Palliative care is a multidisciplinary approach to symptom management and psychosocial support and helps identify care goals for patients with serious illness and their families. Note, a significant number of patients with CAYA acute leukaemia are cured.

Paediatric palliative care services can also support and provide care coordination with other care providers such as schools, NDIS providers, equipment services and community services to enhance care of the patient and their family. Sibling support and grandparent support can also be provided. Bereavement care, including anticipatory grief, is a core element of paediatric palliative care.

Early referral to palliative care can improve the quality of life for people with cancer (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014). This is particularly true for cancer with poor prognosis.

The lead clinician should ensure patients receive timely and appropriate referral to paediatric palliative care services. Referral should be based on need rather than prognosis. When given an evidence- based process to safely address these confronting issues, young people and their families are highly engaged. Addressing the value of palliative care and advance care planning with young people has been shown to reduce their anxiety, does not affect depression, improves symptom management and quality of life for patients and their carers (Wiener et al. 2008; 2012).

The ‘Dying to Talk’ resource may help health professionals, where appropriate, initiating discussions with patients, family or carer about future care needs (see ‘More information’). Ensure that carers and families receive information, support and guidance about their role in palliative care (Palliative Care Australia 2018).

Where appropriate, patients, their family or carer should be encouraged to initiate advance care planning. Advance care planning discussions can be triggered at the time of diagnosis to ensure care is informed by respect and knowledge of the patient or caregiver’s preferences.

Therapies such as HSCT, treatment for high-risk AML and targeted therapies within the context of clinical trials can result in high levels of physical, psychological and existential distress, despite having curative intent. CAYA with an uncertain prognosis and high symptom burden should be able to access palliative care support alongside curative-intent therapies.

Discussion should be held within a CAYA acute leukaemia MDM to offer the family referral to palliative care services where there is a likely need to escalate care to manage symptoms and distress in

high-risk curative regimens such as HSCT, as well as support when cure is no longer the intent of the multidisciplinary team.

Refer to Step 6 for a more detailed description of managing patients with refractory, relapsed, residual or progressive or refractory disease.

More information

These online resources are useful:

• • Advance Care Planning Australia 
  • CareSearch Children & Adolescents 
  • the Palliative Care resource kit 
  • Palliative Care Australia (for patients and carers) 
  • Quality of Care Collaborative Australia <https://www.quocca.com.au/>
  • Canteen 
  • Australian best practice guidelines on end-of-life communication with CAYA (Sansom- Daly et al. 2020)
  • Agency for Clinical Innovation Transition Care Network