6.8.1 Supportive care
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, 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 including pain and fatigue
- bowel dysfunction, gastrointestinal or abdominal symptoms, which may need monitoring and assessment
- bowel obstruction due to malignancy (patients should be aware of possible symptoms and advised to seek immediate medical assessment if symptomatic)
- loss of fertility, surgically or chemically induced menopause, and sexual dysfunction, such as vaginal dryness, bleeding, atrophic vaginitis and pain – these require sensitive discussion and possible referral to a clinician with skills in the relevant area (Harris 2019)
- abdominal ascites, which may need active management
- lower limb lymphoedema – referral to a physiotherapist or trained lymphoedema massage specialist may be appropriate
- 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