Abstract
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.
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Notes
- 1.
Clients of hospices can be defined as persons “for whom a treatment in a clinic is not, or no longer, necessary and who cannot be cared for adequately at home or in a care home, and who have special needs in terms of care” (Müller-Busch 2012: 95). This quote reflects pretty well the hierarchy of choices for dying persons: When they need to, but only when they need to, they should be treated in clinics; if this is avoidable, they should receive care at home; and if this is not possible, they should be cared for in care homes. Hospices are not the default place for dying, but rather the option for persons who need special care that they cannot get elsewhere, and who are decidedly close to exitus.
- 2.
The need for a network of persons who can competently assist in terms of care, medical assistance, pain drug supply, and emotional needs is also reflected in general guidelines of palliative care: Seeger (2007: 11) stresses that “dying does not always take place during service hours” (transl. by the author).
- 3.
On current recommendations how German doctors should deal with dying patients holistically, see Müller-Busch (2012: 104), Wiesing (2012). On the meaning of involved non-dying persons for dying persons see e.g. Wasner (2012). On current recommendations that reflect ideals of how palliative care should proceed, see Städtler-Mach (2012).
- 4.
For a detailed description on the development of different caring opportunities for dying persons in Germany, see Müller-Busch (2012). For guidelines on how dying persons should be treated, see Seeger (2007). For the importance of place in terms of experiencing a good dying, see also studies on dying in different cultures: E.g. Stonington (2012) describes persons who are rushed home in emergency vehicles to be allowed to die at home in Thailand; Long (2004) mentions the importance of space and familial accompanying of dying persons in the US and Japan; see also Seale & Van der Geest (2004) for a comparative approach to conditions of good dying interculturally.
- 5.
This general conviction also reflects in different contributions on dying in Germany, e.g. the Bertelsmann foundation study (2015), Seeger (2007) or Borasio (2012).
- 6.
The exact numbers are hard to ascertain, but have been repeatedly investigated, showing how important the issue of place is for dying and non-dying persons in contemporary Germany. To add a few more studies on this topic: Sauer et al. (2015) say 29% of Germans would die at home, though they rely on slightly older data sources. However, they predict a trend of more people dying in institutions within the next years, foremostly due to demographic changes (more and more people get older and older, and elderly people are likely to live in an institution) and due to changing causes of dying (more and more people die in old age of illnesses that require intensive care within an institution). Klinkhammer (2012) speaks of 68% of Germans (non-dying) who want to die at home, and of 25% of Germans as actually dying at home.
- 7.
This perspective is no objective judgement about the abilities of relatives or professionals to care for dying persons adequately. Complaints about possibly bad care only reflect a common fear which several dying persons showed. At times, the assumed inability of relatives or professionals to perform good care was grounded in personal conflicts and prejudices (e.g. “these young women are always so lazy and sloppy”, an interviewee said about her grandchild who offered care; “those nurses are surely rude and push me around”, a short-term contact person assumed about hospice nurses she did not even know).
- 8.
For international reflections about the ‘denial of death thesis’ and a critique of this topos, see e.g. Gilmore et al. (2013), Zimmermann & Rodin (2004).
- 9.
Expressions which are highly loaded with negative moral associations in Germany: Firstly, due to the history of deportation of Jews during the Third Reich with the aim of murdering them. Secondly, currently possessing an additional negative ascription, because of intra-European discussions about deporting refugees and migrants back to their home countries where they may likely face war, lack of prospects, poverty, or related threats.
- 10.
For a short anthropological reflection on the topos in the so-called Western world saying that dying in institutions does not serve the needs of dying persons well, see Kaufman & Morgan (2005: 372). For examples of contributions that assume moral difficulties within societies that let many persons die in institutions, see Ariès (1980), Glaser & Strauss (1965), Nassehi & Weber (1989), Nassehi (1992). For studies that hint especially at the difficulties to apply cultural ideals of dying in caring institutions, see e.g. Kayser-Jones (2002), Dreßke (2005). For a sociological study of hospice home care services as hybrid combinations of institutionalized care for dying persons taking place in their own homes, see von Hayek (2006).
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Menzfeld, M. (2018). First experiences as a dying person. In: Anthropology of Dying. Springer VS, Wiesbaden. https://doi.org/10.1007/978-3-658-19826-8_4
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DOI: https://doi.org/10.1007/978-3-658-19826-8_4
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