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  • Facing end of life

    Last reviewed February 2014

    Contents

    Coping with the news
    Emotional concerns
    Common questions
    Spiritual concerns
    Managing symptoms
    Where to die
    Practical concerns
    Services and information
    Information reviewed by

    Coping with the news

    Learning you may not have long to live is shocking news. Even if you are aware the cancer is progressing hearing you are dying is likely to be devastating.

    We all know death is a natural part of life and that it will happen to us all one day. However most of us hope we won’t die anytime soon. Realising death is close can be frightening and hard to believe. However for some people it may be a relief.

    You may have questions straight away or you might need time to absorb the news and come to terms with the prognosis.

    Your feelings

    After the initial shock feelings of fear, anger, despair, helplessness and anxiety are common. You may also worry about being a burden to family and friends; emotionally, physically, socially
 and financially.

    You probably will have more than one emotion at a time. These feelings are likely to change sometimes from day-to-day or even from hour-to-hour. This is often part of the process of making sense of what is happening. You may find it hard to think clearly. It’s natural to cry at this time, don’t feel like you have to put on a brave face.

    Many people compare these feelings to waves at the beach. Sometimes waves knock you off your feet other times your footing is a little stronger. But at anytime, a large wave can suddenly come back and knock you off your feet again.

    The waves of your emotions don’t hit in any particular order or strength. However people often say their fears, thoughts and feelings are stronger at night when they’re lying in bed and that they don’t often share them with family and friends.

    You may feel unsure of how to cope with your feelings and emotions. Find someone you can talk to perhaps a family member or friend. You could also consider professional help through your GP, a counsellor, psychologist, psychiatrist
or spiritual adviser. Other people nearing the end of life offer a unique perspective and you may want to consider joining 
a support group.

    These feelings probably won’t go away altogether but they may change over time and you may learn strategies to help you live as well as you are able for as long as you can.

    Telling others

    People share the news in different ways. There’s no easy way to start this conversation but you may find it helps to prepare.

    • 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. 

    • Be prepared for people being uncomfortable and perhaps not knowing what to say. 

    • Accept that the person you are telling may get upset. You may find yourself comforting them, even though you are the one dying. 


    Call Cancer Council 13 11 20 if you need help telling people. They can help you find the words that feel right for you.

    When family decides 


    Sometimes family members learn the cancer is terminal before the person who is dying. They may think the person is too young or too old to be told the truth. Some cultures may also think it’s best that the person is not told.

    Often people who are dying know what is happening. Keeping it a secret from them may mean they feel isolated and lonely at a time when they most need support. Although it may be difficult it is best to be honest and truthful.

    Emotional concerns

    Talking about dying

    Most people are not used to talking openly about death and dying, and it’s common to avoid this conversation.

    There may be days when you feel like talking about approaching the end of life and days when you don’t. It may even change from minute to minute.

    In general it can help to talk about your fears and concerns about death with trusted family and friends. When you share how you think and feel with people you trust it can often help support all of you through sadness, anxiety and uncertainty.

    Some people dying with cancer have said the process can feel isolating and lonely. This is particularly true if family and friends avoid talking about what is happening. If you want people to acknowledge that dying from cancer is a difficult experience let them know.

    When you don’t want to talk

    You may find you don’t want to talk about dying. Or you want to discuss it with some people but not others. You may be the type of person who would prefer to focus on making the most of the time you have left rather than talking about death. If you don’t want to talk about facing the end of life don’t force yourself.

    In some cultures people think it’s disrespectful to talk about dying. Or they may feel that talking about death makes it happen sooner.

    The effect on people close to you

    You may sometimes feel the hardest part about dying is the effect it will have on your family and friends.

    People who are living with terminal cancer often say family and friends react in different ways when they find out the disease is at the end stage. You may experience the following responses:

    • they may be overprotective, not wanting to leave you alone.
    • they may offer to help in any way they can.
    • they may 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.
    • they may volunteer the story of a friend or celebrity who had a miraculous recovery from something everyone had deemed hopeless and fatal.
    • they may pull away and withdraw from your life.
    • some people may start to regard you as already gone. 


    These reactions can be hurtful and frustrating but they don’t mean your family and friends don’t care. They need time to adjust to the news and come to terms with how they’re feeling.

    Children

    Telling children you are dying is confronting and difficult. There is no easy way to approach this conversation but it is important to let them know what is happening. While you might avoid telling them for as long as possible children may sense something has changed and not sharing can add to their anxiety.

    It may be helpful to have your partner or a support person with you when you have this discussion. How you tell your children will depend on their age but these suggestions may help:

    • be honest with them and explain the situation using words they could understand. Children may benefit from seeing a counsellor, or depending on their age, a play therapist.
    • 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.

    For more information call Cancer Council 13 11 20 for a free copy of Talking to Kids About Cancer.

    If you live alone

    You may live on your own and not be able to receive care from 
a family member or friend in your own home. If you don’t have family or don’t have contact with them other services can help—the palliative care team or your local community health service, local council or church group. You may also need to organise practical care from support services.

    Coping with change and loss

    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, and your cultural or spiritual beliefs.

    Everyone will find their own way at their own pace. There is no right or wrong way. For some learning more about the physical dying process can make it easier to cope. Others find it helps to think ahead within a specific time period.

