Susan, aged 74, was born on 2 February 1951. She was raised in Bentleigh until 1957. She was formally diagnosed with Angelman Syndrome at age 30. Susan was non-verbal and wheelchair-bound, requiring full support for daily activities. She had received Supported Independent Living services since 2008 and lived in Specialist Disability Accommodation.
In April 2025, support staff observed Susan's oral intake reducing. She began spitting out food and fluids and refused water. On 2 May 2025, Susan saw her General Practitioner for swallowing difficulties, receiving antibiotics. On 9 May, her symptoms continued, and she was referred to Dandenong Hospital. She tolerated oral intake within 24 hours and was discharged on 12 May. Her General Practitioner discussed the progression of Angelman Syndrome with a family member.
Susan re-presented to Dandenong Hospital on 25 May with reduced oral intake. Hospital staff had difficulty maintaining IV access. A family meeting on 27 May decided on supportive treatment due to the lack of reversible causes. After some improvement, another family meeting on 30 May detailed progressive neurocognitive impairment. She was discharged, acknowledging her oral intake was significantly less than required.
On 16 June 2025, Susan returned to Dandenong Hospital with very poor oral intake. She was transitioned to a palliative care management plan after discussion with a family member. The palliative care team reviewed her on 17 June. Susan died at 1:53 pm on 19 June 2025. The cause of death was acute renal failure complicating decreased oral intake in the setting of Angelman Syndrome. I would be interested to understand what pathway existed for reporting a significant decline in oral intake for a Specialist Disability Accommodation resident.