3.6.4 Communication with patients, carers and families
In discussion with the patient, the lead clinician should undertake the following:
- establish if the patient has a regular or preferred general practitioner and if the patient does not have one, then encourage them to find one
- provide written information appropriate to the health literacy of the patient about the diagnosis and treatment to the patient and carer and refer the patient to the Guide to best cancer care (consumer optimal care pathway) for NETs, as well as to relevant websites and support groups such as NeuroEndocrine Cancer Australia NET Nurse support line 1300 287 363 or support online
- provide a treatment care plan including contact details for the treating team and information on when to call the hospital
- refer the patient to the NeuroEndocrine Cancer Australia Treatment and wellness plan
- discuss a timeframe for diagnosis and treatment with the patient and carer
- discuss the benefits of multidisciplinary care and gain the patient’s consent before presenting their case at an MDM
- provide brief advice and refer to Quitline (13 7848) for behavioural intervention if the patient currently smokes (or has recently quit), and prescribe smoking cessation pharmacotherapy, if clinically appropriate
- recommend an ‘integrated approach’ throughout treatment regarding nutrition, exercise and minimal or no alcohol consumption among other considerations
- communicate the benefits of continued engagement with primary care during treatment for managing comorbid disease, health promotion, care coordination and holistic care
- where appropriate, review fertility needs with the patient and refer for specialist fertility management (including fertility preservation, contraception, management during pregnancy and of future pregnancies)
- be open to and encourage discussion about the diagnosis, prognosis (if the patient wishes to know) and survivorship and palliative care while
- clarifying the patient’s preferences and needs, personal and cultural beliefs and expectations, and their ability to comprehend the communication
- encourage the patient to participate in advance care planning including considering appointing one or more substitute decision-makers and completing an advance care directive to clearly document their treatment preferences. Each state and territory has different terminology and legislation surrounding advance care directives and substitute decision-makers.