Grief doesn’t always wait for death to arrive. It can begin quietly, unfolding in layers as we anticipate loss.
When someone enters palliative care, grief often walks beside them. Sometimes months, even years, before a death, families begin mourning who their loved one used to be, the future they’d planned together, and relationships that start to change shape.
At the recent OPCC conference, Chris Hall AM, CEO of Grief Australia, explored this complex terrain of anticipatory grief. His insights, alongside research presented by Dr Priyanka Vandersman from Flinders University on families in residential aged care, reveal how grief reshapes the entire care journey and why understanding it matters for everyone involved.
Anticipating grief
Research shows nearly half of family caregivers meet criteria for psychological distress at the very beginning of palliative care. The grief is already there; a quiet knowing of what’s to come while still showing up every day under the shadow of forthcoming loss.
It’s not just one loss either. Grief reveals itself in layers: the loss of who their loved one was, the loss of independence, the loss of shared experiences and routines, the loss of future plans.
For those in a caregiving role, there’s an additional dimension. Dr Vandersman’s research found that when loved ones transition into residential aged care, family caregivers often experience a deep sense of identity loss. One daughter described her mother’s placement as “devastating,” saying, “I saw my role as being her protector, her advocate, her person, and primary carer.”
When that role transfers to healthcare staff, it can feel like losing yourself while simultaneously preparing to lose the person you’re caring for. Statistics reveal the toll, with depression rates among caregivers ranging between 12 and 59 percent while anxiety rates hover between 30 and 55 percent.
The exhausting middle ground
One of the most psychologically demanding aspects of anticipatory grief is what Chris describes as ‘middle knowledge’. That liminal space where contradictory realities coexist.
Your head knows the medical facts. The prognosis. The inevitability of death. The timeline.
Your heart holds onto hope. Maybe even the possibility of a miracle.
It’s exhausting knowledge, yes, but it’s also protective, explains Chris. It allows the human mind to absorb devastating reality in manageable pieces rather than all at once. Awareness fluctuates. Families experience calm acceptance one moment, followed by surges of denial or desperate imaginings the next.
Chris shared a story of one man who sat quietly at his wife’s bedside, rarely speaking. Staff assumed he was disengaged, perhaps even in denial. But when someone gently invited him in, he began telling stories of their life together—how she loved to dance, the music she adored. He asked for her favourite songs to be played.
This man wasn’t in denial. He was holding the grief in manageable pieces, expressing his love in different registers across time.
Why those who struggle don’t seek help
Chris explains that how healthcare providers address anticipatory grief significantly shapes families’ experience. When clinicians articulate the unspoken and address anticipatory grief directly—naming realities, validating emotions, encouraging difficult conversations—families experience relief, reduced shame, and stronger bonds with care staff.
Yet he’s also observed that many people struggle with self-criticism around their grief. That self-criticism can compound distress, says Chris. “People are often highly critical of themselves,” he says. “They think they should be doing better.”
What’s more, those struggling most are often the least likely to seek support. “It’s just too painful,” he explains, noting that avoidance becomes a primary complication.
But there’s also a second barrier: often, people don’t believe help can make a difference. “They say, ‘You can’t give me back my child, my partner. What’s the point?’”
The work of waiting
Anticipatory grief has been described as ‘the work of waiting’, a time when caregivers juggle the practical demands of care with the emotional labour of loss. Many set aside their own needs, withdrawing socially as they pre-grieve while cherishing what time remains.
What families need during this period isn’t necessarily formal intervention, says Chris. When people are ready to engage, it helps to operate from a place of curiosity,” he says, “asking them to tell me what this experience is like.”
What helps during anticipatory grief
Building on this, Dr Vandersman’s research with families in residential aged care shows what meaningful support can look like in practice.
Communication timing really matters. One daughter, whose father was discharged from hospital back to the nursing home, recalled: “It wasn’t until the nursing home sat me down and said, ‘Your dad’s actually dying,’ that was a bit of a shock, because I didn’t think he had weeks left to live.”
She wished the hospital had prepared her for what was coming before the discharge. Later, when staff approached it differently, the experience shifted. “The manager had a conversation with me because my dad was dying, which was difficult… I knew I had to hear it, and it was very well done.”
Families also spoke about how rituals and collective remembrance helped them and staff process loss together. Carers brought meaningful items to honour the person who died, staff formed guards of honour, and memories were shared with other residents. One family even invited care staff to the funeral, recognising the shared grief and bond that had formed during care.
It’s moments of connection like these that reveal how anticipatory grief is shared, not solitary.
Grief isn’t about letting go
Good grief education forms a critical part in supporting anticipatory grief. “It can help people understand that maintaining connection doesn’t have to mean holding onto pain.”
It’s important to remember grief isn’t about “saying goodbye or letting go”, explains Chris. Rather, grief is a vehicle in which you can transition “from a relationship with physical presence to one of memory, and that can be a very active and engaging kind of relationship.”
From a clinical perspective, anticipatory grief challenges us to expand our understanding of when grief support truly begins. And as palliative care continues to evolve, recognising this earlier grief and shaping support around these needs is another step toward guiding people with compassion through end of life.
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Written by Sarah Vercoe.
This article was originally published by Palliative Care Australia on Thursday, November 27, 2025 and it has been republished here with permission.