A patient-centred focus increases the experience and satisfaction of patients, their families and carers, and staff, as well as safety and cost-effectiveness (ACSQHC 2019a).

Patient-centred care means:

• patients are informed and involved in decisions about their cancer and the treatment, post-treatment and recovery program ahead
• patients, their families and carers are provided with access to appropriate and accessible health information
• respect for the cultural and religious beliefs of patients and their families is demonstrated when discussing the diagnosis of cancer
• active communication is used to engage patients, their families and carers in the care process – an essential step for children, adolescents, young adult and adult patients to be informed and have an age appropriate understanding.
• care processes are mutually beneficial for patients and providers
• special needs are addressed – for example, the needs of people with disabilities or mental health issues.

Informed choice and consent

An informed patient has greater confidence and competence to manage their cancer journey.

Health professionals are responsible for enabling patients to make informed choices according to their preferences, needs and values. Patients should be provided with:

• individualised and timely information and guidance about their treatment
• details of their care, including the advantages and disadvantages of each treatment, the associated potential side effects, the likely outcomes on their performance status (how well a patient is able to carry out activities of daily life) and subsequently their quality of life and any financial implications, at each stage of the pathway (ACSQHC 2020).

Health professionals have a legal responsibility to obtain consent for all procedures from either the patient or their substitute decision-maker if they are not deemed competent.

Referral choices and informed financial consent

Patients have the right to receive the information they need to be able to make an informed decision on where to be referred for treatment. Treating specialists and practitioners should clearly explain the costs or how to find out the costs of services, tests and treatment options upfront to avoid consumers experiencing ‘bill shock’.

At the time of referral, the patient’s general practitioner or other referring doctor should discuss the different options for referral, waiting periods, expertise, if there are likely to be out-of-pocket costs and the range of services available. This will enable patients to make an informed choice of specialist and health service. Referral decisions influence the care patients receive along the pathway and the direct and indirect costs they and their carers may incur. Different referrals have different costs:

• referral to a public hospital, which may involve some costs
• initial referral to a private specialist with associated costs, with the option of ongoing treatment in a public hospital at any time
• referral to a patient’s choice of practitioner for immediate and ongoing private hospital management with associated costs.

Patients should be made aware that even though public hospital health care is ‘free’ to all Australian citizens and most permanent residents of Australia, there are still associated direct costs such as:

• over-the-counter medication and prescriptions
• wound dressings
• travel costs
• parking fees
• tests that are not covered by Medicare.

A cancer diagnosis and treatment may affect a patient’s or carer’s income. This is an indirect cost associated with cancer. Social work support is essential to help patients and their families deal with this issue. Patients should be advised not to undergo private care with significant out-of-pocket expenses if financially constrained. Specialists in private practice need to explain costs at the start of each new treatment to acknowledge the cumulative out-of-pocket expenses that patients can incur.

For more information on informed financial consent see Cancer Council’s ‘Standard for informed financial consent’.

Financial counselling services can provide advice on dealing with financial difficulties. These services can be accessed publicly (via social workers at hospitals, financial counsellors at neighbourhood houses or rural financial aid), privately or through cancer support services such as local charity groups or social work services.

For practical and financial assistance, patients may consider Cancer Council’s financial services.

Patients and carers should be made aware of other forms of potential financial support that may be available, including whether the diagnosis or treatment triggers any insurance or access to superannuation, patient-assisted travel schemes, Centrelink, or other forms of social security.

Shared care

Shared care between a cancer specialist and primary care health professional is delivered in two or more settings by two or more professionals. The primary care provider is usually a general practitioner but can include nurses and allied health practitioners. Shared care can be delivered throughout the care pathway including during treatment, follow-up care, survivorship care and end-of-life care.

Shared care offers several advantages to patients, including the potential for treatment closer to home and more efficient care with less duplication and greater coordination. Evidence comparing shared care and specialised care indicates equivalence in outcomes including recurrence rate, cancer survival and quality of life (Cancer Research in Primary Care 2016).

Telehealth can enable efficient shared care and should be explored for all patients. Patients in some rural or remote locations may access specialists via Medicare Benefit Scheme funded telehealth consultations. General practitioners working in rural or remote locations should be aware of specialist multidisciplinary teams with facilities to reduce the travel burden and costs for patients.