STEP 7: End-of-life care
Step 7 is concerned with maintaining the patient’s quality of life and meeting their health and supportive care needs as they approach the end of life, as well as the needs of their family and carers.
Some patients with advanced cancer will 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.
If the treatment team does not include a palliative care member, the lead clinician should consider referring the patient to palliative care services, with the general practitioner’s engagement. This may include inpatient palliative unit access (as required).
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 these services:
- home and community-based care
- specialist community palliative care workers
- community nursing.
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 (AHMAC 2011).
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).
The treatment team can refer patients and carers to these resources:
- Palliative Care Australia
- Advance Care Planning Australia or to Advance Care Planning Australia’s National Advisory Service on 1300 208 582.
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 the Cancer Australia website. See ’Resource list’ for additional clinical trial databases.
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 such as pain and fatigue, reduced appetite, early satiety and weight loss
- transfusion support, which requires specialised clinical transfusion knowledge
- 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 funeral.
These services and resources can help:
- referral to 13 11 20 for Cancer Council Australia’s Pro Bono Program 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.
For more information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.
The lead clinician is responsible for:
- being open to and encouraging discussion with the patient 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.
The lead clinician should discuss end-of-life care planning to ensure the patient’s needs and goals are met in the appropriate environment. The patient’s general practitioner should be kept fully informed and involved in major developments in the patient’s illness path.
For support with communication skills and training programs, see these sources:
