Places of Farewell: A liminality informed exploration of parents’ narratives when their child’s death is expected

The purpose of this research was to explore the parent’s choice of place for the death of a child with a life limiting or life-threatening condition, focusing on children who had died from a non-oncological diagnosis, and to consider this through the process of liminality. Parents of children whose deaths were sudden and unexpected (accident, suicide, murder) were not included. The research question explored was: “How does the process of liminality impact upon the narratives of parents, and their choices when considering the place of death for their child?”.
Place of death is considered to be a key indicator in evaluating the quality of end-of-life care and is a factor in a good death. For health care professionals (HCPs) working in palliative care, the importance of enabling the dying person to be in their preferred place of death is understood as a fundamental factor in the experience of a good death. Whilst there are differences in opinion about what defines a good death, core elements include being free from pain, in control of symptoms and in an environment that is aligned with the wishes of the dying person and their family. It is also generally accepted that the concept of a good death refers to a series of events rather than a single occurrence. These factors strongly influence the choice of the preferred place of death, and whilst the physical place of death is a fundamental factor, its importance is variable depending upon the level of symptom control. Whilst ‘place’ usually refers to a physical location, ‘space’ is imbued with socio-cultural meanings that we construct around places, i.e., the purpose and perception of a place changes based on meanings given to it. Diagnosis appears to impact upon the choice of place, and for a child with complex care needs, this place tends to be chosen by the parent(s). Although most expected child deaths occur in hospitals, there is an assumption in clinical practice that home is the preferred place.
For some families, home is the place of choice, however, whilst home is familiar and loved, it can also feel unsafe if there is no medical or nursing support that can be easily accessed. Hospices aim to provide a home-like environment, combining comfort and safety; whereas for some families, the hospital ward is familiar and safe, the staff are known, and the routines provide security.
Liminality denotes periods of transition and transformation experienced throughout life, wherein individuals move from one socially recognised status to another—for example, from being a parent to becoming a bereaved parent. These transitional phases are typically framed by pre-liminal and post-liminal states; however, the delineation of these stages may vary depending on the individual and their social context. This study examines the liminal experience of grief as conveyed through parental narratives, focusing on the existential in-betweenness of their identities—between a life once structured and defined by the care of their child, and a life that no longer requires this role.
This study used an ethnophenomenological approach to explore the stories of parents in relation to their experiences of their child’s end of life. The telling of stories can be done in various ways and this study was interested in both visual and verbal narratives. Eight bereaved parents were interviewed in seven interviews (one interview involved both parents), about eight children (one mother spoke about the deaths of two of her children). The data was collected between September 2021 and May 2022. Eight themes were highlighted: 1. Importance of the place of death; 2. Home as a safe place; 3. Feelings of guilt; 4. The feeling of physicality; 5. The feeling of continued presence; 6. The importance of legacy; 7. Feeling of community; 8. The importance of names.
The findings of this study show that where death has not happened in the place of choice, the reasons can be complex and include staff anxiety about transferring a child; parents not believing that their child was dying as they (the child) had presented like this before and had recovered; parental concerns about clinical support in the home and how easily support services could access the house, if they were required. A significant finding is that the importance of the place of death can move to the place where the family are last able to spend time with their child after they have died.