Caring for someone with advanced cancer

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.

Discussing prognosis

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.

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.

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.

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. It’s also called supportive care. The main aim is to maintain quality of life by dealing with the person’s physical, emotional, cultural, social and spiritual needs.

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 involves a range of services that will be tailored to the person with cancer’s individual needs.

Services may include:

• 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 (formerly called a nursing home). 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.

Although carers may need support at any stage of cancer, their responsibilities usually increase if the disease progresses. Following are common issues you may face as you care for someone with advanced cancer, people who can help and where to find more information.

Making treatment decisions – It can be confronting and confusing for the person to work out whether to keep having active 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 a number of symptoms at the same time. Early medical attention can provide relief and make symptoms easier to manage. Who can help? palliative care specialist; palliative care nurse practitioner; pain specialist; cancer specialists; GP; community nurse; physiotherapist; exercise physiologist.

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 and toilet chairs, bedpans, walker, harness for helping to lift the person, hospital bed). Who can help? occupational therapist; physiotherapist.

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. In the very late stages, it is natural to have little appetite so they shouldn’t be forced to eat or drink, but this can be distressing for carers. Who can help? dietitian; speech pathologist.

Providing personal care – If the person becomes weak or unwell, they may need help with showering and toileting. If they are unable to get out of bed, they may need sponge baths and assistance to use a bedpan or urinal bottle. Who can help? community care workers; My Aged Care 1800 200 422.

Coping with the extra workload – You may find it difficult to manage the extra tasks, especially if you have other responsibilities such as a job or looking after children, or if you have your own health issues. Who can I help? My Aged Care 1800 200 422; home help provided by local councils; Carer Gateway; family and friends.

Organising finances – You may need to find additional financial support and possibly access superannuation and insurance. Seek professional advice before changing any financial arrangements. Who can I help? social worker; Cancer Council Financial Referral Service; financial counsellor, financial adviser.

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; Cancer Council Legal Referral Service; Advance Care Planning Australia.

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 to function or enjoy some aspects of life. Who can help? GP; 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.

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. Who can help?  social worker; Cancer Council 13 11 20; particular family members or friends who can relay updates; social networking websites to connect with family and friends online.

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, usually available through your treatment centre); religious leader.

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); family and friends.

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. Ideally, this conversation occurs early, when cancer is first diagnosed or even before. It does not mean that the person has given up or will die soon – many people review their wishes from time to time. Palliative Care Australia has developed a resource to help people talk about the issues – visit dyingtotalk.org.au/discussion-starters. Many people think of this process as part of “hoping for the best and preparing for the worst”.

It is not unusual for a person’s wishes to change once they have been told the cancer is advanced. It is important that the person’s carer, close family members and health professionals understand how much treatment the person wants for the cancer, and what matters to them most when making treatment decisions. It is ideal if the advance care plan can be as detailed as possible so that their preferences are clear. 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.

It can be confronting as a carer if the person you are caring for decides they do not want any more active 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 active treatment even if it may not be beneficial for them. You may find it helpful to talk to the palliative care team about how you are feeling. Palliative care teams are experienced at helping people through these difficult discussions about balancing the quality and length of life.

Different laws

Each state and territory has different laws related to advance care planning.

To find out more about what legal documents are needed where you live, call Cancer Council 13 11 20 or see the ‘Getting your affairs in order’ fact sheet. If you have questions, you can also 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’s Legal Referral Service can connect you with a lawyer and arrange free assistance for eligible clients. Call 13 11 20.

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 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 choices. For more information, talk to your lawyer and doctor, or visit end-of-life.qut.edu.au/capacity.

Document 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. Download forms from advancecareplanning.org.au.

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 South Australians can contact their Public Trustee.

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.

At the time of publication (2022), voluntary assisted dying is illegal in most Australian states and territories. In Victoria and Western Australia, voluntary assisted dying is legal only for people who meet all the strict conditions and follow certain steps. Visit health.vic.gov.au or health.wa.gov.au and search for “voluntary assisted dying”.

Voluntary assisted dying laws have been passed in Tasmania, South Australia and Queensland, and voluntary assisted dying will start between late 2022 and early 2023. The laws in other states and territories are under review. Visit end-of-life.qut.edu.au for updates.

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.

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.

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.

Download our ‘Facing End of Life’ booklet

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. 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 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 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. You can download the Groundswell Project’s Emotional Will and Death Checklist from their website.

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

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 death 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.

A long illness can give family and friends time to slowly get used to the person dying, to say what they want to say or to share memories.

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.

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.

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 to the person, which can 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
• sadness
• 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. These emotions may come and go and change over time. Support groups (face-to-face, telephone or online) or counselling can help you get through times when your grief seems overwhelming. You do not need to rush to make decisions about your life.

There are many services available to help with the practical and legal aspects of the person’s death. Services Australia has a useful checklist of who may need to be notified.

Download our ‘Facing End of Life’ booklet

Download our ‘Understanding Grief’ booklet