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.

Health professionals need to have appropriate training and experience to undertake treatment for acute myeloid leukaemia. Patients should be referred to an individual practitioner or service with appropriate expertise.

Safe and high-quality care is care provided by appropriately trained and credentialed health professionals who undertake regular quality reviews of their performance, contribute to regular audits of their care and are actively involved in continuing professional development. Hospitals and clinics must have the equipment, staff numbers, policies and procedures in place to support safe and high-quality care for cancer patients. Patients should be offered the safest options for care, which may include using telehealth (Cancer Australia 2020).

Hospital quality committees should ensure all health care is informed by evidence, and health professionals and health service managers (including executives) have a responsibility to evaluate and monitor their practice. Optimal care pathways provide a framework to help evaluate and monitor practice over time. Services should be routinely collecting relevant minimum datasets to support benchmarking, quality care and service improvement. Hospital committees and health professional peak bodies should be auditing this process (ACSQHC 2017, 2020).

The Australian Council on Health Standards has created a set of indicators that helps hospitals conform to appropriate standards.

Patient-reported experience and outcome measures

Patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) should be incorporated into routine cancer care.

PREMs are used to obtain patients’ views and observations on aspects of healthcare services they have received (AIHW 2018). Patient experience data is collected for specific services and then relayed to service providers to instigate improvements in patient services (ACSQHC 2019b).

The Australian Hospital Patient Experience Question Set (AHPEQS) is a tool used to assess patient experiences of treatment and care in a private or public hospital. AHPEQS helps to improve the safety and quality of health care by allowing organisations to understand the patient’s perspective (ACSQHC 2019b; AIHW 2018).

PROMs measure aspects of a person’s health status such as symptoms, quality of life and needs and are collected directly from patients either online, via a smartphone or through paper-based means.

Collecting PROMs, and then instigating an appropriate clinical response, has been shown to prolong survival, reduce health system use and improve patients’ quality of life. While there are many sets of PROMs questions that are relevant to any cancer patient, specific questions can be tailored to particular cancer types, populations or different phases of cancer care.

All new diagnoses should be reported, as appropriate, to the relevant state or territory cancer registry.

Multidisciplinary care improves patient outcomes. Cancer Australia’s ‘Principles of multidisciplinary care’ provides a flexible definition, allowing services to vary implementation according to cancer type and the service location. The principles stipulate:

• a team approach that involves core disciplines that are integral to providing good care, including general practice, with input from other specialties as required
• communication among team members about treatment planning and plans for follow-up
• access to the full therapeutic range for all patients, regardless of geographical remoteness or size of institution
• care delivery in accordance with nationally agreed standards
• patient involvement in decisions about their care (Cancer Australia 2019a).

In addition to these principles, treatment teams should consider clinical trial participation for all eligible patients.

Multidisciplinary meetings, often called MDMs, should be based on the principles outlined above.

For more information on the principles of multidisciplinary care and the benefits of adopting a multidisciplinary approach, see Cancer Australia’s ‘Principles of multidisciplinary care’.

Supportive care may be ‘patient-defined’ and based on unmet needs. It is a core component of evidence-based clinical care and its benefits are well established. All cancer patients and their carers should be formally supported and have access to understandable, relevant information about the medical, practical and emotional aspects of the cancer and its treatment (Fitch 2008). The wishes and needs of the patient, their family and their carers should determine the level of support provided. Supportive care is a standard or routine aspect of cancer care and the treatment team should make patients aware of this.

Supportive care should begin from the time of diagnosis and continue throughout the cancer pathway.

For health professionals, supportive care involves:

• screening and assessing patients and families for their supportive care needs
• providing patients with access to a range of multidisciplinary support services, groups and therapies designed to assist them to live with cancer and its treatment and optimise recovery
• optimising referral pathways to community support organisations (cancer-related non-government, not-for-profit and charities) that provide services to cancer survivors – these address many of the care-navigation, psychosocial and information needs of cancer survivors and those affected by cancer (Australian Cancer Survivorship Centre 2019)
• being aware of and delivering culturally appropriate care.

All members of the multidisciplinary team have a role in providing supportive care along the care pathway, with special attention at transition points.

