Optimal care pathway for people

with colorectal cancer

SECOND EDITION
Optimal care pathway for people
with colorectal cancer
SECOND EDITION

Endorsed by
Statement of acknowledgement
We acknowledge the Traditional Owners of Country throughout Australia and their continuing
connection to the land, sea and community. We pay our respects to them and their cultures and to
Elders past, present and emerging.

This work is available from the Cancer Council website <www.cancer.org.au/OCP>.

First published in November 2014. Updated in April 2016. This edition published in June 2021.

ISBN: 978-1-76096-144-2

Cancer Council Victoria and Department of Health Victoria 2021, Optimal care pathway for people
with colorectal cancer, 2nd edn, Cancer Council Victoria, Melbourne.

Enquiries about this publication can be sent to <[email protected]>.

Contents
Welcome and introduction i

Summary 1

Intent of the optimal care pathways 5

Optimal care pathway resources 6

Principles of the optimal care pathway 8

Principle 1: Patient-centred care 8

Principle 2: Safe and quality care 10

Principle 3: Multidisciplinary care 11

Principle 4: Supportive care 12

Principle 5: Care coordination 14

Principle 6: Communication 15

Principle 7: Research and clinical trials 17

Summary – optimal timeframes 18

Optimal care pathway 19

Step 1: Prevention and early detection 19

Step 2: Presentation, initial investigations and referral 22

Step 3: Diagnosis, staging and treatment planning 25

Step 4: Treatment 33

Step 5: Care after initial treatment and recovery 41

Step 6: Managing recurrent, residual or metastatic disease 47

Step 7: End-of-life care 50

Contributors and reviewers 53

Appendix A: Supportive care domains 55

Appendix B: Psychological needs 56

Appendix C: Special population groups 57

Appendix D: Complementary therapies 63

Appendix E: Members of the multidisciplinary team for colorectal cancer 64

Resource list 65

Glossary 68

References 70
Welcome and introduction
On behalf of the optimal care pathways team, welcome to the second edition of the optimal care
pathway guides to better cancer care.

Some cancers are simple to treat; many are complex. But the principles of high-quality care are similar for all
cancers and, if followed, are likely to achieve the best outcomes for patients and their families and carers.

Australia has an excellent healthcare system, but the pathway for cancer patients can be complex. Often
multiple health professionals are involved and both public and private types of health care are used. Our
cancer survival rates are as good as anywhere in the world, but many patients still report difficulties
during their care and, importantly, outcomes among different groups vary across the country.

That’s why we have developed the optimal care pathways. The optimal care pathways describe an
integrated model of cancer care that puts the patient’s needs first, along with the best of technical care.
They provide a national standard for the high-quality cancer care that all Australians should expect. We
all believe when it comes to cancer care, our patients and their families deserve the best care available.

The optimal care pathways should be read and understood by all those involved in cancer care. This
includes all health professionals, from surgeons, oncologists, haematologists, radiologists, general
practitioners and other doctors to allied health professionals, nurses and managers of cancer services.
Trainees in all disciplines should absorb the messages contained in the optimal care pathways.

We also recommend the optimal care pathways to all people affected by cancer, both patients
and carers. We encourage you to use the optimal care pathways to guide discussions with your
healthcare team and to help you make informed decisions about what’s right for you. There is a
specific optimal care pathway for Aboriginal and Torres Strait Islander people, while the Guides to
best cancer care for consumers are available in eight languages.

The optimal care pathways are endorsed by Cancer Australia, the former National Cancer Expert
Reference Group (a committee that reported to the former Australian Health Ministers Advisory
Committee and, through this committee, to the former Council of Australian Governments Health
Council) and all states and territories. The optimal care pathways have Australia-wide acceptance
and government support.

It’s important to note that the optimal care pathways are cancer pathways, not clinical practice
guidelines. The decision about ‘what’ treatment is given is a professional responsibility and will
usually be based on current evidence, clinical practice guidelines and the patients’ preferences.

The optimal care pathways were updated in 2020, at a time when the global COVID-19 pandemic
was challenging the Australian healthcare sector in an unprecedented way. The pandemic led to
rapid practice change, including greater uptake of telehealth. Where appropriate, learnings have
informed review of the pathways.

I would like to thank everyone involved for their generous contribution to the development and
revision of the optimal care pathways. This includes many health professionals (noted in the
optimal care pathways) and the strong support of federal and state governments.

Professor Robert J S Thomas OAM

Chair, Optimal Care Pathways Project Steering Committee

i
 Summary
The optimal care pathways describe the standard of care that should be available to all cancer patients treated in
Australia. The pathways support patients and carers, health systems, health professionals and services, and encourage
consistent optimal treatment and supportive care at each stage of a patient’s journey. Seven key principles underpin the
guidance provided in the pathways: patient-centred care; safe and quality care; multidisciplinary care; supportive care;
Support: Assess supportive care needs at every step of the pathway and refer to appropriate health professionals or organisations.

care coordination; communication; and research and clinical trials.

This quick reference guide provides a summary of the Optimal care pathway for people with colorectal cancer.

Please note that not all patients will follow every step of the pathway.

Step 1: Prevention and early detection

Prevention Early detection Checklist
Recommendations for reducing the risk of The NBCSP invites people starting at age ❏ Individual risk of developing
colorectal cancer: 50 and continuing to age 74 (at average cancer assessed
• completing the National Bowel Cancer risk and asymptomatic) to screen for bowel ❏ Education on screening
Screening Program (NBCSP) at-home cancer using a free, simple test at home. recommendations appropriate
bowel cancer test, every 2 years if aged Screening recommendations to the patient’s risk
50–74 years For category 1 (near average risk) ❏ Encourage NBCSP iFOBT
• eating a healthy diet, including plenty patients, an immunochemical faecal occult to eligible patients
of vegetables, fruit and whole grains blood test (iFOBT) is recommended every ❏ Recent weight changes
while minimising intake of red meat, 2 years between 50 and 74 years of age. discussed and weight
barbequed/grilled meat and processed For category 2 (moderately increased recorded
meat risk) patients, offer iFOBT every 2 years ❏ Alcohol intake discussed and
• maintaining a healthy body weight starting at age 40, then colonoscopy recorded and support for
• undertaking regular physical activity every 5 years starting at age 50. reducing alcohol consumption
• avoiding or limiting alcohol intake offered if appropriate
For category 3 (high risk) patients, offer
• not smoking. iFOBT every two years starting at age 35, ❏ Smoking status discussed
then colonoscopy every 5 years from age and recorded and brief
Consider aspirin (100–300 mg per day)
45 to age 74. smoking cessation advice
as a prevention measure for people who
offered to smokers
are 50–70 years old including those at Refer to the colorectal cancer optimal
an average risk of colorectal cancer, in ❏ Physical activity recorded
care pathway for more about the risk
conjunction with other comorbidities. categories. ❏ Referral to a dietitian,
physiotherapist or exercise
physiologist considered
❏ Education on being sun
smart considered

Step 2: Presentation, initial investigations and referral

The following signs, symptoms and • unexplained rectal or abdominal mass Checklist
results should be investigated: • unexplained weight loss ❏ Signs, symptoms and iFOBT
• positive iFOBT • lethargy. recorded
• passage of blood with or without Initial investigations include: ❏ Supportive care needs
mucus in faeces • detailed family history for patients assessment completed
• unexplained iron deficiency anaemia presenting with possible symptoms and recorded, and referrals
• change in bowel habit (loose stools or of colorectal cancer to allied health services
constipation), especially a recent one actioned as required
• physical examination
• undiagnosed abdominal pain or ❏ Patient notified of support
• digital rectal examination
tenderness services such as Cancer
• full blood examination and iron studies.
Council 13 11 20

Patients first – optimal care 1

 Step 2: Presentation, initial investigations and referral continued
Referral options Communication Checklist continued
Support: Assess supportive care needs at every step of the pathway and refer to appropriate health professionals or organisations.

At the referral stage, the patient’s GP or The GP’s responsibilities include: ❏ Referral options discussed
other referring doctor should advise the • explaining to the patient and/or carer with the patient and/or carer
patient about their options for referral, who they are being referred to and why including cost implications
waiting periods, expertise, if there are • supporting the patient and/or
likely to be out-of-pocket costs and Timeframe
carer while waiting for specialist
the range of services available. This will appointments informing the patient Test results should be provided
enable patients to make an informed and/ or carer that they can contact to the patient within 1 week
choice of specialist and health service. Cancer Council on 13 11 20. of testing.
If symptoms suggest colorectal
cancer, patients should be
referred and colonoscopy
completed within 4 weeks.
Patients should see a surgeon
within 2 weeks of GP referral
following a positive diagnosis of
colorectal cancer via colonoscopy.

Step 3: Diagnosis, staging and treatment planning

Diagnosis and staging Research and clinical trials Checklist
For colon and rectal cancer: Consider enrolment where available ❏ Diagnosis confirmed
• CT scan of the chest, and appropriate. Search for a trial ❏ Full histology obtained
abdomen and pelvis <www.australiancancertrials.gov.au>. ❏ Performance status and
• MRI liver Communication comorbidities measured
• PET-CT. The lead clinician’s1 responsibilities and recorded
For rectal cancer: include: ❏ Patient discussed at an
• discussing a timeframe for diagnosis MDM and decisions provided
• endorectal ultrasound.
and treatment options with the patient to the patient and/or carer
Genetic testing ❏ Clinical trial enrolment
and/or carer
Up to 5% of colorectal cancers considered
• explaining the role of the
are specifically inherited (familial ❏ Supportive care needs
multidisciplinary team in treatment
adenomatous polyposis and lynch assessment completed
planning and ongoing care
syndrome) and up to 25% may have and recorded, and referrals
• encouraging discussion about the
some form of inherited component. to allied health services
diagnosis, prognosis, advance
Find out more about colorectal cancer care planning and palliative care actioned as required
genetic testing <https://wiki.cancer. while clarifying the patient’s wishes, ❏ Patient referred to support
org.au/australia/Guidelines:Colorectal_ needs, beliefs and expectations, services (e.g. Cancer
cancer/High-risk_familial_syndromes>. and their ability to comprehend the Council) as required
Treatment planning communication ❏ Treatment costs discussed
The multidisciplinary team should discuss • providing appropriate information and with the patient and/or carer
all newly diagnosed patients within referral to support services as required
Timeframe
2 weeks of diagnosis and staging. • communicating with the patient’s GP
about the diagnosis, treatment plan and Investigations should be
Some cases of colorectal cancer present
recommendations from multidisciplinary completed within 2 weeks.
as emergencies and require appropriate
acute care followed by management from meetings (MDMs).
a multidisciplinary team.

1 Lead clinician – the clinician who is responsible for managing patient care.
The lead clinician may change over time depending on the stage of the care pathway and where care is being provided.

2
 Step 4: Treatment
Support: Assess supportive care needs at every step of the pathway and refer to appropriate health professionals or organisations.

Establish intent of treatment Palliative care Checklist

• Curative Early referral to palliative care can ❏ Intent of treatment
• Anti-cancer therapy to improve improve quality of life and in some cases established
quality of life and/or longevity without survival. Referral should be based on ❏ Risks and benefits of
expectation of cure need, not prognosis. For more, visit the treatments discussed with
• Symptom palliation. Palliative Care Australia website <www. the patient and/or carer
palliativecare.org.au>. ❏ Treatment plan discussed
Surgery
Communication with the patient and/or carer
• Surgery is recommended for many
patients with colorectal cancer. The lead clinician and team’s ❏ Treatment plan provided to
responsibilities include: the patient’s GP
• Surgeons should have adequate
qualifications and expertise, especially • discussing treatment options with ❏ Treating specialist has
those undertaking rectal surgery. the patient and/or carer including the adequate qualifications,
intent of treatment as well as risks and experience and expertise
Radiation therapy
benefits ❏ Supportive care needs
• Neoadjuvant radiation therapy is assessment completed
• discussing advance care planning
recommended for those with high-risk and recorded, and referrals
with the patient and/or carer where
rectal cancer. to allied health services
appropriate
• Radiation therapy may be given actioned as required
• communicating the treatment plan to
with palliative intent in symptomatic, ❏ Early referral to palliative care
the patient’s GP
non-resectable, locally advanced considered
colorectal cancer. • helping patients to find appropriate
support for exercise programs where ❏ Advance care planning
• Radiation therapy may be suitable discussed with the patient
appropriate to improve treatment
for patients with colon cancer where and/or carer
outcomes.
the tumour has penetrated a fixed
structure.
Systemic therapy Timeframe
Systemic therapy may be beneficial for Surgery conducted within
patients with: 5 weeks of investigations and
• a high risk of relapse and who may MDM if no neoadjuvant therapy
benefit from adjuvant therapy is required for patients with
• locally advanced (high-risk) rectal colorectal cancer.
cancer, treated with chemoradiation Surgery conducted 8–12 weeks
therapy after neoadjuvant therapy for
• non-resectable, locally advanced or patients with rectal cancer.
metastatic disease. Neoadjuvant radiation and
neoadjuvant chemotherapy
should begin within 3 weeks
of the MDM.
Adjuvant chemotherapy
should begin within 8 weeks
of surgery.

Patients first – optimal care 3

 Step 5: Care after initial treatment and recovery
Provide a treatment and follow-up • contact information for key healthcare Checklist
summary to the patient, carer and providers who can offer support for ❏ Treatment and follow-up
GP outlining: lifestyle modification
Support: Assess supportive care needs at every step of the pathway and refer to appropriate health professionals or organisations.

summary provided to the

• the diagnosis, including tests • a process for rapid re-entry to medical patient and/or carer and the
performed and results services for suspected recurrence. patient’s GP
• tumour characteristics Communication ❏ Supportive care needs
• treatment received (types and date) The lead clinician’s responsibilities assessment completed
• current toxicities (severity, management include: and recorded, and referrals
and expected outcomes) to allied health services
• explaining the treatment summary and
• interventions and treatment plans from actioned as required
follow-up care plan to the patient and/
other health professionals or carer ❏ Patient-reported outcome
• potential long-term and late effects of measures recorded
• informing the patient and/or carer about
treatment and care of these secondary prevention and healthy living
• supportive care services provided • discussing the follow-up care plan with
• a follow-up schedule, including tests the patient’s GP.
required and timing

Step 6: Managing recurrent, residual or metastatic disease

Detection and preferences. This can guide future Checklist
Most recurrent disease will be detected treatment if the patient is unable to speak ❏ Treatment intent, likely
via routine follow-up or by the patient for themselves. outcomes and side effects
presenting with symptoms. Survivorship and palliative care explained to the patient and/
Treatment Survivorship and palliative care should be or carer and the patient’s GP
Evaluate each patient for whether referral addressed and offered early. Early referral ❏ Supportive care needs
to the original multidisciplinary team to palliative care can improve quality of assessment completed
is appropriate. Treatment will depend life and in some cases survival. Referral and recorded, and referrals
on the location and extent of disease, should be based on need, not prognosis. to allied health services
previous management and the patient’s Communication actioned as required
preferences. ❏ Advance care planning
The lead clinician and team’s
discussed with the patient
Advance care planning responsibilities include:
and/or carer
Advance care planning is important for • explaining the treatment intent, likely
❏ Patient referred to palliative
all patients but especially those with outcomes and side effects to the patient
care if appropriate
advanced disease. It allows them to and/or carer and the patient’s GP.
❏ Routine follow-up visits
plan for their future health and personal
scheduled
care by thinking about their values

Step 7: End-of-life care

Palliative care • establishing transition plans to Checklist
Consider a referral to palliative care. Ensure ensure the patient’s needs and goals ❏ Supportive care needs
an advance care directive is in place. are considered in the appropriate assessment completed
environment. and recorded, and referrals
Communication
to allied health services
The lead clinician’s responsibilities
actioned as required
include:
❏ Patient referred to
• being open about the prognosis and
palliative care
discussing palliative care options with
❏ Advance care directive in place
the patient

Visit our guides to best cancer care webpage <www.cancercareguides.org.au> for consumer guides. Visit our OCP
webpage <www.cancer.org.au/OCP> for the optimal care pathway and instructions on how to import these guides
into your GP software.

