Although carers may need support at any stage of cancer, their responsibilities usually increase if the disease progresses. Below we list some common issues you may face as you care for someone with advanced cancer, the people who can help and where you can find more information. Your hospital or treatment centre may also host workshops or discussions about cancer, treatments and side effects.
Learn more about:
- Making treatment decisions
- Managing symptoms
- Setting up the home
- Preparing food and drink
- Providing personal care
- Coping with the extra workload
- Dealing with the emotions
- Communicating with family and friends
- Maintaining hope
- Exploring the meaning of the person’s life
- Organising finances
- Making legal arrangements
Making treatment decisions
It can be confronting for the person to work out whether to keep having treatment for the cancer. This decision is theirs alone, but they are likely to discuss it with you. If you are the person’s substitute decision-maker, you may feel a heavy responsibility when making this decision for them.
| Who can help | Palliative care team, cancer specialists, GP, social worker |
| What to read | Living with advanced Cancer, Understanding palliative care, Cancer care and your rights, Facing end of life, and listen to Making Treatment Decisions podcast. |
Managing symptoms
You may find that symptoms such as pain become more complex to manage, especially as the person is likely to experience several symptoms at the same time. Early medical attention can provide relief and make symptoms easier to manage.
| Who can help | Palliative care specialist, pain specialist, cancer specialists, GP, community nurse, physiotherapist, occupational therapist, exercise physiologist, after hours GP |
| What to read | Living with advanced cancer, Facing end of life, Overcoming cancer pain, and listen to our podcast series for people affected by advanced cancer |
Setting up the home
To make it easier and safer to care for someone at home, you may need to make some changes (e.g. handrails on steps and in the shower) or buy or rent equipment (e.g. shower chair, bedpans, walker, hoists to help lift the person, hospital bed). Talk to your health care team to see if there is any financial support you may be able to get for home modifications.
| Who can help | Occupational therapist, physiotherapist, Home Modification Information Clearinghouse (homemods.info) |
Preparing food and drink
It can be challenging to prepare food and drink for a person with advanced cancer, especially if they find it hard to swallow or have lost their appetite. Try not to force them to eat or drink. In the late stages, it is natural to have little appetite, but this can be distressing for carers.
| Who can help | Dietitian, speech pathologist |
| What to read | Nutrition and cancer |
Providing personal care
You may have to: help the person get in and out of bed, shower or wash their hair; give them a sponge bath; help them on and off the toilet or commode; help them use a urine bottle or bedpan; and help them to wipe themselves. Ask an occupational therapist or physiotherapist about suitable equipment and how to support the person’s movement safely and correctly. You may need someone else to help you.
| Who can help | Occupational therapist, physiotherapist, palliative care team, community care workers, Carer Gateway 1800 422 737, My Aged Care 1800 200 422 |
Coping with the extra workload
You may find it difficult to manage extra tasks, especially if you have other responsibilities such as a job or looking after children, or if you have your own health issues. Talk with family and friends about ways they can help.
| Who can help | Carer Gateway 1800 422 737, My Aged Care 1800 200 422, social worker |
Dealing with the emotions
A diagnosis of advanced cancer can be distressing for all involved, and it is common to experience grief, anxiety and depression. Seek professional help if these emotions are making it hard for you to function or enjoy some aspects of life.
| Who can help | GP or palliative care team, social worker, psychologist, counsellor or psychiatrist, support groups, Cancer Council 13 11 20, Carer Gateway Counselling Service 1800 422 737, Beyond Blue 1300 22 4636, Lifeline 13 11 14, church or religious groups |
| What to read | Emotional support, How you will feel, Emotions and cancer, Understanding grief |
Communicating with family and friends
The carer is often the main point of contact for family and friends. It can be challenging to cope with people’s reactions when you are struggling with your own. Giving constant updates as the disease progresses can also be draining and time-consuming.
It is important to make sure children in your family are included and supported in discussions about advanced cancer and end-of-life issues.
| Who can help | Social worker, Cancer Council 13 11 20, family members or friends who can share updates, social media apps to connect with family and friends |
| What to read | Talking to kids about cancer |
Maintaining hope
The carer can have an important role in helping the person with cancer maintain hope. As the disease progresses, the things the person hopes for may change. For example, they may hope to visit special places or spend time with family and friends.
| Who can help | Social worker, psychologist or counsellor, spiritual care practitioner (pastoral carer), religious leader, family and friends |
| What to listen to | Listen to our podcast The Role of Hope and Purpose in Advanced Cancer |
Exploring the meaning of the person’s life
This may be a time when the person wants to reflect on their life and make sense of their experience. They may appreciate help recording their memories and insights in some way. Some people also want to explore spirituality, even if they have never been religious.
| Who can help | Social worker, psychologist or counsellor (ask your treatment team or GP for a referral), spiritual care practitioner (also called a pastoral carer, may be available at your treatment centre), religious leader |
| What to listen to | Listen to our podcast series for people affected by cancer and advanced cancer |
Organising finances
You may need to find additional financial support and possibly help the person you are caring for access their superannuation and insurance. Seek professional advice before changing any financial arrangements.
| Who can help | Social worker, financial counsellor or financial adviser, National Debt Helpline 1800 007 007, Services Australia Financial Information Service 132 300, Cancer Council 13 11 20 |
| What to read | Cancer and your finances, Financial matters |
Making legal arrangements
If the person hasn’t already done so, it is important to make sure their wishes for the future have been documented. This can include preparing a will, appointing a substitute decision-maker and preparing an advance care directive.
| Who can help | Social worker, National Advance Care Planning Support Service 1300 208 582, lawyer (contact your state or territory Law Society), Community Legal Centres, Cancer Council 13 11 20 |
| What to read | Advance care planning, Getting your affairs in order |
Video: Support for families
Podcast: Caring for Someone with Advanced Cancer
Listen to more of our podcast for people affected by advanced cancer
More resources
Dr Alison White, Palliative Medicine Specialist, Royal Perth Hospital, WA; Tracey Bilson, Consumer; Louise Dillon, Consumer; Louise Durham, Nurse Practitioner, Palliative Care Outpatients, Princess Alexandra Hospital, QLD; Katrina Elias, Carers Program, South Western Sydney Local Health District, NSW Health, NSW; Jessica Elliott, Social Worker, Youth Cancer Services, Crown Princess Mary Cancer Centre, Westmead Hospital, NSW; Brendan Myhill, Social Worker and Bereavement Research Officer, Concord Repatriation General Hospital, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Olivia Palac, Acting Assistant Director, Occupational Therapy, Gold Coast University Hospital, QLD; Nicole Rampton, Advanced Occupational Therapist, Cancer Services, Gold Coast University Hospital, QLD; Shirley Roberts, Nurse Consultant, Medical Oncology, Northern Adelaide Cancer Centre, SA; Dr Elysia Thornton-Benko, Specialist General Practitioner, and UNSW Research Fellow, NSW; Kathleen Wilkins, Consumer; Helen Zahra, Carers Program, South Western Sydney Local Health District, NSW Health, NSW.
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