Caring for someone nearing the end of life

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 (e.g. handrails in the shower) or buy or rent equipment (e.g. shower and toilet chairs, bedpans, hospital bed).

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.

You may feel unable to care for someone at home and prefer they receive specialist care in a residential facility. Even if they are in a hospice or aged care facility, you can help provide personal care such as helping with feeding, bathing and toileting.

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 – Preparing meals for someone who is sick can become challenging as their needs and illness change. Try cooking simple, small meals. You may have to mash food so it’s easier to swallow – the palliative care team will have a dietitian who can advise you on how to prepare food. As the disease progresses, the person may lose their appetite and not be able to eat or drink. You don’t need to force them to eat or drink. If the person cannot drink, chips of ice can help to moisten the mouth.

Help with bathing and toileting – If the person you are caring for can’t move around easily, you may have to give them a sponge bathe or wash their hair over a basin. You may have to help the person get on and off the toilet or commode, help them use urine bottles or bedpans if they can’t get out
of bed, and sometimes help them to wipe themselves. An occupational therapist can help you choose suitable equipment and teach you how to lift correctly.

Sort out the paperwork – For many people who are dying, getting their affairs in order can help them feel like they’ve given closure to their life. You can help gather important documents, discuss the person’s choices for their future health care, and arrange legal advice if needed.

Record social media details – People often have more of a social media presence than they realise. You can help the person work out which social media accounts they have and what they want to happen to these accounts after they die, and then help compile a list of passwords and   instructions.

Do odd jobs and run errands – Friends can help with walking the dog, mowing the lawn, picking up the kids, or doing the shopping or laundry – anything that eases the workload of the main carer.

Manage medicines – If you need to give medicines and feel overwhelmed, ask your doctor, pharmacist or nurses for suggestions. A pharmacist can put your tablets and capsules into a blister pack (e.g. Webster-pak), which separates them into the days and times you need to take them.

Help with getting in and out of bed – It’s common for a dying person to spend more time in bed. You may need to help them get in and out of bed, roll them over regularly so they don’t get bedsores, or lift them to change the sheets. You can use equipment to help with lifting. Many people create space in the living room for the bed, particularly if bedrooms are located upstairs. The palliative care team can help you provide this care and arrange equipment such as a hospital bed.

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, 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: 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, 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.

Saying goodbye

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. Sharing how you both feel can start important conversations that 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 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 being there, rather than feeling the need to find “the right words”.

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 to 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, just being there sends the message that you care.

In her book The Etiquette of Illness, Susan Halpern suggests asking, “Do you want to talk about how you’re feeling?” rather than “How are you feeling?” This approach is gentle and less intrusive. It also gives the person the choice to respond or to say no.

• Listen to what the person who is 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 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 – 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.
• Accept that you or the person dying may cry or express anger. These are natural responses to a distressing situation.
• Ask questions. Depending on how comfortable you feel asking direct questions and on their willingness to talk, you could ask, “Are you frightened of dying?” or you may prefer a softer approach, “I wonder whether there’s something you want to talk about?”
• 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.

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.

Making arrangements

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, what sort of ceremony they want, 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.

When a person is dying, carers often have lots of questions: Can they hear me? Are they in pain? What can I do to make this process easier? How long will it be now?

There will probably be gradual changes. Watching the physical changes 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. The palliative care team can help you provide physical, emotional and practical comfort. You can also call Cancer Council 13 11 20 to find out what support is available.

Signs that someone is dying

Some family and friends 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. If you would like to know what to expect, this section describes the physical changes in the last days and hours of life.

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.

Sleeping more – The dying person has less energy, and often they may spend most of the day sleeping or resting.

Eating and drinking less – As the body slows down it uses less energy and the person doesn’t need to eat or drink as much. The person may begin to resist or refuse food or drink, and weight loss can occur. Giving fluids at this time doesn’t improve symptoms.

Little interest in the outside world – The dying person may gradually lose interest in people nearby. They may find it hard to concentrate and they may stop talking. Withdrawing is part of letting go. Near the end, some people have a sudden burst of alert behaviour.

