Help me duizend doden sterven! Pastoraaltheologisch onderzoek naar de begeleiding van mensen met kanker die doodsgerelateerde angst ervaren

Summary In everyday life, few people are concerned about their own death. They do know that everybody is mortal, but often live under the illusion that mortality concerns others and not themselves. This illusion is broken when people learn they have cancer. After all, the diagnosis of a life-threatening illness changes the theoretical knowledge that everyone dies eventually into the personal experience that I can die too. For a number of people, this awareness comes with anxiety. On the one hand, people need to know how to live through and cope with this anxiety alone. No one can ever take another persons place to undergo or process the other persons anxiety. On the other hand, care providers play an important role in coping with anxiety. Through their presence and communication, they can encourage or inhibit the ability to cope. This is why we feel challenged to offer a response to the research question: What does professional pastoral care of people with cancer who have death-related anxiety actually consist of? In this thesis, we will respond to this central research question with an answer to three sub-questions. In the first part of the thesis, we looked for an answer to the first research question: How do people with cancer experience death-related anxiety? In doing so, we ascertained that death-related anxiety in people with cancer is not always able to be perceived. As such, this anxiety sometimes remains hidden to pastors as well. In order to make this death-related anxiety more discernible and understandable, we researched what people with cancer are afraid of (description), where these anxiety originate (causes) and the ways in which the anxiety is manifested (effects). From here, we came to the conclusion that death-related anxiety is an extremely complex experience. This complex character is reflected in the first chapter, in the description of death-related anxiety in people with cancer. This description shows that behind the abstract death-related anxiety, dozens of death-related fears could be lurking. In our description, we have gathered and sorted these fears into twelve categories, differentiating on the basis of the various times (prior to death, at death and after death) and dimensions of being human (physical, psychic, spiritual and contextual dimensions). In the second chapter, the complexity of death-related anxiety is demonstrated through its causes. There are actually dozens of causes that can be assigned to death-related anxiety in people with cancer. These causes can be related to illness, context or personal. Therefore, death-related anxiety can, for example, be about worrisome symptoms (cancer), the concerned look of a care provider (hospital), or feelings of guilt stemming from unfulfilled longings (personal). In the third chapter, the complex character is shown in the consequences of death-related anxiety. The anxiety has an impact on the whole of the person with cancer; not just physical or psychic dimensions, but also spiritual and contextual dimensions. Another consequence of this impact is that death-related anxiety can be expressed in various indirect ways, such as getting cold chills (physical), the demonstration of aggressive behaviour towards care personal (psychic), pilgrimages to Lourdes (spiritual) or the withdrawal from social contact (context). In the second part of this thesis, we delved further into the following research question: Which pastoral-theological conceptual framework can be used in a constructive-critical relationship with the experience of death-related anxiety? This research question also posed a challenge. In pastoral theology, there are different pastoral models available that often include important aspects for professional pastoral care of people with death-related anxiety. In order to respond to the needs of these people, we need to first track down these aspects, and then bring them together into a model. A good starting point for doing this was found in Doris Nauers synthesis of different spiritual-care models. Her model is complex and multi-dimensional enough to be able to relate to the specific character of death-related anxiety. In order to understand Nauers model correctly, in the fourth chapter we first handed pastors an interpretation framework. As a result of this framework, it was possible in the fifth chapter to sketch Nauers soul-care vision (pastoral vision) in a critical manner. This vision is based on a theological and an anthropological fundament: the Holy Trinity is able to be experienced as Creator, Jesus Christ and Holy Ghost and human existence, from a physical, psychic (cognitive, emotional, creative and behavioural skills) and spiritual (spiritual antennas, openness to transcendence, the power of faith and inner sources of power) dimension, embedded in a life context (social, cultural, structural, political, historical, economic and ecological context). From that fundament, Nauer derived three equal dimensions of soul-care (pastoral care): spiritual-mystagogical, pastoral-psychological-beneficial and prophetic-critical dimensions. This led Nauer to consider soul-care not just as spiritual and/or faith-based help, but also as crisis and/or life help and as