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. However, if you are caring for someone with advanced cancer, we hope that this information helps you navigate the complex challenges of your role.
When cancer won't go away
A diagnosis of advanced cancer means the cancer is unlikely to be cured. Caring for someone with advanced cancer can feel overwhelming at first. You may both be trying to come to terms with the diagnosis and experiencing a range of strong emotions such as fear, sadness and grief.
As well as having to manage your own emotions, you may also have to tell other family members and friends. This can be timeconsuming and difficult, and their reactions may add to your distress. If you need support, talk to your GP or the hospital social worker, or call Cancer Council on 13 11 20.
Cancer Council has produced several booklets for when cancer has advanced. See Living with Advanced Cancer, Understanding Palliative Care and Facing End of Life, or call Cancer Council on 13 11 20.
There are a range of useful resources on the Palliative Care Australia website.
A changing role
As the disease progresses, the person's needs will change and the demands on you as a carer are likely to increase. Some people live with advanced cancer for many years, so there may not be much difference in your caring role immediately. For others, the disease progresses quickly and your responsibilities may become more complex almost overnight.
The doctors may give a general indication 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 care.
Not everyone wants to know their prognosis. If the person you are caring for prefers not to know, you may still want to get some indication to help you plan ahead. You can do so if the person gives their medical team permission to speak to you alone.
Avoiding carer burnout
Caring for someone with advanced cancer can be physically and emotionally demanding. Carers often put their own needs aside and focus all their energy on supporting the person with cancer. This can be hard to keep up over what may be months or years of caring.
Now more than ever, it is important to look after your own wellbeing. Ask for and accept help and find ways to care for yourself. Even taking five minutes to do something you enjoy or to still your mind can mean you cope better.
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.
As a carer, you can be supported in your role by palliative care. This involves a range of services offered by nurses, doctors and allied health professionals, as well as volunteers. It is a team approach that addresses the person's physical, practical, emotional, spiritual and social needs.
Palliative care aims to help people with a life-limiting illness to live as fully and comfortably as possible. It doesn't mean giving up hope – in fact, it can improve quality of life at any stage of advanced cancer and can be given alongside other cancer treatments.
When to start palliative care
You can ask your treatment team for a referral to palliative care as soon as advanced cancer is diagnosed. Even if you don't want to access the services right away, it can be reassuring to understand what support is available. Many people say that they wish they had been referred to palliative care earlier.
How palliative care is provided
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. It can be provided 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). The palliative care team will help you and the person you're caring for work out the best place for their care. 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.
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. However, it is important to realise that 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.
For more information about palliative care, see Understanding Palliative Care or call Cancer Council on 13 11 20.
Support for carers
Although carers may have similar responsibilities and need support at any stage of cancer, their workload usually intensifies if the disease progresses. Most people with life-limiting cancer spend almost all their last year at home, and their carers need additional support with many aspects of the role.
The following section outlines common issues you may face as you care for someone with advanced cancer, and lists who can help and where to find more information.
Sources of support
Many of the health professionals listed here will be part of the treatment team or palliative care team. You can also ask your GP to refer you to appropriate professionals working in private practice. If you're not sure how to get support or just want to talk through your concerns, call Cancer Council on 13 11 20 or your local Carers Association.
Making treatment decisions
It can be confronting and confusing for the person to work out whether to keep pursuing active treatments 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 in making this decision for them.
You may find that symptoms such as pain become more complex to manage, especially because the person is likely to experience a number of symptoms at the same time. However, early medical attention can provide relief and make symptoms easier to manage.
Setting up the home
To make it easier and safer to care for the person at home, you may need to modify the environment (e.g. handrails on steps and in the shower) or buy or rent equipment (e.g. shower and toilet chairs, bed pans, walker, harness for helping to lift the person, hospital bed).
- Who can help: Occupational therapist
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.
Providing personal care
If the person becomes weak or unwell, they may need assistance with showering and toileting. If they are unable to get out of bed, they may need sponge baths and help to use a bed pan or urinal bottle. Some carers prefer to provide this support themselves and just need some guidance from a health professional. Other carers feel uncomfortable doing this personal care and prefer to have it given by someone else.
- Who can help: Community care workers (ask your treatment team or GP for a referral, or contact My Aged Care on 1800 200 422 or at myagedcare.gov.au)
Coping with the increased workload
You may find it difficult to manage all the extra tasks involved in caring for someone with advanced cancer, especially if you have other responsibilities such as paid work or parenting, or if you have your own health issues. There are a range of services available to support you in your caring role.
You may need to manage the financial impact of advanced cancer. This can include finding additional financial support and possibly accessing superannuation and insurance. Seek professional advice before changing any financial arrangements.
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.
