The diagnosis of a terminal illness may create a crisis situation for family and friends. How everyone responds may depend on their relationship with the person dying and their own beliefs about death. It is natural to feel shocked, angry, scared, sad or relieved, or a combination of these emotions.
You may be worried about discussing the end of life with the person who is dying because you think you’ll upset them. It may be helpful to know that people who are dying often want to talk about what is happening but are afraid the topic will upset their carer, family member or friend. Starting the conversation can be difficult, but the opportunity to share feelings can be valuable for both of you.
As the person you are caring for nears the final days of life, there are still many ways to spend time together. You could:
- read a book
- sing a song
- talk about what you’ve been doing or about the weather
- share some special memory or experiences you’ve had together
- tell them that you love them and that family send their love.
If you find conversation difficult, see the suggestions below in When you don’t know what to say.
You may find yourself wishing for the person’s life to be over. It’s also not unusual to start thinking about yourself – about other events in your life, the funeral, and so on. All of these responses and thoughts are natural and okay. It may help to speak to a health professional or counsellor about your feelings, or to call Cancer Council 13 11 20.
Learn more about:
- Saying goodbye
- When you don’t know what to say
- Keeping vigil
- How you can help in the final stages
- Making arrangements
A life-limiting illness offers you time to say goodbye. You can encourage the person dying to share their feelings, and you can share your own in return. Sharing how you both feel can start important conversations, which can be memorable. This is also an opportunity for you to tell the person who is dying what they mean to you, and how you might remember them.
The person nearing the end of life may want to make a legacy, such as documenting their life or writing letters to family and friends. They may want to visit a special place or contact someone they’ve lost touch with. These tasks are all things you can help the person do. They are all part of the process of saying goodbye, for all of you.
When you don’t know what to say
People often wonder what they should say to a person who is dying. It’s understandable that you don’t know what to say – what you feel might be so complex that it’s hard to find the right words, or any words at all. It is common to worry about saying the wrong thing.
You may want to say something that would help them cope but don’t know what that is. It’s usually better to say something than pretend that nothing is wrong.
Someone who is dying will probably appreciate knowing that family and friends are thinking of them. Even if you feel you’re not doing anything, your presence sends the message that you care.
In her book The Etiquette of Illness, Sue Halpern suggests asking, “Do you want to talk about how you’re feeling?” rather than “How are you feeling?” This approach is less intrusive and demanding. It also allows the person the choice to respond or to say no.
- Listen to what the person dying tells you. They may want to talk about dying, their fears or plans. Try not to prompt an answer that confirms what you think or your hope that things could be better. If you think they’d find it easier to talk to a spiritual care practitioner, offer to put them in touch with one.
- Try to treat someone who is dying as normally as possible, and chat about what’s happening in your life. This makes it clear that they’re still a part of your life.
- Avoid talking with an overly optimistic attitude, for example, by saying “You’ll be up in no time.” Such comments block the possibility of discussing how they’re really feeling – their anger, fears, faith and so on.
- Apologise if you think you’ve said the wrong thing.
- Let them know if you feel uncomfortable. They might be feeling uncomfortable too. It’s okay to say you don’t know what to say.
- Ask questions. Depending on how comfortable you feel asking direct questions and on their willingness to talk, you may ask, “Are you frightened of dying?” or you may prefer a softer approach, “I wonder whether there’s something you want to talk about?”
- Just be there. You don’t need to talk all the time. Sometimes it’s the companionship that is most appreciated – sit together and watch television or read.
- Encourage them to talk about their life, if they’re able to and interested. Talking about memories can help affirm that their life mattered and that they’ll be remembered.
- Accept that you or the person dying may cry or express anger. These are natural responses to a distressing situation.
- Even if they’ve shown no religious interest in the past, that could change as death approaches. You could offer to pray together, but respect their wishes if this is not something they want.
For many people, staying with the dying person is a way to show support and love. This is called keeping a vigil. You can simply sit with the person, perhaps holding hands. Hearing is said to be the last sense to go, so you may want to talk, read aloud, sing or play music.
Your cultural or spiritual traditions may require someone to be present, and this may also be the time to perform any rituals.
Some people find keeping vigil exhausting and draining, and it can be hard to estimate how long it will last. Plan to take breaks or organise shifts with other family members and friends. You may worry that leaving the room could mean missing the moment of death. If this happens, it may be reassuring to know that sometimes a person seems to wait to be alone before they die.
How you can help in the final stages
Wherever someone chooses to die, family and friends can provide general care and comfort in the final stages. If you are providing care at home, ask for help from your palliative care team or other organisations. In a palliative care unit, hospital or residential aged care facility, ask the staff how you can be involved.
- Apply lip balm to dry lips, and keep the mouth moist with ice cubes.
- Add incontinence sheets under the bed sheets.
- Use a vaporiser in the room.
- Keep the person warm with a blanket and use cushions to make them more comfortable.
- Help the person change positions frequently.
- Use soft lighting.
- Have their favourite music playing in the background to create a gentle and peaceful atmosphere.
- Quietly read a favourite poem, passage from a book, or spiritual or religious text.
- Sit with the person and talk or hold their hand. Often just being there is all that is needed so that they don’t feel alone.
- Gently massage their hands or feet with a non-alcohol based lotion.
- Don’t force-feed even though you may be distressed by their loss of interest in eating.
- Speak gently, and occasionally remind the person of the time, place and who is with them.
As death approaches, speak to the palliative care team about what to expect. You may want to consider various arrangements.
Ask the person whether a clergy member or other spiritual leader should be at the bedside and what rituals or ceremonies are important to perform.
Ask the person who they would like to have visit in the final days and who to call after the death.
Notify the chosen funeral home that a death is expected soon. Some people want to keep vigil after the person has died – you can have the body at home for up to five days, so let the funeral home know if this is your wish.
Find out what the person would like done with their body after death. Some people have strong views about whether they want to be buried or cremated, what sort of ceremony they want, and what type of memorial they would like.
Ask your health professionals who to contact if complications arise at home. Your first reaction might be to call an ambulance, but an ambulance officer’s duty of care may mean they have to resuscitate. If this is something the person you are caring for would prefer didn’t happen, it’s worth thinking about other options.
You can also contact the ambulance service in your state or territory to find out if you can arrange a document so they are not compelled to resuscitate.