Facing end of life

You may have many strong emotions. After the initial shock, it’s common to have feelings of fear, denial, anger, despair, helplessness, anxiety and depression. Your emotions might change, sometimes from day to day or even from hour to hour. This is part of the process of making sense of what is happening.

How you respond to these feelings will vary. You may find it hard to think clearly at times. It’s natural to cry or feel completely overwhelmed; you don’t need to put on a brave face. Other times you may feel quiet and reflective — you may avoid people and not want to talk. You might get a burst of energy or anxiety and start making plans.

Some people compare these feelings to waves at the beach. The first waves may knock you off your feet, then your footing becomes a little stronger. There may also be calm periods between these waves. But, at any time, a large wave can suddenly come back and knock you off your feet again. Your emotions may go up and down and may not hit in any particular order. People often say their fears are stronger when it’s quieter at night, and that they don’t always share how they’re feeling.

It may help to talk – You may have your own ways to respond to these emotions. At first you may not feel able to share your feelings. But as you start to process things it may help to talk and find a path forward.

You may decide to talk to a trusted family member or friend. Or you could consider seeking professional help through a palliative care specialist or nurse, general practitioner (GP), counsellor, psychologist, psychiatrist or spiritual adviser. Other people in a similar situation offer a unique perspective, so you may want to consider joining a support group.

There is no easy way to start this conversation, but you may find it helps to practise what you are going to say.

• When you feel ready, decide who to tell and what you want to say. Think of answers to possible questions, but only respond if you feel comfortable. You don’t have to share every detail.
• Choose a quiet time and place.
• People react in different ways. They may be uncomfortable or not know what to say. If they get upset, you may end up comforting them, even though you are the one dying. Denial is a common reaction – they may be convinced there’s a cure or that the doctors are wrong.
• If you’d like help telling people, call Cancer Council 13 11 20. They can help you find the words that feel right for you. Another option is to ask your doctor or nurse to help you share the news.

Do people who are dying need to be told?

Sometimes family members learn cancer is terminal before the person who is dying. They may think the person is too young, old or sick to be told the truth. They may worry about the health or emotional impact if the person knows they are dying. People who are dying usually have a sense of what is happening. Trying to keep it a secret may mean they feel alone when they most need support. Ask the person if they would want to know and follow their wishes. Knowing they are dying gives them time to prepare for death. The health care team can help you have this conversation. They can also suggest ways to explain the situation if the person has dementia, memory problems or issues understanding. 

The first thing some people will want to know is how long they have left to live. Others prefer not to know. It’s a very personal decision.

Knowing can help you prepare for and plan the time you have left. If you want to know, you can ask your doctor. Because everyone is different, a doctor can only ever give you an estimate (prognosis) based on what usually happens to someone in your situation. But they can’t say exactly what will happen to you.

Some doctors may sound very definite about how long you have left to live, but it is only ever an estimate. Other doctors may be hesitant in case they overestimate or underestimate the time. They will probably talk about the time in terms of days, days to weeks, weeks to months, or months to years.

Why it can be good to know – Being told you probably don’t have long to live is difficult. But having a sense of how much time may be left can give you a chance to focus on what you’d like to do.

If you live longer than the estimated time, you may feel lucky to be living beyond that time or you may feel unsettled, like you’re waiting to die.

It may help to talk about how you’re feeling with trusted family or friends, the palliative care team or your doctor. There are counsellors who specialise in facing end of life.

"My doctors haven’t ‘given me a date’ but I’m preparing for the day.  I’m getting my affairs in order and trying to make sense of things.”
Agnes

Palliative care is a person-centred approach to care that can help people with a progressive, life-limiting illness to live as fully and as comfortably as possible. It’s sometimes called supportive care. The main goal is to help you maintain your quality of life by identifying and dealing with your physical, practical, emotional, cultural, social and spiritual needs. Palliative care also offers support to family and carers.

The available palliative care services are usually tailored to your individual needs, and may include:

• relief of pain and other symptoms such as fatigue, nausea, vomiting, and shortness of breath
• resources such as equipment to help manage care at home
• help for families to gather and talk about sensitive or complex issues
• links to other services such as home help and financial or legal support
• support for emotional, cultural, social and spiritual concerns
• referrals to respite care services.

Palliative care may be coordinated by your GP or community nurse. And health professionals, volunteers and carers often work together to deliver your care. If you have more complex needs, your care may be led by a specialist palliative care service. They can also advise other health professionals on ways to manage symptoms.

The advising health professional will suggest the most suitable plan. Palliative care may be provided at home, in a hospital, in a palliative care unit (sometimes called a hospice) or in a residential aged care facility. Palliative care is different in each state and territory – find your local palliative care body at Palliative Care Australia.

Download our booklet ‘Understanding Palliative Care’

Listen to our podcast series ‘The Thing About Advanced Cancer’

Wherever you receive end-of-life care, the various health professionals in your health or palliative care team can offer a range of services to help you. You may not need to see all the people listed below, but understanding the different roles can help you work out what support is available and who to ask about particular issues.

Possible members of your health care team

GP or family doctor – may coordinate your palliative care and work alongside a palliative care team; continues day-to-day health care

community nurse – visits you at home to supervise medical care, assesses your needs for supportive care, and works with your GP as required; may coordinate your palliative care

palliative care specialist, physician or nurse practitioner – treat pain and other symptoms to maximise wellbeing and improve quality of life; usually work in collaboration with your GP

cancer specialist – may be a medical oncologist, surgeon, haematologist, radiation oncologist or cancer nurse practitioner; may refer you to the specialist palliative care team and continue to provide treatment to help manage cancer symptoms

counsellor – helps you manage your emotional response to diagnosis and treatment and may support you to explore your hopes for your life and your relationships

psychologist – provides emotional support and psychological interventions to support coping strategies and symptom management; also works to support family

psychiatrist – specialises in the diagnosis and treatment of mental illness, can prescribe  medicine and uses evidence-based strategies to manage emotional conditions

spiritual care practitioner (pastoral carer, priest, chaplain, minister of religion) – discuss any spiritual matters and help you reflect on your life and search for meaning; if appropriate, may arrange prayer services and other religious rituals

pharmacist – dispenses medicines and gives advice about dosage and side effects

occupational therapist – assists in adapting your living environment; can suggest equipment, such as a hospital bed, walker, wheelchair and bedside commode (toilet chair)

physiotherapist – helps with movement and mobility, and preventing further injury

diversional therapist – offers recreational activities to improve your wellbeing

dietitian – helps with nutrition concerns and recommends changes to diet

speech pathologist – helps with communication and swallowing problems

social worker – links you to support services and helps you with emotional, practical and financial issues

volunteer – can help with home or personal care and transport, and also offer support and companionship

