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)
  • side effects resulting from high-dose chemotherapy including alopecia, fatigue, damage to the bone marrow and other quickly growing tissues, immunosuppression, fluid retention, dyspnoea, GVHD, organ toxicity (interstitial pneumonitis, veno-occlusive disease), episodic hypotension and pulmonary infiltrates
  • chemically induced menopause that leads to atrophic vaginitis and dyspareunia, and changes in androgens that may alter libido function and orgasm (these issues require sensitive discussion)
  • differentiation syndrome – early recognition and prompt initiation of corticosteroids is required (NCCN 2019) and consideration given to interrupting therapy
  • gastrointestinal symptoms such as nausea, vomiting, severe mucositis, loss of appetite, dysgeusia, diarrhoea or constipation as a result of treatment, which requires optimal symptom control with medicine, total parenteral nutrition, analgesia and mouth care (referral to a dietitian may be required if dietary intake is affected)
  • 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.

For patients treated with allo-SCT, additional supportive care may be required to address the immunosuppressive and long-term side effects of therapy. Issues may include infertility, GVHD, increased risk of infection, anaemia, bleeding, mouth ulcers and fatigue.