When cancer won't go away
Advanced cancer means the cancer is unlikely to be cured, but it can often be managed. For some people, cancer is advanced when it is first diagnosed. For others, the cancer may have spread or come back (recurred) after treatment.
Caring for someone with advanced cancer can feel overwhelming and you may experience a range of strong emotions. You may be trying to support the person, while coming to terms with the diagnosis yourself. Living with uncertainty about what lies ahead can be challenging.
You may have to tell other family members and friends about the diagnosis, which can be time-consuming and difficult, and their reactions may add to your distress. If you need support, talk to your GP, the hospital social worker, or call Cancer Council on 13 11 20.
Avoiding carer burnout
Caring for someone with advanced cancer can be demanding and it's important to look after your own wellbeing. Stress or distress that lasts a long time can lead to carer burnout, which 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.
Looking after yourself
This may be the first time you consider end-of-life issues and advanced cancer. Take your time. Read what seems useful now and leave the rest until you’re ready. If you have any questions, call Cancer Council on 13 11 20. Ask about joining a support group or our online discussion forum to connect with others who have a similar experience.
You may find information about caring for someone nearing the end of life more useful at this time. The podcast, The Thing About Advanced Cancer, provides insights to help you navigate through these challenging times.
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.
Health professionals can 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. The actual time could be shorter or longer because each individual responds differently to treatment.
You can also be supported in your caring role by palliative care. This is person-centred care that helps people with a progressive, life-limiting illness to live as fully and comfortably as possible. The aim is to maintain quality of life by dealing with the person’s physical, emotional, cultural, social and spiritual needs.
It is not just for the end of life – it may be beneficial for people at any stage of advanced cancer. Palliative care involves a range of services that will be tailored to the person with cancer’s individual needs, such as:
- relief of pain, breathlessness, nausea and other symptoms
- help organising equipment for home (e.g. wheelchairs, special beds)
- assistance for families and carers to talk about sensitive issues
- links to other services such as home help and financial support
- support for people to meet cultural obligations
- counselling, grief and bereavement support
- support for emotional, social and spiritual concerns
- referrals to respite care services.
How palliative care works
- When to start – palliative care is useful at all stages of advanced cancer and can be provided alongside active treatment for cancer. Starting palliative treatment from the time of diagnosis can help improve quality of life.
- Who provides care – palliative care may be coordinated by a GP or community nurse or, if the person’s needs are complex, by a specialist palliative care team.
- Where care is provided – options include at home supported by a community palliative care service, in hospital, in a palliative care unit (hospice) or at a residential aged care facility. Sometimes people spend a short time in hospital or in a palliative care unit to help get their symptoms under control and then return home again.
- How you can help – carers are considered part of the palliative care team. If you have been providing most of the person’s care, it can be difficult to let other people take over some tasks. But because the caring demands are likely to keep increasing as the cancer progresses, accepting help can mean you can spend more quality time with the person you’re caring for.
Voluntary assisted dying
Voluntary assisted dying is when a person with an incurable condition or illness chooses to end their life and uses medicines specially prescribed by a health practitioner. 'Voluntary' means it is the choice of the person to end their life. Voluntary assisted dying is not part of palliative care.
As of June 2022, voluntary assisted dying laws have been passed in all six states in Australia, and are under review in the two territories. In Victoria, voluntary assisted dying is available only for people who meet all the strict conditions and follow certain steps. Find out more and stay up-to-date.
Advance care planning
Planning for a person’s future medical care and discussing their treatment preferences and values with family, friends and the health care team is known as advance care planning. It does not mean that the person has given up or will die soon.
Studies show that families of people who have done advance care planning feel less anxiety and stress when asked to make important health decisions for others. You may find it helpful to talk to your experienced palliative care team about how you are feeling.
If the person with cancer hasn’t already done so, now is a good time to appoint a substitute decision-maker, make an advance care directive and prepare a will. These legal documents ensure that their wishes are recorded.
For any of these documents to be legally binding, the person needs to have capacity at the time of signing the document. Having capacity means the person has the ability to understand the choices that are available and the consequences of decisions, as well as the ability to communicate.
When preparing legal documents, it is important to seek legal advice. Cancer Council’s Legal Referral Service can connect you with a lawyer and arrange free assistance for eligible clients. Call 13 11 20 for more information and support.
Appointing a substitute decision-maker
The person with cancer can appoint someone to make medical decisions on their behalf if at some point in the future they lose capacity to make their own decisions. These can include decisions about medical care and treatment. This person is called a substitute decision-maker.
The substitute decision-maker may be the primary carer or someone else the person trusts. Depending on where you live, the documents for appointing a substitute decision-maker may be known as enduring power of attorney, enduring power of guardianship, or appointment of a medical treatment decision maker.
