University of Groningen Learning spiritual care in Dutch

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University of Groningen Learning spiritual care in Dutch hospitals van de Geer, Jacob IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below. Document Version Publisher's PDF, also known as Version of record Publication date: 2017 Link to publication in University of Groningen/UMCG research database Citation for published version (APA): van de Geer, J. (2017). Learning spiritual care in Dutch hospitals: the impact on healthcare of patients in palliative trajectories. Rijksuniversiteit Groningen. Copyright Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons). The publication may also be distributed here under the terms of Article 25fa of the Dutch Copyright Act, indicated by the “Taverne” license. More information can be found on the University of Groningen website: amendment. Take-down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. Downloaded from the University of Groningen/UMCG research database (Pure): For technical reasons the number of authors shown on this cover page is limited to 10 maximum. Download date: 30-06-2022 Learning Spiritual Care in Dutch Hospitals The impact on healthcare of patients in palliative trajectories Joep van de Geer The research presented in this thesis was conducted at the MCL- Academy, Medical Centre Leeuwarden and the Faculty of Theology and Religious Studies, University of Groningen, Netherlands. © 2017 Joep van de Geer Cover and Chapter title pages pictures, are made by Joan van de Brug Fotografie: bridges, gates, buildings and places around Franeker, Netherlands, chosen as symbols of connection, transition and perspective as core concepts of spirituality and spiritual growth. Layout: Libbe Hoekstra, Medical Centre Leeuwarden Cover design & printed by: GVO drukkers & vormgevers B.V., Ede ISBN: 978-94-034-0242-0 Learning spiritual care in Dutch hospitals The impact on healthcare of patients in palliative trajectories Proefschrift ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen op gezag van de rector magnificus prof. dr. E. Sterken en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op donderdag 21 december 2017 om 11.00 uur door Jacob van de Geer geboren op 13 juli 1959 te Zaandam Promotores Prof. dr. T.H. Zock Prof. dr. C.J.W. Leget Prof. dr. K.C.P. Vissers Copromotor Dr. J. Prins Beoordelingscommissie Prof. dr. A.K.L. Reyners Prof. dr. S.C.C.M. Teunissen Prof. dr. M.N. Walton Content Content Prologue 007 Travelling companion and journeyman Chapter 1 013 Introduction Chapter 2 039 How spirituality is integrated system-wide in the Netherlands Palliative Care National Programme Published, Progress in Palliative Care 2012 Vol. 20.2 Chapter 3 063 Effects of spiritual care training on healthcare professionals and patients in palliative trajectories: a systematic review Submitted Palliative Medicine July 2017 Chapter 4 095 Training Spiritual Care in Palliative Care in Teaching Hospitals in the Netherlands: A Multicentre Trial Published, Journal of Research Interprofessional Practice and Education, Vol. 6.1, March 2016. Chapter 5 121 Training hospital staff on spiritual care in palliative care influences patient-reported outcomes. Results of a quasi-experimental study Published, Palliative Medicine First Online 2016, November 9 Learning spiritual care in Dutch hospitals Chapter 6 147 Multidisciplinary training on spiritual care in palliative care improves the attitudes and competencies of hospital medical staff: Results of a quasi-experimental study Published American Journal of Hospice and Palliative Medicine, Online 2017, February 14 Chapter 7 173 Improving Spiritual Care in Hospitals in the Netherlands: What Do Health Care Chaplains Involved in an Action-Research Study Report? Accepted October 2017 Journal of Healthcare Chaplaincy Chapter 8 203 General discussion Epilogue Blessed with talents 225 Summary 233 Samenvatting 243 Dankwoord en Curriculum Vitae 253 Prologue. Travelling companion and journeyman Learning spiritual care in Dutch hospitals Prologue. Travelling companion and journeyman Al dat hout bij de haard voor één vuur warmte vergt jaren groei willem hussem1 When I moved into my office in the newest section of the Leeuwar- den Medical Centre in 2005 I gave this this poem a prominent and permanent place. It can be interpreted in many ways, depending on the reader’s situation in life. In this office I was going to receive pa- tients and their families, if I was not going to meet them on the wards. But it was also going to be a space to meet and work with colleagues: nurses, doctors, paramedics, fellow healthcare chaplains, ministers and pastors. I was looking for a balance between profes- sionalism, art, poetry and symbols. I placed the poem so that it could be one of the first things that struck a visitor – for one it was a greet- ing, for another a confirmation of an insight gained, for a third it might be an encouragement not to give up. For myself it also referred to the spiritual baggage I was car- rying at the moment when I chose this new path: healthcare chaplain in an ambitious, top-tier clinical center. Trained as a theologian I was aware of the richness and fragility of the Judeo-Christian tradition as 1 Translation: all that wood/near the fireplace/for just one fire/warmth takes/years of growth. From: Schaduw van de hand, Amsterdam 1965. 