4
Intent of the optimal care pathways
Optimal care pathways map seven key steps in cancer care. Each of these steps outlines nationally
agreed best practice for the best level of care. While the seven steps appear in a linear model, in
practice, patient care does not always occur in this way but depends on the particular situation (e.g.
the type of cancer, when and how the cancer is diagnosed, prognosis, management, the patient’s
decisions and their physiological response to treatment).

The principles underpinning optimal care pathways always put patients at the centre of care
throughout their experience and prompt the healthcare system to deliver coordinated care.

The optimal care pathways do not constitute medical advice or replace clinical judgement,
and they refer to clinical guidelines and other resources where appropriate.

Figure 1: The optimal care pathway

Communication Patient-centred care

Care is patient-centred
Step 1: Prevention
and is responsive to the

Research and clinical trials

and early detection
preferences, needs and
Multidisciplinary care

values of patients,
families and carers.
Step 2: Presentation, initial
investigations and referral

Step 3: Diagnosis, staging

and treatment planning
Referral to palliative care and/or end-of-life care as needed

Step 6:
Step 4: Treatment Managing
recurrent,
Survivorship

residual or
metastic disease
Safe and quality care

Step 5: Follow-up care after

Care coordination

treatment and recovery

Step 7:
End-of-life
Life after cancer care

Screening and referral to supportive care should be considered

throughout all cancer care.

Supportive care

Patients first – optimal care 5

Optimal care pathway resources
There are three resources for each pathway: an optimal care pathway, a quick reference guide for
health professionals and a guide to best cancer care for patients, carers and families.

Optimal care pathways

This optimal care pathway is designed for health professionals
and health services. However, patients and carers may find
useful information in this version to help understand the process
their treating health professionals are following.

This resource aims to:

• assist health professionals to provide optimal care and support

to patients with cancer, their families and carers
• provide optimal timeframes for delivering evidence-based care
• emphasise the importance of communication and collaboration
between health providers and people affected by cancer
• assist and inform new health professionals or trainees who are entering the cancer care
workforce
• provide value to health systems to identify gaps in current cancer services, bring about
quality improvement initiatives and improve how services are planned and coordinated.
Adherence to the pathways should be measured wherever possible.

Visit the Cancer Council website <www.cancer.org.au/OCP> to view the optimal care pathways.

Quick reference guides

The quick reference guides are for health professionals and
health services. They provide a summary of each optimal care
pathway for health professionals and patients.

The quick reference guides include:

• optimal timeframes within which tests or procedures should

be completed
• checklists with indicators related to recommendations in the
optimal care pathway.

Visit the Cancer Council website <www.cancer.org.au/OCP>

to view the quick reference guide for this optimal care pathway.

6
Guides to best cancer care
The guides to best cancer care are consumer resources that
help patients understand the optimal cancer care that should be
provided at each step. Carers, family and friends may also find the
guides helpful.

The guides to best cancer care:

• include optimal timeframes within which tests or procedure

should be completed
• include prompt questions to support patients to understand
what might happen at each step of their cancer journey and
to consider what questions to ask
• provide information to help patients and carers communicate with health professionals
• are available in eight languages.

Visit the Cancer Council’s website <www.cancercareguides.org.au> to view the guides to best
cancer care.

Optimal care pathway for Aboriginal and

Torres Strait Islander people with cancer
The Optimal care pathway for Aboriginal and Torres Strait Islander
people with cancer provides a tool to help reduce disparities and
improve outcomes and experiences for Aboriginal and Torres
Strait Islander people with cancer. This resource can be used in
conjunction with the optimal care pathway for each cancer type.

Visit the Cancer Australia website <https://www.canceraustralia.

gov.au/affected-cancer/atsi/resources-health> to view the optimal
care pathway for Aboriginal and Torres Strait Islander people.

Patients first – optimal care 7

Principles of the optimal care pathway

The seven principles of care define appropriate and supportive cancer care that is the
right of all patients and the right of those caring for and connected with them.

Figure 2: The seven principles underpinning the optimal care pathway

UNDERPINNING PRINCIPLES

PATIENT- SAFE AND MULTI- SUPPORTIVE CARE COMMUNI- RESEARCH

CENTRED CARE QUALITY CARE DISCIPLINARY CARE COORDINATION CATION AND CLINICAL
CARE TRIALS

Principle 1: Patient-centred care

Patient-centred care informs and involves patients in their care and respects and
responds to the preferences, needs and values of patients, families and carers.

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 patients to be informed
• 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.

8
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.

Patients first – optimal care 9

For more information on informed financial consent see Cancer Council’s ‘Standard for informed financial
consent’ <https://www.cancer.org.au/health-professionals/resources/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
<https://www.cancer.org.au/about-cancer/patient-support/practical-and-financial-assistance.html>.

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.

Principle 2: Safe and quality care

Hospitals and health professionals are responsible for providing

safe and quality care.

Health professionals need to have appropriate training and experience to undertake treatment for
colorectal cancer. 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 2020a).

10
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 <https://www.achs.org.au/> 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 2018a). 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 2018a).

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.

Principle 3: Multidisciplinary care

Multidisciplinary care is an integrated team approach that involves all relevant

health professionals discussing all relevant treatment options and making joint
recommendations about treatment and supportive care plans, taking into
account the personal preferences of patients.

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).

Patients first – optimal care 11

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’ <www.
canceraustralia.gov.au/clinical-best-practice/multidisciplinary-care/all-about-multidisciplinary-care/
principles-multidisciplinary-care>.

Principle 4: Supportive care

Supportive care is a vital part of any cancer treatment program. Supportive care
deals with issues that emerge for patients, families and carers from the effects
of the cancer diagnosis and its treatment. It is made up of all the services, information and
resources patients may need to meet their physical, psychological, social, information and
spiritual needs from the time of diagnosis.

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 on page 13).
Clinical review and individual assessment are still required to ensure all patient concerns are identified.

12
 More information
Visit the WeCan website <www.wecan.org.au> for information and resources on
supportive care.

Validated screening tools

• National Comprehensive Cancer Network Distress Thermometer and Problem Checklist
• Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP).

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, B and C for more information on supportive care and the specific needs of
people that may arise.

Patients first – optimal care 13

Principle 5: Care coordination

Care coordination is the responsibility of every professional, both clinical and

non-clinical, who works with patients, their families and carers.

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.

14
Principle 6: Communication

Everyone employed in the healthcare system is responsible for ensuring the

communication needs of patients, their families and carers are met.

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 <www.
tisnational.gov.au> 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)

Patients first – optimal care 15

• 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 <https://c4sportal.safetyandquality.gov.au>
• state and territory Cancer Councils <www.cancer.org.au/about-us/state-and-territory-councils/>
for the relevant council
• eviQ <https://education.eviq.org.au>
• VITAL talk <www.vitaltalk.org>.

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. 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 2020a).

16
Principle 7: Research and clinical trials

Research and clinical trials play an important role in establishing the efficacy
and safety of diagnostic, prognostic and therapeutic interventions, as well as
establishing the role of psychological, supportive care and palliative care
interventions (Sjoquist & Zalcberg 2013).

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
<www.australiancancertrials.gov.au> via its website.

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.

Patients first – optimal care 17

Summary – optimal timeframes
Evidence-based guidelines, where they exist, should inform timeframes. Treatment teams need to
recognise that shorter timeframes for appropriate consultations and treatment can promote a better
experience for patients. Three steps in the pathway specify timeframes for care (Figure 3). They
are designed to help patients understand the timeframes in which they can expect to be assessed
and treated, and to help health services plan care delivery in accordance with expert-informed time
parameters to meet the expectation of patients. These timeframes are based on expert advice from
the Colorectal Cancer Working Group.

Figure 3: Timeframes for care

Step in pathway Care point Timeframe

Screening participation – National Bowel Cancer Screening Program (NBCSP) at-home bowel test is
recommended for average risk and asymptomatic people aged 50–74 years, every 2 years. People should
be encouraged to enter their GP’s details on the NBCSP form so the GP also receives their test results.

Presenting symptoms should be promptly and clinically

Signs and symptoms
triaged with a health professional

Initial investigations Test results should be provided to the patient

Presentation,
initiated by GP within 1 week of testing
initial
investigations
If symptoms suggest colorectal cancer, patients should
and referral
be referred and colonoscopy completed within 4 weeks
Referral to specialist The patient should see a surgeon within 2 weeks of GP
referral following a positive diagnosis of colorectal cancer
via colonoscopy

Investigations should be completed within 2 weeks.

Diagnosis and 10–15% of colorectal cancers will present as an
Diagnosis, staging emergency; this necessitates appropriate acute care
staging and followed by multidisciplinary management
treatment
planning Multidisciplinary
MDM should take place within 2 weeks of diagnosis
team meeting and
and staging
treatment planning

Colorectal cancer – surgery should be completed

within 5 weeks of investigations and MDM if no
neoadjuvant therapy required
Surgery
Rectal cancer with neoadjuvant therapy – surgery
should be completed 8–12 weeks after completion
of neoadjuvant therapy
Treatment
Neoadjuvant Neoadjuvant radiation therapy should begin
radiation therapy within 3 weeks of the MDM

Neoadjuvant chemotherapy should begin

within 3 weeks of the MDM
Systemic therapy
Adjuvant chemotherapy should begin
within 8 weeks of surgery

18
Optimal care pathway

Seven steps of the optimal care pathway

Step 1: Prevention and early detection
Step 2: Presentation, initial investigations and referral
Step 3: Diagnosis, staging and treatment planning
Step 4: Treatment
Step 5: Care after initial treatment and recovery
Step 6: Managing recurrent, residual or metastatic disease
Step 7: End-of-life care

Colorectal cancer was the third most commonly diagnosed cancer in Australia in 2016. It is
estimated that it will be the fourth most commonly diagnosed cancer in 2020 (Cancer Australia
2020b). Bowel cancer is the second highest cause of death after lung cancer. In 2019, it was
estimated that the risk of an individual being diagnosed with colorectal cancer by their 85th birthday
would be one in 14 (one in 12 males and one in 17 females) (Cancer Australia 2019b).

Step 1: Prevention and early detection

This step outlines recommendations for the prevention and early detection of colorectal cancer.

Evidence shows that not smoking, avoiding or limiting alcohol intake, eating a healthy diet,
maintaining a healthy body weight, being physically active, being sun smart and avoiding exposure
to oncoviruses or carcinogens may help reduce cancer risk (Cancer Council Australia 2018).

1.1 Prevention
Recommendations for reducing the risk of colorectal cancer include:

• completing the National Bowel Cancer Screening Program (NBCSP) at-home bowel cancer test
every two years if aged 50–74 years
• eating a healthy diet, including plenty of vegetables, fruit and whole grains while minimising intake
of red meat, barbequed/grilled meat and processed meat
• maintaining a healthy body weight
• undertaking regular physical activity
• avoiding or limiting alcohol intake
• not smoking.

For all people aged 50–70 years, including those at average risk of colorectal cancer, aspirin
should be actively considered to prevent colorectal cancer, in conjunction with other comorbidities.
A low dose (100–300 mg per day) is recommended for at least 2.5 years (Cancer Council Australia
Colorectal Cancer Guidelines Working Party 2019). Benefit for cancer prevention (though shorter for
cardiovascular risk) is evident only 10 years after initiation, so a life expectancy of at least 10 years
should be taken into consideration in the advice to use aspirin (Cancer Council Australia Colorectal
Cancer Guidelines Working Party 2019).

Patients first – optimal care 19

1.2 Risk factors
Based on family history, people can be placed into one of three categories (described below) of
relative risk of developing colorectal cancer. Age is an independent risk factor for colorectal cancer.
These categories were developed by the Cancer Council Australia Colorectal Cancer Guidelines
Working Party (2019).

General practitioners and primary care nurses should educate patients and encourage them to
participate in the screening appropriate to the patient’s level of risk.

Category 1: Near average risk

Risk factors for category 1 patients include:

• no first- or second-degree relative with colorectal cancer

• one first-degree relative with colorectal cancer diagnosed before the age of 55
• one first-degree and one second-degree relative with colorectal cancer diagnosed
at 55 years or older.

People who have one relative with colorectal cancer diagnosed at age 55 or older should be advised
that their own risk of developing colorectal cancer could be up to twice the average risk but is still
not high enough to justify colorectal cancer screening by colonoscopy.

Category 2: Moderately increased risk

People in this category should be advised that their risk of developing colorectal cancer is at least
three times higher than average but could be up to six times higher than average, if they have any
of the following:

• one first-degree relative with colorectal cancer diagnosed before the age of 55
• two first-degree relatives with colorectal cancer at any age
• one first-degree relative and at least two second-degree relatives diagnosed with colorectal
cancer at any age.

Category 3: High risk

People in this category should be advised that their risk of colorectal cancer is at least seven times
higher than average but could be up to 10 times higher than average, if any of the following apply:

• at least three first-degree relatives diagnosed with colorectal cancer at any age
• at least three first-degree or second-degree relatives with colorectal cancer, with at least one
diagnosed before age 55 years
• they are a member of a family in which a gene mutation that confers a high risk of bowel cancer
has been identified.

20
1.3 Early detection
The NBCSP invites people starting at age 50 and continuing to age 74 (at average risk and
asymptomatic) to screen for bowel cancer using a free, simple test at home.

NBCSP participants with screen-detected bowel cancer are more likely to be diagnosed at a
less advanced stage than those who did not participate (Cancer Council Australia 2020). NBCSP
participants with screen-detected bowel cancer had a lower risk of bowel cancer mortality compared
with those who were diagnosed outside of the program (9.6 per cent vs 23.8 per cent) (AIHW
2018b). Bowel cancer screening on a population basis significantly reduces mortality and morbidity
(Cancer Council Australia 2020).

