Mira Menzfeld

Fieldwork with dying persons

“The mortality of human beings is at 100 per cent”, Prof. Raymond Voltz, the head of the palliative care unit being part of my field sites, humorously pointed out in late 2013. However, what it actually feels like to die is hard to grasp by looking at statistics and probabilities, or by asking non-dying persons what they think about dying. Nevertheless, contextualizing the situation of the research participants as well as the field sites with a few instances of quantitative data will help to get a better picture of how dying usually takes place in Western Germany. Subsequently, the organizational and institutional backgrounds of dying processes taking place in Germany will be sketched.

Emic perspectives on the course of dying

This chapter presents emic reflections about the reasons for receiving a terminal diagnosis that were figured out; how temporalities were perceived and evaluated; and how endings of dying processes actually took place. The extent to which dying can be enjoyed, explained, or even met with boredom may change throughout the course of dying. The considered reasons for dying can reach beyond biomedical explanations, and become enriched with punitive or balance-related explanations.

Dying as liminality in the making

The process of dying is widely acknowledged as a liminal situation (see e.g. Schroder 1986; Thompson 2007; Kaufman & Morgan 2005). Some characteristics which make pre-exital dying in Germany special agree with the classical concept of liminality introduced by Turner (1967). For example, we find a change of status by initiation; a betwixt-and-between state of ontological positioning; and conversions of roles and rules for liminal personae (Turner 1969). However, other aspects of liminality seem to be absent in dying. Most prominently, these are communitas (Turner 1974) amongst dying persons, and liminal guidance by an already initiated guide.

Cultural models of dying

Pre-exital dying in Germany, as a vital conjuncture, possesses certain culture-specific and historically embedded guidelines of action and meaning-making. In this chapter, I will argue that decisions and meaning-making in dying take place alongside specific cultural models (Shore 1996). The introduction of the concept of cultural models is followed by an exploration of what counts as a ‘good’ dying in Germany and beyond, according to the existing literature. Subsequently, I will propose my own addition to how dying ‘well’ can be conceptualized in the case of contemporary Germany: Dying in dignity, introduced as the umbrella model of dying ‘well’ in Germany, is the unquestionable aim of each person involved in a dying process, and the prerequisite of any ’good‘ dying. By drawing on examples out of my fieldwork, I intend to show that there seem to be two especially important models which form essential parts of dying in dignity – the cultural models of autonomy and serenity. Both can inspire one and the same thought or action and melt with each other, and they also might appear as two parallel ways leading to dying ‘well’. However, they can be interpreted as conflicting as well, and even one and the same model can result in two totally different interpretations concerning how to deal with a concrete situation.

First experiences as a dying person

In the following sections, the choice of care and living space will be discussed. The idea of dying at home, stated to be the preferred place to die by many non-dying persons, can lose its appeal for persons once they are actually dying. The immediate presence of doctors and carers in institutions gives many dying persons a feeling of security. Movements from one living place to another appear as threats to many dying persons. Besides, increasing difficulties in mobilizing oneself – e.g. for leisure activities or everyday errands – can sometimes result in attitudes of refusing to be mobile or mobilized. Needs and preferences in terms of how and where to live can crucially change during the dying process – and frequently, opinions about where and how to die in the best way change more than once.

Changing perceptions in dying

Being a dying person for an extended duration means existing under different circumstances than a non-dying person. Deciding what one wants to do with one’s very last days is simultaneously crucial, because there are no second chances; and yet extremely difficult, due to increasing weakness and changing perceptions of relevance. Getting weaker and dealing with restricted physical capacities has an impact on one’s identity as a sensory being. One’s own body might suddely appear to be a hostile stranger. Correctly perceiving the physical boundaries of oneself and locating the own position in space are not self-evident anymore. Seemingly stable preferences in terms of taste may differ, and a dying person has to redefine herself as a decreasingly sexually interesting and interested person. Medication and technical equipment may become close friends of persons who formerly regarded drugs and devices rather as foes of their autonomy. The activities and meetings which seem urgent and relevant may increasingly differ from what matters to non-dying persons. For the present situation of dying, but also retrospectively regarding one’s own biography, evaluations of lifestyle and importance may appear in a new light. These issues will be explored in the following subchapters.

How it feels to be a dying person

A person who received a terminal diagnosis is supposed to understand and cope with the fact that she will die, and is not just sick. This is seen as an integral part of dying, and also of dying with dignity (Voltz 2015; Roller 2015). However, what it actually means to be a dying person in terms of different status, and not only in terms of physical prognosis, is a highly uncertain and undefined field demanding individual negotiation. A crucial issue that came up during research was therefore whether dying persons feel, or do not feel, different from non-dying persons: In terms of self-conceptualizations, and also in terms of emotions (See subchapter 5.2 for a definition of emotions). Basically, dying persons do not necessarily conceptualize themselves as completely detached from the community of non-dying persons. They seldom claim that their situations were absolutely inaccessible to non-dying persons, and they do not necessarily perceive themselves to possess a totally different lived reality and personality than before they received the terminal diagnosis. At the same time, they might feel to be apart or different from non-dying ones because their lives are clearly limited, and their capabilities, everyday realities and possibilities change compared to non-dying persons. There are also some changes in experiences and expressions of emotions compared to non-dying persons: Some emotions are more adequate for dying persons than others, and some emotional states even seem rather incomprehensible to those who do not share the experience of dying.

When the dying do not feel tabooed: perspectives of the terminally ill in Western Germany

Abstract This paper primarily examines the perspectives of dying persons in Germany, in terms of if and when the dying feels lonely during their final weeks. The author contrasts emic perceptions with public discourses in regards to the non-dying ones possibly neglecting or tabooing the terminally ill. Secondly, the paper explores how and where the dying persons included in the study want to pass away. The dying individuals involved did not feel tabooed or ignored by non-dying persons. Dying at home did not necessarily remain the preferred option compared to dying at institutions. The author collected data between 2013 and 2015 in Western Germany, using long-term participant observation and interviews with individuals diagnosed as terminally ill.

Who are “the” Salafis?: Insights into lifeworlds of persons connected to Salafis(m) in North Rhine-Westphalia, Germany

This article explores the lifeworlds of so-called Salafi(st)s in North Rhine-Westphalia, Germany, by examining the ways their beliefs impact upon their everyday lives, identities, and religious practices. Based on participant observation, informal talks, and in-depth interviews conducted with persons visiting mosques ascribed to apolitical “puristic Salafism” ( salafiyya ʿilmiyya ), the article is intended to shed light on their ways of life, convictions, and everyday practices by presenting four case studies. The subjects of our case studies show a highly heterogeneous and individual synthesis of personal guidelines for conducting what they call a “good Muslim life”, according to their translation of the role model of the salaf ṣāliḥ (“the pious ancestors”, i.e. the first three generations of Muslims) as well as a heterogeneity in their emic identity ascription and definition of what Salafism means to them.