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
  • loss of fertility, surgically or chemically induced menopause, and sexual dysfunction (e.g. vaginal dryness, bleeding, stenosis, dyspareunia, atrophic vaginitis and pain) requires sensitive discussion and possible referral to a clinician with skills in the relevant area (Harris 2019)
  • 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
  • malnutrition/undernutrition as identified using a validated malnutrition screening tool or presenting with unintentional weight loss
  • obesity – many patients with a high BMI may be malnourished
  • abdominal ascites, which may need active management
  • lower limb lymphoedema, which is a common side effect after complete pelvic lymphadenectomy – referral to a physiotherapist trained in managing lymphoedema or a 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.