5.4 Support and communication

5.4 Support and communication

Screening with a validated screening tool (for example, the National Comprehensive Cancer Network Distress Thermometer and Problem Checklist), assessment and referral to appropriate health professionals or organisations is required to meet the identified needs of an individual, their carer and family.

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

Physical needs

  • Upper and lower limb lymphoedema may require referral to a trained lymphoedema practitioner.
  • Long-term phantom limb pain may require ongoing pain management.
  • Decline in functional status (particularly from limb reconstruction or amputation) may affect the patient’s mobility and ability to take part in everyday activities. Referral to an occupational therapist, orthotist/prosthetist and a physiotherapist or exercise physiologist for assessment, education, intervention and compensatory strategies may assist with maintaining mobility. These may require prolonged periods of rehabilitation.
  • Healing of underlying structures, infection and other complication risks relating to skeletal implants may require input from wound nurse specialists and infection control specialists.
  • Patients require ongoing nutritional screening, assessment and management. Reduced oral intake and/or swallowing difficulties and weight loss require referral to a dietitian and speech pathologist (for swallowing difficulties).
  • Patients may need treatment for other physical symptoms such as pain, fatigue and musculoskeletal dysfunction.

Psychological needs

  • Disfigurement and scarring from appearance-altering treatment and the need for a prosthesis may require referral to a specialist psychologist, psychiatrist, orthotist/prosthetist or social worker.
  • 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.

Social/practical needs

  • Ensure the patient attends appointments.
  • 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 for advance care planning, appointing a power of attorney, completing a will and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

Information needs

  • Provide appropriate information for people from culturally and linguistically diverse backgrounds.

Spiritual needs

  • Patients with cancer and their families should have access to spiritual support that is appropriate to their needs throughout the cancer journey.

Rehabilitation may be required at any point of the care pathway from preparing for treatment through to disease-free survival and palliative care.

Evaluation for postoperative rehabilitation is recommended for all patients with extremity sarcoma (NCCN 2016a, NCCN 2016b). Amputees should be referred to a specialist physiotherapist for a comprehensive rehabilitation program. Rehabilitation should be continued until maximum function is achieved (NCCN 2016a) and should be highly integrated with the treating medical team.

Other issues that may need to be addressed include managing cancer-related fatigue, cognitive changes, improving physical endurance, achieving independence in daily tasks, returning to work and ongoing adjustment to disease and its sequelae.

The lead clinician should ensure patients receive timely and appropriate referral to palliative care services. Referral should be based on need rather than prognosis.

  • Patients may be referred to palliative care at initial diagnosis.
  • Patients should be referred to palliative care at first recurrence or progression.
  • Carer needs may prompt referral (Collins et al. 2013).

Early referral to palliative care can improve the quality of life for people with cancer (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014). This is particularly true for poor-prognosis cancers (Cancer Council Australia 2012; Philip et al. 2013; Temel et al. 2010). Furthermore, palliative care has been associated with the improved wellbeing of carers (Higginson 2010; Hudson et al. 2014).

Ensure carers and families receive information, support and guidance regarding their role according to their needs and wishes (Palliative Care Australia 2005).

The patient and carer should be encouraged to develop an advance care plan (AHMAC 2011).

Further information

Refer patients and carers to Palliative Care Australia.

The lead clinician should:

  • offer advice to patients and carers on the benefits of or how to access support from sarcoma peer support groups, groups for carers and special interest groups
  • explain the treatment summary and follow-up care plan
  • provide information about the signs and symptoms of recurrent disease
  • provide information about healthy living.

The lead clinician should ensure regular, timely, two-way communication with the patient’s general practitioner regarding:

  • the follow-up care plan
  • potential late effects
  • supportive and palliative care requirements
  • the patient’s progress
  • recommendations from the multidisciplinary team
  • any shared care arrangements.