Dealing with the emotional impact
A diagnosis of advanced cancer can be distressing for all who are involved, and it is not unusual to experience grief and symptoms of anxiety and depression. Although strong emotions are natural at this time, seek professional help if they are interfering with the ability 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, National Carer Counselling Program 1800 242 636, beyondblue 1300 22 4636, Lifeline 13 11 14
- Read more: Emotional support, How will you feel? and Caring for yourself, 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.
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
The carer can have an important role in helping the person with cancer find reasons to be hopeful. It is possible to be realistic while still maintaining 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
Each state and territory has different laws related to advance care planning. For more information about the legal documents involved, call Cancer Council on 13 11 20 or look for the Getting your affairs in order fact sheet on your local Cancer Council website.
If you have questions, you can also call the Advance Care Planning Advisory Service on 1300 208 582, or visit advancecareplanning.org.au or palliativecare.org.au/advance-care-planning.
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.
Advance care planning
The process of advance care planning begins with a discussion about the person's wishes for their future health care. 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-starter.
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. Palliative care teams are experienced with helping people through these difficult discussions about balancing the quality and length of life.
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. You may find it helpful to talk to the palliative care team about how you are feeling.
If the person hasn't already done so, it is a good idea to make legal arrangements now to ensure their wishes are recorded. This can involve a number of legal documents.
For documents to be legally binding, the person needs to have capacity at the time of signing the document. Capacity includes the ability to understand the choices that are available and the consequences of decisions, as well as the ability to communicate choices. If there could be any doubt about the person's capacity, it's important to talk to both their doctor and their lawyer about this.
Document appointing a substitute decision-maker
The person with cancer can appoint someone to make decisions on their behalf if at some point in the future they can't make their own decisions. These can include decisions about finances, property, medical care and lifestyle. This person is called a substitute decision-maker and is often also the primary carer, but that is not always the case. Sometimes the person with cancer will appoint different substitute decision-makers for financial decisions and medical decisions. Depending on where you live, the documents for appointing substitute decision-makers may be known by different names (e.g. enduring power of attorney, enduring power of guardianship, appointment of enduring guardian) and cover different types of decisions (see different laws for where to find more information).
Advance care directive
Commonly called a "living will", an advance care directive records a person's wishes for their future medical care. It provides a record for doctors, family and carers to consider, and may be legally binding in some states and territories. Depending on where you live, the advance care directive may have a different name, such as a health direction, advance personal plan, advance health directive, or refusal of treatment certificate.
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 may also record the person's wishes regarding guardianship of their children. Many people want to make a will or update the one they have as their circumstances change. 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 (visit publictrusteesaustralia.com for links).
Care at the end of life
It can be confronting to talk about death and dying, but it is important to explore the options for where the person may die and to understand their wishes. Your wishes as the carer also need to be considered. Talking about the options early while the person is still well can help avoid distress and regrets or feelings of guilt later.
Many people say that they would like to die at home. Dying at home usually depends on having at least one carer available at all times. Carers may immediately feel committed to making sure this happens, or they may feel very daunted by the idea. Finding out more about the support available from the palliative care team and other services may help with your decisions and provide reassurance.
Not everyone wants to die at home, and some people change their minds as their situation changes. Depending on the circumstances, a person can be cared for at the end of life by health professionals 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 somebody else, but it can allow you to spend more time just being together. If you wish, you can assist the staff with physical duties.
For more information about the options at the end of life, see Facing End of Life or call Cancer Council on 13 11 20.
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. 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 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. You can download the Groundswell Project's Emotional Will and Death Checklist.
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?"
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.
Having time to grieve 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 actually makes you become closer to the person, and you feel intense grief when they die.
When the person you care for dies
There are many services available to help with the practical and legal aspects of the person's death.
You can read more about these services in the Facing End of Life – contact Cancer Council on 13 11 20 for more information. You can also talk to the social worker on the palliative care team.
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
- shocked 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 for dying
- guilt about things you did or didn't do, about not being there at the time of death, or about how you are feeling.
All these reactions are common. Feeling relief or guilt is not a sign that you didn't care. These emotions may come and go and change in intensity over time. Support groups (face-to-face, telephone or online) or counselling can help you get through times when your grief seems overwhelming.
For information about grief after a person has died from cancer, read Understanding Grief or call Cancer Council 13 11 20.
Expert content reviewers:
Tina Chivende, Social Worker, Cancer Psychosocial Service, Canberra Region Cancer Centre, ACT; Gabrielle Asprey, Telephone Support Group Facilitator, Cancer Council NSW; Dr Ben Britton, Senior Clinical and Health Psychologist, Calvary Mater Newcastle and John Hunter Hospital, and Conjoint Lecturer, School of Medicine and Public Health, University of Newcastle, NSW; Valmai Goodwin, Psychologist, Cancer Counselling Service, Cancer Council QLD; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Zoe Mitchell, Senior Social Worker, Palliative Care, Fiona Stanley Hospital, WA; Amber Rose, Consumer; Carolina Simpson, Policy and Development Officer, Carers NSW.