4.6 Support and communication

4.6 Support and communication

Screening with a validated screening tool (such as the National Comprehensive Cancer Network Distress Thermometer and Problem Checklist), assessment and referral to appropriate health professionals and/or organisations is required to meet the needs of individual patients, their families and carers.

In addition to the common issues outlined in the Appendix, specific needs that may arise at this time include the following.

Physical needs

  • Fatigue/change in functional abilities is a common symptom, and patients may benefit from a referral to occupational therapy.
  • Decline in mobility and/or functional status may result from treatment.
  • Assistance with managing complex medication regimens, multiple medications, assessment of side effects and assistance with difficulties swallowing medications may be required. Refer to a pharmacist if necessary.

Psychological needs

  • Patients may need support with emotional and psychological issues including, but not limited to, body image concerns, fatigue, existential anxiety, treatment phobias, anxiety/depression, interpersonal problems and sexuality concerns.
  • Many patients with CUP find the uncertainty surrounding their disease and the limited treatment options difficult and would welcome the opportunity to ask questions and learn about others’ experiences (Boyland & Davis 2008).
  • Many patients with CUP and their clinicians have a poor understanding of their illness, have difficulty in explaining their illness to others, and develop a sense of frustration in health professionals not having the answers (Boyland & Davis 2008, Karapetis et al. 2017).
  • Depressive symptoms are higher in people with CUP when compared with people with cancer of a known origin, so they require more psychosocial support and specific interventions (Hyphantis et al. 2013).
  • Palliative care can improve physical symptom control and the quality of life for people with cancer including improving the capacity of patients to come to terms with diagnostic and prognostic uncertainty (Temel et al. 2017).
  • GPs play an important role in coordinating care for patients, including assisting with side effects and offering support when questions or worries arise. For most patients, simultaneous care provided by their GP is very important (Lang et al. 2017).

Social/practical needs

  • Patients may need support to attend appointments.
  • Potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment and for patients with neuropsychiatric symptoms, can be an issue. Social isolation can also compound distress (Australian Cancer Network 2009).
  • Financial issues related to loss of income and additional expenses as a result of illness and/or treatment may require support.
  • Help with legal issues may be required including advance care planning, appointing a power of attorney and completing a will.

Spiritual needs

  • Multidisciplinary teams should have access to suitably qualified, authorised and appointed spiritual caregivers who can act as a resource for patients, carers and staff.
  • Patients with cancer and their families should have access to spiritual support appropriate to their needs throughout the cancer journey.

Information needs

  • CUP patients are more likely to want written information about their type of cancer and tests received but are less likely to understand explanations of their condition (Wagland et al. 2017).
  • Provide appropriate information to patients and carers about how to manage alterations in cognitive function and potential changes in behaviour.
  • Patients may need advice about safe driving.
  • Patients from culturally and linguistically diverse backgrounds may need information provided in other formats.

The lead clinician should:

  • discuss the treatment plan with the patient and carer, including the intent of treatment and expected outcomes (provide a written plan after final histopathological diagnosis (not frozen section) is available)
  • provide the patient and carer with information on possible side effects of treatment, self- management strategies and emergency contacts
  • initiate a discussion regarding advance care planning with the patient and carer.

The lead clinician should:

  • communicate with the person’s GP about their role in symptom management, psychosocial care and referral to local services
  • ensure regular and timely two-way communication with the GP regarding:
  • the treatment plan, including intent and potential side effects
  • supportive and palliative care requirements
  • the patient’s prognosis and their understanding of this
  • enrolment in research and/or clinical trials
  • changes in treatment or medications
  • recommendations from the MDT.