Caring for someone with advanced cancer

When cancer won’t go away

Some people’s cancer may be at a late stage 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 controlled for months or, sometimes, years.

Changes to the caring role

Some people live with advanced cancer as a chronic illness for a long time, so there may not be much difference in your caring role immediately. Other people may feel very unwell, so 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.

How you might feel – 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.

Family and friends – 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 media, or write one letter and send copies to people. If you need support, talk to your GP or a hospital social worker, or call Cancer Council 13 11 20.

Discussing prognosis

After a diagnosis of advanced cancer, some people want to know how long they have left to live. 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 what to expect. This can help you understand what is happening and prepare for the changes. You can ask the person if they will 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.

They will probably talk about the time in terms of days, days to weeks, weeks to months, or months to years. The actual time could be shorter or longer, because each individual responds differently to treatment.

Palliative care

What palliative care is – Palliative care is person-centred care that helps people with a progressive, life-limiting illness to live as comfortably as possible. The goal of palliative care is to improve quality of life for both the person with cancer, and their family and carers.

Palliative care doesn’t mean giving up hope. It is not just for end-of-life care – it may be beneficial for people at any stage of advanced cancer.

Palliative care services – The palliative care team will help identify services that can offer emotional and practical support to you in your caring role. These may include:

• relief of the person’s symptoms (e.g. pain, breathlessness, nausea)
• help organising equipment for home (e.g. mobility aids, special beds)
• help with discussions about sensitive issues and suitable care options
• 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.

If the person chooses not to have active treatment for the cancer, palliative care can help ensure any symptoms are well controlled and the person is comfortable. The palliative care team can help you understand what is happening and what happens next.

Our cancer care team talked about how palliative care could make my husband’s life easier and more meaningful. I found it so useful to know that help was available when I needed it.” ANNA

How palliative care works

When to start – Palliative care is useful at all stages of advanced cancer and can be given alongside active treatment for cancer. Connecting with the palliative care team early on can help improve quality of life.

Who provides care – Palliative care may be led by a GP, nurse practitioner or community nurse or, if the person’s needs are complex, by a specialist palliative care team.

Where care is provided – The palliative care team will work with you and the person you are caring for to plan the best place for care. This may be at home supported by community palliative care services, in hospital, at a residential aged care facility or in a palliative care unit (hospice).

Your role – Carers are considered part of the palliative care team. With the agreement of the person being cared for, the palliative care team will include you in decisions about their care and treatment.

Accepting help – If you have been providing most of the person’s care, it can be difficult to let other people take over some tasks. As 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.

Support for common issues carers face

Although carers may need support at any stage of cancer, their responsibilities usually increase if the disease progresses. Below are 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.

Support with medical care

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.

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.

Practical support

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..

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.

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 I help?
Carer Gateway 1800 422 737; My Aged Care 1800 200 422; social worker.

Emotional support

Dealing with 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 group.

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.

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.

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 the treatment team or GP for a referral); spiritual care practitioner (pastoral carer, may be available at your treatment centre); religious leader.

Support with legal and financial matters

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.

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.

Advance care planning

Advance care planning is when a person thinks about their future health care and discusses  their preferences with their carer, family, friends and health care team. This may take several discussions and can involve:

• talking with the person with cancer about what is important to them for quality of life and  what matters most when making treatment decisions
• discussing the treatments the person with cancer may or may not want
• preparing legal documents, including appointing a substitute decision-maker and making an advance care directive.

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.

Starting the conversation – Although advance care planning is often done when people are first diagnosed with cancer, it can be started at any time, whether the person is healthy or ill. Discussing the person’s wishes does not mean they have given up hope or will die soon – their needs may change over time and it is a good idea to regularly review the plan.

If you need some tips on starting the conversation, you might like to use one of Palliative Care Australia’s discussion starters or Advance Care Planning Australia’s conversation starters.

How you might feel – It can be confronting as a carer if the person you are caring for decides they do not want any more treatment for the cancer. On the other hand, you may worry about the impact on their quality of life if they decide to keep pursuing treatment, even if it may not benefit them. You may find it helpful to talk to the palliative care team about how you are feeling.

Different laws

Each state and territory has different laws about what capacity means, making advance care directives and appointing substitute decision-makers. To find out more, talk to a lawyer, visit Advance Care Planning Australia or call them on 1300 208 582.

When preparing legal documents, it is important to seek legal advice. Cancer Council may be able to connect the person you are caring for with a lawyer. Call 13 11 20 to find out more.

Download our fact sheet ‘Getting your affairs in order’

Preparing legal documents

If the person 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 the person’s wishes are recorded.

For these documents to be legally binding, the person needs to have decision-making capacity at the time of making the document. In general, this means the person can understand and remember information about the available choices, understand the consequences of their decisions, and communicate their decisions. For more information, talk to your lawyer and doctor, or visit
End of Life Law in Australia.

Appointing a substitute decision-maker

The person with cancer can appoint someone to make medical decisions on their behalf if they become too unwell (lose capacity) to make their own decisions. This person is called a substitute decision-maker, and they may be a person’s spouse or family member, or someone else the person trusts. Depending on your state or territory, the documents used to appoint a substitute decision-maker may be called by different names, such as enduring power of attorney or appointment of enduring guardian. If the person has not appointed a substitute decision-maker, the law in each state or territory outlines who may make medical treatment decisions on their behalf. This is usually someone close to them, such as a spouse or partner, family member or close friend. If you are unsure if you have the right to make treatment decisions on the person’s behalf, talk to the treatment team or a lawyer.

