Experiences of the dead body for bereaved relatives in palliative care
A blog post written by Dr. Jane Mowll
A vital part of palliative care happens after a death. This includes the care provided to the body of the person who has died and, in the care, and support of the family members who mourn them. Palliative care clinicians’, nurses’, social workers, and other health care providers are intimately involved in the immediate aftermath in providing support and linking the family to bereavement services. Post death care also involves caring for and managing the deceased body.
Research has explored the support from social workers and other care providers for family members in viewing or not viewing the body in the wake of sudden death (Mowll, 2017). Yet there is remarkably little research exploring the experiences of family members in seeing or caring for their relative’s body in the immediate aftermath of a death in palliative care. Our recent research project (Mowll, Bindley,Lobb, Sanderson, & MacLeoad, 2022) explored the experiences and meanings of family members time with the body at home / residential aged care (RACF) and in formal care facilities (palliative care unit) after the death.
Findings from the research along with social work practice experience tells us that:
- the body of the person who died has dual meanings for family members. Family members hold both a sense of the body as the person who they want to be with, talk to, touch, hold, and care for, and as ‘just a body’, that now needs to be relinquished.
- in contrast to sudden death, the ‘long farewell’ of palliative care means some family members may not want to spend long with their relative’s body after they have died, and some may not want to see the body at all.
- at the same time, having time with the body is very important for some family members. This includes time to be alone with the body and time for the family to be together with the body, including children and grandchildren. It is important to create a relaxed atmosphere so the family can go in and out of the room with the body and share rituals and stories.
- some family members may want to wash, dress, and care for the body themselves, or may want choice around whether the body is physically cared for. They may want to be involved in witnessing the body being removed from the place of death, help carry the body, or accompany the body to the funeral home/ place of burial or cremation.
- social workers and other care personnel can provide guidance and options in caring for the body at home, RACF, or in the inpatient unit.
- it is good practice to ask all families about their family and cultural care practices and rituals and provide choice and support for their decisions.
- some family members may want guidance about what is possible, and this may include facilitating the family to have knowledge about how to keep the body at home, even overnight, and may need consideration of funeral services that can assist with this, for example http://liferites.com.au/cool-beds
Palliative care services for the family do not end with the death of the patient but continue with the provision of bereavement support. An important consideration of this support is ensuring support in providing choices around care of and time with the body after the death.
References
Mowll, J., Bindley, K., Lobb, E. A., Sanderson, C., & MacLeod, R. M. (2022). I dressed her up in her best dress: The experiences of the dead body for bereaved relatives in the context of palliative care. SSM-Qualitative Research in Health, 2, 100058.Open access link to article: https://doi.org/10.1016/j.ssmqr.2022.100058
Mowll, J. (2017). Supporting family members to view the body after a violent or sudden death: A role for social work. Journal of Social Work in End-of-Life & Palliative Care, 13(2-3), 94-112.
Dr. Jane Mowll,
School of Social Sciences, University of NSW
j.mowll@unsw.edu.au