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

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

• assistance for dealing with emotional and psychological distress resulting from fear of death or dying, loss of dignity, 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 symptoms including headaches and cognitive impairment
• decreased ability to talk (refer to a speech pathologist to explore alternative methods of communication)
• changes to personality and supporting the patient’s family with behaviour management
• 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
• supported accommodation options when families are no longer able to provide adequate levels of supervision
• 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.