If your doctor has told you that the cancer cannot be cured, you may wonder whether there are any other therapies you could try. Complementary therapies tend to focus on the whole person, not just the cancer. They are used alongside conventional medical treatments, to help people feel better and cope with cancer and its treatment. This is also true for people who are dying with cancer.

Complementary therapies may help you relax and reduce anxiety. They can also be useful in managing symptoms such as pain and nausea. Some people find gentle therapies, such as massage and aromatherapy, helpful. People who find it uncomfortable or painful to be touched may prefer meditation or visualisation.

Talk to your doctor about what complementary therapies are right for you, as some may interact with your cancer treatment, make side effects worse, or affect the cancer treatment’s success.

Alternative therapies are different to complementary therapies – They are used instead of approved medical treatment, and are often promoted as cancer cures. Family, friends or strangers may suggest you try alternative therapies when they hear of your prognosis. Unlike conventional medical treatments, many alternative therapies have not been scientifically tested, so there is no proof they stop cancer growing or spreading. Others have been tested and shown to be harmful. They may be very expensive and could interfere with other medicines.

If you are considering trying an alternative therapy, discuss this with your doctor first. Cancer Council does not recommend the use of alternative therapies as a treatment for cancer.

Download our booklet ‘Understanding Complementary Therapies’

People often talk about wanting to have a “good death”. What dying well means is different for each person, shaped by their attitudes, cultural background, spiritual beliefs and medical treatments.

You may want to think about what dying well means to you. You may feel it is important to:

• know that death is coming and understand what to expect
• have some control over pain relief and other symptoms
• have as much control as you can over where you die and how it happens
• maintain a sense of dignity
• have the opportunity to prepare for death
• reconcile damaged or broken relationships
• have the chance to say goodbye
• resolve regrets
• honour spiritual or religious beliefs
• have a say in end-of-life care and know your wishes are respected
• have your affairs in order and plans in place for friends and family.

There are different ways to die well. Some people see staying at home as the key to dying well, while others feel more supported spending their last days in a hospital or palliative care unit. You don’t have to decide in advance and it is okay to change your mind later. But it is important that family, friends and your health care team understand what matters most to you. Knowing your wishes have been explained clearly, means that you don’t need to have those conversations later on.

Open conversations and planning ahead for your last weeks and days of life can help family members and friends with their grief. They may feel a sense of peace knowing your preferences were respected (e.g. advance care plans, where you want to be cared for or where you prefer to die).

You may start to think about what the last few days or hours of your life will be like. It’s common to have fears about the process of dying. But many people say they worry about the unknowns of dying more than actually fearing death. Having some idea of what to expect can help some people. Not being prepared, or imagining what might happen, can be distressing for you and for your family and friends too.

If you have been with someone when they died, the experience will influence how you feel  about dying. It may have left you reassured, thoughtful, sad, angry or scared. You may have been disturbed by some of the physical changes that happened to the person. Perhaps it appeared that they were having trouble breathing, or they seemed to be in pain or uncomfortable.

Talk about what you can expect – When you feel ready, it may help to talk to a doctor or palliative care staff. They can explain the physical process of dying and reassure you that you will be cared for. You may not be aware of physical changes if you are drowsy or unconscious.

Make a plan with your health care or palliative care team – Ask what support they will provide for symptoms, and discuss it with your family, for reassurance and support. You may also have specific concerns. For example, if they know you are worried about pain, they can talk to you about what options there are and prepare a pain management plan. Knowing you will have relief may help to put your mind at ease.

Control pain and distress – Modern health care means that pain can usually be well controlled. If you have symptoms of pain or distress, you or your family can ask your doctor for help.

"When patients ask me about the dying process, I describe it as the physical and emotional experience of gradually becoming weaker and letting go of their attachment to living.” Nurse

For many, dying is a process that happens gradually. As the physical body slowly shuts down, energy and concentration levels vary and there are good days along with days when you can’t do much at all. Your appetite will reduce, and sips of water or a teaspoon of food here and there may be enough.

As death gets closer, it’s common to have little interest in talking and the outside world. You may find your attention withdraws from family and friends, and you may sleep more and more throughout the day and night.

Near the end, some people may need pain relief or other medicine to keep them comfortable,  which may have a sedative effect. Many people slip into unconsciousness before dying, although some remain alert almost until the end. Others may have periods of being awake, and then slip back into unconsciousness.

No-one knows how a dying person experiences the moment of death. Whatever happens, in many cultures it is thought to be a peaceful moment. There is often a couple of deep breaths or sighs before the final breath, when breathing stops.

If you are feeling depressed or a sense of helplessness, or if you have pain, breathlessness or other symptoms that are not well controlled, you may become distressed.

Pain and depression can almost always be treated, and help is generally available for other symptoms. It is important that you talk to your doctor or nurse about any physical or  emotional symptoms that are causing you pain or distress, and find ways to make your final days more comfortable.

Sometimes a person with cancer may become so distressed that they wish that death would come more quickly. This might happen if they are feeling particularly ill, scared, or perhaps worried about the strain that they are putting on others.

If this is how you feel, discuss your concerns with a doctor, nurse, counsellor or social worker.

If you urgently need somebody to talk to because you are very distressed or thinking about ending your life, call Lifeline on 13 11 14 for free, confidential phone counselling at any time.

