Introduction:

The Adolescent and Young Adult Hospice (AYAH) is a new NSW wide service that opened in February 2023 in Sydney. It has 8 beds for patients aged 16-25 years with life-limiting illnesses. Admissions are accepted for respite care, complex symptoms, acute hospital step-down, end-of-life care and after death care. This abstract and presentation describes some of the unique elements in the setting up of the AYAH.

Service planning:

The AYAH was developed due to community engagement and advocacy, primarily to meet the ongoing needs of patients who had been cared for in Bear Cottage – a children’s hospice in close proximity in Sydney, as well as adolescents and young adults with new diagnoses. 

The AYAH was designed with this age group front of mind with several unique physical components as well as extensive multidisciplinary staffing to create an expert team delivering specialist palliative care. 

Differences between the AYAH and a traditional adult Palliative Care Unit (PCU):

1.Many of the referrals are for illnesses and conditions rarely seen in adult PCUs –severe neurological illness (SNI), genetic and metabolic syndromes- a population group with very extensive physical care needs. 

2. Goals of care are often not as pre-determined as prognosis is even more uncertain than many patients seen in an adult palliative care service. 

3.Parents and family play a key role in this population, and often stay with the patient throughout the admission. 

4.Respite admissions are frequent, in marked contrast to the adult PCU setting. 

Learning points:

The AYAH is meeting the needs of a patient group previously not met, and requires a unique skill set. Our learnings in the establishment of this unit would be of value for others developing such services.