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:

• Overview
• Anticipatory grief
• Voluntary assisted dying

Overview

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.

For more about the options at the end of life, call Cancer Council 13 11 20, or see Facing end of life.

When I see him struggling and he’s had a really rough time, it’s hard to just think maybe it will be easier for him to just die in his sleep. We can talk about that, and it’s reassuring for both of us to put that into words.

Susan

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.

Anticipatory grief

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.

Podcast: Caring for Someone in Their Last Months

Listen to more of our podcast for people affected by advanced cancer