"It’s tough for anyone to confront their own mortality, but it’s unavoidable when you get a terminal illness. Suddenly I had to start thinking about practical things like getting a will and a power of attorney. Something else that was tough to talk to my wife about was the funeral plans, but I’m glad I got it out of the way because it’s one less thing to worry about.” Ian

You may feel that the hardest part about dying is the effect it has on your family and friends.  Like you, they may feel shocked and overwhelmed when they find out cancer is at the end stage. They may:

• offer to help in any way they can
• express how much they care, be emotional, or want to spend more time with you or call you  more often
• be overprotective, not wanting to leave you alone
• refuse to believe the prognosis, saying things like “I’m sure you’ll get better” or “You’ll beat  this”, or suggest various forms of treatment or alternative therapies
• tell the story of a friend or celebrity who experienced a miraculous recovery from something everyone had deemed hopeless and fatal
• pull away and withdraw from your life
• start to regard you as already gone.

Some reactions can feel surprising, frustrating or even hurtful. But family and friends also need time to adjust to the news and come to terms with how they’re feeling.

Partners

The emotional support provided by partners can be vital. But partners can feel just as distressed and depressed as the person who is dying. Be open and honest about the roles you expect each other to play. Do you want a partner to be hands on with your care, or prefer that a health professional looks after you, especially in the end stages of dying? Does your partner want to care for you? Listening to what each other wants, or feels they can take on, may help you both cope better.

If you live alone

Some people may live alone or have little or no support from family or friends. They may be  living a long distance from anyone who would usually offer both practical and emotional support. If you live alone, you could seek assistance from:

• your GP
• the palliative care team
• the local community health service
• the local council
• a church or other religious group
• practical support services
• Cancer Council 13 11 20.

Community palliative care services can help you stay at home for as long as possible. But at some point, you may need 24-hour care. This is usually available in a palliative care unit (hospice), hospital or residential aged care facility.

If your preference is to die at home, you will need support from family and friends, and ongoing visits by your GP and other health professionals. You may wish to consider using private nursing services, which can be expensive.

How to tell children

If you have children or grandchildren, telling them that you are dying will be difficult. There is no easy way to approach this conversation, but it is important to let them know what is happening.

Like adults, children of all ages need time to prepare for the death of someone close to them. It’s natural to want to protect children, but they will often sense that something has changed. Not sharing the prognosis can add to their anxiety – and yours.

Talking to children about death in an open way may help them to feel more comfortable spending time with someone who is dying. For older children, the chance to make amends for mistakes may be important.

How you tell children or grandchildren will depend on their age, but these suggestions may help:

• It may be easier to have your partner or a support person with you when you have the initial discussion.
• Be honest with children and explain the situation using straightforward words, such as “dying” and “death”. Avoid terms such as “pass away” or “going to sleep”, which can be confusing or alarming for them.
• Keep your explanations as simple as possible, and be guided by their questions so you don’t offer more information than they may want or can handle.
• You may ask children what they know about death and what they think it means. This can help you to clear up any misconceptions about death.
• Depending on their age, children may benefit from seeing a counsellor or play therapist.

Download our booklet ‘Talking to Kids About Cancer’

Finding a way to cope with knowing you are dying can depend on many factors, including your age, whether or not you have children, your relationships with a partner or family members, and your cultural or spiritual beliefs. It may also depend on how your family and friends cope with the news.

Everyone will find their own way to deal with the knowledge that they are dying, and at their own pace. There is no right or wrong way.

For some people, learning more about the physical process of dying can make it easier to cope. Others find it helps not to think too far ahead, but to focus on a month, a week or even a day at a time.

Finding hope

When you’ve been told that you’re dying with cancer, you may find it hard to feel hopeful. While it may no longer be realistic to hope for a cure, you can find hope in other things, such as sharing some special times with those you love.

Studies of people dying with cancer show that people’s hope can be maintained when their health professionals:

• involve them in decision-making, especially about palliative treatment options and where they would like to die
• reassure them that any pain and other symptoms will be well controlled.

Finding a balance between knowing that you are dying and still trying to live as fully as possible is sometimes called “living with dying”. This may mean focusing more on the present. You may find that some days it’s easier to achieve this than others.

Maintaining a sense of control

When you’re approaching the end of life, you may feel like you’ve lost control. One way to feel more in control is to make decisions about your current and future health care and medical treatment, and to record your preferences in advance care paperwork.

Loss and grief

Other losses and changes happen throughout a terminal illness – loss of work, loss of social roles, loss of friendships, loss of connection to community, and loss of independence. You will probably find it helpful to spend time grieving for these losses.

You might also experience preparatory grief, which means reacting to the impending loss of your life. You may grieve for events that you won’t be around for, such as marriages, graduations and new babies in the family. If you don’t have a partner or children, you may mourn the lost opportunity to have these relationships or experiences. You can also grieve for small pleasures such as not being able to have a morning cup of coffee or go for a walk in the park.

Gradually, you may feel less able to do things or you may lose interest in activities you previously enjoyed. For many people, this is a natural part of coming to terms with death. It may make you feel sad and very low, but you may also move towards a sense of peace.

"People saying ‘You’ll get well’ makes me really cross. I know I won’t get well. I want to say, ‘I am going to die and don’t you dare deny me this business of dying’." Catherine

Spirituality is an individual concept. For some people, it means being part of established religious beliefs and practices, such as Christianity, Judaism, Islam, Buddhism, or Indigenous belief systems. For others, spirituality is expressed as a personal philosophy.

For many people at the end of life, spirituality is a source of comfort and strength. Others find their beliefs are challenged by their situation and no longer find comfort in their spirituality.

In some cases, people may embrace a belief system that they have not been interested in before or had abandoned many years ago. Although many people do look for meaning at the end of their life, others are not interested in spirituality.

Talk about what you need – It may help to discuss your thoughts and feelings with a spiritual care practitioner (pastoral carer or chaplain). A spiritual care practitioner is part of the palliative care team and has the expertise to discuss spiritual issues, whatever your beliefs. You may wish to discuss the meaning of life or your beliefs about death. A spiritual care practitioner can also provide companionship.

Following spiritual practices – Some people find comfort in prayer or meditation, and gain support from knowing that other people are praying for them or sending positive thoughts their way. Many religions have specific practices for when people are dying.