Making an advance care directive

An advance care directive is a written record of a person’s values and preferences for any future medical care. It is ideal if the advance care directive can be as detailed as possible so that their preferences are clear. An advance care directive is legally binding and can be used by doctors, family members and carers to guide their decision-making. Depending on where you live, the advance care directive may be called an advance health directive, advance personal plan or similar.

Once the document has been signed, dated and witnessed, the person you are caring for may ask you to share copies with the substitute decision-maker (if that is not you) and the treatment team, so it can be placed on their medical record. A copy can also be saved to the person’s
My Health Record. You may also want to take witnessed copies with you to appointments.

Preparing a will

A will is a legal document that sets out what a person wants to happen to their assets after they die. These assets, called an estate, may include a house, land, savings or investments. A will can also record the person’s wishes regarding who will look after their children (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 advise you or contact the Public Trustee in your state or territory.

Voluntary assisted dying

Voluntary assisted dying (VAD) is when a person with an incurable, life-limiting condition or illness chooses to end their life with the assistance of a doctor or health practitioner – using specially prescribed medicines from a doctor.

At the time of the last review of this information (November 2023), VAD laws have commenced operation in all states of Australia. VAD remains illegal in the Australian Capital Territory and Northern Territory, although the laws are under review. For information and updates on VAD for your state or territory, visit Queensland University of Technology’s End of Life Law in Australia website.

VAD may be an option for some people who meet all the strict conditions and follow certain steps as required by the laws in their state.

“Voluntary” means that it is the choice of the unwell person to end their life. You cannot ask for VAD on their behalf or pressure them to ask for it; only they can ask for it and they must have decision-making capacity.

You may have a range of emotional responses if the person you are caring for chooses to investigate VAD. You may find it confronting if they choose to proceed with VAD, and it is important that you look after your own emotional wellbeing.

The person may also ask you to be present when they end their life, and it is important to think about how you might feel. It is your choice whether to be involved in the VAD process. You may find it helpful to get support from your GP or a counsellor.

For more details, visit the Health Department website in your state.

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 want to 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.

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. Although dying is a natural process, few people have experience or knowledge of looking after someone who is dying.

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. It can be helpful to have a backup plan ready in case the person’s medical needs increase and they need to move to a palliative care unit or hospital near the end.

Not everyone wants to die at home, and some people change their minds as their illness progresses or their medical needs increase. People may choose to receive end-of-life care in a hospital, palliative care unit (hospice) or 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 tasks.

Download our ‘Facing End of Life’ booklet

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 symptoms such as pain, nausea or breathlessness are not well controlled. Others may experience emotional distress, anxiety or depression. If the person you are caring for is becoming distressed, encourage them to discuss how they’re feeling with a doctor or counsellor.

Pain and depression can almost always be treated, and help is generally available for other symptoms. It is important that you talk to the health care team about any emotional or physical symptoms that are causing the person with cancer distress, 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 emotional distress, call Lifeline on 13 11 14 at any time.

Ways to say goodbye

A life-limiting illness offers you the opportunity to say goodbye. You can encourage the person with advanced cancer to share their feelings, and you can share your own in return. It is understandable that 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 may be the way they cope with the unknown or it might be because they prefer to focus on the present moment. If you find their response upsetting, it may help to share how you feel with a social worker on the treatment team or call Cancer Council 13 11 20.

You can ask the person with advanced cancer if they want to visit a special place, see particular family or friends, contact someone they’ve lost touch with, or see a spiritual care practitioner. 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. You can help the person with all these tasks. They are all part of the process of saying goodbye, for all of you.

The person with advanced cancer may find comfort in planning their own funeral so that family and friends don’t have to guess what they would have wanted. If you find it confronting to be involved in the planning, family and friends may be able to help or talk to a spiritual care practitioner, funeral celebrant or end-of-life doula for assistance.

I would find myself rehearsing the eulogy in the shower and then feel guilty. Talking to others at my support group helped me realise my thinking was normal.” JULIE

Anticipatory grief

Some carers experience anticipatory or pre-loss grief. This is the grief you feel when you are expecting the death of someone close to you.

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. This form of grief is a natural reaction to a very difficult situation.

You may feel sad, down and depressed or become anxious and concerned for your family member or friend. Or you may find yourself preparing for the loss and beginning to think about what life might be like once they are gone. It is common to have thoughts such as: “How will it be when they are not here? How will I cope on my own?” This doesn’t mean you are a bad or uncaring person. These responses and thoughts are natural.

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, and that things have not worked out as you had planned.

After someone dies

The response you have when someone dies is called grief. Coping with grief doesn’t mean getting over the person’s death. It’s about finding ways to live with the loss. The sorrow may never go away completely, but most people gradually adapt.

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 once they have died. Sometimes the experience of anticipating the death and spending a lot of time caring for the person strengthens your relationship with the person, which can also increase your grief.

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 for the loss
• sadness
• anger towards the doctors or the hospital, your god or the person who died
• relief that the person is no longer in pain
• guilt that you feel relieved to be free of the burden of caring and can now make plans for your future
• pride in how you supported someone as they were dying
• 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
• regret 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 you will do or how you will manage.

All these reactions are common. These emotions may come and go and change over time. Be kind to yourself. You do not need to rush to make decisions about your life.

There is no right or wrong way to grieve and everyone mourns in their own way. If your grief seems overwhelming, you can reach out to your GP, a bereavement counsellor on the palliative care team, or call Cancer Council 13 11 20. Support groups or bereavement counselling can help you get through tough times.

At times the sadness and pain I feel is all consuming and hard to  bear, while at other times these feelings are just in the background of my day-to-day activities.” ANNE

Download our ‘Facing End of Life’ booklet

Download our ‘Understanding Grief’ booklet