Caring for someone nearing the end of life

Sunday 1 January, 2017

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On this page: Coping as a carer | Providing practical support | Providing emotional support | Providing physical support | After the death


Even when you know the end of life is approaching for a family member or friend, you might not feel prepared. This section covers the practical, emotional and physical issues to expect, and how you can provide comfort and support.

Coping as a carer

Looking after a person who is dying can be stressful, and you will need help and support. It’s not unusual 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 about what might happen can help you feel less frightened and confused, and allow you to prepare for the emotional and physical changes ahead.

Caring can be physically and emotionally hard work. For suggestions on how you can look after yourself during this time see Caring for Someone with Cancer or call Cancer Council  13 11 20.

Providing practical support

Many people worry about how they’ll manage with the day-to-day tasks of looking after someone. These might include showering, toileting and getting the person safely in and out of bed. You may find providing personal care awkward or embarrassing, especially at first, but most carers say they get used to it. However, your family member or friend may prefer to receive personal care from somebody they don’t know well.

The palliative care team is there to support you as well and may be able to take over some of these tasks. This support can help reduce your stress and free you up to spend quality time with the person you’re caring for.

Ways to help

There are many things that family and friends can do to help support someone at the end of life.

Do odd jobs and run errands

Friends can offer to step in with walking the dog, mowing the lawn, picking up the kids or doing the shopping – anything that eases the workload of the main carer.

Prepare meals

Preparing meals for someone who is sick can become complicated 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 what is needed. As the disease progresses, the person may lose their appetite and not be able to eat or drink. At this time, it’s important not to force eating or drinking. If the person cannot drink, chips of ice can help to moisten the mouth.

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.

Assist with toileting

You may have to help the person get on and off the toilet or commode, help them use urine bottles or bed pans if they can’t get out of bed, and sometimes help them to wipe themselves. Lifting someone is hard work and you may need help with this, either from another person or mobility aids or equipment. An occupational therapist can help you choose suitable equipment.

Help with bathing and washing

If the person you are caring for can’t move around easily, you may have to sponge bathe them or wash their hair over a basin.

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.

Manage medicines

If you need to give medicines and feel overwhelmed, ask your doctor, pharmacist or nurses for suggestions. For tablets and capsules, a blister pack (e.g. Webster-pak) can set out all the doses that need to be taken throughout the week. See Caring for Someone with Cancer for tips on managing medicines.

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.

Providing emotional support

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 can 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; or tell them that you love them and that family send their love. If you find conversation difficult, see the suggestions in 'when you don’t know what to say' below.

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.

Saying goodbye

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 Illness1, 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.
Keeping vigil

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.

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.
Comfort
  • 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.
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.
  • 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.
Making arrangements

As death approaches, speak to the palliative care team about what to expect. You may want to consider various arrangements.

Rituals

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.

Funeral home

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.

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, 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.

Contact list

Ask the person who they would like to have visit in the final days and who to call after the death.

Ceremony

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.

Providing physical support

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 easier? How long will it be now?

There will probably be gradual changes. Some people can continue with their activities, others find they have to pace themselves or spend more time at home. It can be upsetting to witness physical changes. It may help to know that they are 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 call Cancer Council 13 11 20 to find out what support is available.

Changes that occur before death

Some family and friends find that information about the physical process of dying helps them prepare. 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 unique, but as a person nears the end of life they often show common signs. In medical terms, the dying process is viewed as the body’s systems closing down.

Sleeping more

The dying person has less energy, often spending most of the day sleeping or resting.

Loss of appetite

The body needs less energy to keep going and appetite decreases. The person may begin to resist or refuse meals or liquids, and weight loss can occur.

Little interest in the outside world

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

Breathing changes

Breath intakes and exhalations often become rattly, irregular and laboured. You may hear a pattern of breathing known as Cheyne-Stokes: a loud, deep inhalation followed by a pause of not breathing (which may last from five seconds to as long as a minute), before a loud, deep breath resumes and again slowly fades out. Sometimes excessive secretions create loud, gurgling inhalations and exhalations, which some people call a ‘death rattle’. Various medicines can help dry up new production of secretions but not what is already there; however, it is thought that this breathing pattern is not painful.

Bladder and bowel changes

As the body’s systems slow down, the person may have trouble emptying the bladder, so a nurse or doctor may need to insert a catheter into the bladder to drain the urine and avoid a blockage. The doctor can also prescribe medicine to help with 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 may happen in the last stages of the dying process, but not always. Special disposable incontinence sheets can be used.

Disorientation and confusion

Carers are often unprepared for the delirium that can occur in people who are dying. This delirium can involve a lower level of consciousness; memory loss; hallucinations (seeing or hearing things that aren’t there) and 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 possibly enter a coma.

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 the 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. However, 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.

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’s a fairly common occurrence.

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.

"We had all surrounded my father-in-law’s bedside, then we started to share the vigil in turns. When there were fewer people around, he passed away." – Judith

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

When 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 Registrar of Births, Deaths and Marriages, 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. The Department of Human Services has a useful checklist of who may need to be notified.

"I had promised Mum that after she died, I would make sure she had her favourite lippy on. I did this at the funeral parlour before the final viewing of her body. She was wearing the dress we had chosen together." – Judith
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. However, you do not need to use a funeral director and 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 make the decisions yourself. This can be difficult and stressful, especially as other family members may have different ideas about what should happen.

You can look for a funeral director by visiting the Australian Funeral Directors Association website or calling them on 1300 888 188, or by visiting Funeral Directors Australia.

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. Probate is the process of having the will validated by the courts. This has to be granted before the executor can release any of the assets.

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 humanservices.gov.au.

Cancer Council has online fact sheets about what happens to the superannuation, income, assets or unpaid debts of someone who has died. For more information see legal and financial assistance.

Grief

Grief is a natural response to losing someone you love. It can be both a physical and emotional response. The feelings you may experience include sadness, numbness, disbelief, loneliness, and even 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 their own time. 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.

For more information, see Understanding Grief or call Cancer Council 13 11 20.

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

Reviewed by: Kerrie Noonan, Clinical Psychologist, Palliative Care, Liverpool Hospital, and Director, The GroundSwell Project, NSW; Gabrielle Asprey, Facilitator, Telephone and Internet Support Groups, Cancer Council NSW; Ann Branford, 13 11 20 Consultant, Cancer Council SA; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Dr Michelle Gold, Director of Palliative Care, Alfred Health, VIC; John Haberecht, Director of Learning and Development, Centre for Palliative Care Research and Education, QLD; Marjorie Hunter, Consumer; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Cecilia van Raders, PalAssist Coordinator, Cancer Council Queensland.
1. SP Halpern, The etiquette of illness: what to say when you can’t find the words, Bloomsbury, New York, 2004.
Updated: 01 Jan, 2017