If you want to follow certain rites in a hospital or palliative care unit, it’s best to discuss this with the staff in advance. They will be able to help you find the space and time to do this, and your customs can often become part of your palliative care plan.

Most people with a terminal illness feel extreme or constant tiredness (fatigue). Try to pace yourself and save your energy for the activities that are most important to you. An occupational therapist may be able to help with equipment at home to reduce the energy needed for daily activities such as showering.

Fatigue may affect your ability to think clearly and make decisions. You will also probably be told when you need to stop driving and doing other activities. This can be frustrating, particularly if you are trying to put your affairs in order. You may want to deal with any demanding or practical concerns at a time of day when you have more energy.

While some people sleep a lot at the end of life, others find it hard to sleep, which can make fatigue worse. If you’re having trouble sleeping, it may be because of anxiety, pain, a side effect of a medicine you are taking or a change in your sleep-wake cycle. Let your health care or palliative care team know. They may be able to adjust your medicines or offer another medicine to help you sleep. They may suggest you try complementary therapies such as meditation and relaxation. Improving the quality of your sleep will improve the quality of your waking hours.

Download our fact sheet ‘Fatigue and Cancer’

Many people with cancer worry about spending their final days in pain, but not everyone has pain. For some, pain comes and goes. The health professionals caring for you won’t let you suffer with unrelieved pain, and will help you to manage it as much as possible. Palliative care specialists are especially experienced in managing pain. It’s important not to just “put up with” pain and assume it’s normal. Controlling pain lets you continue activities for longer and offers a better quality of life.

Finding the right pain relief – Pain is managed depending on the type and intensity, and it  may take time to find what works best for you. Complementary therapies, such as massage or meditation, may be used alongside prescribed treatments. A combination of pain medicines, some of which work in other conditions, is often used. You may be offered:

• mild pain medicine, such as paracetamol and non-steroidal anti-inflammatory drugs (NSAIDs)
• strong pain medicine such as morphine, oxycodone, fentanyl and hydromorphone.

You may also be given other types of medicine along with the main pain medicine. These could include:

• antidepressant and anticonvulsant medicines for nerve pain
• local anaesthetics for severe nerve pain
• anti-anxiety medicines for muscle spasms
• a nerve block or epidural (for pain that is difficult to manage).

Sometimes pain medicine can be given as a continuous infusion, where a small cannula is inserted under the skin and the medicine delivered slowly by a pump. Most options can be organised to have at home.

Download our booklet ‘Understanding Cancer Pain’

Listen to our podcast episodes on pain

Many people find they do not feel like eating as they near the end of life. This loss of appetite  may be because of the cancer itself or symptoms such as pain, nausea, constipation or breathlessness, or because the body’s energy needs have slowed down and it’s no longer necessary to eat as much.

Eat what you want when you want it – Don’t force yourself to eat. Eating more than you feel like may only make you uncomfortable, and can cause vomiting and stomach pain. Instead, try having small meals or eating little bits of your favourite foods more frequently. Soft foods can be easier to eat.

You could also try food-type nutritional supplements. Ask your doctor, nurse or dietitian to suggest something suitable; some are available as ready-made drinks at pharmacies.

It’s common for family and friends to want to encourage you to eat, as preparing food for you is often how they show they care. They may worry that not eating will make you feel worse. You may need to let them know that you don’t feel like eating, and suggest other ways that they can show their love, such as sitting with you.

As the disease progresses, the body reaches a point where it can no longer absorb or get nutrients from food. You may not be able to eat, and clear fluids such as water or weak tea may be all you can handle.

There will come a time when even water isn’t wanted, and family or friends can help keep your mouth moist. 

Download our booklet ‘Nutrition for People Living with Cancer’

You may feel sick or have trouble keeping food down, either because of the cancer or because of side effects from medicines you’re taking. This can be distressing but your health care team can help manage nausea and vomiting with anti-nausea medicines (called antiemetics). These can be taken as tablets or, if swallowing is difficult, as wafers that dissolve on the tongue, as injections under the skin, or as suppositories, which are inserted into the bottom.

"I hated certain smells and did all I could to avoid them. My mouth felt very dry, which made food  unappetising. Adding extra sauce helped.” Helen

Breathlessness (dyspnoea) is common at the end of life. Breathing may become uneven and noisy in the final days or hours of life.

Your health care or palliative care team will assess the cause of the breathlessness and manage it with medicine or other practical measures. These may include sitting near an open window, having a fan in the room or doing relaxation exercises. Having a comfortable bed, leaning on a pillow while sitting, or changing your position when you’re in bed can also help.

Breathlessness can be distressing, and feeling anxious about it can make it worse. Talk to your doctor about medicines that can ease your anxiety or try relaxation techniques like mindfulness and meditation.

Listen to our podcast episode ‘Managing Breathlessness when Cancer Is Advanced’

As you approach the final days or hours of life, the body’s systems start shutting down. This may affect your breathing, bladder and bowel function, and behaviour. Any changes can be managed to help you feel more comfortable.

It is natural to feel concerned about others witnessing some of these physical changes. Your medical team understand this and can help explain what is happening to your family and friends.

Some people find it reassuring to know more about what might happen in the last stages, when they may no longer be fully conscious, but others find it distressing. 

Donating organs and tissue

Organ and tissue donation is possible for some people with cancer, depending on the cancer type and spread. You will need to organise paperwork for this ahead of time (usually 6 weeks before death). Ultimately, whether your organs or tissue can be used will be decided by a doctor after the death. You need to be in a hospital to donate organs but this isn’t necessary for tissue. To record your wish to donate tissue or organs, visit DonateLife. Share your decision with family as they will be asked to give consent after your death.

If asked, many people say they want to die at home. This may be because they want to be around familiar surroundings and people.

While this option is not for everyone, if you do want to be at home, support is available. This may vary from a few hours a week to a few hours a day to 24-hour care (although 24-hour care is very expensive). Your GP, nurse, palliative care specialist or palliative care nurse practitioner can suggest services to manage symptoms such as pain or breathlessness. They can also teach carers how to assist with day-to-day activities such as bathing and eating. Even if you live alone, with planning, you can stay as long as possible in your own home.

