Caring for someone with cancer


Caring for someone with advanced cancer

Page last updated: January 2024

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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

Voluntary assisted dying

 

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

Making an advance care directive

Preparing a will

 

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

Dying at home

Ways to say goodbye

Anticipatory 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.

 

Caring for Someone with Cancer

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Caring for Someone with Cancer (Plain English)

Download our simpler fact sheet in plain English to learn more and find support

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