One of the most significant aspects of ensuring quality care during a loved one's end-of-life journey is advance care planning. Yet, it’s a topic many families hesitate to address until it’s too late, often leading to painful emotional and practical consequences. Naomi Lettieri, from Anam Cara House Colac, has seen this firsthand. “When there’s no advance care plan in place, it places a significant emotional burden on both the family and healthcare professionals," she explains. Without clarity, both sides find themselves scrambling under pressure, making choices that feel rushed and out of their control.

The price of no plan

When an advance care plan is missing, families are left with difficult decisions made in a state of stress, says Naomi. “Without clarity, we’re pulling together clinical information quickly and making choices under pressure. That can be incredibly overwhelming,” she explains. The emotional strain isn’t just momentary—it lingers, compounding the grieving process. “For the next of kin, the absence of a plan can complicate bereavement long after the fact,” Naomi notes. The ripple effect of an unaddressed plan becomes clear: decisions made in the chaos of crisis often leave families struggling emotionally long after their loved one has passed.

Taboo, a barrier to planning

Despite the emotional and practical risks, the biggest obstacle to proper advance care planning is often societal reluctance. Naomi believes the root cause lies in the cultural taboo surrounding death. “Death is a conversation we often avoid, and that’s the barrier families face when trying to plan,” she says. For many, broaching the topic of end-of-life care feels uncomfortable, and they brush it aside. Naomi often hears from families who want to talk but are met with resistance. “They say, ‘I want to discuss this, but my family doesn’t want to. They think it’s depressing,’” she explains.

This reluctance, though born of fear, also stems from a lack of understanding about what an end-of-life plan entails. “It’s not just fear, but also a lack of death literacy,” Naomi reflects. Many people don’t know what questions to ask until they’re already faced with a crisis. By that time, it’s often too late to make informed decisions.

More than just end-of-life-care

One of the biggest misconceptions Naomi confronts is the limited view people have of palliative care. Many assume palliative care only begins at the end of life. “But that’s not the case,” Naomi says. “Palliative care starts from the moment someone is diagnosed, focusing on improving the quality of life from that point onward.” Early palliative care can alleviate suffering in ways families might not realise are possible. Naomi stresses that palliative care isn’t just for the final days—it’s a journey that can improve the quality of life for months or even years.

At Anam Cara House, Naomi and her team embrace a holistic approach, starting care early to ensure individuals and families have the support they need along the way. “Even brief respite care can drastically enhance a person’s quality of life,” Naomi shares. Offering respite allows families to take much-needed breaks, recharging while their loved one receives quality care. By supporting both patients and their families early on, healthcare professionals help reduce stress and enhance the experience of care, creating a more peaceful journey for everyone involved.

An holistic approach to grief

Grief is an inevitable part of life, yet too often, it’s only acknowledged when a loved one has passed. But Naomi believes grief should be addressed long before that. “We begin discussing bereavement from the very first guest assessment,” she explains. This proactive approach ensures that families receive the emotional and psychological support they need well ahead of time. “Grief is normal, and it’s part of the process,” she says, emphasising that normalising this emotional response helps families navigate their feelings without fear of judgment.

Palliative care doesn’t end at the death of a loved one; it continues, extending support to grieving families throughout the entire process. “Good bereavement care begins before the end of life, giving families the space to express their worries and fears,” Naomi adds. Knowing they’re supported throughout the entire journey can significantly ease the weight of grief.

Naomi’s team also ensures families receive ongoing care after the loss. “We offer carer counselling, follow-up calls, and connect families with local services to help them through the mourning process,” she says. This holistic support helps prevent feelings of isolation and ensures that the emotional journey toward healing doesn’t have to be faced alone.