Some carers may find having you nearby easier. It may mean that they don’t have to travel, or fit in with a hospital or palliative care routine. Caring for someone who is dying at home can be a meaningful experience, but it can also be challenging.

Sometimes people go into a palliative care unit or hospital to have symptoms managed or to give their carers a break (respite), and then return home. Or they may decide it’s not possible to stay at home, even with home help, and that they would be more comfortable in a palliative care unit or hospital.

You can decide at any stage to change your mind about staying at home and explore other options. If you are planning to stay at home until the end, talk to your GP or palliative care team about ways of dealing with unexpected medical events.

Key points about dying at home

• Being cared for in a familiar environment, surrounded by people you know, may help your emotional wellbeing.
• You can spend more time with family and friends, as there are no visiting hours.
• Depending on your situation and preferences, your family and friends can be at your side at all times.
• Being at home may offer more flexibility to maximise your quality of life.
• It may feel more natural and less clinical, while still giving you access to expert medical advice and symptom control.
• It allows you a sense of control over the last part of your life.
• Your family and friends may find comfort in providing most of your care.
• A range of services can give you and your carers help and support. Keep a list of phone numbers handy for when you need advice and support.
• After death, family and friends can grieve at their own pace and decide when to call the ambulance or funeral home.

A palliative care unit is a specialised palliative care facility. It is sometimes called a hospice, and may be a standalone facility or rooms within a hospital.

The focus at a palliative care unit is on caring for people with a life-limiting illness and maintaining quality of life. They are run by health professionals who specialise in providing physical and emotional comfort to the patient, and supporting family before and after death.

Palliative care units and hospices are different from most hospital wards. They are usually quieter and calmer, and may have a more homely environment. Many people value the relaxed surroundings, as well as the skilled staff and expert symptom management.

These facilities often provide short-term respite care as well as longer-term care for the dying person. Sometimes you can go back and forth between a palliative care unit and another setting during your final weeks. Many facilities now have a maximum length of stay, so you may want to check this with them ahead of time.

You may choose this option if you want to relieve your family from caring for you while you are dying, although they can still be involved. This can include feeding, bathing or simply being present.

Some people and their family and friends are unsure of when to contact a palliative care unit. They may wait to call until the final days, possibly missing out on the support that a palliative care team has to offer. Some facilities have waiting lists, so talk to your doctor or palliative care team early about how you should make arrangements and when would be an appropriate time to make the first contact.

Key points about a palliative care unit

• Palliative care units offer a welcoming and comfortable physical environment.
• Health professionals can provide 24-hour care, including expert pain and symptom control.
• The focus is on quality, not length, of life.
• You can focus on being with family and friends rather than on any care needs.
• It may give direct access to a team of professionals and volunteers trained to meet the needs of the dying person and their carers.
• Carers can leave at the end of the day and get some rest.
• Some families prefer not to live in a house where someone has died, although others find this a comfort.

Even when death is expected, more people approaching the end of life die in hospital than anywhere else. While some people and their families feel more secure being near health professionals, others feel anxious about hospital care, believing it will be too impersonal.

If you have spent a lot of time in hospital during your illness, you may want to stay on the same ward where you are familiar with staff and surroundings, they know you and they understand your specific needs. You’ll need to check if this is possible – sometimes people are moved to a different ward as their medical needs change. To help create a more homely environment, ask if you, your carers, family or friends can bring in familiar items from home, such as a favourite blanket or photos.

Decisions about your care may be made without your input. Hospitals sometimes provide medical interventions, such as resuscitation and intravenous drips, that may not be what you want in the final weeks or days of life. Your health care team should work with you to make sure your care plan matches your preferences. If you are concerned, let the hospital staff know what interventions you are comfortable receiving and what you’re not happy to have happen.

You can arrange to have your preferences and wishes recorded in an advance care directive  before an emergency occurs. It is a good idea to also keep a copy at home so your carers and your family and friends know your wishes too.

The different aspects of end-of-life care in a hospital can be managed with communication and advance care planning. Preparing an advance care directive (known by different names depending on where you live) can help give you control over your medical treatment and care.

Key points about a hospital

• Experienced medical and nursing staff are available at short notice to manage your physical symptoms (e.g. pain, breathlessness, fatigue, delirium) and your emotional needs (e.g. anxiety, agitation).
• You must be in a hospital to donate your organs.
• Carers can leave at the end of the day and go home to get some rest. But some carers may find leaving you to go home difficult.
• It provides 24-hour care.
• Some families prefer not to live in a house where someone has died, although others find this a comfort.

A residential aged care facility (formerly called a nursing home) is a place where people stay who need continual care and help with daily living. These facilities cater for people with a range of chronic conditions, and nurses and aged care workers can provide continuous care. Some aged care facilities also provide respite and end-of-life care.

Some people fear that dying in residential aged care will be unpleasant and perhaps impersonal. But dying in an aged care facility can be comforting, particularly if it has been your home for a period of time and you are familiar with the people there. Staff will try to make you comfortable and give you and your family privacy.

If you want to die in a residential aged care facility, have an advance care directive in place. Talk to your care providers about avoiding an unnecessary transfer to hospital at the end of life.

Key points about a residential aged care facility

• It may provide a less clinical environment than some hospitals.
• Experienced staff are on hand to help manage symptoms and needs.
• It may be located close to carers, family and friends.
• May provide 24-hour care.
• Family and friends can go home to get some rest – although some carers may find this difficult.
• Some families prefer not to live in a house where someone has died, although others find this a comfort.

These questions can help you to work out the various things you need to consider or organise. Write a to-do list or use the information below as a checklist.

Financial/legal matters

• Have you made arrangements for your financial affairs?
• Do you want someone to make legal or financial decisions for you if you are not able to?
• Have you appointed a power of attorney?
• Does someone know where important papers or valuables are stored in the home or elsewhere?
• Do you have a valid will?
• If you have life insurance, is the beneficiary information up to date?
• If you have superannuation, have you nominated a binding beneficiary? This person must be your dependant. If it is a “lapsing” nomination, you must confirm it in writing every 3 years, so check when you did this last.