Making an advance care directive
This directive records a person’s wishes for their future medical care. Doctors, family members and carers can consider this directive if the person is unable to communicate or make decisions, and may be legally binding in some states and territories.
Depending on where you live, the advance care directive may also be known as an advance health directive or advance personal plan.
Preparing a will
This is a legal document that sets out what a person would like to do with their assets (estate) after they die. A will can also record the person’s wishes regarding who will look after any children under the age of 18 (guardianship).
Many people want to make a will or update the one they have as their situation changes. Some carers choose to make or update their own will at the same time as the person with advanced cancer. This can help to make it feel like a normal, everyday process.
Making a will is not difficult, but it needs to be prepared and written in the right way to be legally valid. It is best to ask a lawyer to help you or contact the Public Trustee in your state or territory.
Caring at the end of life
It can be confronting to talk about death and dying, but it is important to discuss the options for where the person may die and to understand their wishes. As the carer, your wishes also need to be considered.
Talking about the options early while the person is still well can help avoid rushed decision-making, distress, and regrets or feelings of guilt later.
Learn more about facing end of life
How to support someone in distress
If an illness is ongoing or causing uncomfortable symptoms, some people may become distressed. This may be because they feel particularly ill, or scared or guilty about the strain they are putting on others. Some people become distressed because pain or symptoms such as depression are not well controlled.
If the person you are caring for is becoming distressed, encourage them to discuss how they’re feeling with a doctor or counsellor. 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 in distress, call Lifeline on 13 11 14 at any time.
Dying at home
Many people say that they would like to die at home. Carers may want to respect the person’s wishes, but may feel worried because they don’t know what to expect. Dying at home is possible with planning and support.
Finding out more about the support available from the palliative care team and other services may help you feel more comfortable. Not everyone wants to die at home, and some people change their minds as their illness progresses.
Other options for end-of-life care include in a hospital, a palliative care unit (hospice) or a residential aged care facility. Some carers feel guilty about handing over the everyday care to others, but it can allow you to spend more time just being together. If you wish, you can assist the staff with physical duties.
Ways to say goodbye
A life-limiting illness offers time to say goodbye. You can encourage the person with advanced cancer to share their feelings, and you can share your own in return.
You might not know what to say or worry about saying the wrong thing. Ask the person if they would like to talk about how they are feeling. This can give you an idea of whether they are ready to talk about the situation – they may be avoiding the topic for fear of upsetting you.
Some people who are dying refuse to acknowledge it or may seem to be in denial. This might be because they prefer to focus on the present moment. If you find this upsetting, it may help to talk it over with the social worker on your treatment team or call Cancer Council on 13 11 20.
You can ask the person with advanced cancer if they want to visit a special place or contact someone they’ve lost touch with. They may also appreciate help creating a legacy, such as documenting their life in some way, creating a memory box of keepsakes, or writing letters to family and friends. One option is to create an emotional will, a document that shares their thoughts with their family and friends.
Services Australia has a useful checklist of who may need to be notified when the person dies.
Some carers experience anticipatory grief, which is grief you feel when you are expecting the death of someone close to you. You may feel sad, down and depressed or become anxious. You may find yourself preparing for the death and beginning to think about what life might be like once they are gone. This doesn’t mean you are a bad or uncaring person.
You may also feel anticipatory grief if the person you are caring for undergoes a change such as long periods of confusion or reduced consciousness. Although they are still physically present, you may feel as though you have somehow already lost the person that you love. There is also the grief for a life not led, and the loss of the future you may have imagined or hoped for with that person.
Even when a death is expected, it may still feel like a great shock and it doesn’t necessarily make the loss of the person easier to cope with. Sometimes the experience of anticipating the death and spending a lot of time caring for the person strengthens your relationship, which can increase your grief.
Life after caring
After the person dies, you may feel a range of emotions, including:
- numbness and shock, or a sense of disbelief, even if you thought you were prepared
- relief that the person is no longer in pain
- shock that you feel relieved to be free of the burden of caring and can now make plans for your future
- anger towards the doctors or the hospital, your god or the person who died
- questioning whether there were things that you or the treatment team could have done differently to prolong life or make things better for the person
- guilt about things you did or didn’t do, about not being there at the time of death, or about how you are feeling
- anxiety about the future – what will you do or how will you manage financially.
All these reactions are common, and they may come and go and change over time. Support groups or counselling can help you get through times when your grief seems overwhelming. You do not need to rush.
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Expert content reviewers:
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.
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The information on this webpage was adapted from Caring for Someone with Cancer - A guide for family and friends who provide care and support (2020 edition). This webpage was last updated in November 2021.