STEP 7: End-of-life care
Step 7 is concerned with maintaining the child, adolescent or young adult’s quality of life and meeting their health and supportive care needs at the end of life and in bereavement, as well as the needs of the patient’s family or carers.
Informed patients and carers have greater confidence and competence to manage their end-of-life care. Because laws regarding consent in children is governed federally and by each state/territory, children should be involved in decision making whenever possible.
Some patients may reach a time when active treatment is no longer appropriate. The team needs to share the principles of a palliative approach to care when making decisions with the patient and their family or carer. End-of-life care is appropriate when the patient’s symptoms are increasing and functional status is declining.
See section 4.3 for more information on palliative care in CAYA with acute leukaemia.
If the treatment team does not include a palliative care member, the lead clinician should consider referring the patient to palliative care services. This may include inpatient palliative unit access
(as required) hospice, and support for end-of-life care at home, and is often done as a collaboration between haematology, paediatric oncology and the palliative care team.
The multidisciplinary team may consider seeking additional expertise from these professionals:
- clinical psychologist
- clinical nurse specialist or practitioner
- social worker
- palliative medicine specialist
- pain specialist
- pastoral or spiritual carer
- bereavement counsellor
- music therapist
- art therapist
- cultural expert
- Canteen for children of parents with cancer
The team might also recommend that patients access:
- home- and community-based care
- specialist community palliative care workers
- community
If the patient does not already have an advance care directive in place, a designated member of the treatment team should encourage them to develop one in collaboration with their family or carer (Australian Government Department of Health 2021a).
It is essential for the treatment team to consider the appropriate place of care, the patient’s preferred place of death and the support needed for the patient, their family and carers.
The treatment team should also ensure that carers and families receive the information, support and guidance about their role according to their needs and wishes (Palliative Care Australia 2018).
More information
The treatment team can refer patients and carers to these resources:
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- Palliative Care Australia and children’s hospice information
- Advance Care Planning Australia or to Advance Care Planning Australia’s National Advisory Service on 1300 208
Clinical trials may help improve palliative care and in managing a patient’s symptoms of advanced cancer (Cancer Council Victoria 2019). The treatment team should support the patient to participate in research and clinical trials where available and appropriate.
For more information visit:
See validated screening tools mentioned in Principle 4 ‘Supportive care’.
A number of specific challenges and needs may arise for patients at this time:
- assistance for dealing with emotional and psychological distress from anticipatory grief, fear of death or dying, anxiety/depression and interpersonal problems
- management of physical symptoms
- decline in mobility or functional status, affecting the patient’s discharge destination (a referral to physiotherapy, exercise physiology, occupational therapy or social work may be needed)
- appointing a substitute decision-maker and completing an advance care directive
- legal issues (completing a will, care of dependent children) and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability specific support for families where a parent is dying and will leave behind bereaved children or adolescents, creating special family needs
- arranging a
These services and resources can help with:
- referral to the Cancer Council Australia’s Pro Bono Program (13 11 20) for free legal, financial, small business accounting and workplace assistance (subject to a means test)
- Sad news sorry business (Queensland Health 2015) for the specific needs of Aboriginal and Torres Strait Islander people
- referral to Redkite (1800 733 548) for financial assistance during palliative care, with funerals and in the first year of bereavement, as well as counselling and social work services during end-of-life care and bereavement support and counselling
- referral to Canteen (1800 226 833) for similar supports (not financial assistance)
- referral to the Leukaemia Foundation (1800 620 420) for emotional, physical and psychosocial support for the challenges of a cancer diagnosis, treatment and
For more information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.
The lead clinician is responsible for:
- being open to and encouraging discussion with the patient, carer and family about the expected disease course, considering the patient’s personal and cultural beliefs and expectations
- discussing palliative care options, including inpatient and community-based services as well as dying at home and subsequent arrangements
- providing the patient and carer with the contact details of a palliative care service
- referring the patient to palliative care in the community according to the carer’s wishes
- referring the carers and family to bereavement support from community support