Breathing changes – Breathing may become rattly, irregular and laboured. You may hear an irregular breathing pattern known as Cheyne-Stokes. This is a loud, deep breath followed by a long pause (may last from five seconds to as long as a minute), before a loud, deep breath starts again. If mucus builds up in the throat, it can create loud, gurgling sounds, which some people call a “death rattle”. Medicines can help dry up any mucus or you can try changing the person’s position in the bed. Listening to this change in breathing pattern can be upsetting, but it is thought that it is not painful for the person.

Bladder and bowel changes – As the body’s systems slow down, the person may have trouble emptying their bladder. A catheter may be inserted into the bladder to drain urine and avoid a blockage. Medicines may be prescribed for constipation, a common side effect of some pain medicines. As the person eats and drinks less, they will produce less urine and faeces. Loss of bladder and bowel control sometimes happens in the last stages of the dying process, but does not always happen.

Disorientation and confusion – Carers are often unprepared for the person becoming disoriented and confused. This is known as delirium. It can involve a lower level of consciousness; memory loss; hallucinations (seeing or hearing things that aren’t there); delusions (false beliefs); mood swings; and sleep disturbances. A person who is dying may not be aware of where they are or who else is in the room, may speak or reply less often, or may respond to people who can’t be seen by others in the room. The person may drift in and out of consciousness and eventually become unresponsive.

Delirium may occur when waste chemicals (toxins) build up in the brain as vital organs begin to shut down, but it can also have a range of other causes, such as fever or constipation. Talk to the palliative care team about how delirium can be controlled.

Restless moving, twitching, groaning or calling out – These symptoms are part of terminal restlessness, a type of delirium that may include agitation, anxiety, anguish and anger, all of which can be very distressing for carers to see. These symptoms are common and not necessarily uncomfortable for the dying person.

Cool skin, especially the hands and feet – As circulation slows down, the hands, feet, fingers and toes (the extremities) become cooler and turn a bluish colour. It’s thought that the person will be unaware of feeling cold.

Dry mouth and dry or cracked lips – This can happen if the person is dehydrated or has been breathing through their mouth, or it may be due to some medicines.

How you can help in the final stages

Wherever someone chooses to die, family and friends can help in the final stages. If you are providing care at home, ask the palliative care team how you can help. In a palliative care unit, hospital or residential aged care facility, ask the staff how you can be involved.

Offer comfort – Apply lip balm to dry lips, and keep the mouth moist with ice cubes or moist mouth swabs. Put incontinence sheets or pads under the
bedsheets. Use a vaporiser in the room to help with breathing. Keep the person warm with a blanket and use cushions to make them more  comfortable. Help the person change positions frequently. A nurse or occupational therapist can show you suitable positions.

Be a gentle presence – 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. Speak gently, and occasionally remind the person of the time, place and who is with
them. Don’t force-feed even though you may be distressed by their loss of interest in eating.

Create a calm atmosphere – 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.

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.

What happens at death

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 memory of the final moments are likely to stay with you for a long time.

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.

Several organisations will need to be told of the death. Visit the Services Australia website for more information.

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. Funerals can be personalised to suit cultural or spiritual beliefs.

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; you do not need to use a funeral director.

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.

To find a funeral director, visit the Australian Funeral Directors Association website or Funeral Directors Australia. To compare different funeral companies, visit gatheredhere.

You can also choose not to have a funeral or to have a non-traditional event such as a celebration of life.

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.

Download our fact sheet ‘Your role as executor’

Financial matters

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. Check to see if you’re eligible for a bereavement allowance or payment, double orphan pension, widow allowance or pension bonus bereavement payment at Services Australia.

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.

• Cook their favourite meal or cake on their birthday.
• Frame a photo or a cherished note or other memento.
• Create an online memorial page with photos and stories.
• Make a contribution to their preferred charity or community group.
• Create a scholarship or annual award in their memory.
• Organise to have a memorial plaque put in a favourite spot.
• Plant a special tree or flower.
• Light a candle.

Grief

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.

You might feel pressure from yourself or others to get over it and get on with life, but grief has no set time line. It can seem like a roller-coaster – sometimes you might feel yourself “coming good” and then swiftly go downhill again for a while. The sorrow may never go away completely, but most people gradually adapt to the loss. The pain will usually become less intense as you come to terms with how your life has changed.

Sometimes, the pain does not seem to ease over time. If you’re concerned that your grief is stopping you from living your life, professional support may be helpful.

Download our booklet ‘Understanding Grief’