Relationships

• Who would you like to see before you become too unwell? Are there people you want to see or speak to? Any family or friends you want to connect with?
• If you’d like to prepare letters or video messages for family or friends, have you done so?
• Who would you like to have around you as you get closer to death? Do they know? Are there people you don’t want around?
• Are there unresolved issues that you would like to sort out with particular people? Do you need help or mediation to talk to estranged family or friends?
• Have you left the instructions and passwords for your social media accounts somewhere or given them to someone to safeguard?

Medical care

• Are there certain treatments that you don’t want to have?
• Are there outcomes of specific medical situations (e.g. life support) that you would find unacceptable?
• Have you discussed your wishes for end-of-life care with your family, carers and health professionals?
• Have you considered who can make decisions about your care if you’re not able to make them yourself?
• Have you recorded your wishes for future medical care in an advance care directive?
• Have you appointed a substitute decision-maker?

Spiritual issues

• Are there any cultural, spiritual or religious practices that you would like carried out before or after your death?
• Who do you need to ask to make sure that what you want will happen?
• Do you want a minister, priest, rabbi, imam or other spiritual practitioner present at the end?
• Do you want to be buried or cremated? Where do you want to be buried?
• Do you have a burial plot? Would you like to have your ashes scattered in a specific place?
• What are your preferences for a funeral or memorial service?
• Have you shared your wishes with family and friends?

Having all of your paperwork up to date and in one place will make it easier if a family member has to help you with financial and legal matters. Important documents might include:

• social media logins and passwords
• birth, marriage/divorce certificates
• bank and credit card details and passwords
• investment information (e.g. shares)
• Centrelink and Medicare details
• superannuation and insurance
• house title/lease
• loan details (e.g. house, car)
• passport
• will
• documents appointing a substitute decision-maker or power of attorney
• advance care directive
• funeral information.

It’s a good idea to check or update who you have nominated as beneficiaries on your superannuation and life insurance policies. Let someone close to you know who you have nominated and how to contact your lawyer.

Managing social media

If you use social media, think about what happens to your accounts after your death (your digital legacy). Each social media platform has different rules for deactivating accounts, and some allow your account to be turned into a memorial page.

Prepare a list of your social media accounts, passwords and instructions and leave it with
someone you trust, so they can manage your ongoing digital presence in the way you want.

Facebook lets you nominate a legacy contact, who can look after your account if it is memorialised. They may need to provide proof of death documentation to delete or deactivate your account.

It is important to plan for your future medical care, and to discuss your preferences and values with your family, friends and health care team. This process is called advance care planning.

Although advance care planning is often done when people are told their condition is terminal, or as they approach the end of life, it can be started at any time, whether you are healthy or ill.

Advance care planning can involve: talking and making decisions about what is important to you for quality of life; discussing what treatments you may or may not want, including where you want to receive care (e.g. in hospital or at home if possible); appointing a substitute decision-maker; and preparing legal documents, including an advance care directive.

It is hard to know what medical care you’re going to want until the situation arises. Many people find their attitudes and preferences for medical care change as they get closer to death, and they may need to revisit their decision regularly. To help you consider what care you’d like, think about what is important to you and talk with your health professionals. This may take several discussions.

For some people, quality of life is more important than length, but for others, it may be the reverse.  You may want to find a balance between what medical care can achieve and the side effects of treatments.

Discussing these issues with others will help them understand your goals, values and beliefs, and help to ensure that your preferences are respected should you lose the capacity to make your own decisions. Without these conversations, distressed family members may have disagreements about whether to keep you alive using any means possible or to focus on your quality of life.

You might like to use one of Palliative Care Australia’s discussion starters or visit the website of Advance Care Planning Australia.

Advance care documents can be as simple or as detailed as you like. As part of your advance care planning, you may appoint a substitute decision-maker and record your wishes in an advance care directive.

For more information about advance care planning, visit Advance Care Planning Australia or call them on 1300 208 582.

If you have not already done so, now is the time to think about what legal documents you need, such as making a will, appointing a substitute decision-maker and preparing an advance care directive.

For these documents to be legally binding, you need to be an adult and have decision-making capacity at the time of making them, so complete them early if possible. In general, having capacity means you are able to understand the choices available and the consequences of your decisions, and that you can communicate these choices. Each state and territory has different laws about what having capacity means (officially), and also about making an advance care directive and about appointing a substitute decision-maker. For more information, talk to your doctor or a lawyer.

Making a will

A will is a legal document that sets out what you want to happen to your assets after you die. These assets are called your estate, and may include your house, land, car, money, jewellery, clothes, furniture or investments. A will can record your wishes and guardianship plans for any children.

Making a will is not difficult but it needs to be prepared and written in the right way to be legally valid. A will should be reviewed and updated as circumstances change. It is best to ask a lawyer to advise you, or contact the Public Trustee in your state or territory. Cancer Council may be able to connect you with a lawyer. For more information, call 13 11 20.

If you die without a will, you are said to die intestate. Your assets are distributed to family according to a formula provided by law. Any will can be challenged in court, but having a valid will usually means your assets go to who you want, avoids costs, and simplifies things for  family.

Appointing a substitute decision-maker

You can organise for someone to make legal, financial and/or medical decisions on your behalf if you become too unwell (lose capacity) to make these decisions yourself. This person is called a substitute decision-maker. Your substitute decision-maker should be someone you trust and who understands your values and what you want for any future care. They do not necessarily have to be a family member. Depending on your state or territory, the documents used to appoint a substitute decision-maker may be called a different name.

What happens if you don’t have a substitute decision-maker – If you cannot make decisions for yourself (lose capacity), and you do not have an advance care directive or an appointed substitute decision maker, the law in each state and territory outlines who may make medical treatment decisions for you. This is usually someone close to you, such as your spouse or partner, family member or close friend. For more information about who may make treatment decisions for you, visit End of Life Law in Australia.

