Changing the conversation for end-of-life care

Good end-of-life care is different for every patient. For Carmen, it meant one last trip to the beach with her family in February 2019, two days before her death.

Having your faithful dog by your side at death is more than just wish fulfilment, as end-of-life clinical nurse specialist Stacey Harper can testify.

Stacey is one of the first in a new role within Blacktown Hospital aiming to educate patients, families and staff about holistic care in their final days.

“At that stage we need to change the mindset of the goal for care, from treating the condition to making the patient as comfortable as possible,” Stacey explains.

“For some people this means spiritual care, for others it means bringing in photos and food from home. One patient recently had their dog join them on their bed to comfort them for the final hours of their life.

“These could be little things that hospitals might not always think of, but it’s important to the patient and their family in their last days.”

Stacey is one member of a working group involved in an end-of-life care planning project being led by project champion Dr Sally Greenaway and project sponsor Dr Michael Datyner.

Dr Michael Datyner, Blacktown Hospital Auxiliary treasurer Beverley Beaver, Stacey Harper and Katherine Maka helped run an Advance Care Planning information stall at Blacktown Hospital last week.

The project, which is supported by Innovation and Redesign acting manager Katherine Maka, focuses on patients with chronic illness in the cardiology and gastroenterology services, Blacktown Hospital, rather than services more traditionally associated with palliative care such as oncology.  

It aims to recognise and communicate to patients when they are approaching the end of their life, and deliver appropriate, compassionate and timely end-of-life care by skilled and experienced interdisciplinary teams.

“Whenever possible, patients are empowered to direct their own care,” Katherine said.

“The project working group has strong consumer engagement. So far it’s also had good engagement from all clinicians involved at Blacktown, including consultants, advanced trainees, junior medical staff, nursing staff, and allied health staff including social workers, speech pathologists, occupational therapists, dietitians and physiotherapists.”

Palliative care consultant Lyra Reyes, resident medical officer Mustafa Hafiz and
senior resident medical officer Deepa Balathayil with Stacey Harper and Katherine Maka at the information stall.

The project team ran an information stall at Blacktown Hospital during Advance Care Planning Week to raise awareness among patients, families and staff.

Ultimately they aim to see end-of-life care planning with patients and loved ones, including the documentation of outcomes, becoming standard practice in areas beyond dedicated palliative care services.

A successful outcome also involves training clinical staff to recognise when a patient is nearing the end of their life, which can be difficult with chronic illness, and feel confident to communicate the prognosis to them and their loved ones in a compassionate manner.

Stacey says it is a daunting skill that requires time and experience – but one she is grateful for.

“It’s an honour to be included in that part of someone’s life and to help bring some kind of peace and comfort to them when they need it most,” she said.

For more information regarding the End of Life project please contact wslhd-cumberland-innovation&