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 CLL 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: The team might also recommend that patients access these services: 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:
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: These services and resources can help: 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: 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: