Caring for someone with advanced cancer
This section is about caring for someone who has been told they have advanced cancer. The cancer may have been diagnosed at a late stage or it may have returned after initial treatment.
Most cancers are diagnosed at an earlier stage, so this section may not be relevant to your situation. We hope that this information helps you provide comfort and support to the person you’re caring for.
You may find the information in Caring for someone with cancer useful.
Learn more about:
- When cancer won’t go away
- Avoiding carer burnout
- Discussing prognosis
- Thoughts about euthanasia
- Palliative care
- Support for carers
- Advance care planning
- Legal arrangements
- Caring at the end of life
- Ways to say goodbye
- Anticipatory grief
- When the person you care for dies
When cancer won’t go away
Some people’s cancer may be advanced when they are first diagnosed. For others, the cancer may have spread or come back (recurred) after treatment. Advanced cancer means the cancer is unlikely to be cured, but it can often be managed.
Some people live with advanced cancer as a chronic illness for many years, so there may not be much difference in your caring role immediately. For others, your responsibilities as a carer are likely to increase and may become more complex almost overnight. This may give you little time to adjust to the new situation.
Caring for someone with advanced cancer can feel overwhelming. You may be trying to support the person, while coming to terms with the diagnosis yourself. You may be experiencing a range of strong emotions such as denial, fear, anger, sadness and grief. A diagnosis of advanced cancer also means living with uncertainty about what lies ahead, and this can be challenging.
As well as having to manage your own emotions, you may also have to tell other family members and friends. This can be time-consuming and difficult, and their reactions may add to your distress. Use text messages, email, blogs or social networking sites, or write one letter and send copies to people. If you need support, talk to your GP or the hospital social worker, or call Cancer Council 13 11 20.
Palliative Care Australia also has a range of useful resources.
Avoiding carer burnout
Caring for a person with advanced cancer can be physically and emotionally demanding.
Now more than ever, it is important to look after your own wellbeing (see some tips in Caring for yourself).
Stress or distress that lasts a long time can lead to carer burnout.
This can show in physical and emotional ways.
If you are experiencing mood swings, irritability, sleep problems, changes in appetite, overwhelming fatigue or other signs of stress for more than two weeks, or if you are relying on alcohol or other drugs, talk to your GP or the social worker on the palliative care team.
After a diagnosis of advanced cancer, some people want to find out how long they have left to live, while others prefer not to know. It’s a very personal decision.
If the person you are caring for prefers not to know, you may still want some idea of their prognosis to help you plan ahead. You can ask the person if they can give their treatment team permission to speak to you alone.
The health professionals may give you a general idea of the person’s life expectancy. This is known as the prognosis and it is likely to sound a bit vague, such as months to many months, weeks to months, or days to weeks. The actual time could be shorter or longer, because each individual responds differently to treatment.
Thoughts about euthanasia
If an illness is ongoing or causing uncomfortable symptoms, some people think about speeding things up. Euthanasia is the act of deliberately ending the life of a person with an incurable condition or illness. Voluntary assisted dying is when a person ends their own life with the help of a doctor.
At the time of publication (2020), euthanasia and voluntary assisted dying are illegal in most states and territories in Australia. Voluntary assisted dying for people who meet strict criteria is legal in Victoria and is expected to become legal in Western Australia in mid-2021.
To find out more, visit health.vic.gov.au or health.wa.gov.au and search for “voluntary assisted dying”. The laws are under review in some other states and territories. Visit end-of-life.qut.edu.au for updates.
Regardless of the law, some seriously ill people consider this path. This may be because they feel particularly ill, scared or guilty about the strain they are putting on others. If this is how the person with cancer is feeling, encourage them to discuss their concerns with a doctor or counsellor. Sometimes these feelings are due to depression or a sense of helplessness, or because pain or other symptoms are not well controlled.
Depression and pain can almost always be treated, and help is generally available for other symptoms. It is important that you talk to your doctor or nurse about any emotional or physical symptoms that are causing the person with cancer distress or pain, and find ways to make their final days more comfortable. If you urgently need somebody to talk to because the person you are caring for is thinking about ending their life, call Lifeline on 13 11 14 for telephone counselling at any time.
Podcast: Caring for someone with advanced cancer
Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Mary Bairstow, Senior Social Worker, Cancer Centre, Fiona Stanley Hospital, WA; Anne Booms, Nurse Practitioner – Supportive and Palliative Care, Icon Cancer Centre Midland, WA; Dr Erica Cameron-Taylor, Staff Specialist, Department of Palliative Care, Mercy Hospice, Calvary Mater Newcastle, NSW; Tracey Gardner, Senior Psychologist, Cancer Counselling Service, Cancer Council Queensland; Louise Good, Cancer Nurse Consultant, WA; Verity Jausnik, Senior Policy Officer, Carers Australia; David Larkin, Cancer Supportive Care Manager, Canberra Region Cancer Centre, Canberra Hospital and Health Service, ACT; Kate Martin, Consumer; John McMath, Consumer; Simone Noelker, Physiotherapist and Wellness Centre Coordinator, Ballarat Regional Integrated Cancer Centre, VIC; Tara Redemski, Senior Physiotherapist – Cancer Care, Gold Coast University Hospital, QLD; Dean Rowe, Consumer; Chris Sibthorpe, 13 11 20 Consultant, Cancer Council Queensland.
View the Cancer Council NSW editorial policy.