structural survival and/or liberation help. An important benefit of Nauers vision is her attention to the diaconal dimension of soul care. Nauer proposed that besides being directed at care of the individual, soul care was also directed at a critical survey of structures. This dimension cannot just be seen as an addition to existing Flemish-Dutch models. It also constitutes an important dimension in the care of people with death-related anxiety, as the context also plays an important role. A disadvantage of the Nauer model is the general theoretical character of it, where there is little development of the practical and therefore little focus given to any specific problems, such as the care of people with death-related anxiety. In the third part of the thesis, we try to fill this void by looking for an answer to the final research question: What strategies can be offered to hospital pastors able for the professional care of people with death-related anxiety? All too often, pastoral theology, as well as practice, lacks these strategies. A result of this is that pastors sometimes miss opportunities for adequate care of people with death-related anxiety. To respond to this problem, we developed approaches for professional pastoral care of people with cancer who experience death-related anxiety. To this effect, we began the sixth chapter by defining the target direction: making people feel that there is a way through their deepest anxiety to a life. We do not interpret this as meaning the removal of anxiety, but its transformation and the prevention of unnecessary increases in anxiety. Following this, in Chapter Seven, we developed indicators that are realised via approximately thirty strategies that are able to bring both, people with cancer and pastors, towards the goal direction. In order to preserve any form of system in the strategies, we developed three ways to life. The first way to life contains the offer of crisis and/or life care. This way, the interpersonal relationship is central and meets the physical and psychological needs of people with death-related anxiety. The indicators and the strategies that pastors can implement are: take a caring approach with people (let people feel that they are seen in their death-related anxiety; establish a sufficiently safe place in which to face and allow the anxiety; encourage people to speak about their death-related anxiety; reassure them of closeness), stand by people with customised help (divide the death-related anxiety into fears that are manageable; mobilise peoples sources of help and power; stimulate them to ask questions; support them in making medical-ethical and other decisions), let people tell their life story (encourage people to tell their story; where appropriate, link their story with that of God), support the subject and identity development (lift people up above their anxiety or sickness; support them in finding a new identity), tap into meaningful sources in peoples lives (look together with people for meaning in their further lives; support them in the search for meaning in their own deaths) and pay attention to body-related aspects of death-related anxiety (teach people to recognise and handle body-related signs of anxiety; pay attention to fear of pain and suffering). Individual spiritual and/or faith care is central to the second way to life. This is where the transcendental relation is promoted, through which arrive the spiritual needs of people with cancer who experience death-related anxiety. Pastors can apply the following indicators and strategies: turn to peoples image of God (explore the experience of a punishing God; let people speak out about their fears of being forsaken by God), keep the hope of people alive (create space for the hope of resurrection; hope with and for people), pay attention to real and unreal guilt (create space for unreal guilt; work on reconciling real guilt) and disclose and discover traces of God (ask people about their spiritual or faith-based experiences; look together for appropriate symbols or rituals). The third way to life contains social and/or structural care. By paying attention to the social system of people, pastors look for an answer to the social and structural needs of people with death-related anxiety. As such, pastors can keep the following indicators and strategies in the back of their heads: support the shared environment of people (focus on the anxiety of significant others; stimulate open and honest communication with children), extend meaningful networks (organise networks with people with death-related anxiety; organise networks around people with death-related anxiety) and work together on changing anxiety-strengthening structures (change anxiety-inducing processes; consider helping in the case of anxiety to be a social duty; keep people who are politically involved interested in people with death-related anxiety). The strategies listed do not represent a complete practical model. It is necessary for pastors to creatively translate them into practice. This means not only that pastors need to find a manner to make a multitude of strategies their own, but also fine-tune the strategies to the needs of specific people at specific times. Only in this manner is it possible for pastors to make their way through to the peoples deepest anxiety.

Jaar van publicatie:2013