8 Prologue an almost limitless storeroom of wisdom and understanding. My experience as a preacher and spiritual caregiver in geriatric care had made me familiar with people’s search for meaning, significance, inspiration and faith when faced with life’s great challenges. That expertise, including the practical and philosophical wisdom of my tradition were like a pile of firewood, waiting for the challenge to make a difference by serving as health care chaplain in this temple of modern health care. I saw myself as a professional, equipped with the language of one of the great spiritual traditions, ready to contribute to keeping the fires burning, in a temple where the priests and priestesses wear white coats and preach a great confidence in evi- dence-based medicine. As a health care chaplain in geriatric care and psycho- geriatrics I had amassed enough self-confidence to meet that chal- lenge. I had become impressed on the one hand by the effects I could have as a health care chaplain on the quality of care for and the well- being of residents and clients, but also on the other hand by the hard effort it took in conversations with management or other disciplines to express clearly what it was exactly that I did differently from the social worker or the psychologist. The four-dimensional definition of palliative care offered me a substantive concept of care that via the term ‘spirituality/spiritual’ presented a framework that united the specific contribution of my area of expertise with the implicit dimen- sion of our work in health care. A year later I was given the formal assignment to explore ways to improve palliative care in the hospital as a project manager. The year 2006 proved crucial. First, in January my new role took me to the Galgenwaard stadium in Utrecht, to attend the presentation of Palliatieve zorg, Richtlijnen voor de praktijk (Pallia- tive Care, Guidelines for daily practice), the first national document combining directives for the practice of palliative care. A quick glance at the table of contents caused some disappointment: appar- ently there was no national consensus yet about what caregivers might understand by ‘spirituality in palliative care’. On the spot it 9 Learning spiritual care in Dutch hospitals turned out that I shared this disappointment with Marijke Wulp from Agora. Then in May of that year, during the Teaching the teachers palliative care course offered by the Leerhuizen Palliatieve zorg Rot- terdam, I met Ruthmarijke Smeding. Her enthousiasm and interna- tional experience in palliative care made me confide ‘I wish I could take such a course exclusively with spiritual caregivers, to search for a consensus on the concept ‘spirituality in palliative care’. Her will- ingness, together with Erhard Weiher’s, to share their years of expe- rience with exactly that type of course in Germany resulted in the masterclass ‘Spirituality and spiritual care in palliative care’. That first masterclass, in 2007, brought me together with others who apparently shared the same questions, for instance my colleague Marinus van den Berg, who had written about the search for mean- ing in palliative care. I renewed my friendship with Carlo Leget, who in that first masterclass taught us about his Ars Moriendi. As it turned out, in that same year the foundation was also laid for Agora’s initia- tive to set up a taskforce ‘Guideline for spirituality (later: spiritual care)’, to which I received an invitation. Challenged at the start of that first masterclass to sketch the then current situation regarding spiritual care, I chose two meta- phors, ‘reisgezel’ (travelling companion) and ‘meesterknecht’ (jour- neyman), by which to position our expertise within palliative care. In my function I see myself essentially as a travelling companion to pa- tients (and their loved ones) on a unique stretch of their journey, with the patient on the one hand teaching me very concretely how an individual can react to the challenges posed by life and its approach- ing end, and on the other playing the pupil asking for and receiving care; here, the spiritual caregiver can at most try to facilitate the patient’s learning process, or growth, from a modest position as journeyman (an advanced apprentice). Of course I also had the poem by Willem Hussem in mind: this modesty is based on the realization that warmth sometimes takes years to grow. At the same time, this advanced apprentice is an aca- demically trained professional, familiar with one of the great spiritual 10 Prologue traditions, who – like the journeyman in the medieval guilds – is able to deliver masterpieces by himself: an aspiring master craftsman. The Dutch word ‘meesterknecht’ however, is also used as a metaphor in cycling for a rider who is actually good enough to win the Tour but unquestioningly serves and supports his team leader as a ‘lieutenant’ in the latter’s