6.9.1 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)
  • referral to a speech pathologist to manage and maximise any communication impairments and an occupational therapist or psychologist for social skills training to reduce psychosocial difficulties (difficulty with social interactions can place the patient at higher risk of depression, which is relatively common for patients with head and neck cancer)
  • speech pathology for:
  • communication and swallowing difficulties, which may occur in the presence of residual, recurrent or metastatic disease – it is important to consider the patient’s overall prognosis and quality of life in managing these (e.g. the benefit of oral feeding irrespective of aspiration risk)
  • people who have undergone a laryngectomy or a tracheostomy to maximise communication, humidification/airway management and swallowing outcomes – a referral to a physiotherapist with expertise in respiratory management may also benefit (e.g. for advice regarding daily sputum production, coughing and forced expectoration)
  • referral to a dietitian for early nutrition intervention using a validated malnutrition screening tool such as the MST (malnutrition can occur as a result of disease or treatment)
  • enteral nutrition for certain patients with residual, recurrent or metastatic disease, although consideration of the patient’s overall prognosis and quality of life should be considered
  • referral to the appropriate discipline (e.g. social work, speech pathology, dietetics or nursing) for further assessment and identification of appropriate funding support (additional costs related to managing ongoing impairments, such as communication devices, enteral feeding and chronic wound 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 Betterprogram – 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.