Providing practical support
Many people worry about how they’ll manage the day-to-day tasks of caring for someone. To make it easier and safer to care for the person at home, you may need to modify the environment, or buy or rent equipment.
Some carers prefer to provide practical support themselves and just need some guidance from a health professional. Other carers find providing personal care awkward or overwhelming and prefer to have it given by someone else. The palliative care team can help reduce your stress and free you up to spend time with the person you’re caring for in a way that is comfortable for you.
Practical ways to help
There are many things that family and friends can do to help support someone at the end of life:
- prepare meals
- help with bathing and toileting
- sort out the paperwork, discuss the person’s choices for their future health care, and arrange legal advice if needed
- record social media details
- do odd jobs and run errands
- manage medicines
- help with getting in and out of bed.
Coping as a carer
Even when you know the end of life is approaching for a family member or friend, you might not feel prepared. Looking after a person who is dying can be stressful. It’s common to feel like you don’t know what to do, what to say and how to cope.
If you’ve never been around someone who is dying before, you may be afraid of what will happen. Learning what to expect can help you feel less frightened and confused, and allow you to plan ways to manage the emotional and physical challenges ahead.
Listen to the 'Caring for someone in their last months' episode of The Thing About Advanced Cancer podcast or call 13 11 20 for support.
Providing emotional support
The diagnosis of a terminal illness may be a crisis 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.
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 loved ones. 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:
- sit with them without talking
- read a book
- sing a song
- share some special memory or experiences you’ve had together
- or tell them that you love them and that family send their love.
When someone is ill for some time, their family and friends often begin to grieve their death before it happens. This is known as anticipatory grief. You may find yourself wishing for the person’s life to be over. It’s also not unusual to start thinking about how you’ll cope, other events in your life and the future. It may help to speak to a counsellor about your feelings or Cancer Council on 13 11 20.
A life-limiting illness offers you time to say goodbye. You can encourage the person who is dying to share their feelings, and you can share your own in return. You can tell them 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 writing their life story or letters to family and friends. They may want to visit a special place or contact someone they’ve lost touch with. You can help the person with all these tasks. 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. Most times, the person who is dying will find comfort in you just being there.
- Listen to what the person who is dying tells you. Try not to prompt an answer that confirms what you think or your hope that things could be better.
- 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 in an overly optimistic way, for example, 'You’ll be up in no time'. Such comments block the possibility of discussing how they’re really feeling.
- 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.
- Accept that you or the person dying may cry or express anger. These are natural responses to a distressing situation.
- Ask questions. 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.
- Just be there. Sometimes it’s the companionship that is most appreciated – sit together and watch television or read.
- 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. If you think they’d find it easier to talk to a spiritual care practitioner, offer to put them in touch with one.
Keeping a vigil
For many people, being with the dying person is a way to show support and love. This is called keeping a vigil. The person may be sedated or unconscious at this time. You can simply sit with them, 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 a 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.
As death approaches, speak to the palliative care team about what to expect. You may want to consider the following:
- Rituals – ask the person whether a clergy member or other spiritual leader or practitioner should be at the bedside, and what rituals or ceremonies should be performed.
- Contact list – ask the person whether they’d like visitors in their final days and who to call after the death.
- Funeral home – notify the chosen funeral home that a death is expected soon. Some people want to have the body at home for several days, so let the funeral home know if this is your wish.
- Ceremony – find out what the person would like done with their body after death or if they’d like to donate tissue or organs. Some people have strong views about whether they want to be buried or cremated and what type of memorial they would like.
- Ambulance service – 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, speak to your doctor about completing an authorised care plan for ambulance officers to follow. Contact the ambulance service in your state or territory to fill in a form so they are not compelled to resuscitate.
Providing physical support
Watching the physical changes of someone dying can be upsetting. It may help to know that they are a normal part of the dying process, and don’t mean that the person is distressed or uncomfortable.
You don’t have to face these changes alone – loved ones, your palliative care team and Cancer Council can provide comfort and support.
Signs that someone is dying
Some people find that information about the physical process of dying helps ease their fear and anxiety. Others prefer to take one day at a time and ask health professionals for explanations as the need arises.
Each death is different, but as a person nears the end of life there are often common signs. These physical changes don’t occur in any particular order. In medical terms, the dying process is viewed as the body’s systems closing down and may include:
- sleeping more
- eating and drinking less
- little interest in the outside world
- breathing changes, such as becoming rattly, irregular and laboured
- bladder and bowel changes
- disorientation and confusion, memory loss, hallucinations (seeing or hearing things that aren’t there), delusions (false beliefs), mood swings and sleep disturbances.
- restless moving, twitching, groaning or calling out
- cool skin, especially the hands and feet
- dry mouth and dry or cracked lips.
Witnessing these physical changes can be distressing. Speak to your palliative care team for ways to manage these symptoms.
Choosing the moment to die
Sometimes people appear to pick the moment to die. You may have heard stories of some people holding out until a particular relative or friend arrives at their bedside, or until a special occasion occurs, before dying. Others appear to wait until their family or friends have left the room before they die.
