The first Czech perinatal hospice: Joint venture or competitive field?

Abstract

There is no legally established perinatal hospice in the Czech Republic. Several initiatives work towards launching an institution to support parents in the event of a fatal prenatal diagnosis or life‐limiting condition in their unborn baby. Parents use the label perinatal hospice as they subvert and transform the narrow legal and strictly medical framework for such institutions. Hospice care became a legitimate sector of care provision only recently. This study analyses four initiatives that strive to establish and formalise perinatal hospices in the Czech Republic, with a focus on the strategies these initiatives engage in to achieve change. A sociological qualitative empirical study (2017–2019) informs the findings. Initiatives vary in approach from cooperation to competition in being recognised as ‘the first perinatal hospice’. The study shows how such rhetoric is adopted to attract the funding required for sustainability. Community cooperation and involvement can, then, form a contra position.

Engaging in perinatal loss in the Czech Republic: Keen community and haphazard institutionalisation

“…Most initiatives challenging the status quo come from the bereaved and their communities scattered around the country (Šmídová 2019b, 2022). Healthcare lacks co-ordination with social services and other departments, and there is no critical debate about death, dying and the disposal of remains (Nešporová, 2011;Kotrlý, 2014;Šmídová, 2019a, 2022. However, change is slowly happening.…”

“…Such initiatives include Avast Foundation supporting palliative care for children and more recently a children's hospice (March 2021), and the perinatal palliative care online portal to support professions, which includes teambuilding measures (www.perinatalniztrata.cz/). These transformations legitimise inter-disciplinary and multi-paradigm approaches rather than strict bio-medical authoritative knowledge (Šmídová, 2022;Jordan, 1997). Yet there is still a lack of recognition of expert knowledge from other specialities and medical fields of expertise because of resistance, obstacles or marginalisation (Šmídová, 2019a;Illich, 2012;Jordan 1997).…”

“…Analysis shows the bereavement care community outside the PHS brings focuses on communication and the welfare of the bereaved. All this takes place in times of neo-liberal budget cuts affecting provision of care in various sectors of society even beyond the PHS (Speier et al, 2014;Slepičková et al, 2012;Kalvach et al, 2004;Šmídová, 2022). Cost of such care (not covered by public health insurance at the time of the research study) contrasts to the free PHS services.…”