When someone is nearing the end of life, grief often begins long before the final breath is taken. Families, friends and even the person who is dying may find themselves living with a deep sadness, fear or sense of loss well in advance of death. This is called anticipatory grief, and while it is common, it is not always well understood.
Rather than being something unusual, anticipatory grief is a natural response to the awareness that change and loss are coming. Researchers such as Therese Rando have long described it as a valid and distinct form of grief that can affect both individuals and families before death occurs. Yet because it happens before a death, many people do not know how to name it, or they question whether they are “grieving too soon.”
Understanding anticipatory grief
Anticipatory grief is different from the grief that follows death. It is not only sadness but also a complex mix of emotions that shift and change over time. People may feel anxious about what the future will hold, guilty for wishing that suffering might end or even a strange sense of relief when they see their loved one at peace in small moments. At the same time, there can be laughter, gratitude and moments of tenderness that sit alongside sorrow.
One of the most challenging aspects is the sense of living in two worlds. Families often feel as if they are caring and loving in the present while already mourning what lies ahead. This tension can be exhausting and confusing, and it often looks different for each person involved. One family member may become more focused on planning and preparing, while another withdraws or avoids talking about the situation at all. Both responses are normal, but they can sometimes cause friction and misunderstanding.
The US National Cancer Institute also notes that anticipatory grief can include not just emotional pain, but physical symptoms like poor sleep, lack of concentration and changes in appetite – further proof that grief before death is both real and impactful.
Why naming it matters
When grief before death is left unrecognised, people can feel isolated and even ashamed of their feelings. They may stay silent, worried that others will see them as negative or unsupportive. Some convince themselves that they must “stay strong,” only to find that the unspoken emotions weigh heavily on them.
Naming and acknowledging anticipatory grief allows people to realise they are not alone. It opens up the possibility for conversation, memory sharing and honest expression. Instead of trying to hide their sadness, families can find ways to carry it together. In doing so, they often discover a deeper sense of connection with the person they love and with each other.
The role of an End of Life Doula
End of Life Doulas (EOLDs) are well placed to support people through anticipatory grief. Our role is not to diagnose or provide therapy, but to walk alongside families as they navigate this uncertain space. What we offer is presence – the willingness to sit with the full range of emotions without judgement and without rushing anyone through them.
This presence can take many forms. Sometimes it means listening as a family member shares the guilt they feel about wanting their loved one’s suffering to end. Other times it involves helping the person who is dying talk about their legacy, their memories or the milestones they know they will not see. In these conversations, doulas provide gentle reassurance that these feelings are not only valid but human.
We may also help families create simple rituals or practices that give shape to their grief. Lighting a candle at the end of the day, writing a journal together or gathering for a small moment of reflection can help people acknowledge what they are carrying. These small acts provide structure and comfort, reminding people that they are not alone in their experience.
Grief for the dying person
Anticipatory grief is not just felt by those around the bedside. The person who is dying may also grieve the life they are leaving behind – the roles they held, the identity they carried and the plans that will remain unfinished. There may be sadness for milestones they will not reach or the future they will not see.
EOLDs can support this grief by encouraging reflection and storytelling. For some, this might mean recording memories or writing letters to loved ones. For others, it may simply be talking openly about their fears and hopes. By creating space for these conversations, doulas help people feel fully acknowledged in their humanity, right to the very end.
Supporting the wider circle of care
Grief extends beyond the immediate family. Friends, neighbours, colleagues and chosen family also experience the ripple effects of impending loss. This is especially true in LGBTQ+ communities, where circles of care may look different from traditional family structures.
EOLDs recognise and honour these wider networks, ensuring that everyone who holds a meaningful connection has space to be included. By doing so, we help to build a circle of support around the dying person that reflects the reality of their life and relationships.
Anticipatory grief in the 95%
As Professor Allan Kellehear reminds us, medical care only addresses about 5% of what people need at the end of life. The other 95% is made up of emotional, spiritual, social and relational needs. Anticipatory grief sits firmly in that 95%. While clinical teams focus on managing pain and symptoms, EOLDs help families navigate the human experience of approaching loss.
This framing highlights why doulas are not an “optional extra” but a meaningful part of holistic care. By tending to anticipatory grief, we complement the work of health professionals and strengthen the support families receive.
Breaking down myths
Because anticipatory grief is not always openly discussed, several myths persist. Some believe you should not grieve until after death, yet grief begins as soon as loss becomes real. Others think grieving early makes the grief after death easier, but in truth, the two experiences are different and equally significant. Another common belief is that talking about death makes things worse. In reality, open and gentle conversations usually lessen fear and create a sense of closeness.
By challenging these myths, EOLDs help normalise grief as a natural and shared human experience.
Finding meaning in the midst of grief
While nothing can remove the pain of anticipatory grief, support can make it more bearable. When families and individuals are given permission to grieve openly, they are also given the chance to connect more deeply. Many discover that alongside sadness, there is gratitude – for the moments still available, for the chance to say what matters and for the love that endures even in the face of loss.
End of Life Doulas do not take the grief away. What we do is walk alongside people, helping them to carry it, to name it and to find meaning within it. In doing so, we remind families and individuals that they are not alone and that even in grief, there can be connection, presence, and love.
About the Author
Shannon Beresford is the Director of Your Path Guide Pty Ltd, an Adelaide-based practice specialising in End of Life Doula services, sound therapy and travel. Shannon holds the Certificate IV in End-of-Life Doula Services and is the Chair of HELD Australia Ltd, the peak body for those working or supporting within the holistic end-of-life and death care spaces. He also volunteers in the Central Adelaide Palliative Care Service (CAPCS).
References
- Kellehear, A. (2013). Compassionate Communities: End-of-Life Care as Everyone’s Responsibility. Routledge.
- National Cancer Institute (US). (2018). Anticipatory Grief and Mourning. Retrieved from: https://www.cancer.gov/about-cancer/advanced-cancer/coping/anticipatory-grief-pdq
- Rando, T. (2000). Clinical Dimensions of Anticipatory Mourning. Champaign, IL: Research Press.
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