It can be difficult if you’ve been sitting with someone for many days, and they die while you are taking a break. You may feel guilty or regretful for not being there for them at that crucial moment, but it may help to know that this might be the person’s preference.
No-one really knows what death feels like, but we know what death looks like from those who have nursed a dying relative or friend. The person’s breathing will cease, although they may stop breathing for a time and then take one or two final breaths. As soon as the heart stops beating, the body rapidly cools down and takes on a pale appearance.
The moment of death is sometimes described as being peaceful. Many carers say it was a profoundly moving experience and it felt like a privilege to be there. The memories of the final moments are likely to stay with you for a long time.
Ways to remember
You may want to do something special to acknowledge and honour the life of your family member or friend after they’ve died. Some people find this helps them cope with their loss.
- Frame a photo, cherished note or other memento
- Cook their favourite meal or cake on their birthday
- Plant a special tree or flower
- Light a candle
- Organise to have a memorial plaque put in a favourite spot
- Make a contribution to their preferred charity or community group
- Create a scholarship or annual award in their memory
- Create an online memorial page with photos and stories.
After the death
Even when death is expected, it’s common to feel upset, sad or shocked. An expected death is not an emergency and what you need to do depends on the circumstances.
What to do after the death
If the person was being cared for at home and was expected to die at home, there is no need to call an ambulance or the police. You can take some time to sit with the person. If you would prefer not to be alone, call a friend or family member. If the person dies during the night, you may choose to wait until the morning to take further action.
When you feel ready, call the person’s doctor and a funeral home. The doctor will sign a medical certificate confirming the death. This is needed to make funeral arrangements. The funeral director can register the death with the registry of births, deaths and marriages in your local state or territory, who will provide a death certificate.
If the death occurs in a palliative care unit, hospital or residential aged care facility, there’s usually no need to rush. You can have time alone with the person before the nurses explain what needs to be done. Some people want to wait until other family members or friends have had the opportunity to say goodbye.
You may find information from Services Australia helpful.
Funeral and religious services
Many people have no previous experience organising a funeral and little knowledge of what to do. Funerals can be an important part of the grieving process. They allow family and friends to share their grief, say goodbye and celebrate the person’s life.
The executor of the will or a family member usually arranges the funeral. Most people use a funeral director, who can organise the service, coffin, newspaper notices and flowers, and help with many of the legal responsibilities such as registering the death. You can organise these details yourself if you prefer.
If the person has a prepaid funeral plan, it will usually include details of what they wanted and also which funeral director to use. Sometimes a person may not have prepaid their funeral plan, but may still have left written instructions or talked to you about their wishes.
If you don’t know the person’s wishes, you might need to decide. This can be difficult and stressful, especially as other family members may have different ideas about what should happen. You can also choose not to have a funeral or to have a non-traditional event such as a celebration of life.
Legal and financial matters
Wills and probate
A will is a legal document stating how the deceased person’s belongings (assets or estate) are to be distributed after their death. The executor of the will is responsible for distributing the person’s assets to the people named in the will. This happens after any debts are paid. Before the executor can release any of the assets, they need to have the will validated by the courts. This process is known as probate.
You may be eligible for financial assistance after an immediate family member has died. The Department of Human Services provides a number of payments and services to the spouse, partner or children. You may be eligible for a bereavement allowance or payment, double orphan pension, widow allowance or pension bonus bereavement payment.
The physical and emotional response you have to losing someone you love is known as grief. The feelings you may experience include sadness, numbness, disbelief, loneliness, guilt, anger, relief and acceptance.
You might have trouble sleeping, cry a lot or have difficulty crying, lose your appetite, or not be interested in your usual activities. There’s no right or wrong way to grieve, and everyone mourns in their own way and in their own time.
Coping with grief doesn’t mean getting over the person’s death. It’s about finding ways to adapt to the loss. It may be according to religious or spiritual practices, but it can also be more personal. Even though your relative or friend is no longer physically present, they remain part of you and your life. This ongoing connection can be a source of comfort in your grief.
If you’re concerned that your grief is stopping you from living your life, professional support may be helpful.
Facing End of Life
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Expert content reviewers:
Dr Megan Ritchie, Staff Specialist Palliative Medicine, Palliative Care Service, Concord Repatriation General Hospital, NSW; Gabrielle Asprey, Cancer Support Consultant, Cancer Council NSW; Rosemary Cavanough, Consumer; Louise Durham, Nurse Practitioner, Metro South Palliative Care Service, QLD; Tracey Gardner, Senior Psychologist, Cancer Counselling Service, Cancer Council Queensland; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Linda Nolte, Program Director, Advance Care Planning Australia, VIC; Rowena Robinson, Clinical Advisor, Palliative Care Australia, ACT; Helena Rodi, Program Manager, Advance Care Planning Australia, VIC.
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The information on this webpage was adapted from Facing End of Life - A guide for people dying with cancer, their families and friends (2020 edition). This webpage was last updated in September 2021.