Making an advance care directive

You can record your wishes for your future medical care in an advance care directive – what this is called varies depending on your state or territory. This will only come into effect if you can’t make decisions for yourself. It provides a record for doctors, family and carers to consider, and may be legally binding in some states and territories. Depending on where you live, the advance care directive may be called an advance health directive, advance personal plan or similar.

Keep a copy of your advance care directive for yourself and share copies with your GP, oncologist, substitute decision-maker, family member or friend. Ask your doctor or the hospital to place your directive on your medical record. You can also save a digital version online at My Health Record, a government website that stores your key health information. You can update your advance care directive when your preferences change.

As each state and territory has different laws about advance care directives, talk to a lawyer for specific advice about your situation. For more information, essential documents or help with advance care planning, visit Advance Care Planning Australia or call them on 1300 208 582.

Voluntary assisted dying

Voluntary assisted dying (VAD) is when a person with an incurable condition or illness chooses to end their life with the assistance of a doctor or health practitioner – using specially prescribed medicines from a doctor. “Voluntary” means that it is the choice of the unwell person to end their life. VAD is not part of palliative care.

VAD is only available to people who meet all the strict conditions and follow certain steps as required by the laws in their state or territory. It is essential to check the latest updates and know the law and rules around this choice in the state or territory where you live.

At the time of the last review of this information (July 2023), laws around VAD have been passed in all 6 states. However, they still may not have come into effect in your state or territory, meaning that it still may not be legal to participate in VAD. The laws in the Northern Territory and ACT were under review at the time this information was last reviewed (July 2023). For information and updates on VAD for your state or territory, visit Queensland University of Technology’s End of Life Law in Australia website.

Some people may find the idea of planning their own funeral too sad or morbid. They may think that funerals are for the family, and should be organised by them. Others may feel comforted knowing that the funeral will be carried out according to their wishes and that family or friends won’t have to guess what they would have wanted. Some people may prefer to have a memorial service or a living wake, while others don’t want any kind of funeral at all, or are concerned about the cost.

It’s a good idea to discuss the type of funeral you’d like to have with family and friends ahead of time. Even if you aren’t concerned about it, a funeral or memorial service can be an important part of the grieving process and provide comfort for family and friends.

You may find satisfaction in leaving your mark on the occasion, and in involving your family in the planning. If you’d like to make preparations but you can’t do the work, or prefer not to, talk to a spiritual care practitioner, funeral celebrant or end-of-life doula for assistance, as well as any family or friends. Alternatively, you might simply discuss your preferences with your family and executor. Or you may record your wishes in writing or lodge a plan with a funeral director of your choice.

There are few rules with funeral plans. You can plan your funeral to meet any cultural or spiritual preferences. You may just have a few simple requests for music you want played or poems you’d like read, or you may have detailed plans for the full service. You can also choose to have a non-traditional event such as a celebration of life.

If you change your mind, you can alter these arrangements at any time. To prearrange or prepay a funeral, talk to a funeral director. You can download a pre-planning information form from the Australian Funeral Directors Association or National Funeral Directors Association of Australia. It’s important to let your family know of any arrangements like this that you have made and to give copies of a prepaid funeral contract to your family or file it with your will.

Knowing you will die offers you a special opportunity – the chance to say goodbye to those you love and care about. It’s sad and difficult, but some people say they feel lucky that they’ve had the time to prepare.

Saying goodbye is a personal experience, so do what is right for you. When you feel you are ready, consider how you will say goodbye. You might set aside a time to talk to each person individually. Or, if you are physically up to it, you might have a gathering for friends and family.

If you have children or grandchildren, you could ask that any letter or recording is to be given to them at a specific age or time in their life. You (or your friends) could also create a slideshow or scrapbook of special photos. A memory box can be another special keepsake for your family. You may find it hard to think about a time when you won’t be there for your children, but leaving behind mementos can be helpful and comforting for them. If your children are very young, they’ll understand your words and sentiments when they’re older.

If you have a pet, you may want to consider who will care for them. A family member or friend may want to look after them, and you could consider leaving money in your will to cover this care. You could also look on local online pet message boards or talk to your local RSPCA to see whether they have a program for rehoming pets.

Knowing you are going to die gives you a chance to reflect on your life and all that you have  done, and to think about your legacy. You could talk with family and friends about the special times you have shared together.

You might like to share some of your belongings or a small keepsake with family members and friends as a permanent reminder. You could also write letters or stories of your life, record special memories, make a short film or video featuring you with your friends, review or arrange photo albums, document your family’s history or family tree, make a playlist of favourite songs, gather treasured recipes into a cookbook, or create artwork or music. There are also paid and voluntary services that can help you make a record of your life.

Making a memory box

A memory box is a collection of keepsakes for your family. You can put in anything that is meaningful to you, but some suggestions include a:

• treasured photo
• video of a family event
• special birthday card
• favourite cap, tie, scarf or other item of clothing
• list of shared memories
• lock of hair
• family recipe
• pressed flower from your garden
• bottle of your favourite perfume or aftershave.

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 personal care and practical support themselves and just need some guidance from a health professional, or occasional home help or respite. 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 that they receive specialist care in a hospital, palliative care unit or in a residential facility. Even then, you can still provide some personal care by helping with feeding, mouth care, 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. Many people want to help, but might not know how. Let people know what the sick person may need, and what help you need as a carer. Perhaps one person can coordinate care or use an app such as Gather My Crew.

Prepare meals – Preparing meals can become challenging. If possible, ask the person what they want to eat. Offer simple, small meals and mash food so it’s easier to swallow. A dietitian can give advice on preparing food. If friends offer to cook, let them know what meals are suitable. As the disease progresses, the person may lose their appetite, taste and may not be able to eat or drink. Don’t force them to eat or drink. Chips of ice can moisten the mouth.

Help with bathing and toileting – You may have to give the person a sponge bath, wash their hair over a basin, help them on and off the toilet or commode, help them use a urine bottle or bedpan, and help them to wipe themselves. An occupational therapist can help choose suitable equipment and teach you how to lift safely and correctly. You may need someone to physically help you with this.

Sort out the paperwork – Getting their affairs in order can give people closure to their life.  Help gather important documents, discuss the person’s choices for their future health care (e.g. substitute decision maker), and arrange legal advice if needed.