Supportive care involves routinely and systematically assessing patients to determine their needs. Health professionals can use a variety of validated screening tools for this task (see box below). Clinical review and individual assessment are still required to ensure all patient concerns are identified.

Visit the WeCan website for information and resources on supportive care.

Key review points

The treatment team should assess patients for supportive care needs at these key stages:

• initial presentation or diagnosis (first three months)
• the beginning of treatment or a new phase of treatment
• change in prognosis
• if a patient is found to have a germline genetic mutation predisposing to cancer
• end of treatment
• throughout survivorship
• diagnosis of recurrence
• change in or development of new symptoms
• palliative care
• end-of-life care
• other time points based on clinical judgement.

The team also needs to decide whether the patient requires ongoing referral to supportive care services. Access to services can be through general practice–led chronic disease management plans, team care arrangements and mental health plans. Community support services also have a role to play.

See Appendices A and B, and special population groups for more information on supportive care and the specific needs of people that may arise.

Seamless care coordination is essential for patients to successfully navigate the complex health system. Care coordination is a comprehensive approach to achieving continuity of care for patients. It aims to ensure care is delivered in a systematic, connected and timely way that promotes efficiency and reduces the risk of duplication and over-servicing to meet the medical and personal needs of patients.

Care coordination includes:

• proactive and timely communication with patients, their families and carers
• treatment plans, survivorship care plans and/or advance care directives
• coordinated appointments to ensure timely diagnosis, treatment and survivorship care
• appropriate tests and results being available to the treating team so treatment decisions can be made
• medical records being available to all members of the treating team and at scheduled appointments
• translation or interpreter services arranged if the patient/carer is from a non-English- speaking background or has difficulty communicating due to a physical disability
• practical support such as transport, accommodation, advance care planning and financial support
• referral and access to supportive care
• access to clinical trials
• access to telehealth for people in rural and remote areas and for managing vulnerable patients.

Care coordination brings together different health professionals, teams and health services. It also encompasses MDMs, multidisciplinary assessment clinics, supportive care screening and assessment, referral practices, data collection, common protocols, information for patients and individual clinical treatment.

Care coordination should cross the acute and primary care interface and should aim to achieve consistency of care through clear communication, linkages and collaborative integrated care planning.

Care coordination can be facilitated through electronic health record management such as My Health Record. My Health Record is a secure online database that helps with data collection and care coordination (My Health Record 2019).

Formal care coordination through appointed care coordinators plays an important role in managing and supporting patients through the health system. The availability of dedicated care coordinators varies across states and territories according to the complexity of care required and local service capacity and resourcing.

Good and open communication is a key principle of care for cancer patients. This includes communication between oncology and primary care health professionals and with patients. General practitioners should be involved in care from the point of diagnosis, and patients should be encouraged to maintain a relationship with their general practitioner through all stages of cancer care. Communication should be regular and timely.

Attendance of a family member or carer at clinical appointments is beneficial for many patients, as the family member or carer can provide informational and emotional support. General practitioners and clinicians should encourage and support the involvement of family members and carers by providing an inclusive and supportive consultation environment (Laidsaar-Powell et al. 2018a). Laidsaar-Powell et al. provide evidence-based guidance on how to support family member or carer involvement in consultations (Laidsaar-Powell et al. 2018a, 2018b).

Every person with cancer will have different communication needs, including cultural and language differences. When anyone involved in treatment communicates with patients, they should be truthful and transparent but aware of cultural and psychological sensitivities. In communicating with patients, healthcare providers should undertake to:

• empower patients to be active in treatment discussions
• use professionally trained interpreters if required – for example, when communicating with people from culturally diverse backgrounds whose primary spoken language is not English and for people with a hearing impairment (visit the Translating and Interpreting Services website for more information on interpreter and language services)
• use culturally sensitive and appropriate forums of communication for people from culturally diverse backgrounds and Aboriginal and Torres Strait Islander people, as appropriate
• provide appropriate information for people from culturally diverse backgrounds
• provide information on community-based supportive care services and resources to patients and their families and carer
• identify the patient’s substitute treatment decision-maker to ensure they are involved in relevant discussions
• ensure patients, their families or their carers have the opportunity to ask questions
• seek consent before conveying information between health professionals or healthcare teams or with family and carers
• be respectful if a patient seeks a second opinion from another health professional
• ensure patients do not have to convey information between areas of care (it is the provider’s and healthcare system’s responsibility to transfer information between areas of care)
• communicate in plain language (avoiding complex medical terms and jargon)
• ensure information is communicated at a level relevant to the patient’s health literacy and that of their families and carers (ACSQHC 2020)
• use tools, diagrams and aids as appropriate (Gilligan et al. 2017)
• ensure the patient is aware of how to access electronic patient information, where appropriate
• allow enough time for communication, especially when conveying complex or sensitive information such as an initial diagnosis
• check the patient’s and/or their family or carer’s understanding by asking the patient and/or their family or carer to say in their own words what has been conveyed.

Healthcare providers should also consider offering patients a question prompt list before a consultation and recordings or written summaries of their consultations afterwards. Question prompt lists are effective in improving communication and the psychological and cognitive outcomes of cancer patients. Recordings or summaries of key consultations improve patients’ recall of information and satisfaction (Hack et al. 2012). Written care plans, treatment summaries, survivorship care plans and advance care directives are effective records and communication tools.

Communication skills training programs that use role-play to develop skills and observe patient interactions to provide feedback, should be available to health professionals at every level of practice (Gilligan et al. 2017).

Communication skills training programs and resources can be found on the following websites:

• Australian Commission on Safety and Quality in Healthcare, Communicating for safety resource portal
• state and territory Cancer Councils for the relevant council
• eviQ
• VITAL talk

Telehealth has become an increasingly acceptable alternative to face-to-face consultations. When using telehealth, the team must consider what is best for the patient, including the patient’s preferences of the patient. A face-to-face consultation should be the first option, if it is safe, when delivering critical diagnosis information, a change in therapy or prescribing intensive treatment. If this is not an option, a video consultation should be considered, and the patient should be encouraged to have a support person with them to assist (Cancer Australia 2020).

Clinical trials are the foundation for improved cancer outcomes, allowing new treatments to be tested and offering patients access to potentially more effective therapies than otherwise available to them.

Clinical trials are available for multiple types of cancer and may be a valuable option for people with rare, difficult-to-treat conditions for which there may be limited evidence about how the condition is best treated or managed (Australian Clinical Trials 2015).

Treating specialists and multidisciplinary teams should be aware of or search for clinical trials that may be suitable for their patients. Specialists should be willing to refer appropriate patients to other treating centres to participate in research or clinical trials at any stage of the care pathway and be willing to discuss the pros and cons of participating in such trials. Any member of the multidisciplinary team can encourage cross-referral between clinical trials centres. Possible ineligibility to participate in a clinical trial should be discussed with the patient. Acknowledge disappointment and offer support in this instance.

Health services should strive to implement policies and procedures that facilitate equitable access to clinical trials for all patients, including culturally diverse patients, regional patients and those from Aboriginal or Torres Strait Islander communities.

The use of telehealth technology, such as the Australasian Tele-trial Model, hopes to improve access to trials for patients being treated in rural and regional areas (COSA 2016).

Australian Cancer Trials is a national clinical trials database. It provides information on the latest clinical trials in cancer care, including trials that are recruiting new participants. Search for a trial via its website.

You can also search the Australian New Zealand Clinical Trials Registry, the Australasian Leukaemia and Lymphoma Group trials website, ClinTrial Refer or ClinicalTrials.gov for international studies.

The Australasian Myeloma Research Consortium is the only myeloma-specific clinical trials group in Australia and New Zealand.

Australian & New Zealand Childrens Haematology/Oncology Group for clinical trials for children and adolescents.

Education and training

Research and clinical trials provide an opportunity to educate health professionals who are in training. Cancer centres may be affiliated with teaching hospitals, universities or research groups to promote higher education or to develop the academic workforce, leading to more sustainable practice. Specialists should be encouraged to take up and retain active membership to professional societies and organisations that can assist with professional development opportunities.