Safe end-of-life care for trauma survivors requires a light touch and a long reach, says Palliative Care Nurse Practitioner Nikki Johnston.

In the days before Nikki Johnston’s great-grandmother, Grace, died at the age of 92, she would fight off invisible attackers with her walking stick.

“Grace had five children and was married to a violent man in the 1930s. She made a courageous decision to leave him, raising her children in group houses,” says Nikki, who at the time of Grace’s death was just beginning her career as a registered nurse.

Now a palliative care nurse practitioner who has spent years observing people in their final days, Nikki has a clearer understanding of what Grace was experiencing: she was reliving trauma near death.

Nikki’s PhD research into safe end- of-life care for trauma survivors was prompted by her desire to understand why some aged care residents die peacefully, while others experience heightened distress, physical symptoms, and resistance to care.

“I started noticing a pattern,” Nikki told an audience of NSWNMA members at our recent Professional Day. “Residents who died with greater distress often had a history of trauma, frequently hidden and almost never documented.”

An elder from the stolen generations panicked during showers, reliving childhood abuse. A mother whose 18-month-old son had died in a domestic accident a decade earlier experienced inexplicable pain before her death.

For trauma survivors, the end- of-life can mean a return to feelings of helplessness and fear. In cases involving dementia, the situation is compounded.

“Dementia can exacerbate trauma symptoms,” Nikki says. “And trauma increases the risk of developing dementia.”

Older women, for whom dementia is the leading cause of death, are particularly at risk of reliving trauma near death.

“Women and girls experience trauma twice as often as males – they have a higher incidence of being victims of violence and sexual abuse.”

When someone near death shows agitation, refuses care, is aggressive or, alternatively, withdrawn, those behaviours are typically associated with dementia or psychological decline, said Nikki.

Instead, she suggests that we challenge this framing. “Instead of behaviours, let’s change the narrative and call these ‘communications’: Communication of pain, fear, shame, loss of control, mistrust and powerlessness.”

CHANGING SYSTEMS, NOT PATIENTS

Nikki has been calling for systemic change in the way we support trauma survivors nearing death for more than a decade. While working in residential aged care in 2014, Nikki pioneered Palliative Care Needs Rounds, an evidence-based model, launched on a shoestring budget.

“Aged care staff were stressed, and residents were dying badly, with increased intervention and suffering. Families were distressed. Instead of reactive service, I wanted to create a proactive alternative, a model that had a light touch and a long reach.”

Palliative Care Needs Rounds consistently led to earlier identification of residents who were at risk of dying and improved quality of death. Residential aged care staff reported significant increases in confidence, knowledge and capacity in managing palliative care needs. Hospitalisations were reduced, allowing more residents to die in their preferred place of death.

Nikki says the pilot program influenced the Commonwealth Government’s decision to begin to invest in palliative care within residential aged care, commencing with a six-year funding program of $57.2 million commitment in the 2018 to 2019 federal budget. This national program has now been adopted in all states and territories.

Yet, for trauma survivors, especially those with dementia, access to palliative care remains limited. “Only 2.4 per cent of people with a dementia diagnosis access specialist palliative care, compared to 75 per cent of those with a terminal cancer diagnosis,” Nikki noted. “This is a stark inequity.”

“Let’s influence better end-of-life care for trauma survivors, ” Nikki urged. “Let’s be curious. Let’s lean in, be present. Trauma survivors deserve to die with dignity, just as others do.”

Transforming Gabby and Nancy’s end-of- life care

Gabby was 42 and had advanced cervical cancer. She avoided hospitals, resisted treatment, and experienced night terrors followed by pain crises. Health care workers labelled her difficult, but her care changed when a palliative nurse gently asked: “Gabby, have there been times in your life when you felt unsafe or in a situation that you had no control over, and you felt distressed?”

Gabby’s partner Sue revealed Gabby’s history of sexual and physical violence, resulting in the traumatic loss of her unborn child. Understanding that she was reliving this trauma near death reframed her symptoms, leading to more compassionate, trauma-informed care. Gabby chose to die in a palliative care unit, not a hospital, and passed peacefully.

In another case, Nancy, a 76-year-old woman with advanced dementia, became increasingly distressed, particularly during personal care. Her cries of “Stop, don’t hurt me” were initially seen as cognitive decline – until a nurse recognised them as trauma cues.

A family meeting revealed Nancy’s history of childhood sexual abuse. Her care was altered dramatically: only female staff were assigned, a night light was kept on, and her family remained by her side. With appropriate symptom management and safety in place, Nancy died peacefully eight days later.