4.5 Support and communication
See validated screening tools mentioned in Principle 4 ‘Supportive care’.
Patients with low-grade lymphomas may undergo another period of watchful waiting before their initial therapy and this can lead to anxieties related to the stress and uncertainty of observation. Ongoing patient education from their lymphoma specialist and, if further support is needed, a referral to a psychologist with experience in lymphoma is recommended (see 3.6.3 Supportive care).
A number of specific challenges and needs may arise for patients at this time:
- assistance for dealing with emotional and psychological issues, including body image concerns, fatigue, quitting smoking, traumatic experiences, existential anxiety, treatment phobias, anxiety/ depression, 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 (e.g. altered memory, attention and concentration)
- diet needs – these are likely to change over time during the different phases of treatment
- nutritional assessment and support for malnutrition due to ongoing treatment side effects (including weight loss, reduced oral intake and cachexia), which may require monitoring and nutrition intervention from a dietitian
- management of gastrointestinal symptoms (including vomiting, mucositis, reflux and early satiety), difficulty swallowing and decrease in appetite require optimal symptom control
- management of physical symptoms such as nausea and loss of appetite
- decline in mobility or functional status as a result of treatment
- assistance with beginning or resuming regular exercise with referral to an exercise physiologist or physiotherapist (COSA 2018; Hayes et al. 2019).
Early involvement of general practitioners may lead to improved cancer survivorship care following acute treatment. General practitioners can address many supportive care needs through good communication and clear guidance from the specialist team (Emery 2014).
Patients, carers and families may have these additional issues and needs:
- financial issues related to loss of income (through reduced capacity to work or loss of work) and additional expenses as a result of illness or treatment
- advance care planning, which may involve appointing a substitute decision-maker and completing an advance care directive
- legal issues (completing a will, care of dependent children) or making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.
Cancer Council 13 11 20, Leukaemia Foundation 1800 620 420 and Lymphoma Australia 1800 953 081 information and support lines can assist with information and referral to local support services.
For more information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.
Rehabilitation may be required at any point of the care pathway. If it is required before treatment, it is referred to as prehabilitation (see section 3.6.1).
All members of the multidisciplinary team have an important role in promoting rehabilitation. Team members may include occupational therapists, speech pathologists, dietitians, social workers, psychologists, physiotherapists, exercise physiologists and rehabilitation specialists.
To maximise the safety and therapeutic effect of exercise for people with cancer, all team members should recommend that people with cancer work towards achieving, and then maintaining, recommended levels of exercise and physical activity as per relevant guidelines. Exercise should be prescribed and delivered under the direction of an accredited exercise physiologist or physiotherapist with experience in cancer care (Vardy et al. 2019). The focus of intervention from these health professionals is tailoring evidence-based exercise recommendations to the individual patient’s needs and abilities, with a focus on the patient transitioning to ongoing self-managed exercise.
Other issues that may need to be dealt with include managing cancer-related fatigue, improving physical endurance, achieving independence in daily tasks, optimising nutritional intake, returning to work and ongoing adjustment to cancer and its consequences. Referrals to dietitians, psychosocial support, return-to-work programs and community support organisations can help in managing these issues.
The lead or nominated clinician should take responsibility for these tasks:
- discussing treatment options with patients and carers, including the treatment intent and expected outcomes, and providing a written version of the plan and any referrals
- providing patient and carers with information about the possible side effects of treatment, managing symptoms between active treatments, how to access care, self-management strategies and emergency contacts
- encouraging patients to use question prompt lists and audio recordings, and to have a support person present to aid informed decision making
- initiating a discussion about advance care planning and involving carers or family if the patient
The general practitioner plays an important role in coordinating care for patients, including helping to manage side effects and other comorbidities, and offering support when patients have questions or worries. For most patients, simultaneous care provided by their general practitioner is very important.
The lead clinician, in discussion with the patient’s general practitioner, should consider these points:
- the general practitioner’s role in symptom management, supportive care and referral to local services
- using a chronic disease management plan and mental health care management plan
- how to ensure regular and timely two-way communication about:
- 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 or clinical trials
- changes in treatment or medications
- the presence of an advance care directive or appointment of a substitute decision-maker
- recommendations from the multidisciplinary
More information
Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.