See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise at this time for patients, carers and families:

• assistance for dealing with emotional and psychological distress resulting from fear of death or dying, existential concerns, anticipatory grief, communicating wishes to loved ones, interpersonal problems and sexuality concerns
• potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment
• cognitive changes as a result of treatment and disease progression such as altered memory, attention and concentration (a patient may appoint someone to make medical, financial and legal decisions on their behalf – a substitute decision-maker – before and in case they experience cognitive decline)
• management of physical symptoms
• decline in mobility or functional status as a result of recurrent disease and treatments (referral to physiotherapy or occupational therapy may be required)
• coping with hair loss and changes in physical appearance (refer to the Look Good, Feel Better program – see ‘Resource list’)
• appointing a substitute decision-maker and completing an advance care directive
• financial issues as a result of disease recurrence such as gaining early access to superannuation and insurance
• 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. financial and employment issues (e.g. loss of income and assistance with returning to work, and the cost of treatment, travel and accommodation)
• referral to supportive care services and community support

Treatment for relapsed acute leukaemia has a high-risk of treatment-related morbidity and mortality, particularly infectious complications. HSCT, novel agents and cell therapies used in refractory leukaemia may also be associated with significant treatment-related side effects. Families and patients from regional centres may need to move closer to the specialist cancer service due to

the toxicity of therapy. Support of the patient and family, including access to information, should be managed under the family-centred care principles discussed in Principle 4 ‘Supportive care’.

Rehabilitation may be required at any point of the care pathway, from preparing for treatment through to palliative care. Issues that may need to be dealt with include managing cancer-related fatigue, improving physical endurance, achieving independence in daily tasks, returning to work and ongoing adjustment to cancer and its consequences.

Exercise is a safe and effective intervention that improves the physical and emotional health and wellbeing of cancer patients. Exercise should be embedded as part of standard practice in cancer care and be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment.

The lead clinician should ensure there is adequate discussion with patients and carers about the diagnosis and recommended treatment, including treatment intent and possible outcomes, likely adverse effects and the supportive care options available.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.