Caring at the end of life

Making decisions about end-of-life care

It can be confronting to talk about death and dying, but it is important to discuss the options for where the person may want to 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. Although dying is a natural process, few people have experience or knowledge of looking after someone who is dying.

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. It can be helpful to have a backup plan ready in case the person’s medical needs increase and they need to move to a palliative care unit or hospital near the end.

Not everyone wants to die at home, and some people change their minds as their illness progresses or their medical needs increase. People may choose to receive end-of-life care in a hospital, palliative care unit (hospice) or 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 tasks. 

To find out more, see Facing end of life. 

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 symptoms such as pain, nausea or breathlessness are not well controlled. Others may experience emotional distress, anxiety or depression. If the person you are caring for is becoming distressed, encourage them to discuss how they’re feeling with a doctor or counsellor.

Pain and depression can almost always be treated, and help is generally available for other symptoms. It is important that you talk to the healthcare team about any emotional or physical symptoms that are causing the person with cancer distress, 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 emotional distress, call Lifeline on 13 11 14.

Ways to say goodbye

A life-limiting illness offers you the opportunity 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 may be the way they cope with the unknown or it might be because they prefer to focus on the present moment. If you find their response upsetting, it may help to share how you feel with a social worker on the treatment team or call Cancer Connect on 13 11 20.

You can ask the person with advanced cancer if they want to visit a special place, see particular family or friends, contact someone they’ve lost touch with, or see a spiritual care practitioner. 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. You can help the person with all these tasks. They are all part of the process of saying goodbye, for all of you.

The person with advanced cancer may find comfort in planning their own funeral so that family and friends don’t have to guess what they would have wanted. If you find it confronting to be involved in the planning, family and friends may be able to help or talk to a spiritual care practitioner, funeral celebrant or end-of-life doula for assistance.

Anticipatory grief

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

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.

I would find myself rehearsing the eulogy in the shower and then feel guilty. Talking to others at my support group helped me realise my thinking was normal.

Julie

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 loss 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. These responses and thoughts are natural.

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.

After someone dies

The response you have when someone dies is called grief. Coping with grief doesn’t mean getting over the person’s death. It’s about finding ways to live with the loss. The sorrow may never go away completely, but most people gradually adapt.

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 with the person, which can also 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 for the loss
• sadness
• anger towards the doctors or the hospital, your god or the person who died
• 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
• pride in how you supported someone as they were dying
• 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
• regret 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 you will do or how you will manage.

All these reactions are common. These emotions may come and go and change over time. Be kind to yourself. You do not need to rush to make decisions about your life.

There is no right or wrong way to grieve and everyone mourns in their own way. If your grief seems overwhelming, you can reach out to your GP, a bereavement counsellor on the palliative care team, or call Cancer Connect on 13 11 20. Support groups or bereavement counselling can help you get through tough times.

To learn more, see Facing end of life and Grief and Listen to Cancer Council's podcast episode Life After Loss. 

At times the sadness and pain I feel is all consuming and hard to bear, while at other times these feelings are just in the background of my day-to-day activities.

Anne