1.3.1 Screening recommendations

Cancer Council Australia Colorectal Cancer Guidelines Working Party (2019) recommends the following.

Category 1: Near average risk

For people with category 1 risk of colorectal cancer, an immunochemical faecal occult blood test
(iFOBT) should be performed every two years from age 50 to age 74.

Full examination of the large bowel by colonoscopy is recommended for people who have a positive
iFOBT.

Category 2: Moderately increased risk

For people with category 2 risk of colorectal cancer, offer iFOBT every two years starting at age 40,
then colonoscopy every five years starting at age 50. CT colonography may be offered if colonoscopy
is contraindicated.

Category 3: High risk

For people with category 3 risk of colorectal cancer, offer iFOBT every two years starting at age 35,
then colonoscopy every five years from age 45 to age 74. CT colonography may be offered if
colonoscopy is not feasible.

Consider referral to a familial cancer service for further risk assessment and possible genetic testing.

Refer to a bowel cancer specialist to plan appropriate surveillance and management.

1.3.2 Communication with patients, carers and families

First-degree relatives of people with colorectal cancer who fall into the category 2 (moderate risk)
group (where a relative is diagnosed under 55 years of age or where there are multiple first-degree
relatives with colorectal cancer) should be advised to see their general practitioner with a view to
referral for a colonoscopy if appropriate.

All other relatives should be advised to follow the average risk guidelines, including participating in
the National Bowel Cancer Screening Program.

Patients first – optimal care 21

Step 2: Presentation, initial investigations and referral
This step outlines the process for the general practitioner to initiate the right investigations
and refer to the appropriate specialist in a timely manner. The types of investigations the
general practitioner undertakes will depend on many factors, including access to diagnostic
tests, the availability of medical specialists and patient preferences.

2.1 Signs and symptoms

The following signs, symptoms and results should be investigated:

• positive iFOBT
• passage of blood with or without mucus in the faeces
• unexplained iron deficiency anaemia
• change in bowel habit (loose stools or constipation), especially a recent one that does not have
another explanation such as an infection or opioids
• undiagnosed abdominal pain or tenderness
• unexplained rectal or abdominal mass
• unexplained weight loss (Cancer Council Australia Colorectal Guidelines Working Party 2019)
• lethargy.

The presence of multiple signs and symptoms, particularly in combination with other underlying risk
factors, indicates an increased risk of colorectal cancer.

2.1.1 Timeframe for general practitioner consultation

Presenting symptoms should be promptly and clinically triaged with a health professional.

2.2 Assessments by the general practitioner

General practitioner examinations and investigations should include:

• physical examination
• digital rectal examination
• full blood examination and iron studies (Cancer Council Australia Colorectal Guidelines Working
Party 2019).

Note: a negative result from an iFOBT does not exclude cancer.

A detailed family history should be obtained from patients presenting with possible symptoms of
colorectal cancer.

2.2.1 Timeframe for completing investigations

Test results should be provided to the patient within one week of testing.

22
2.3 Initial referral
All patients referred for colonoscopy should be seen by a clinician or surgeon accredited in
colonoscopy by the Conjoint Committee of the Royal Australasian College of Surgeons, Royal
Australasian College of Physicians or Gastroenterological Society of Australia.

Patients should be enabled to make informed decisions about their choice of specialist and health
service. General practitioners should make referrals in consultation with the patient after considering
the clinical care needed, cost implications (see referral options and informed financial consent on
page 9), waiting periods, location and facilities, including discussing the patient’s preference for
health care through the public or the private system.

Referral for suspected or diagnosed colorectal cancer should include the following essential
information to accurately triage and categorise the level of clinical urgency:

• important psychosocial history and relevant medical history

• family history, current symptoms, medications and allergies
• results of current clinical investigations (imaging and pathology reports)
• results of all prior relevant investigations
• notification if an interpreter service is required.

Many services will reject incomplete referrals, so it is important that referrals comply with all relevant
health service criteria.

If access is via online referral, a lack of a hard copy should not delay referral.

If a pathological (or endoscopic) diagnosis has been made, the patient should be referred to a
general or colorectal surgeon affiliated with (or with access to) a multidisciplinary team. Some early
cancers can be managed by endoscopy alone without surgical consultation but should also be
considered by a multidisciplinary team.

The specialist should provide timely communication to the general practitioner about the consultation
and should notify the general practitioner if the patient does not attend appointments.

Aboriginal and Torres Strait Islander patients will need a culturally appropriate referral. To view the
optimal care pathway for Aboriginal and Torres Strait Islander people and the corresponding quick
reference guide, visit the Cancer Australia website <https://www.canceraustralia.gov.au/affected-
cancer/atsi/resources-health>. Download the consumer resources – Checking for cancer and
Cancer, from the Cancer Australia website <https://www.canceraustralia.gov.au/affected-cancer/
atsi/resources-people>.

2.3.1 Timeframe for referring to a specialist

If symptoms suggest colorectal cancer, patients should be referred and a colonoscopy completed
within four weeks of the general practitioner referral.

The patient should be seen by the surgeon within two weeks of the general practitioner referral
following a positive diagnosis of colorectal cancer via colonoscopy. The patient should bring a copy
of the colonoscopy report and other relevant medical and psychosocial history.

Patients first – optimal care 23

2.4 Support and communication
2.4.1 Supportive care
The patient’s general practitioner should consider an individualised supportive care assessment where
appropriate to identify the needs of an individual, their carer and family. Refer to appropriate support
services as required. See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific needs may arise for patients at this time:

• assistance for dealing with the emotional distress and/or anger of dealing with a potential cancer
diagnosis, anxiety/depression, interpersonal problems and adjustment difficulties
• management of physical symptoms including pain, fatigue and altered bowel function
• encouragement and support to increase levels of exercise (Cormie et al. 2018; Hayes et al. 2019).

For more information refer to the National Institute for Health and Care Excellence 2015
guidelines, Suspected cancer: recognition and referral <www.nice.org.uk/guidance/ng12/chapter/
Recommendations-on-patient-support-safety-netting-and-the-diagnostic-process>.

For additional information on supportive care and needs that may arise for different population
groups, see Appendices A, B and C.

2.4.2 Communication with patients, carers and families

The general practitioner is responsible for:

• providing patients with information that clearly describes to whom they are being referred, the
reason for referral and the expected timeframes for appointments
• requesting that patients notify them if the specialist has not been in contact within the expected
timeframe
• considering referral options for patients living rurally or remotely
• supporting the patient while waiting for the specialist appointment (Cancer Council nurses are
available to act as a point of information and reassurance during the anxious period of awaiting
further diagnostic information; patients can contact 13 11 20 nationally to speak to a cancer nurse).

More information
Refer to Principle 6 ‘Communication’ for communication skills training programs
and resources.

24
Step 3: Diagnosis, staging and treatment planning
Step 3 outlines the process for confirming the diagnosis and stage of cancer and for
planning subsequent treatment. The guiding principle is that interaction between appropriate
multidisciplinary team members should determine the treatment plan.

3.1 Specialist diagnostic work-up

The treatment team, after taking a thorough medical history and making a thorough medical examination
of the patient, should undertake the following investigations under the guidance of a specialist.

Patients thought to have resectable or potentially curable disease should have routine blood tests
(full blood count [FBC], urea and electrolytes [U&E], liver function tests [LFT], carcinoembryonic
antigen [CEA]), a complete colonic assessment by colonoscopy, or virtual colonoscopy in the case
of an impassable tumour plus the following, as clinically indicated:

For colon and rectal cancer:

• computed tomography (CT) scan of the chest, abdomen and pelvis

• if CT shows metastatic disease confined to the liver, MRI of the liver to assess for resectability
• PET-CT – this is recommended for patients who have suspicious metastatic disease at initial
staging. It also recommended for restaging for those who have potentially resectable/treatable
metastatic disease.

For rectal cancer:

• endorectal ultrasound to assess T1 and early T2 tumours in patients who may be appropriate
for local resection techniques.

It is essential that the treating surgeon accurately assesses the tumour location.

3.1.1 Timeframe for completing investigations

Investigations should be completed within two weeks.

Between 10 and 15 per cent of colorectal cancers will present as an emergency. This necessitates
appropriate acute care followed by management from a multidisciplinary team.

3.1.2 Genetic testing (family risk)

Between 1 and 5 per cent of colorectal cancers are specifically inherited (familial adenomatous
polyposis and lynch syndrome) and up to 25 per cent may have some inherited component.
The features that suggest a genetic predisposition may include:

• early age at onset

• multiple primary cancers
• multiple polyps
• the histological type of polyp(s)
• family history of similar or related cancers.

Universal testing for mismatch repair deficiency by IHC or MSI testing is now recommended as
standard practice for treatment-related and familial risk assessments.

Anyone diagnosed with cancer should have a detailed personal and family cancer history taken.

Patients first – optimal care 25

People with a strong family history of colorectal cancer or high-risk familial syndromes should be
referred to a familial cancer service for genetic risk assessment and possible genetic screening of
affected relatives. Younger patients under 50 years should be referred to a familial cancer service.
Consult relevant guidelines <https://www.eviq.org.au/cancer-genetics/referral-guidelines> to
determine if referral to a familial cancer service is appropriate.

Mainstream genetic testing is now available and funded through Medicare for the mismatch repair
genes, APC, MUTYH and the hamartomatous polyposis genes. However, a familial cancer service
assessment can assist and determine if genetic testing is appropriate. Genetic testing should be
offered when there is at least a 10 per cent chance of finding a causative ‘gene error’ (pathogenic
gene variant; previously called a mutation). Tumour testing for mismatch repair (MMR) protein
expression or microsatellite testing is the main avenue to determining this risk for lynch syndrome.
Usually testing begins with a variant search in a person who has had cancer (a diagnostic genetic
test). If a pathogenic gene variant is identified, variant-specific testing is available to relatives to see
if they have inherited the familial gene variant (predictive genetic testing). Depending on the personal
and family history, the relevant state health system may support funding in the public sector for
additional germline testing.

Pre-test counselling and informed consent is required before any genetic testing in any setting. A
familial cancer service can organise this, as well as provide risk management advice, facilitate family
risk notification and arrange predictive cascade genetic testing for the family.

Visit the Centre for Genetics Education website <www.genetics.edu.au/individuals-and-families/

cancer-in-the-family> for basic information about cancer in a family.

For detailed information and referral guidelines for colorectal cancer risk assessment and
consideration of genetic testing, see these resources:

• Clinical Guidelines Network ‘Introduction: high-risk familial syndromes’ <https://wiki.cancer.org.

au/australia/Guidelines:Colorectal_cancer/High-risk_familial_syndromes>
• National Comprehensive Cancer Network ‘Genetic/Familial High-Risk Assessment: Colorectal’
<https://www.nccn.org/professionals/physician_gls/pdf/genetics_colon.pdf>.

3.1.3 Pharmacogenetics
Pharmacogenetics describes how individual genetic differences can lead to differences in the
way certain medicines interact with the body. These interactions can affect the effectiveness of
medications and any side effects. Applying pharmacogenetics to treatment planning may help
patients to be prescribed the most appropriate treatment at the optimal dose from the beginning
of treatment (NHMRC 2013).

26
3.2 Staging
Staging is a critical element in treatment planning and should be clearly documented in the patient’s
medical record.

Preoperative staging, including the investigations listed in section 3.1, is used to define the extent of
tumour spread and to determine neoadjuvant therapy use.

• Clinical pathological staging will occur after surgery and is needed to inform post-treatment care.
• Synoptic reporting is recommended.
• Screen for loss of expression of MMR protein in all patients at the time of biopsy and after tumour
resection.

More information
Visit the Cancer Institute New South Wales website for information about understanding
the stages of cancer <www.cancer.nsw.gov.au/understanding-cancer/stages-of-cancer>.

3.3 Performance status

Patient performance status is a central factor in cancer care and should be clearly documented in
the patient’s medical record.

Performance status should be measured and recorded using an established scale such as the
Karnofsky scale or the Eastern Cooperative Oncology Group (ECOG) scale.

3.4 Treatment planning

3.4.1 Key considerations beyond treatment recommendations
A number of factors should be considered at this stage:

• the patient’s overall condition, life expectancy, personal preferences and decision-making capacity
• discussing the multidisciplinary team approach to care with the patient
• appropriate and timely referral to an MDM
• pregnancy and fertility
• support with travel and accommodation
• teleconferencing or videoconferencing as required.

3.4.2 Timing for multidisciplinary team planning

The multidisciplinary team should meet to discuss newly diagnosed patients within two weeks
of diagnosis and staging so that a treatment plan can be recommended and there can be early
preparation for the post-treatment phase. The level of discussion may vary, depending on the
patient’s clinical and supportive care factors. Some patients with non-complex cancers may not be
discussed by a multidisciplinary team; instead the team may have treatment plan protocols that will
be applied if the patient’s case (cancer) meets the criteria. If patients are not discussed at an MDM,
they should at least be named on the agenda for noting. The proposed treatment must be recorded
in the patient’s medical record and should be recorded in an MDM database where one exists.

Teams may agree on standard treatment protocols for non-complex care, facilitating patient review
(by exception) and associated data capture.

Results of all relevant tests and access to images should be available for the MDM. Information about
the patient’s concerns, preferences and social and cultural circumstances should also be available.

Patients first – optimal care 27

3.4.3 Responsibilities of the multidisciplinary team
The multidisciplinary team requires administrative support in developing the agenda for the meeting,
for collating patient information and to ensure appropriate expertise around the table to create an
effective treatment plan for the patient. The MDM has a chair and multiple lead clinicians. Each
patient case will be presented by a lead clinician (usually someone who has seen the patient before
the MDM). In public hospital settings, the registrar or clinical fellow may take this role. A member
of the team records the outcomes of the discussion and treatment plan in the patient history and
ensures these details are communicated to the patient’s general practitioner. The team should
consider the patient’s values, beliefs and cultural needs as appropriate to ensure the treatment
plan is in line with these.

3.4.4 Members of the multidisciplinary team for colorectal cancer

The multidisciplinary team should be composed of the core disciplines that are integral to providing
good care. Team membership should reflect both clinical and supportive care aspects of care.
Pathology and radiology expertise are essential.

See Appendix E for a list of team members who may be included in the multidisciplinary team for
colorectal cancer.

Core members of the multidisciplinary team are expected to attend most MDMs either in person or
remotely via virtual mechanisms. Additional expertise or specialist services may be required for some
patients. An Aboriginal and Torres Strait Islander cultural expert should be considered for all patients
who identify as Aboriginal or Torres Strait Islander.

3.4.5 Responsibilities of individual team members

The general practitioner who made the referral is responsible for the patient until care is passed to
another practitioner who is directly involved in planning the patient’s care.

The general practitioner may play a number of roles in all stages of the cancer pathway including
diagnosis, referral, treatment, shared follow-up care, post-treatment surveillance, coordination and
continuity of care, as well as managing existing health issues and providing information and support
to the patient, their family and carer.

A nominated contact person from the multidisciplinary team may be assigned responsibility for
coordinating care in this phase. Care coordinators are responsible for ensuring there is continuity
throughout the care process and coordination of all necessary care for a particular phase (COSA
2015). The care coordinator may change over the course of the pathway.

The lead clinician is responsible for overseeing the activity of the team and for implementing
treatment within the multidisciplinary setting.

28
3.5 Research and clinical trials
Patients should be encouraged to participate in research or clinical trials where available and appropriate.

For more information visit the Cancer Australia website <www.australiancancertrials.gov.au>.

3.6 Support and communication

3.6.1 Prehabilitation
Cancer prehabilitation uses a multidisciplinary approach combining exercise, nutrition and
psychological strategies to prepare patients for the challenges of cancer treatment such as surgery,
systemic therapy and radiation therapy. Team members may include anaesthetists, oncologists,
surgeons, haematologists, clinical psychologists, exercise physiologists, physiotherapists and
dietitians, among others.

Patient performance status is a central factor in cancer care and should be frequently assessed.
All patients should be screened for malnutrition using a validated tool, such as the Malnutrition
Screening Tool (MST). The lead clinician may refer obese or malnourished patients to a dietitian
preoperatively or before other treatments begin.

Patients who currently smoke should be encouraged to stop smoking before receiving treatment.
This should include an offer of referral to Quitline in addition to smoking cessation pharmacotherapy
if clinically appropriate.

Evidence indicates that patients who respond well to prehabilitation may have fewer complications
after treatment. For example, those who were exercising before diagnosis and patients who use
prehabilitation before starting treatment may improve their physical or psychological outcomes, or
both, and this helps patients to function at a higher level throughout their cancer treatment (Cormie
et al. 2017; Silver 2015).

For patients with colorectal cancer, the multidisciplinary team should consider these specific
prehabilitation assessments and interventions for treatment-related complications or major side effects:

• conducting a physical and psychological assessment to establish a baseline function level

• identifying impairments and providing targeted interventions to improve the patient’s function level
(Silver & Baima 2013)
• referral to a stoma nurse
• reviewing the patient’s medication to ensure optimisation and to improve adherence to medicine
used for comorbid conditions.

Following completion of primary cancer treatment, rehabilitation programs have considerable

potential to enhance physical function.

Patients first – optimal care 29

3.6.2 Fertility preservation and contraception
Cancer and cancer treatment may cause fertility problems. This will depend on the age of the
patient, the type of cancer and the treatment received. Infertility can range from difficulty having a
child to the inability to have a child. Infertility after treatment may be temporary, lasting months to
years, or permanent (AYA Cancer Fertility Preservation Guidance Working Group 2014).

Patients need to be advised about and potentially referred for discussion about fertility preservation
before starting treatment and need advice about contraception before, during and after treatment.
Patients and their family should be aware of the ongoing costs involved in optimising fertility. Fertility
management may apply in both men and women. Fertility preservation options are different for men
and women and the need for ongoing contraception applies to both men and women.

A diagnosis of colorectal cancer in reproductive-age women may carry a risk of future infertility.
Therefore, the risk of infertility, and fertility preservation options, both before and after cancer therapy,
should be discussed with patients and their families as part of the initial cancer management
planning. This discussion should be ongoing, with firm follow-up arrangements put into place. All
discussions should be documented in the patient’s medical record.

Treatment for colorectal cancer may reduce female fertility through damage to the ovaries (from
chemotherapy or radiation), damage to the uterus (from radiation) and potentially through damage
to the fallopian tubes from abdominal surgery. Chemotherapy, especially with alkylating agents, is
likely to reduce ovarian reserve, leading to a reduced fertility window or premature menopause. The
type of chemotherapy will determine the extent of infertility associated with follicle loss. Radiation of
the pelvis commonly induces permanent ovarian failure and may damage the uterus such that future
pregnancy confers risk to the mother and fetus.

Pelvic radiation may also induce vaginal adhesions or stenosis, limiting future sexual activity. This risk
can be reduced by using vaginal cylinders and topical oestrogen treatment.

Fertility preservation interventions including egg or embryo freezing and ovarian tissue
cryopreservation offer realistic options for having a family, although sometimes egg donation and
surrogacy may ultimately be required. Women of reproductive age who are concerned about future
fertility should be referred to a fertility specialist to discuss potential fertility preservation interventions.
Women with early menopause due to colorectal cancer treatment should be offered hormone
replacement therapy and (if possible) managed by a menopause specialist.

Some colorectal cancers may be associated with a genetic risk, and specific gene testing in IVF
embryos may reduce transmission risk. Some gastrointestinal cancers may be associated with a
high risk of other cancers including uterine cancers. Careful counselling and surveillance are required,
especially if future pregnancy is a consideration.

An early, collaborative and multidisciplinary approach with the Medical Services Advisory Committee
and the surgical, oncology and fertility preservation teams will maximise the opportunity for best
practice care and consideration for future fertility for young women diagnosed with colorectal cancer.

More information
See the Cancer Council website <www.cancervic.org.au/living-with-cancer/common-
side-effects/fertility/fertility-overview.html> for more information.

30
3.6.3 Supportive care
See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

• assistance for dealing with psychological and emotional distress while adjusting to the diagnosis;
treatment phobias; existential concerns; stress; difficulties making treatment decisions; anxiety
or depression or both; psychosexual issues such as potential loss of fertility and premature
menopause; history of sexual abuse; and interpersonal problems
• management of physical symptoms such as pain, fatigue (Australian Adult Cancer Pain
Management Guideline Working Party 2019), weight loss and altered bowel function
• malnutrition or undernutrition, identified using a validated nutrition screening tool such as the MST
(note that many patients with a high BMI [obese patients] may also be malnourished [WHO 2018])
• pre-surgical education with a stomal therapy nurse wherever a temporary or permanent stoma
is a possibility
• guidance for financial and employment issues (e.g. loss of income, travel and accommodation)
• requirements for rural patients and caring arrangements for other family members
• support for families or carers who are distressed with the patient’s cancer diagnosis
• support for families/relatives who may be distressed after learning of a genetically linked
cancer diagnosis
• specific spiritual needs that may benefit from the involvement of pastoral/spiritual care
• low self-esteem and disturbed body image, which are more prevalent in stoma patients than
in non-stoma patients.

Between 32 and 44 per cent of patients report psychological distress following a diagnosis of
colorectal cancer, and patients with stomas are at higher risk (Cancer Council Australia Colorectal
Cancer Guidelines Working Party 2019; El-Shami et al. 2015). This large number indicates a need
for screening patients to identify those at high risk of anxiety or depression at each visit. Provide
patients with tailored and accurate information before treatment, and facilitate patient decision
making about appearance-altering treatment and meeting others with a similar personal experience
(Hong et al. 2014). Consider pre-surgical referral to a psycho-oncologist for support over body image
expectations associated with surgical treatment.

Additionally, palliative care may be required at this stage.

For more information on supportive care and needs that may arise for different population groups,
see Appendices A, B and C.

Patients first – optimal care 31

3.6.4 Communication with patients, carers and families
In discussion with the patient, the lead clinician should undertake the following:

• establish if the patient has a regular or preferred general practitioner and, if the patient does not
have one, then encourage them to find one
• provide written information appropriate to the health literacy of the patient about the diagnosis
and treatment to the patient and carer and refer the patient to the Guide to best cancer care
(consumer optimal care pathway) for bowel cancer, as well as to relevant websites and support
groups as appropriate
• provide a treatment care plan including contact details for the treating team and information
on when to call the hospital
• discuss a timeframe for diagnosis and treatment with the patient and carer
• discuss the benefits of multidisciplinary care and gain the patient’s consent before presenting
their case at an MDM
• provide brief advice and refer to Quitline (13 7848) for behavioural intervention if the patient
currently smokes (or has recently quit), and prescribe smoking cessation pharmacotherapy,
if clinically appropriate
• recommend an ‘integrated approach’ throughout treatment regarding nutrition, exercise and
minimal or no alcohol consumption among other considerations
• communicate the benefits of continued engagement with primary care during treatment for
managing comorbid disease, health promotion, care coordination and holistic care
• where appropriate, review fertility needs with the patient and refer for specialist fertility
management (including fertility preservation, contraception, management during pregnancy
and of future pregnancies)
• be open to and encourage discussion about the diagnosis, prognosis (if the patient wishes to
know) and survivorship and palliative care while clarifying the patient’s preferences and needs,
personal and cultural beliefs and expectations, and their ability to comprehend the communication
• encourage the patient to participate in advance care planning including considering appointing
one or more substitute decision-makers and completing an advance care directive to clearly
document their treatment preferences. Each state and territory has different terminology and
legislation surrounding advance care directives and substitute decision-makers.

3.6.5 Communication with the general practitioner

The lead clinician has these communication responsibilities:

• involving the general practitioner from the point of diagnosis

• ensuring regular and timely communication with the general practitioner about the diagnosis,
treatment plan and recommendations from MDMs and inviting them to participate in MDMs
(consider using virtual mechanisms)
• supporting the role of general practice both during and after treatment
• discussing shared or team care arrangements with general practitioners or regional cancer
specialists, or both, together with the patient.

More information
Refer to Principle 6 ‘Communication’ for communication skills training programs
and resources.

32
Step 4: Treatment
Step 4 describes the optimal treatments for colorectal cancer, the training and experience
required of the treating clinicians and the health service characteristics required for optimal
cancer care.

All health services must have clinical governance systems that meet the following integral requirements:

• identifying safety and quality measures

• monitoring and reporting on performance and outcomes
• identifying areas for improvement in safety and quality (ACSQHC 2020).

Step 4 outlines the treatment options for colorectal cancer. For detailed clinical information on
treatment options refer to these resources:

• the ‘Clinical practice guidelines for the prevention, early detection and management of colorectal
cancer’ <https://wiki.cancer.org.au/australia/Guidelines:Colorectal_cancer>
• European Society of Medical Oncology ‘Clinical Practice Guidelines: Gastrointestinal cancers’
<https://www.esmo.org/guidelines/gastrointestinal-cancers>
• National Comprehensive Cancer Network ‘Colorectal Cancer Screening’ <https://www.nccn.org/
professionals/physician_gls/pdf/colorectal_screening.pdf>
• The American Society for Radiation Oncology ‘Appropriate Customization of Radiation Therapy
for Stage II and III Rectal Cancer: an ASTRO Clinical Practice Statement Using the RAND/UCLA
Appropriateness Method’ <https://www.practicalradonc.org/article/S1879-8500(15)00413-0/fulltext>.

4.1 Treatment intent

The intent of treatment can be defined as one of the following:

• curative
• anti-cancer therapy to improve quality of life and/or longevity without expectation of cure
• symptom palliation.

The treatment intent should be established in a multidisciplinary setting, documented in the patient’s
medical record and conveyed to the patient and carer as appropriate.

The potential benefits need to be balanced against the morbidity and risks of treatment.

The lead clinician should discuss the advantages and disadvantages of each treatment and
associated potential side effects with the patient and their carer or family before treatment consent is
obtained and begins so the patient can make an informed decision. Supportive care services should
also be considered during this decision-making process. Patients should be asked about their use of
(current or intended) complementary therapies (see Appendix D).

Patients first – optimal care 33

Timeframes for starting treatment should be informed by evidence-based guidelines where they
exist. The treatment team should recognise that shorter timeframes for appropriate consultations
and treatment can promote a better experience for patients.

Initiate advance care planning discussions with patients before treatment begins (this could include
appointing a substitute decision-maker and completing an advance care directive). Formally involving
a palliative care team/service may benefit any patient, so it is important to know and respect each
person’s preference (AHMAC 2011).

4.2 Treatment options

4.2.1 Surgery
Surgery is recommended for many patients diagnosed with colorectal cancer.

Timeframe for starting treatment

• Colorectal cancer – surgery should be completed within five weeks of completing investigations
and the MDM if no neoadjuvant therapy is required.
• Rectal cancer with neoadjuvant therapy – surgery should be completed in eight to 12 weeks
after completing neoadjuvant therapy.

Training and experience required of the surgeon

• Surgeon (FRACS or equivalent) with adequate training and experience and institutional
cross-credentialing and the agreed scope of practice within this area.
• Specifically, for rectal surgery, surgeons must be sub-specialists with an appropriate level
of training and experience and treat an appropriate caseload annually.

Documented evidence of the surgeon’s training and experience, including their specific
(sub-specialty) experience with colorectal cancer and procedures to be undertaken, should
be available.

Health service characteristics

To provide safe and quality care for patients having surgery, health services should have these features:

• stomal therapy support

• critical care support
• 24-hour medical staff availability
• 24-hour operating room access and intensive care unit
• diagnostic imaging
• pathology
• nuclear medicine imaging.

34
4.2.2 Radiation therapy
Some patients may benefit from radiation therapy:

• patients with high-risk rectal cancer (neoadjuvant therapy)

• patients with symptomatic, non-resectable locally advanced rectal cancer who may benefit
from radiation therapy with or without concurrent chemotherapy given with palliative intent
• patients with colon cancer where the tumour has penetrated a fixed structure.

Timeframe for starting treatment

Neoadjuvant radiation therapy should begin within three weeks of the MDM.

Training and experience required of the appropriate specialists

The appropriate specialist should be a radiation oncologist (FRANZCR) with adequate training and
experience with the agreed scope of practice in colorectal cancer.

The training and experience of the radiation oncologist should be documented.

Health service unit characteristics

To provide safe and quality care for patients having radiation therapy, health services should have
these features:

• linear accelerator (LINAC) capable of image-guided radiation therapy (IGRT)

• dedicated CT planning
• access to MRI and PET imaging
• automatic record-verify of all radiation treatments delivered
• a treatment planning system
• trained medical physicists, radiation therapists and nurses with radiation therapy experience
• coordination for combined therapy with systemic therapy, especially where facilities are not
co-located
• participation in Australian Clinical Dosimetry Service audits
• an incident management system linked with a quality management system.

4.2.3 Systemic therapy

Some patients may benefit from systemic therapy:

• those at high risk of relapse and who may benefit from adjuvant therapy
• those with locally advanced (high-risk) rectal cancer, treated with neoadjuvant chemoradiation therapy
• those with non-resectable, locally advanced or metastatic disease.

Patients first – optimal care 35

Timeframes for starting treatment
• Neoadjuvant chemotherapy should begin within three weeks of the MDM.
• Adjuvant chemotherapy should begin within eight weeks of surgery.

Training and experience required of the appropriate specialists

Medical oncologists must have training and experience of this standard:

• Fellow of the Royal Australian College of Physicians (or equivalent)

• adequate training and experience that enables institutional credentialing and agreed scope
of practice within this area (ACSQHC 2015).

Cancer nurses should have accredited training in these areas:

• anti-cancer treatment administration

• specialised nursing care for patients undergoing cancer treatments, including side effects and
symptom management
• the handling and disposal of cytotoxic waste (ACSQHC 2020).

Systemic therapy should be prepared by a pharmacist whose background includes this experience:

• adequate training in systemic therapy medication, including dosing calculations according to

protocols, formulations and/or preparation.

In a setting where no medical oncologist is locally available (e.g. regional or remote areas), some
components of less complex therapies may be delivered by a general practitioner or nurse with
training and experience that enables credentialing and agreed scope of practice within this area.
This should be in accordance with a detailed treatment plan or agreed protocol, and with
communication as agreed with the medical oncologist or as clinically required.

The training and experience of the appropriate specialist should be documented.

Health service characteristics

To provide safe and quality care for patients having systemic therapy, health services should have
these features:

• a clearly defined path to emergency care and advice after hours

• access to diagnostic pathology including basic haematology and biochemistry, and imaging
• cytotoxic drugs prepared in a pharmacy with appropriate facilities
• occupational health and safety guidelines regarding handling of cytotoxic drugs, including
preparation, waste procedures and spill kits (eviQ 2019)
• guidelines and protocols to deliver treatment safely (including dealing with extravasation of drugs)
• coordination for combined therapy with radiation therapy, especially where facilities are not co-located
• appropriate molecular pathology access.

36
4.2.4 Targeted therapies and immunotherapy
There are several targeted therapies that may be used as part of treatment for colorectal cancer.
These include bevacizumab and cetuximab, among others. They are only used for metastatic
disease in conjunction with chemotherapy.

There is a role for immunotherapy in selected metastatic cancer cases and currently only in
microsatellite unstable tumours.

4.2.5 Emerging therapies

The key principle for precision medicine is prompt and clinically oriented communication and
coordination with an accredited laboratory and pathologist. Tissue analysis is integral for access to
emerging therapies and, as such, tissue specimens should be treated carefully to enable additional
histopathological or molecular diagnostic tests in certain scenarios.

There is an increasing role for molecular pathology including RAS status, BRAF status and MSI
status, which will influence treatment options.

MMR testing should be done routinely on all primary tumours. Methylation testing for tumours showing
MLH1 loss should be undertaken if available. Methylation effectively excludes lynch syndrome.

For metastatic disease, molecular pathology is important including RAS status, BRAF status and MMR.

4.3 Palliative care

Early referral to palliative care can improve the quality of life for people with cancer and in some
cases may be associated with survival benefits (Haines 2011; Temel et al. 2010; Zimmermann
et al. 2014). This is particularly true for cancers with poor prognosis.

The lead clinician should ensure patients receive timely and appropriate referral to palliative care
services. Referral should be based on need rather than prognosis. Emphasise the value of palliative
care in improving symptom management and quality of life to patients and their carers.

The ‘Dying to Talk’ resource may help health professionals when initiating discussions with patients
about future care needs (see ‘More information’). Ensure that carers and families receive information,
support and guidance about their role in palliative care (Palliative Care Australia 2018).

Patients, with support from their family or carer and treating team, should be encouraged to consider
appointing a substitute decision-maker and to complete an advance care directive.

Refer to step 6 for a more detailed description of managing patients with recurrent, residual or
metastatic disease.

More information
These online resources are useful:

• Advance Care Planning Australia <www.advancecareplanning.org.au>

• Care Search <www.caresearch.com.au/Caresearch/>
• Dying to Talk <www.dyingtotalk.org.au>
• the Palliative Care resource kit <www.health.gov.au/health-topics/palliative-care>
• Palliative Care Australia (for patients and carers) <www.palliativecare.org.au>.

Patients first – optimal care 37

4.4 Research and clinical trials
The team should support the patient to participate in research or clinical trials where available and
appropriate. Many emerging treatments are only available on clinical trials that may require referral
to certain trial centres.

For more information visit the Cancer Australia website <www.australiancancertrials.gov.au>.

4.5 Support and communication

4.5.1 Supportive care
See validated screening tools mentioned in Principle 4 ‘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
• managing physical symptoms such as pain, weight loss, fatigue, altered bowel function and/or
diarrhoea (patients can talk about managing these symptoms with specialist nurses such as a
stomal therapy nurse or continence nurse)
• gastrointestinal symptoms (e.g. nausea, vomiting, mucositis and loss of appetite) as a result of
chemotherapy, requiring optimal symptom control with medication and referral to a dietitian if
dietary intake is affected
• odours and flatus arising from stomas, faecal or urinary fistulae (referral to continence nurses or
stomal therapy nurses may be useful)
• assistance with managing complex medication regimens, multiple medications, assessment
of side effects and assistance with difficulties swallowing medications – referral to a pharmacist
may be required
• decline in mobility or functional status as a result of treatment
• reduced sexual interest and sexual dysfunction – particularly in stoma patients compared with
patients with intact sphincters (Reese et al. 2014) – may require referral to medical specialists.
Sensitive discussion and referral to a clinician skilled in this area may be appropriate
• erectile dysfunction and ejaculation dysfunction, which require sensitive discussion; referral to a
clinician skilled in this area may be appropriate (Averyt & Nishimoto 2014)
• fertility issues for patients of reproductive age; refer to a fertility specialist before starting treatment
• assistance with beginning or resuming regular exercise with referral to an exercise physiologist or
physiotherapist (COSA 2018; Hayes et al. 2019).

38
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’s 13 11 20 information and support line 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.

4.5.2 Rehabilitation
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 sequels. Referrals to dietitians, psychosocial support,
return-to-work programs and community support organisations can help in managing these issues.

Patients first – optimal care 39

4.5.3 Communication with patients, carers and families
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 patients 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 wishes.

4.5.4 Communication with the general practitioner

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
• the patient’s general practitioner may have expertise with many conditions that arise during treatment
• the patient’s general practitioner may have specific knowledge about the patient or access to
local resources to help with prehabilitation, rehabilitation psychosocial needs and family issues
• 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 team.

More information
Refer to Principle 6 ‘Communication’ for communication skills training programs
and resources.

40
Step 5: Care after initial treatment and recovery
The term ‘cancer survivor’ describes a person living with cancer, from the point of diagnosis
until the end of life. Survivorship care in Australia has traditionally been provided to patients
who have completed active treatment and are in the post-treatment phase. But there is now a
shift to provide survivorship care and services from the point of diagnosis to improve cancer-
related outcomes.

Cancer survivors may experience inferior quality of life and cancer-related symptoms for up to five
years after their diagnosis (Jefford et al. 2017). Distress, fear of cancer recurrence, fatigue, obesity
and sedentary lifestyle are common symptoms reported by cancer survivors (Vardy et al. 2019).

Due to an ageing population and improvements in treatments and supportive care, the number of
people surviving cancer is increasing. International research shows there is an important need to focus
on helping cancer survivors cope with life beyond their acute treatment. Cancer survivors often face
issues that are different from those experienced during active treatment for cancer and may include a
range of issues, as well as unmet needs that affect their quality of life (Lisy et al. 2019; Tan et al. 2019).

Physical, emotional and psychological issues include fear of cancer recurrence, cancer-related
fatigue, pain, distress, anxiety, depression, cognitive changes and sleep issues (Lisy et al. 2019).
Late effects may occur months or years later and depend on the type of cancer treatment. Survivors
and their carers may experience impacted relationships and practical issues including difficulties
with return to work or study and financial hardship. They may also experience changes to sex and
intimacy. Fertility, contraception and pregnancy care after treatment may require specialist input.

The Institute of Medicine, in its report From cancer patient to cancer survivor: Lost in transition,
describes the essential components of survivorship care listed in the paragraph above, including
interventions and surveillance mechanisms to manage the issues a cancer survivor may face (Hewitt
et al. 2006). Access to a range of health professions may be required including physiotherapy,
occupational therapy, social work, dietetics, clinical psychology, fertility and palliative care.
Coordinating care between all providers is essential to ensure the patient’s needs are met.

Cancer survivors are more likely than the general population to have and/or develop comorbidities
(Vijayvergia & Denlinger 2015). Health professionals should support survivors to self-manage their
own health needs and to make informed decisions about lifestyle behaviours that promote wellness
and improve their quality of life (Australian Cancer Survivorship Centre 2016; Cancer Australia 2017;
NCSI 2015).

Patients first – optimal care 41

5.1 Transitioning from active treatment
The transition from active treatment to post-treatment care is critical to long-term health. In some
cases, people will need ongoing, hospital-based care, and in other cases a shared follow-up care
arrangement with their general practitioner may be appropriate. This will vary depending on the type
and stage of cancer and needs to be planned.

Shared follow-up care involves the joint participation of specialists and general practitioners in the
planned delivery of follow-up and survivorship care. A shared care plan is developed that outlines
the responsibilities of members of the care team, the follow-up schedule, triggers for review, plans
for rapid access into each setting and agreement regarding format, frequency and triggers for
communication.

After completing initial treatment, a designated member of the multidisciplinary team (most
commonly nursing or medical staff involved in the patient’s care) should provide the patient with
a needs assessment and treatment summary and develop a survivorship care plan in conjunction
with the patient. This should include a comprehensive list of issues identified by all members of the
multidisciplinary team involved in the patient’s care and by the patient. These documents are key
resources for the patient and their healthcare providers and can be used to improve communication
and care coordination.

The treatment summary should cover, but is not limited to:

• the diagnostic tests performed and results

• diagnosis including stage, prognostic or severity score
• tumour characteristics
• treatment received (types and dates)
• current toxicities (severity, management and expected outcomes)
• interventions and treatment plans from other health providers
• potential long-term and late effects of treatment
• supportive care services provided
• follow-up schedule
• contact information for key healthcare providers.

5.2 Follow-up care

Responsibility for follow-up care should be agreed between the lead clinician, the general
practitioner, relevant members of the multidisciplinary team and the patient. This is based on
guideline recommendations for post-treatment care, as well as the patient’s current and anticipated
physical and emotional needs and preferences.

Evidence comparing shared follow-up care and specialised care indicates equivalence in outcomes
including recurrence rate, cancer survival and quality of life (Cancer Research in Primary Care 2016).

Ongoing communication between healthcare providers involved in care and a clear understanding
of roles and responsibilities is key to effective survivorship care. In particular, knowing who is
responsible for monitoring tests for recurrence (CEA, CT scanning and colonoscopy) is essential.

42
In particular circumstances, other models of post-treatment care can be safely and effectively
provided such as nurse-led models of care (Monterosso et al. 2019). Other models of post-treatment
care can be provided in these locations or by these health professionals:

• in a shared care setting

• in a general practice setting
• by non-medical staff
• by allied health or nurses
• in a non-face-to-face setting (e.g. by telehealth).

A designated member of the team should document the agreed survivorship care plan. The
survivorship care plan should support wellness and have a strong emphasis on healthy lifestyle
changes such as a balanced diet, a non-sedentary lifestyle, smoking cessation and alcohol
reduction/abstinence, weight management and a mix of aerobic and resistance exercise (COSA
2018; Hayes et al. 2019).

This survivorship care plan should also cover, but is not limited to:

• what medical follow-up is required (surveillance for recurrence or secondary and metachronous
cancers, screening and assessment for medical and psychosocial effects)
• model of post-treatment care, the health professional providing care and where it will be delivered
• care plans from other health providers to manage the consequences of cancer and cancer treatment
• wellbeing, primary and secondary prevention health recommendations that align with chronic
disease management principles
• rehabilitation recommendations
• available support services
• a process for rapid re-entry to specialist medical services for suspected recurrence.

Survivors generally need regular follow-up, often for five or more years after cancer treatment
finishes. The survivorship care plan therefore may need to be updated to reflect changes in the
patient’s clinical and psychosocial status and needs.

Processes for rapid re-entry to hospital care should be documented and communicated to the
patient and relevant stakeholders.

Care in the post-treatment phase is driven by predicted risks (e.g. the risk of recurrence, developing
late effects of treatment and psychological issues) as well as individual clinical and supportive
care needs. It is important that post-treatment care is based on evidence and is consistent with
guidelines. Not all people will require ongoing tests or clinical review and may be discharged to
general practice follow-up.

The lead clinician should discuss (and general practitioner reinforce) options for follow-up at the start
and end of treatment. It is critical for optimal aftercare that the designated member of the treatment
team educates the patient about the symptoms of recurrence.

Patients first – optimal care 43

General practitioners (including nurses) can:

• connect patients to local community services and programs

• manage long-term and late effects
• manage comorbidities
• provide wellbeing information and advice to promote self-management
• screen for cancer and non-cancerous conditions.

More information
Templates and other resources to help with developing treatment summaries and
survivorship care plans are available from these organisations:

• Australian Cancer Survivorship Centre

• Cancer Australia – Principles of Cancer Survivorship
• Cancer Council Australia and states and territories
• Clinical Oncology Society of Australia – Model of Survivorship Care
• eviQ – Cancer survivorship: introductory course
• MyCarePlan.org.au
• South Australian Cancer Service – Statewide Survivorship Framework resources
• American Society of Clinical Oncology – guidelines.

5.2.1 Preventing recurrence

Not smoking, eating a healthy diet, being sun smart, avoiding or limiting alcohol intake, being
physically active and maintaining a healthy body weight may help reduce the risk of primary
recurrence or a second primary cancer.

Encourage and support all cancer survivors to reduce modifiable risk factors for recurrence as well
as other chronic diseases. Ongoing coordination of care between providers should also deal with
any comorbidities, particularly ongoing complex and life-threatening comorbid conditions.

5.3 Research and clinical trials

Support cancer survivors to participate in research or clinical trials where they are available and
appropriate. These might include studies to understand survivors’ issues, to better manage
treatment side effects, or to improve models of care and quality of life.

For more information visit the Cancer Australia website <www.australiancancertrials.gov.au>.

44
5.4 Support and communication
5.4.1 Supportive care
See validated screening tools mentioned in Principle 4 ‘Supportive care’. Additionally, the
‘Cancer Survivors Unmet Needs (CaSun)’ is another validated screening tool that may help health
professionals to identify the unmet needs of patients during survivorship.

A number of specific challenges and needs may arise for cancer survivors:

• emotional distress arising from fear of disease recurrence, returning to work, anxiety/depression,
interpersonal problems and sexuality concerns
• chemotherapy-induced peripheral sensory neuropathy (may need ongoing monitoring)
• malnutrition post-treatment due to ongoing treatment side effects (e.g. weight loss or reduced
oral intake) – this requires monitoring and nutrition intervention where indicated
• altered bowel function and incontinence
• stoma management
• decline in mobility or functional status as a result of treatment
• a need for increased community supports as patients recover from treatment
• financial and employment issues (e.g. loss of income and assistance with returning to work and
the cost of treatment, travel and accommodation)
• appointing a substitute decision-maker and completing an advance care directive
• legal issues such as completing a will.

For more information on supportive care and needs that may arise for different population groups,
see Appendices A, B and C.

5.4.2 Rehabilitation and recovery

Rehabilitation may be required at any point of the care pathway from the pre-treatment phase
through to disease-free survival and palliative care (Cormie et al. 2017).

Issues that may need to be dealt with include managing cancer-related fatigue, coping with cognitive
changes, improving physical endurance, achieving independence in daily tasks, returning to study or
work and ongoing adjustment to cancer and its sequels.

Exercise is a safe and effective intervention that improves the physical and emotional health and
wellbeing of cancer patients. Exercise should be embedded as part of standard practice in cancer
care and be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and
its treatment.

Cancer survivors may find referral to specific cancer rehabilitation, optimisation programs or
community-based rehabilitation appropriate and beneficial. Other options include referral to allied
health supports through team care arrangements and mental health plans. Some community
support organisations (cancer-related non-government, not-for-profit and charities) provide services
to cancer survivors.

Patients first – optimal care 45

5.4.3 Communication with patients, carers and families
The lead clinician (themselves or by delegation) should take responsibility for these tasks:

• explaining the model of post-treatment care and the roles of health professionals involved
in post-treatment care including the role of general practice
• explaining the treatment summary and follow-up care plan
• discussing the development of a shared follow-up and survivorship care plan where a model
of shared follow-up care has been agreed
• discussing how to manage any of the physical, psychological or emotional issues identified
• providing information on the signs and symptoms of recurrent disease
• providing a survivorship care plan with information on secondary prevention and healthy living
• providing contact details of the care team involved
• providing clear information about the role and benefits of palliative care and advance care planning.

5.4.4 Communication with the general practitioner

The lead clinician should ensure regular, timely, two-way communication with the general
practitioner about:

• the patient’s progress

• the follow-up care plan
• potential late effects
• supportive and palliative care requirements
• any shared care arrangements
• clarification of various roles in patient care
• a process for rapid re-entry to medical services for patients with suspected recurrence
or if there are other concerns.

More information
Refer to Principle 6 ‘Communication’ for communication skills training programs
and resources.

46
Step 6: Managing recurrent, residual or metastatic disease
Patients who present with recurrent, residual or metastatic disease should be managed by
a multidisciplinary team and offered timely referral to appropriate physical, practical and
emotional support.

Step 6 is concerned with managing recurrent or local residual and metastatic disease. The likelihood
of recurrence depends on many factors usually related to the type of cancer, the stage of cancer
at presentation and the effectiveness of treatment. Some cancers cannot be eradicated even with
the best initial treatment. But controlling disease and disease-related symptoms is often possible,
depending on the clinical situation.

6.1 Signs and symptoms of recurrent disease

Some patients will have recurrent disease on initial presentation. Others may present with symptoms
of recurrent disease after a previous cancer diagnosis. Access to the best available therapies,
including clinical trials, as well as treatment overseen by a multidisciplinary team, are crucial to
achieving the best outcomes for anyone with recurrent disease.

Signs and symptoms will depend on the type of cancer initially diagnosed and the location of
recurrent disease. They may be discovered by the patient or by surveillance in the post-treatment
period. Recurrence may be asymptomatic or have non-specific symptoms. It should be detected by
routine surveillance protocols that are applied to people who have colorectal cancer.

6.2 Managing recurrent disease

Managing recurrent disease is complex and should therefore involve all the appropriate specialties
in a multidisciplinary team including palliative care where appropriate. From the time of diagnosis,
the team should offer patients appropriate psychosocial care, supportive care, advance care
planning and symptom-related interventions as part of their routine care. The approach should be
personalised to meet the patient’s individual needs, values and preferences. The full complement of
supportive care measures as described throughout the optimal care pathway and in Appendices A,
B and C should be offered to assist patients and their families and carers to cope. These measures
should be updated as the patient’s circumstances change.

Survivorship care should be considered and offered at an early stage. Many people live with
advanced cancer for many months or years. As survival is improving in many patients, survivorship
issues should be considered as part of routine care. Health professionals should therefore be ready
to change and adapt treatment strategies according to disease status, prior treatment tolerance and
toxicities and the patient’s quality of life, in addition to the patient’s priorities and life plans.

6.3 Multidisciplinary team

If there is an indication that a patient’s cancer has returned, care should be provided under the
guidance of a treating specialist. Each patient should be evaluated to determine if referral to the
original multidisciplinary team is necessary. Often referral back to the original multidisciplinary team
will not be necessary unless there are obvious aspects of care involving different therapeutic and
supportive care disciplines not otherwise accessible. The multidisciplinary team may include new
members such as palliative care specialists.

Patients first – optimal care 47

6.4 Treatment
Treatment will depend on the location, extent of recurrent or residual disease, previous management
and the patient’s preferences.
In managing people with colorectal cancer, treatment may include these options:
• surgery
• radiation therapy (including SABR)
• drug therapy (including chemotherapy and targeted therapy)
• locoregional therapies (including focal ablation and transarterial chemoembolisation).
In managing people with colorectal cancer, treatment programs have recently become more
complex, with more effective chemotherapy and major surgical programs being offered to patients
with potentially curable recurrent cancer including immunotherapy for microsatellite unstable
colorectal cancers; however, therapy may focus on disease control or palliation, based on the extent
of disease and the patient’s general health, preferences and values.
The potential goals of treatment should be discussed, respecting the patient’s cultural values.
Wherever possible, written information should be provided.

Encourage early referral to clinical trials or accepting an invitation to participate in research.

6.5 Advance care planning

Advance care planning is important for all patients with a cancer diagnosis but especially those with
advanced disease. Patients should be encouraged to think and talk about their healthcare values
and preferences with family or carers, appoint a substitute decision-maker and consider developing
an advance care directive to convey their preferences for future health care in the event they become
unable to communicate their wishes (AHMAC 2011).

More information
Refer to section 4.3 ‘More information’ for links to resources.
Refer patients and carers to Advance Care Planning Australia <www.advancecareplanning.
org.au> or to the Advance Care Planning National Phone Advisory Service on 1300 208 582.

6.6 Palliative care

Early referral to palliative care can improve the quality of life for people with cancer and in some cases
may be associated with survival benefits (Haines 2011; Temel at al. 2010; Zimmermann et al. 2014).
The treatment team should emphasise the value of palliative care in improving symptom management
and quality of life to patients and their carers. Refer to section 4.3 for more detailed information.
The lead clinician should ensure timely and appropriate referral to palliative care services. Referral to
palliative care services should be based on the patient’s need and potential for benefit, not prognosis.

More information
Refer to the end of section 4.3 ‘Palliative care’ for links to resources.

6.7 Research and clinical trials

The treatment team should support the patient to participate in research and clinical trials where
available and appropriate.
For more information visit the Cancer Australia website <www.australiancancertrials.gov.au>.

48
6.8 Support and communication
6.8.1 Supportive care
See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise at this time for patients:

• assistance for dealing with emotional and psychological distress resulting from fear of death or
dying, existential concerns, anticipatory grief, communicating wishes to loved ones, 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 and disease progression such as altered memory,
attention and concentration (a patient may appoint someone to make medical, financial and legal
decisions on their behalf – a substitute decision-maker – before and in case they experience
cognitive decline)
• management of physical symptoms including altered bowel function and incontinence
• stoma management
• decline in mobility or functional status as a result of recurrent disease and treatments (referral to
physiotherapy or occupational therapy may be required)
• coping with hair loss and changes in physical appearance (refer to the Look Good, Feel Better
program – see ‘Resource list’)
• appointing a substitute decision-maker and completing an advance care directive
• financial issues as a result of disease recurrence such as gaining early access to superannuation
and insurance
• legal issues (completing a will, care of dependent children) and making an insurance,
superannuation or social security claim on the basis of terminal illness or permanent disability.

6.8.2 Rehabilitation
Rehabilitation may be required at any point of the metastatic care pathway, from preparing for
treatment through to palliative care. Issues that may need to be dealt with include managing cancer-
related fatigue, improving physical endurance, achieving independence in daily tasks, returning to
work and ongoing adjustment to cancer and its sequels.

Exercise is a safe and effective intervention that improves the physical and emotional health and wellbeing
of cancer patients. Exercise should be embedded as part of standard practice in cancer care and be
viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment.

6.8.3 Communication with patients, carers and families

The lead clinician should ensure there is adequate discussion with patients and carers about the
diagnosis and recommended treatment, including treatment intent and possible outcomes, likely
adverse effects and the supportive care options available.

More information
Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Patients first – optimal care 49

Step 7: End-of-life care
Step 7 is concerned with maintaining the patient’s quality of life and meeting their health and
supportive care needs as they approach the end of life, as well as the needs of their family
and carers.

Some patients with advanced cancer will reach a time when active treatment is no longer
appropriate. The team needs to share the principles of a palliative approach to care when making
decisions with the patient and their family or carer. End-of-life care is appropriate when the patient’s
symptoms are increasing and functional status is declining.

7.1 Multidisciplinary palliative care

If the treatment team does not include a palliative care member, the lead clinician should consider
referring the patient to palliative care services, with the general practitioner’s engagement. This may
include inpatient palliative unit access (as required).

The multidisciplinary team may consider seeking additional expertise from these professionals:

• clinical psychologist
• clinical nurse specialist or practitioner
• social worker
• palliative medicine specialist
• pain specialist
• pastoral or spiritual carer
• bereavement counsellor
• music therapist
• art therapist
• cultural expert
• Canteen for children of parents with cancer <www.canteen.org.au/young-people/my-parent-has-
cancer/>.

The team might also recommend that patients access these services:

• home and community-based care

• specialist community palliative care workers
• community nursing.

If the patient does not already have an advance care directive in place, a designated member of the
treatment team should encourage them to develop one in collaboration with their family or carer
(AHMAC 2011).

It is essential for the treatment team to consider the appropriate place of care, the patient’s preferred
place of death and the support needed for the patient, their family and carers.

The treatment team should also ensure that carers and families receive the information, support and
guidance about their role according to their needs and wishes (Palliative Care Australia 2018).

50
 More information
The treatment team can refer patients and carers to these resources:

• Palliative Care Australia <www.palliativecare.org.au>

• Advance Care Planning Australia <www.advancecareplanning.org.au> or to Advance
Care Planning Australia’s National Advisory Service on 1300 208 582.

7.2 Research and clinical trials

Clinical trials may help improve palliative care and in managing a patient’s symptoms of advanced
cancer (Cancer Council Victoria 2019). The treatment team should support the patient to participate
in research and clinical trials where available and appropriate.

For more information visit the Cancer Australia website <www.australiancancertrials.gov.au>.

See ‘Resource list’ for additional clinical trial databases.

7.3 Support and communication

7.3.1 Supportive care
See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

• assistance for dealing with emotional and psychological distress from anticipatory grief,
fear of death or dying, anxiety/depression and interpersonal problems
• management of physical symptoms including altered bowel function and incontinence
• stoma management
• decline in mobility or functional status, affecting the patient’s discharge destination (a referral
to physiotherapy, exercise physiology, occupational therapy or social work may be needed)
• appointing a substitute decision-maker and completing an advance care directive
• legal issues (completing a will, care of dependent children) and making an insurance,
superannuation or social security claim on the basis of terminal illness or permanent disability
• specific support for families where a parent is dying and will leave behind bereaved children or
adolescents, creating special family needs
• arranging a funeral.

These services and resources can help:

• referral to 13 11 20 for Cancer Council Australia’s Pro Bono Program for free legal, financial,
small business accounting and workplace assistance (subject to a means test)
• Sad news sorry business (Queensland Health 2015) for the specific needs of Aboriginal and
Torres Strait Islander people.

For more information on supportive care and needs that may arise for different population groups,
see Appendices A, B and C.

Patients first – optimal care 51

7.3.2 Communication with patients, carers and families
The lead clinician is responsible for:

• being open to and encouraging discussion with the patient about the expected disease course,
considering the patient’s personal and cultural beliefs and expectations
• discussing palliative care options, including inpatient and community-based services as well as
dying at home and subsequent arrangements
• providing the patient and carer with the contact details of a palliative care service
• referring the patient to palliative care in the community according to the carer’s wishes.

7.3.3 Communication with the general practitioner

The lead clinician should discuss end-of-life care planning to ensure the patient’s needs and goals
are met in the appropriate environment. The patient’s general practitioner should be kept fully
informed and involved in major developments in the patient’s illness path.

More information
For support with communication skills and training programs, see these sources:

• Sad news sorry business <www.health.qld.gov.au/__data/assets/pdf_

file/0023/151736/sorry_business.pdf>
• Principle 6 ‘Communication’.

52
Contributors and reviewers
Our thanks to the following health professionals, Mrs Marilyn Dolling, Consumer Representative,
consumer representatives, stakeholders and Barwon Health
organisations consulted in developing this
Dr Louise Gorman, Radiation Oncologist,
optimal care pathway.
Ballarat Austin Radiation Oncology Centre
Expert working group (this edition) Mahesh Iddawela, Consultant Medical
Professor Alexander Heriot (Chair), Oncologist, Goulburn Valley Health; Senior
Colorectal Surgeon, Peter MacCallum Cancer Lecturer, RHAC, The University of Melbourne
Centre, The University of Melbourne
Dr Michael Homewood, General Practitioner,
Professor Alex Boussioutas, Gastroenterologist, Lara Medical Centre
The Royal Melbourne Hospital, Peter MacCallum
Dr Greg Mewett, Palliative Care Physician,
Cancer Centre, The University of Melbourne
Ballarat Health Care
Professor Peter Gibbs, Medical Oncologist,
Associate Professor Sam Ngan, Radiation
Western Health
Oncologist, Peter MacCallum Cancer Centre,
Dr Michael Homewood, General Practitioner, The University of Melbourne
Lara Medical Centre
Ms Wendy Sansom, CNC Stomal Therapy Nurse,
Associate Professor Sam Ngan, Radiation Eastern Health
Oncologist, Peter MacCallum Cancer Centre
Mr Henrick Schwalb, Surgeon,
Ms Wendy Sansom, CNC Stomal Therapy Nurse, Border East Clinical
Eastern Health
Professor Robert Thomas, Chief Advisor on
Professor Robert Thomas, Special Advisor on Cancer, Victorian Department of Health
Health, Professorial Fellow, The University of
Medical colleges and peak organisations
Melbourne
invited to provide feedback
Ms Julia Brancato, Project Coordinator,
Advance Care Planning Australia
Optimal Care Pathways, Cancer Council Victoria
Allied Health Professions Australia
Expert working group (previous edition)
Australasian Association of Nuclear
Professor Alexander Heriot (Chair), Colorectal
Medicine Specialists
Surgeon, Peter MacCallum Cancer Centre,
The University of Melbourne Australasian Chapter of Palliative Medicine,
Royal Australia College of Physicians
Ms Georgina Akers, Colorectal Cancer
Follow-up Nurse, Western Health Australasian Gastro-Intestinal Trials Group

Mrs Sandra Anderson, Consumer Australian and New Zealand Society of

Representative, Barwon Health Neuroradiology

Ms Jenni Bourke, Occupational Therapist, Australian and New Zealand Society

Peter MacCallum Cancer Centre of Palliative Care

Associate Professor Alex Boussioutas, Australian Cancer Survivorship Centre

Gastroenterologist, The Royal Melbourne Australian College of Nursing
Hospital, Peter MacCallum Cancer Centre,
The University of Melbourne Australian Medical Association

Patients first – optimal care 53

Australian Society of Medical Imaging and
Radiation Therapy

Cancer Nurses Society of Australia

Clinical Oncology Society of Australia

Colorectal Surgical Society of Australia

and New Zealand

Dietitians Australia

Gastroenterological Society of Australia

Interventional Radiology Society of Australasia

Medical Oncology Group of Australia

Oncology Social Workers Australia

and New Zealand

Royal Australasian College of Physicians

Royal Australasian College of Surgeons

Royal Australian and New Zealand College

of Radiologists

Royal Australian College of General Practitioners

Royal College of Pathologists of Australasia

Governance – project steering

committee representation
Alfred Health

Cancer Australia

Cancer Council Victoria, Strategy

and Support Division

Cancer Institute New South Wales

Concord Repatriation General Hospital

New South Wales

Consumer representative

Department of Health Victoria, Commissioning

and System Improvement Division, Cancer Unit

National Cancer Expert Reference Group Other stakeholders consulted to provide

feedback include relevant Cancer Council
Olivia Newton-John Cancer Wellness
committees and networks, Integrated Cancer
and Research Centre
Services, Primary Health Networks and
St Vincent’s Hospital Melbourne several health services.

54
Appendix A: Supportive care domains
Supportive care in cancer refers to the following five domains:

• the physical domain, which includes a wide range of physical symptoms that may be acute,
relatively short lived or ongoing, requiring continuing interventions or rehabilitation
• the psychological domain, which includes a range of issues related to the patient’s mental health
wellbeing and personal relationships
• the social domain, which includes a range of social and practical issues that will affect the patient,
carer and family such as the need for emotional support, maintaining social networks and financial
concerns
• the information domain, which includes access to information about cancer and its treatment,
recovery and survivorship support services and the health system overall
• the spiritual domain, which focuses on the patient’s changing sense of self and challenges to their
underlying beliefs and existential concerns (Palliative Care Victoria 2019).

Fitch’s (2000) model of supportive care recognises the variety and level of intervention required at
each critical point as well as the need to be specific to the individual patient (Figure A1). The model
targets the type and level of intervention required to meet patients’ supportive care needs.

Figure A1: Fitch’s tiered approach to supportive care

General Screening for

needs All patients need and
information provision

Further referral
Many patients for assessment and
intervention

Early intervention
Some patients tailored to need

Few
Complex needs patients Referral for specialised
services and programs
(for example, psycho-oncology)

Patients first – optimal care 55

Appendix B: Psychological needs
Consider a referral to a psychologist, psychiatrist, pastoral/spiritual care practitioner, social worker,
specialist nurse or a relevant community-based program if the patient has these issues:

• displaying emotional cues such as tearfulness, distress that requires specialist intervention,
avoidance or withdrawal
• being preoccupied with or dwelling on thoughts about cancer and death
• displaying fears about the treatment process or the changed goals of their treatment
• displaying excessive fears about cancer progression or recurrence
• worrying about loss associated with their daily function, dependence on others and loss of dignity
• becoming isolated from family and friends and withdrawing from company and activities that they
previously enjoyed
• feeling hopeless and helpless about the effect that cancer is having on their life and the disruption
to their life plans
• struggling to communicate with family and loved ones about the implications of their cancer
diagnosis and treatment
• experiencing changes in sexual intimacy, libido and function
• struggling with the diagnosis of metastatic or advanced disease
• having difficulties quitting smoking (refer to Quitline on 13 7848) or with other drug and alcohol use
• having difficulties transitioning to palliative care.

Additional considerations that may arise for the multidisciplinary team include:

• support for the carer – encourage referrals to psychosocial support from a social worker,
psychologist or general practitioner
• referral to an exercise physiologist or physiotherapist as a therapeutic approach to prevent and
manage psychological health
• referral to wellness-after-cancer programs to provide support, information and offer strategies.

56
Appendix C: Special population groups
The burden of cancer is not evenly spread across Australia. People experiencing socioeconomic
disadvantage, Aboriginal and Torres Strait Islander communities, culturally diverse communities,
people living with a disability, people with chronic mental health or psychiatric concerns and those
who live in regional and rural areas of Australia have poorer cancer outcomes.

Aboriginal and Torres Strait Islander people

Cancer is the third leading cause of burden of disease for Aboriginal and Torres Strait Islander
people. While Australia’s cancer survival rates are among the best in the world, Aboriginal and Torres
Strait Islander people continue to experience a different pattern of cancer incidence and significant
disparities in cancer outcomes compared with non-Indigenous Australians.

There has been a significant increase in the colorectal cancer incidence rate for Aboriginal and
Torres Strait Islander people (AIHW 2018c). Between 2007 and 2014, Aboriginal and Torres Strait
Islander people diagnosed with colorectal cancer had a 58 per cent chance (on average) of surviving
compared with non-Indigenous Australians, who had a 67 per cent chance (on average) of surviving
(AIHW 2018c).

For Aboriginal and Torres Strait Islander people, health and connection to land, culture, community
and identity are intrinsically linked. Health encompasses a whole-of-life view and includes a cyclical
concept of life–death–life.

The distinct epidemiology of cancer among Aboriginal and Torres Strait Islander people, and unique
connection to culture, highlight the need for a specific optimal care pathway for Aboriginal and Torres
Strait Islander people with cancer. Ensuring this pathway is culturally safe and supportive is vital to
tackling the disparities for Aboriginal and Torres Strait Islander people.

Published in 2018, the Optimal care pathway for Aboriginal and Torres Strait Islander people with
cancer provides guidance to health practitioners and service planners on optimal care for Aboriginal
and Torres Strait Islander people with cancer across the cancer continuum.

In addition to the key principles underpinning cancer-specific pathways, these are the key concepts
that are fundamental to Aboriginal and Torres Strait Islander health:

• providing a holistic approach to health and wellbeing

• providing a culturally appropriate and culturally safe service
• acknowledging the diversity of Aboriginal and Torres Strait Islander peoples
• understanding the social determinants and cultural determinants of health (Cancer Australia 2015).

To view the Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer, visit
the Cancer Australia website <https://www.canceraustralia.gov.au/affected-cancer/atsi/resources-
health>. To view the consumer resources – Checking for cancer and Cancer, visit the Cancer
Australia website <https://www.canceraustralia.gov.au/affected-cancer/atsi/resources-people>.

Patients first – optimal care 57

Culturally diverse communities
For people from culturally diverse backgrounds in Australia, a cancer diagnosis can come with
additional complexities, particularly when English proficiency is poor. In many languages there
is not a direct translation of the word ‘cancer’, which can make communicating vital information
difficult. Perceptions of cancer and related issues can differ greatly in people from culturally
diverse backgrounds and this can affect their understanding and decision making after a cancer
diagnosis. In addition to different cultural beliefs, when English language is limited there is potential
for miscommunication of important information and advice, which can lead to increased stress and
anxiety for patients.

A professionally trained interpreter (not a family member or friend) should be made available when
communicating with people with limited English proficiency. Navigation of the Australian healthcare
system can pose problems for those with a non-Anglo culture, and members of the treatment teams
should pay particular attention to supporting these patients.

The Australian Cancer Survivorship Centre has developed a glossary of more than 700 cancer
terms in nine different languages. The multilingual glossary has been designed as a resource
for professional translators, interpreters and bilingual health professionals working in the cancer
field. The glossary is a unique tool that enables language professionals with access to accurate,
consistent and culturally appropriate terminology.

Visit the Peter Mac website <www.petermac.org/multilingualglossary> to see the glossary.

People with disabilities

Disability, which can be physical, intellectual or psychological, may have existed before the cancer
diagnosis or may be new in onset (occurring due to the cancer treatment or incidentally). Adjusting
to life with a disability adds another challenge to cancer care and survivorship.

Several barriers prevent people with disabilities from accessing timely and effective health care
(AIHW 2017):

• physical limitations
• competing health needs
• the trauma of undergoing invasive procedures
• potential barriers associated with obtaining informed consent
• failure to provide assistance with communication
• lack of information
• discriminatory attitudes among healthcare staff.

In caring for people with disabilities and a cancer diagnosis, the Australian Institute of Health and
Welfare disability flag should be used at the point of admittance to correctly identify and meet
the additional requirements of a person with disability. Facilities should actively consider access
requirements, and health practitioners should make reasonable adjustments where required.

58
Patients aged between seven and 65 years who have a permanent or significant disability may be
eligible for support or funding through the National Disability Insurance Scheme (National Disability
Insurance Agency 2018). More information can be found on the NDIS website <www.ndis.gov.au>.

Patients aged 65 years or older (50 years or older for Aboriginal or Torres Strait Islander people)
may be eligible for subsidised support and services through aged care services. An application to
determine eligibility can be completed online or over the phone. More information can be found at
the My Aged Care website <www.myagedcare.gov.au>.

More information
‘Talking End of Life’ is a resource that shows how to teach people with intellectual
disability about end of life. It is designed for disability support workers but is also helpful
for others including families, health professionals and educators.

To view the resource, visit the Talking End of Life website <www.caresearch.com.au/tel/
tabid/4881/Default.aspx>.

Older people with cancer

Planning and delivering appropriate cancer care for older people can present a number of
challenges. This could also be true for frail people or those experiencing comorbidities. Effective
communication between oncology and geriatrics departments will help facilitate best practice care,
which takes into account physiological age, complex comorbidities, risk of adverse events and
drug interactions, as well as the implications of cognitive impairment on suitability of treatment and
consent (Steer et al. 2009).

At a national interdisciplinary workshop convened by the Clinical Oncology Society of Australia,

it was recommended that people over the age of 70 undergo some form of geriatric assessment,
in line with international guidelines (COSA 2013; palliAGED 2018). Screening tools can be used
to identify those patients in need of a comprehensive geriatric assessment (Decoster et al. 2015).
This assessment can be used to help determine life expectancy and treatment tolerance and guide
appropriate referral for multidisciplinary intervention that may improve outcomes (Wildiers et al. 2014).

Frailty is not captured through traditional measures of performance status (e.g. ECOG) and includes
assessment in the domains of:

• function
• comorbidity
• presence of geriatric syndromes
• nutrition
• polypharmacy
• cognition
• emotional status
• social supports.

Patients first – optimal care 59

Adolescents and young adults
In recent years, adolescent and young adult oncology has emerged as a distinct field due to lack
of progress in survival and quality-of-life outcomes (Ferrari et al. 2010; Smith et al. 2013). The
significant developmental change that occurs during this life stage complicates a diagnosis of
cancer, often leading to unique physical, social and emotional effects for young people at the time
of diagnosis and throughout the cancer journey (Smith et al. 2012).

In caring for young people with cancer, akin to the comorbidities that require specific care in the older
cancer population, the treatment team needs to pay careful attention to promoting normal development
(COSA 2014). This requires personalised assessments and management involving a multidisciplinary,
disease-specific, developmentally targeted approach that adheres to the following principles:

• understanding the developmental stages of adolescence and supporting normal adolescent

health and development alongside cancer management
• understanding and supporting the rights of young people
• communication skills and information delivery that are appropriate to the young person
• meeting the needs of all involved, including the young person, their carers and their family
• working with educational institutions and workplaces
• considering survivorship and palliative care needs
• understanding the possibility of an inheritable basis for the person’s cancer.

An oncology team caring for an adolescent or young adult with cancer should be able to
demonstrate these specific areas of expertise:

• be able to ensure access to expert adolescent and young adult health providers who have
knowledge specific to the biomedical and psychosocial needs of the population
• understand the biology and current management of the disease in the adolescent and young
adult age group
• consider participating in research and clinical trials for each patient
• engage in proactive discussion and management of fertility preservation, late effects of treatment,
ongoing need for contraception, and psychosocial and psychosexual needs
• provide treatment in an environment that is friendly to adolescents and young adults
• consider referral to a familial cancer service.

60
People experiencing socioeconomic disadvantage
In general, people from lower socioeconomic groups are at greater risk of poor health, have higher
rates of illness, disability and death, and live shorter lives than those from higher socioeconomic
groups (AIHW 2016). People experiencing socioeconomic disadvantage are less likely to participate
in screening programs, more likely to be obese, less likely to exercise and much more likely to
smoke, which are all risk factors for cancer. In 2010–2014 age-standardised cancer incidence rates
were higher in the lowest socioeconomic areas compared with the highest socioeconomic areas for
all cancers combined (Cancer Australia 2019c).

Socioeconomic status and low health literacy are closely correlated. Therefore, effective
communication with patients and carers is particularly important given the prevalence of low health
literacy in Australia (estimated at 60 per cent of Australian adults) (ACSQHC 2014).

Consideration should be taken for cancer patients experiencing socioeconomic disadvantage to

reduce their risk of being underserved for health care.

People with chronic mental health or psychiatric concerns

A diagnosis of cancer may present additional challenges to people who have pre-existing chronic
mental health or psychiatric concerns, resulting in exacerbation of their mental health symptoms.
This may include heightened anxiety, worsening depression or thoughts of self-harm.

As poor adjustment and coping can affect treatment decisions, people who are known to have a
mental health diagnosis need psychosocial assessment in the oncology setting to formulate a plan
for ongoing support throughout treatment.

Psychosocial support can assist with challenges in communicating with health professionals,
enhance understanding of the treatment journey, ensure capacity for consent to treatment options
and improve compliance with treatment requests. A referral for psychosocial support from a health
professional to the psycho-oncology team can ensure these patients are provided with targeted
interventions or referrals to community-based services that may mitigate problems associated with
the impacts of social isolation that frequently accompany chronic mental ill-health.

Many patients with chronic mental health problems may be well known to external service providers.
Psycho-oncology health professionals can form meaningful partnerships with existing service
providers to optimise patient care throughout treatment and beyond.

Drug use disorders fall within the area of mental health conditions. People who are opiate dependent
may have specific and individual requirements regarding pain management and their own preference
for type of opiate prescribed or used.

Patients first – optimal care 61

Sexually and gender diverse groups
People who identify as sexually or gender diverse may have unique needs following a cancer
diagnosis. Sexually or gender diverse identities include (but are not limited to) people who identify
as lesbian, gay, bisexual or transgender, collectively ‘LGBT’. There is no universally agreed upon
initialism to describe this community, with other terms such as queer/questioning (Q), intersex (I),
asexual (A) and pansexual (P) often included, as well as a plus symbol (+) indicating inclusivity of
other identities not explicitly mentioned.

Sexual orientation and gender identity are relevant across the entire spectrum of cancer care, from
prevention to survivorship and end-of-life care. LGBT people are less likely to participate in cancer
screening, and some segments of the LGBT community exhibit elevated rates of specific cancer
risk factors – for example, higher rates of smoking and alcohol use. Regarding treatment, there may
be unique factors relevant to LGBT people that may affect decision making. Additionally, the LGBT
population experiences higher rates of anxiety, depression and stressful life circumstances, and may
be at risk of inferior psychosocial outcomes following a cancer diagnosis. LGBT people are also
more likely to be estranged from their families of origin, and for older people, less likely to have adult
children who may provide support and care.

