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Caring for someone with cancer


Caring for someone with advanced cancer

Page last updated: January 2024

The information on this webpage was adapted from Caring for Someone with Cancer - A guide for family and friends who provide care and support (2023 edition). This webpage was last updated in January 2024.

Expert content reviewers:

This content has been developed by Cancer Council NSW with thanks to the following reviewers:

  • Dr Alison White, Palliative Medicine Specialist, Royal Perth Hospital, WA
  • Tracey Bilson, Consumer
  • Louise Dillon, Consumer
  • Louise Durham, Nurse Practitioner, Palliative Care Outpatients, Princess Alexandra Hospital, QLD
  • Katrina Elias, Carers Program, South Western Sydney Local Health District, NSW Health, NSW
  • Jessica Elliott, Social Worker, Youth Cancer Services, Crown Princess Mary Cancer Centre, Westmead Hospital, NSW
  • Brendan Myhill, Social Worker and Bereavement Research Officer, Concord Repatriation General Hospital, NSW
  • Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD
  • Olivia Palac, Acting Assistant Director, Occupational Therapy, Gold Coast University Hospital, QLD
  • Nicole Rampton, Advanced Occupational Therapist, Cancer Services, Gold Coast University Hospital, QLD
  • Shirley Roberts, Nurse Consultant, Medical Oncology, Northern Adelaide Cancer Centre, SA
  • Dr Elysia Thornton-Benko, Specialist General Practitioner, and UNSW Research Fellow, NSW
  • Kathleen Wilkins, Consumer
  • Helen Zahra, Carers Program, South Western Sydney Local Health District, NSW Health, NSW

When cancer won't go away

Advanced cancer means the cancer is unlikely to be cured, but it can be controlled for months or, sometimes, years. For some cancer is at a late stage when it is first diagnosed, for others it may have spread or come back 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. 

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. Call Cancer Council on 13 11 20 for support.

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.

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.

Avoiding burnout

It's imortant to look after your own wellbeing when caring for someone with advanced cancer. Stress or distress that lasts a long time can lead to 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, or if you are relying on alcohol or other drugs, talk to your GP.

Looking after yourself

This may be the first time you consider end-of-life issues and advanced cancer. Take your time. 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 useful at this time. The podcast,  The Thing About Advanced Cancer,  may help you navigate through these challenging times.

Palliative care

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.

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.

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. Connecting with the palliative care team early on can help improve quality of life.
  • Who provides care – palliative care can 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 – 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. 
  • 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. But accepting help can mean you can spend more quality time with the person you’re caring for.

Voluntary assisted dying

Voluntary assisted dying (VAD) is when a person with an incurable, life-limiting 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. It is important that you look after your own wellbeing, and whether you want to be involved in the VAD process.

As of November 2023, 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 health care and discussing their preferences with their carer, family, friends and health care team is known as advance care planning. 

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 does not mean that the person has given up or will die soon. You may find it helpful to talk to your experienced palliative care team about how you are feeling.

Learn more

Preparing legal documents

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 decision-making capacity at the time of making the document. 

When preparing legal documents, it is important to seek legal advice. Cancer Council’s Financial and Legal Support Program can connect eligible Victorians with a lawyer. 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 they become too unwell (lose capacity) to make their own decisions. This person is called a substitute decision-maker.

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.

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. The advance care directive may balso be called an 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 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

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.

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. 

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.

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 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.

Anticipatory grief

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 
  • sadness
  • 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
  • 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.

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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