Record social media details – People often have more of a social media presence than they realise. Help the person list their social media accounts, passwords and what they want to have happen to them after they die.

Do odd jobs and run errands – Friends may be able to 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. Some volunteer organisations may be able to help with suitable practical jobs too.

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. Talk to the palliative care team about borrowing a pressure relieving mattress or hospital style bed.  Many people make space in the living room for a bed, particularly if bedrooms are located upstairs.

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

The diagnosis of a terminal illness may be a crisis for family and friends. How everyone responds can 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. People who are dying often say they want to talk about what is happening but they are afraid the topic will upset their carer, family member or friend. So while starting the conversation can feel difficult, 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; look through old photo albums and talk about the pictures; sing a song; share some special memory or experiences you’ve had together; or tell them that you love them and that family and friends send their love.

When someone is ill for some time, it’s common for their family and friends to begin to grieve their death before it happens. This is known as anticipatory grief. You might 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 how you’re feeling, or to call Cancer Council 13 11 20.

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 they’d like a clergy member or other spiritual carer at the bedside, and what rituals or ceremonies should be performed.

Contact list – Have information on how to contact the doctor, nurse or support services easy for everyone to find.

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 the plan.

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 memorial they want.

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.

Saying goodbye

A life-limiting illness offers you time to say goodbye. You can encourage the person who is  dying to discuss their feelings, and you can talk about 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 is understandable that you might feel confused – what you feel might be so complex that it is hard to find the right words, or any words at all. It is natural to worry about saying the wrong thing. You may want to offer something that will help them cope but don’t know what that is. It is usually better to say something than to pretend nothing is wrong.

Most times, someone who is dying will find comfort in you being there, and 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.

Ways to talk with someone who is dying

• 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 etc.
• 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, “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.

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

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

Signs that someone is dying

Some family and friends find that having information and knowing about the physical process  of dying can help to ease their fear and anxiety when it happens. Other people prefer to take one day at a time and ask health professionals for explanations if and when the need arises.

If you would like to know what to expect when someone dies, this section describes some of the common physical changes that may occur in the last days and hours of life. These physical changes don’t happen 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. They may still be conscious and able to hear, but have their eyes closed and not be moving.

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. They may begin to resist or refuse food or drink. Giving the person fluids at this time does not help them, but you may moisten their mouth for comfort with a sliver of ice, small sips of water and regular mouth care.

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 alertness.

Breathing changes – Breathing may become irregular, laboured, noisy and rattly. You may hear an irregular breathing pattern known as Cheyne-Stokes. This is a loud, deep breath followed by a long pause (which may last from 5 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 person eats and drinks less, they will produce less urine  and faeces. 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. Medicines may be prescribed for constipation, a common side effect of some pain medicines. Loss of bladder and bowel control sometimes happens in the last stages of the dying process, but does not always happen. Speak with your health or palliative care team to help you manage any incontinence.

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 and people that aren’t actually there); delusions (false beliefs or ideas); 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. The person may drift in and out of consciousness and eventually become unresponsive.

Speak to the palliative care team if you notice any of these changes, so they can advise you on managing delirium.

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.

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

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. You can prevent this with regular mouth care, which your health care or palliative care team can teach you.

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

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 or health 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 and keep the mouth moist with ice cubes or swabs. Use a vaporiser in the room to help with breathing. Put incontinence sheets or pads under the bedsheets. Keep the person warm with a blanket and use cushions so they are comfortable. Help them change positions often. 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 them 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.

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. 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. Taking breaks and sharing the time with others can help.

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 to keep a bedside vigil

• You can simply sit with the person and perhaps hold their hand.
• Hearing is said to be the last sense to go, so you may want to talk to the person or even have a conversation among the people in the room so that the person knows they are not alone.
• You could read aloud, sing or hum or play some of their favourite music.
• Plan to take breaks or organise shifts with other family and friends.
• Decide who you think is appropriate to have in the room at this stage and let other visitors know if you want just close family.
• Have food and drinks on hand and some cushions and blankets if you are at a hospital or palliative care unit where it may get cold.

"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

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 or at a time when there are few people around.

It can be very upsetting 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 how they wanted it to be.

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. You can ask a palliative care team member or nurse to talk you through it.

The person’s breathing will stop, 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 and becomes pale.

Many carers say it was a profoundly moving experience and a privilege to be with someone at the moment of death. 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 next 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. You may want to call close family or friends who may have wanted to see the person or say goodbye. 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. There is no hurry or need to call or let someone know right away.

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 state or territory; the registry will then organise 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. A useful checklist of who may need to be notified can be found on the Services Australia website.

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 service. 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. Even if the person has prepaid their funeral plan, they may also have left 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 may choose not to have a funeral or to have an event such as a celebration of life.

"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

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.
• Plant a special tree or flower.
• Frame a photo or a cherished note or other memento.
• Make a donation or volunteer at their chosen charity or community group.
• Create an online memorial page with photos and stories.
• Organise to have a memorial plaque put in a favourite spot.
• Create an annual award or scholarship in their name.
• Talk about the person with others who knew them.

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. Centrelink 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.

Download our legal and financial fact sheets about what happens to superannuation, income, assets or unpaid debts when someone dies

Grief

The response you have to losing someone is called grief. This loss can impact many areas of your life – from the physical, mental and emotional, to the social and spiritual.

You may feel grief for people you loved very much, but you may also feel grief if you lose  someone you had a complicated relationship with, or hadn’t seen in a long time.

You may feel sad, numb, disbelief, lonely, guilty, angry, relieved or accepting. It’s common to have trouble sleeping, cry a lot or have difficulty crying, lose your appetite, or not be interested in your usual activities. You may feel tired or lack energy, be forgetful or not able to concentrate, or not want to go out and do things you usually would.

Some people have a big emotional reaction right away, but other people may “get on with life” for a while before feelings of grief happen. 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 stages or timeline. 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. At any stage of grief, you can call Cancer Council on 13 11 20 to talk about how you are feeling or connect with further support. The palliative care team may also offer support.

Download our booklet ‘Understanding Grief’