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Dying to know cafes
HOW TO MAKE END-OF-LIFE PLANNING EASIER
Amulticultural aged care home has overcome the taboo of talking about death and advance care planning through the introduction of ‘Dying to Know Cafes’.
The inspiration came from a community forum about advance care planning, held at Multicultural Aged Care Illawarra (MACI), when a resident named Dorothy said she could not hear a word they were saying.
Clinical Nurse Consultant from the Illawarra Specialist Palliative Care Service, Kathleen Wurth, says, “Because Dorothy said she had difficulty hearing the information we were sharing, MACI organised an afternoon tea to talk in smaller, informal groups about end-of-life choices, wishes and living well.
“We invited a few residents and their families, and held what would become our first ‘Dying to Know Cafe’ in a residential aged care home.”
“Dorothy was calm and wise in her conversation and had obviously thought about her end-of-life plans before. She told us she hoped to die at MACI with her family present and with hymns playing.
“Dorothy also wanted the General Manager to spend time with her, as they had formed a close bond. The team spoke to Dorothy’s son, and they talked through Dorothy’s advance care planning revisions. Everyone was on the same page including the GP.”
A few months later, when Dorothy had a change in health and was admitted to hospital, her advance care directive was clear and respected. When she returned to MACI, while she was still on the ambulance stretcher, she said, “So glad to be home.”
“Generations of her family came and had time with her and were able to say goodbye. Dorothy also wanted her MACI family to be around her,” says Kathleen. MACI General Manager, Stephanie Clingan, said the aged care home had reached out to the Illawarra Specialist Palliative Care Service as part of their participation in the ELDAC Linkages Program, with the goal of improving staff skills in discussing the taboo topic of death. “Our staff had been expressing a lack of confidence in having advance care planning discussions with residents and families, including knowing when to start the process and how to do so,” said Stephanie.
“The Dying to Know Cafes have been a tremendous success for our residents and their families—we discovered that many of them actually wanted to have these conversations about death and advance care planning, but didn’t know how to start.
“Families who had been reluctant to have those conversations in the past were keen to participate in our afternoon tea parties, where their loved ones were able to finalise their advance care directives.”
The Dying to Know Cafes were a positive initiative which increased the number of advance care plans documented, with one resident even writing his own eulogy. Having clear instructions from the residents has improved the provision of palliative care and has created a better experience for residents, families and staff.
“We followed her wishes and residents, kitchen staff, cleaning, administration and care staff said their goodbyes and were able to comfort her. died listening to her favourite hymns snuggled up in her own bed. I am told it was magical.”
“Our staff no longer feel they have to send residents to hospital to receive end-of-life care. They have confidence in their skills and ability to support a good death for residents that is in line with their advance care plan,” says Stephanie.
The linkage between MACI and Illawarra Specialist Community Palliative Care Service was facilitated through the ELDAC Linkages Program, as part of ELDAC, a palliative care project funded by the Australian Government Department of Health.