quest for victory. In that sense, as a lieutenant, the health care chaplain is primarily in the service of the patient (and those near to him/her) as the team leader, but secondly also serves the doctors, nurses and other caregivers in the effort to provide four-dimensional care. The masterclass proved not to be a one-off, but it enabled me and fellow-healthcare chaplains not only to share our questions and quest, but also to offer a joint contribution to the first concepts of a guideline for spiritual care. Around the time the first version of the guideline concept, at the comment stage, was published on internet in 2009, I attended the 15th World Congres of the European Associa- tion for Palliative Care in Vienna together with Carlo Leget and Ma- rijke Wulp. It was there that I realized that the reality of palliative care in my own hospital was not immediately going to change on the basis of one guideline. Both in my roles as a project manager, and health care chaplain I felt a lack of evidence based implementation methods for spiritual care. We realized then and there that these questions were also relevant in other European countries, albeit in quite different cultur- al and spiritual constellations, but that there was no structure within which we could share expertise and experiences. The idea to start a joint initiative towards a Taskforce Spiritual Care within the EAPC from the Netherlands coincided with my realizing that in my own hospital the next steps could only be taken in the framework of aca- demic research. My decision to undertake this research project myself was not exactly obvious. On the contrary, people tried to dissuade me: wasn’t my preferred habitat that of daily practice rather than academ- ic research? A correct observation, but it seemed to me that this was 11 Learning spiritual care in Dutch hospitals the only way to bridge the gap between health care chaplains as the representatives of the great spiritual traditions and the white-clad priests and priestesses of modern health care, if together we were to keep the fires of person-centered, compassionate health care burning. If this meant entering the woods on a path I had not trodden before, so be it. Toe ‘j klein waarn dacht ie der nooit bij nao As ’t kaold was buuten dan was ’t binnen warm Mar nou moe ‘j ’t zölf doen, ’t blef strabenskaold A’j zitten blieben zunder te stoken A’j t nie dreuge naost de deur hebben liggen Dan moe’j ’t bos in, soms diep ’t bos in Veur holt veur op ’t vuur Veur holt veur op ’t vuur Daniël Lohues 2 Joep van de Geer Franeker, June 2017. 2 From the lyrics of ‘Holt veur op ‘t vuur’ by Daniel Lohues, in eastern Dutch dialect: When you were small you took it for granted:/When it was cold outside, it was warm inside. /Now, however, it is your own responsibility, it remains freezing cold, / if you just keep sitting without lighting a fire. If you don’t have a pile dried next to the door,/You’ll need to go into the woods, sometimes deep into the wood,/ for wood for the fire, for wood for the fire. From the album: Hout moet, 2011. 12 Introduction 1 Learning spiritual care in Dutch hospitals Chapter 1. Introduction This thesis reports the results from a multicentre action research study that was initiated in the Medical Centre Leeuwarden in which a pilot training on spiritual care in palliative care was implemented by local trained hospital chaplains in 8 Dutch teaching hospitals. This mixed methods study explored health care chaplains’ potential con- tributions to palliative care improvement programmes in Dutch gen- eral hospitals. The primary research questions included the following. How can chaplains teach doctors and nurses to hear and see what is existentially and spiritually at stake for patients and their proxies, who are confronted with life limiting disease(s) in treatment and care? When health care professionals are trained by specialists on this dimension of care (their local hospital chaplains), does training im- prove their communication skills and competencies? Finally, will patients experience better care from their multidisciplinary teams when attention is given to their spiritual and existential needs? The ‘Background’ section of this introductory chapter begins with (a.) an international perspective on palliative care, which is followed by (b.) a description of the development of palliative care in Dutch health care based on the definition of the World Health Or- ganization (WHO) and the increased attention to spiritual care in palliative care. Then, (c.) we examine this development in the inter- national context of global developments on spirituality in palliative care and describe (d.) how attention for spiritual care increased in the Netherlands, prior to (e.) summarizing the core concepts of the first Dutch multidisciplinary guidelines for spiritual care in palliative care. In the ‘Implementation of multidisciplinary spiritual care’ section, we explain the factors that are critical for successfully devel- oping spiritual care and the specific challenges of providing training for spiritual care. Next, we describe our methods, aims and research questions. 14