Anticipation fatigue: The complex toll of preparing for dying and bereavement
An article written by Dr Nathan MacArthur, Specialist Grief Counsellor and Accredited Mental Health Social Worker, Sydney Grief Counselling Services
Helping relatives and carers prepare for a family member’s death is often seen as essential to enabling ‘good dying’ and facilitating adaptation in bereavement. However, engaging in preparedness for dying is complex. It requires having an awareness that someone will die in order to begin attending to practical tasks, such as completing advance care directives and wills. It also involves emotional and relational preparations, such as saying goodbye, resolving differences, and expressing gratitude.
As a counsellor, I regularly meet with people challenged by what it means to prepare for the death and absence of someone they love and care for. I was drawn to research this topic to shine a light on the complex, diverse and nuanced lived experiences I was hearing in my counselling room but rarely reading about in journal articles.
Drawing on interviews with 36 bereaved family members whose relatives had received palliative or residential aged care, our paper explores how families experience and perform preparedness in anticipation of a death. [1] The findings reveal that while families often strive to plan ahead by making funeral arrangements, having final conversations and fulfilling last wishes, the work of preparedness is far from straightforward.
We introduce the concept of anticipation fatigue to draw attention to the cumulative toll of striving to maintain a perpetual state of readiness - emotionally, practically and relationally – for the death of a family member.
Our participants described questioning how best to navigate contradictory expectations about what the future might hold, feeling guilty about having to initiate conversations about finances, and confusion over how to balance hope with an anticipation of imminent loss. In many cases, their efforts to prepare were thwarted by uncertain prognoses or the unpredictable undulations of illness. Some deaths occurred more suddenly than expected, others were preceded by multiple ‘false alarms’ that left families feeling emotionally drained.
Central to these challenges are the tensions between social expectations of being a ‘good’ carer and the realities of caregiving. Cultural norms and professionals often encourage and expect families to engage in preparedness. But this pressure may conflict with a felt need to hold onto hope, to not ‘give up’, or simply to stay present in the moment with the dying person.
The concept of anticipation fatigue captures the cumulative (dis)stress of this sometimes prolonged, and often ambiguous, state of waiting for dying. It invites us to rethink simplistic ideas of preparedness and to acknowledge the messy, emotional, and relational terrain of caring at end of life.
Our research highlights the diversity and complexities of family members’ lived experiences, nuancing our understandings about what it means to be prepared, to strive for a ‘good death’, or to grieve in anticipation. We call for research, palliative care and other healthcare providers to create space for the full range of care and end of life experiences. This may include educating families about the challenges of providing care in the context of unpredictable health trajectories, permission to acknowledge their own struggles, and opportunities to focus on the here and now of being with their loved one.
To learn more please read our article Caring at the end of life: Bereaved family members’ experiences of preparedness, readiness, and anticipation fatigue
Reference
- MacArthur ND, Kirby E, Mowll J. Caring at the end of life: Bereaved family members' experiences of preparedness, readiness, and anticipation fatigue. Soc Sci Med. 2025 Sep;380:118252. doi: 10.1016/j.socscimed.2025.118252.
Authors
Dr Nathan MacArthur
Specialist Grief Counsellor and Accredited Mental Health Social Worker
Sydney Grief Counselling Services