even during measure development we have found that patients in many collaborating countries have engaged with the measure and responded to their study participation by discussing issues that have most importance for them. The final validated version of our measure will soon be available for general use, and we hope that it will contribute to improving the provision of spiritual care. Although our aim has always been to produce a measure that has cross-cultural validity, there are some parts of the world in which we have not so far had study collaborators. We plan future studies to confirm the factors identified in this validation study, and already have offers of collaboration from colleagues in countries which have not previously taken part in the study. We would be pleased to welcome collaboration from anyone else who would be interested. If you are interested, do please contact me:

This ongoing project complements the work of the EAPC Spiritual Care Task Force, of which I am also a member and co-leader of the implementation sub-group. The implementation sub-group is currently developing an international study to explore current practices relating to spiritual care – watch the Spiritual Care Task Force webpage for a call for participation, and the webpage and this space for our findings!

Links and resources…

Reports and selected presentations from the 8th EAPC World Research Congress now online…
Click here to view Dr Vivat’s presentation, ‘Cross-cultural validation of an EORTC measure of spiritual wellbeing’ on the EAPC website.


Posted in EAPC Congresses, EAPC Taskforces/special projects, Research, Spiritual care | Tagged , | 1 Comment