Barriers to care for LGBT people include past negative interactions with healthcare systems,
experiences or fear of discrimination and harassment in healthcare settings, assumptions of
cisgender/heterosexual identity, lack of recognition or exclusion of same-sex partners from care,
and a lack of relevant supportive care and information resources.

Some LGBT patients may have issues peculiar to their sexual orientation in the context of colorectal
cancer and its treatment (e.g. after proctectomy) that need sensitive handling.

To provide safe and appropriate care for LGBT people with cancer, healthcare providers should:

• display environmental cues to show an inclusive and safe setting for LGBT patients
• avoid assumptions about the sexual orientation or gender identity of patients and their partners
• facilitate positive disclosure of sexual orientation or gender identity
• include same-sex/gender partners and families of choice in care
• be aware of relevant supportive care and information resources
• provide non-judgemental, patient-centred care.

62
Appendix D: Complementary therapies
Complementary therapies may be used together with conventional medical treatments to support
and enhance quality of life and wellbeing. They do not aim to cure the patient’s cancer. Instead,
they are used to help control symptoms such as pain and fatigue (Cancer Council Australia 2019).

The lead clinician or health professional involved in the patient’s care should discuss the patient’s use
(or intended use) of complementary therapies not prescribed by the multidisciplinary team to assess
safety and efficacy and to identify any potential toxicity or drug interactions.

The lead clinician should seek a comprehensive list of all complementary and alternative medicines
being taken and explore the patient’s reason for using these therapies and the evidence base.
A transparent and honest discussion that is free from judgement should be encouraged.

While some complementary therapies are supported by strong evidence, others are not. For
such therapies, the lead clinician should discuss their potential benefits and use them alongside
conventional therapies (NHMRC 2014).

If the patient expresses an interest in using complementary therapies, the lead clinician should
consider referring patients to health providers within the multidisciplinary team who have expertise
in the field of complementary and alternative therapies (e.g. a clinical pharmacist, dietitian or
psychologist) to assist them to reach an informed decision. Costs of such approaches should be
part of the discussion with the patient and considered in the context of evidence of benefit.

The lead clinician should assure patients who use complementary therapies that they can still access
a multidisciplinary team review and encourage full disclosure about therapies being used.

More information
• S
 ee Cancer Australia’s position statement on complementary and alternative therapies
<www.canceraustralia.gov.au/publications-and-resources/position-statements/
complementary-and-alternative-therapies>.
• See the Clinical Oncological Society of Australia’s position statement Use of
complementary and alternative medicine by cancer patients <www.cosa.org.au/
publications/position-statements.aspx>.

Patients first – optimal care 63

Appendix E: Members of the
multidisciplinary team for colorectal cancer
The multidisciplinary team may include the following members:

• care coordinator (as determined by multidisciplinary team members)*

• gastroenterologist with colorectal expertise*
• general and/or colorectal surgeon*
• medical oncologist*
• nurse (with appropriate expertise)*
• pathologist*
• radiation oncologist*
• radiologist with expertise in MRI*
• stomal therapy nurse*
• Aboriginal health practitioner, Indigenous liaison officer or remote general practitioner
• clinical psychologist
• clinical trials coordinator
• dietitian
• exercise physiologist
• fertility specialist
• general practitioner
• geneticist or genetic counsellor
• hepato-pancreatobiliary surgeon
• interventional radiologist
• nuclear medicine physician with PET expertise
• occupational therapist
• palliative care specialist
• pharmacist
• physiotherapist
• psychiatrist
• social worker
• spiritual/pastoral care
• thoracic surgeon.

* Denotes core members. Core members of the multidisciplinary team are expected
to attend most multidisciplinary team meetings either in person or remotely.

64
Resource list
For patients, families and carers Bowel Cancer Australia
Bowel Cancer Australia provides information
Advance Care Planning Australia about bowel cancer prevention, diagnosis and
Advance Care Planning Australia provides treatment.
national advance care planning resources for
• Telephone: 1800 555 494
individuals, families, health professional and
service providers. Resources include a national • Website <www.bowelcanceraustralia.org>
advisory service, information resources, a legal Cancer Council Australia –
forms hub and education modules. Bowel cancer
• Telephone: 1300 208 582 Cancer Council Australia provides information on
• Website <www.advancecareplanning.org.au> The National Bowel Cancer Screening Program,
including eligibility to receive a test.
Australian Cancer Survivorship Centre
• Website <http://www.bowelcancer.org.au/>
The Australian Cancer Survivorship Centre has
developed information resources and events Cancer Australia
to help people move from initial treatment to
Cancer Australia provides information for
post treatment and beyond, including those
consumers, carers and their families including
receiving maintenance treatments. While they do
printed resources and video content.
not provide clinical advice, they connect with a
range of providers to enable improved care. • Website <www.canceraustralia.gov.au>

• Telephone: (03) 8559 6220 Cancer Council’s Cancer Information

• Website <www.petermac.org/ and Support Service
cancersurvivorship> Cancer Council 13 11 20 is a confidential
telephone support service available to anyone
Australian Commission on Safety
affected by cancer. This service acts as a
and Quality in Health Care
gateway to evidence-based documented,
The Australian Commission on Safety and practical and emotional support available
Quality in Health Care has developed a through Cancer Council services and other
resource for patients and carers explaining community organisations. Calls will be answered
the coordination of care that patients should by a nurse or other oncology professional who
receive from their health service during cancer can provide information relevant to a patient’s or
treatment. The resource is called What to carer’s situation. Health professionals can also
expect when receiving medication for cancer access this service.
care <https://www.safetyandquality.gov.au/
publications-and-resources/resource-library/ • Telephone: 13 11 20 – Monday to Friday,
what-expect-when-receiving-medication- 9.00am to 5.00pm (some states have
cancer-care>. extended hours)
• Website <www.cancer.org.au/about-us/state-
Beyond Blue and-territory-councils/>
Beyond Blue provides information about
depression, anxiety and related disorders, as well
as about available treatment and support services.

• Telephone: 1300 22 4636

• Website <www.beyondblue.org.au>

Patients first – optimal care 65

Cancer Council’s Cancer Connect CanEAT pathway
Cancer Connect is a free and confidential telephone A guide to optimal cancer nutrition for people
peer support service that connects someone who with cancer, carers and health professionals.
has cancer with a specially trained volunteer who
• Website <https://education.eviq.org.au/
has had a similar cancer experience.
courses/supportive-care/malnutrition-in-
A Connect volunteer can listen with cancer>
understanding and share their experiences and • Website <https://patients.cancer.nsw.gov.
ways of coping. They can provide practical au/coping-with-cancer/physical-wellbeing/
information, emotional support and hope. Many eating-well>
people newly diagnosed with cancer find this
one-to-one support very beneficial. Guides to best cancer care
The short guides help patients, carers and
For more information on Cancer Connect call
families understand the optimal cancer care
Cancer Council on 13 11 20.
that should be provided at each step. They
Canteen include optimal timeframes within which tests or
Canteen helps adolescents, young adults and procedures should be completed, prompt lists
parents to cope with cancer in their family. to support patients to understand what might
Canteen offers individual support services, peer happen at each step of their cancer journey
support services and a youth cancer service, as and to consider what questions to ask, and
well as books, resources and useful links. provide information to help patients and carers
communicate with health professionals.
• Telephone: 1800 835 932 to talk to a health
professional about information and support The guides are located on an interactive web
for young people or 1800 226 833 for other portal, with downloadable PDFs available in
enquiries multiple languages.

• Website <www.canteen.org.au/> • Website <www.cancercareguides.org.au>

Care Search: Palliative Care Look Good, Feel Better

Knowledge Network A free national community service program, run
Care Search provides information for patients by the Cancer Patients Foundation, dedicated
and carers on living with illness and how to find to teaching cancer patients how to manage
services. Practical advice on how to care is also the appearance-related side effects caused by
available. treatment for any type of cancer.

• Telephone: (08) 7221 8233 • Telephone: 1800 650 960

• Website <www.caresearch.com.au> • Website <https://lgfb.org.au>

Clinical trial information National Bowel Cancer

Screening Program
For a collection of clinical trials available in
Australia see the following sources of information: Find information about the National Bowel
Screening Program.
• Australian clinical trials <www.
australianclinicaltrials.gov.au> • Program Information Line: 1800 118 868

• Australian New Zealand Clinical Trials Registry • Test Kit Helpline: 1800 930 998
<www.anzctr.org.au> • Translating & Interpreting Service: 13 14 50
• ClinicalTrials.gov <www.clinicaltrials.gov>. • Website <www.cancerscreening.gov.au/bowel>

66
Quitline Cancer Australia
Quitline is a confidential, evidence-based Information for health providers including
telephone counselling service. Highly trained guidelines, cancer learnings, cancer guides,
Quitline counsellors use behaviour change reports, resources, videos, posters and
techniques and motivational interviewing over pamphlets.
multiple calls to help people plan, make and
• Website <www.canceraustralia.gov.au>
sustain a quit attempt.

Quitline is a culturally inclusive service for all, and

Cancer Council Australia
Aboriginal counsellors are also available. Health Information on prevention, research, treatment
professionals can refer patients to Quitline online and support provided by Australia’s peak
or via fax. independent cancer authority.

• Telephone: 13 7848 • Website <www.cancer.org.au>

• Website <www.quit.org.au> or the relevant
CanEAT pathway
website in your state or territory.
A guide to optimal cancer nutrition for people
with cancer, carers and health professionals.
For health providers
• Website <https://education.eviq.org.au/
Australian Cancer Survivorship Centre courses/supportive-care/malnutrition-in-
The Australian Cancer Survivorship Centre cancer>
provides expertise in survivorship care, • Website <https://patients.cancer.nsw.gov.
information, support and education. Its purpose is au/coping-with-cancer/physical-wellbeing/
to support and enable optimal survivorship care. eating-well>
• Telephone: (03) 8559 6220
eviQ
• Website <www.petermac.org/
A clinical information resource providing health
cancersurvivorship>
professionals with current evidence-based,
Australian Commission on Safety and peer-maintained, best practice cancer treatment
Quality in Health Care protocols and information relevant to the
Australian clinical environment.
The Australian Commission on Safety and
Quality in Health Care has developed a guide • Website <www.eviq.org.au>
for clinicians containing evidence-based
National Health and Medical
strategies to support clinicians to understand
Research Council
and fulfil their responsibilities to cancer patients.
Information on clinical practice guidelines,
This guide is particularly relevant to steps 3
cancer prevention and treatment.
to 6 of the optimal care pathway. The guide
is titled NSQHS Standards user guide for • Website <www.nhmrc.gov.au>
medication management in cancer care for
clinicians <https://www.safetyandquality.gov.
au/publications-and-resources/resource-library/
nsqhs-standards-user-guide-medication-
management-cancer-care-clinicians>.

Patients first – optimal care 67

Glossary
advance care directive – voluntary person-led immunotherapy – a type of cancer treatment
document that focus on an individual’s values that helps the body’s immune system to fight
and preferences for future health and medical cancer. Immunotherapy can boost the immune
treatment decisions, preferred outcomes and system to work better against cancer or remove
care. They are completed and signed by a barriers to the immune system attacking the
competent person. They are recognised by cancer.
specific legislation (statutory) or common law
indicator – a documentable or measurable
(non-statutory). Advance care directives can also
piece of information regarding a
appoint the substitute decision-maker(s) who
recommendation in the optimal care pathway.
can make decisions about health or personal
care on the individual’s behalf if they are no informed financial consent – the provision
longer able to make decisions themselves. of cost information to patients, including
Advance care directives focus on the future notification of likely out-of-pocket expenses
health care of a person, not on the management (gaps), by all relevant service providers,
of his or her assets. They come into effect when preferably in writing, before admission
an individual loses decision-making capacity. to hospital or treatment (Commonwealth
Department of Health 2017).
advance care planning – the process
of planning for future health and personal lead clinician – the clinician who is nominated
care, where the person’s values, beliefs and as being responsible for individual patient
preferences are made known so they can guide care. The lead clinician may change over time
decision making at a future time when that person depending on the stage of the care pathway
cannot make or communicate their decisions. and where care is being provided.

alternative therapies – treatments used in metastatic disease – cancer that has spread
place of conventional medical treatment. from the part of the body where it started (the
primary site) to other parts of the body.
care coordinator – the health provider
nominated by the multidisciplinary team to multidisciplinary care – an integrated team
coordinate patient care. The care coordinator approach to health care in which medical and
may change over time depending on the patient’s allied health providers consider all relevant
stage in the care pathway and the location and treatment options and collaboratively develop
care in which care is being delivered. an individual treatment plan for each patient.

complementary therapies – supportive multidisciplinary team – comprises the core

treatment used in conjunction with conventional disciplines that are integral to providing good
medical treatment. These treatments may care. The team is flexible in approach, reflects
improve wellbeing and quality of life and help the patient’s clinical and psychosocial needs and
people deal with the side effects of cancer. has processes to facilitate good communication.

end-of-life care – includes physical, spiritual multidisciplinary team meeting – a meeting

and psychosocial assessment, and care and of health professionals from one or more clinical
treatment, delivered by health professionals and disciplines who together make decisions about
ancillary staff. It also includes support of families recommended treatment of patients.
and carers and care of the patient’s body after
their death.

68
optimal care pathway – the key principles and
practices required at each stage of the care
pathway to guide the delivery of consistent,
safe, high-quality and evidence-based care for
all people affected by cancer.

performance status – an objective measure

of how well a patient can carry out activities of
daily life.

primary care health professional – in most

cases this is a general practitioner but may also
include general practice nurses, community
nurses, nurse practitioners, allied health
professionals, midwives, pharmacists, dentists
and Aboriginal health workers.

spiritual care – the aspect of humanity that refers

to the way individuals seek and express meaning
and purpose and the way they experience their
connectedness to the moment, to self, to others,
to nature, and to the significant or sacred.

substitute decision-maker – a person

permitted under the law to make decisions
on behalf of someone who does not have
competence or capacity.

supportive care – care and support that aims

to improve the quality of life of people living
with cancer, cancer survivors and their family
and carers and particular forms of care that
supplement clinical treatment modalities.

survivorship – an individual is considered a

cancer survivor from the time of diagnosis, and
throughout their life; the term includes individuals
receiving initial or maintenance treatment, in
recovery or in the post-treatment phase.

survivorship care plan – a formal, written

document that provides details of a person’s
cancer diagnosis and treatment, potential late
and long-term effects arising from the cancer
and its treatment, recommended follow-up,
surveillance, and strategies to remain well.

targeted therapy – a medicine that blocks the

growth and spread of cancer by interfering with
specific molecules.

Patients first – optimal care 69

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