Every patient is different, and their palliative care journey reflects that.

Here, one of our palliative care nurses shares a case study about a patient who presented unique challenges, and describes how she approached a solution…

‘Get out!’

Those were the words palliative care nurse Zeinah Keen kept hearing from a new patient, along with ‘Palliative care, bad!’

Her patient was Sarah*, a 63 year-old woman with advanced brain cancer who had experienced a sudden functional decline and was in a group home.

The cancer was causing her pain, seizures and cognitive impairment, and she had lost the ability to care for herself.

Sarah had always been an independent woman. She’d had a fulfilling career organising major music festivals.

Thirteen years before her own diagnosis, she’d cared for her late husband before he died from lymphoma, and she’d been living alone with her pets when her own health started to decline.

“It was clear that she had fears surrounding palliation,” said Zeinah.

“To her it meant death was imminent - I wondered what her experiences of palliative care had been prior, particularly with her husband."

Her parents were still alive and came to visit her with her brother. She also had a partner who was her main carer and legal guardian, who was finding everything very stressful.

Cognitive decline and palliative care

Studies have shown that people living with cognitive impairment are much less likely to receive palliative care as they approach the end of their life.

Dementia and related conditions can prevent staff without experience or training in this area to identify and manage symptoms, meaning pain, discomfort and resulting behaviours can escalate.

This is turn can make it even harder to determine a treatment pathway.

Zeinah’s concerns

Zeinah was immediately concerned about Sarah’s inability to swallow her seizure and pain medications, which she felt was contributing to her suffering, agitation and fear.

“She kept saying ‘scared, scared, scared’,” said Zeinah.

“She kept calling out, and therefore the door to her room was kept closed - I wasn’t sure how often the staff were able to attend to her.

“She was awake all night as she was taking high doses of steroids.”

Zeinah felt Sarah’s symptoms were too complex for a group home setting to manage, with no registered nurse on duty around the clock.

The care staff were not experienced with end-of-life care and, even though her partner wanted her to stay in the group home, she did not appear to be calm and comfortable.

Zeinah’s strategies

Zeinah immediately started her on a syringe driver for her pain medication and a sedative. The steroids were reduced and then stopped altogether.

She switched Sarah to ‘nil by mouth’ to reduce the risk of choking, and made sure regular mouth care was undertaken.

“The staff were then supported and educated in end-of-life care, and a registered nurse brought onsite around the clock to give medications and oversee care, which meant top-up drugs could be administered via injection,” said Zeinah.

Sarah’s partner’s main concerns were pain management, and he was reassured by their actions.

A better ending

The result was a far better palliative care experience, and Zeinah said that when Sarah died the following week in the group home she was comfortable and had a peaceful death.

“Her partner was happy with the outcome,” said Zeinah.

“I spoke to him the day she died and was able to offer my immediate condolences and navigate him to grief support services, both at HammondCare and in the community.”