    Finding hope

    You may find it hard to feel hopeful when you’ve been told you’re dying with cancer. While it may be unrealistic to hope for a cure you can find hope in other e.g. sharing some special times with those you love.

    Studies of people dying with cancer show people’s hope can be maintained when their health professionals involve them 
in decision-making especially about palliative care treatment options and where they’d like to die, and reassuring them their pain will be well controlled.

    Maintaining a sense of control

    For many people learning that they are approaching the end of life may make them feel like they’ve lost control. If you want to regain control over some areas of your life you can plan future medical decisions and tidy up unfinished business.

    Losses

    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. A dying person often needs to spend time grieving for these losses.

    People often grieve for events they won’t be around for such as marriages, graduations and having babies. People without children or a partner may mourn the lost opportunity to have these relationships or experiences.

    You may also gradually feel less able to do things or you may lose interest in activities you previously enjoyed. Although this process can be helpful in allowing you to get used to the idea of death it can also make you feel sad and very low.

    Living with dying

    You may have heard the term ‘living with dying’ and wondered what it means. For many people it’s the balance between knowing you are dying and still trying to live as fully as possible. This may mean focusing more on the present. You may find that some days it’s easier to achieve this than others.

    Common questions

    Often people who are dying have lots of questions. Sometimes they’re not sure if they want to know the answers. Here are some questions you may want to ask when you are ready.

    How long have I got?

    Some people want to know how long they have left to live while others prefer not to know. It’s a very personal decision. This question can be hard for your doctor to answer and you may 
find their response vague. As everyone is different a doctor can only give you an estimate (prognosis) based on what usually happens to people in your situation not exactly what will happen to you. Sometimes doctors are hesitant to predict your prognosis because they’re concerned about over- or under-estimating a person’s remaining life span. But if it is important for you to have an estimate ask your doctor for one.

    You may want to think about whether quality of life or the amount of time left to live is important to you. Some people prefer to have less time if it means feeling relatively well while others want as much time as possible regardless of how they feel. Sometimes people find that near the end they change their minds and want to do everything possible to postpone death, if only by days. This is a natural reaction.

    It is likely to be very difficult if you are told the time you have left to live will probably be short. Even if it is only a matter of weeks having a sense of remaining time can give you an opportunity to prioritise what you’d like to do.

    If you live past the estimated time you may feel unsettled and not quite know what you should do next. Or you might feel lucky to be living beyond that time. It may help to talk about your feelings with your family, the palliative care team, your doctor or a counsellor.

    What is it going to be like?

    It’s common to have misconceptions or fears about what dying 
is like. Many people say they don’t fear death as much as the unknowns of dying. Knowing what you might expect makes things easier—not being told what might happen can be distressing for you as well as for your family and friends.

    If you’ve been with a person who has died the experience may have left you reassured, sad, angry or scared. You may be worried by some of the physical changes that happened to them e.g. perhaps it appeared they were having trouble breathing or they seemed to be in pain or uncomfortable.

    It will help to talk to your doctor, the palliative care staff, or if you’re staying in a hospice, the staff there. They can explain the physical dying process and reassure you that you will be cared for. Modern health care means people should not die in pain or distress. The following question also describes the physical dying process in more detail.

    How will I know that the end is near?

    For many dying is a gradual shutting down of the body’s systems. Energy levels fluctuate and there are good days and days you can’t do much at all. Appetite reduces 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 withdrawing from family and friends, and you may sleep more and more during the day.

    Near the end many people slip into unconsciousness before dying although some remain alert almost until the end. Others may have phases where they are awake and can talk and then slip back into unconsciousness.

    No one knows how a dying person experiences the moment of death. Whatever happens it is thought to be a peaceful moment.

    Spiritual concerns

    Spirituality is an individual concept. For some it may mean being part of organised religious beliefs and practices such as Christianity, Judaism, Islam or Buddhism. For others spirituality is expressed as a personal philosophy or a world view.

    Spiritual care is important for many people at the end of life. Often people find comfort and strength in their spirituality and talking to their priest, minister, rabbi, imam or equivalent is an important source of support. For others their beliefs are challenged by their situation. It may help to talk about your thoughts and feelings with a pastoral care worker. They are part of the palliative care team and have the expertise to discuss spiritual issues, whatever your religion or whether you are atheist or agnostic. You may wish to discuss life’s meaning or your beliefs about death. A pastoral care worker can also provide encouragement and companionship.

    Some people say knowing they’re dying makes them feel more spiritual and they need to think about and discuss these issues. Others may embrace a belief system they have never been interested in before or abandoned many years ago.

    Some people find comfort in prayer or meditation. Many people gain a lot of support from knowing other people are praying for them or sending positive thoughts their way.

    Some religions have specific practices for when people are dying. If you want to follow certain rites in a hospital or hospice it’s best to discuss this with the staff. They will be able to help find the space and time for you to do this.

    Managing symptoms

    Managing symptoms is a common concern for people who are dying and their family. Near the end of life the focus of care is usually about maintaining quality of life and remaining pain-free.

    Health professionals will do all they can to provide you with the highest possible level of comfort and care during your last days. Ask them any questions you have so you have a good understanding of what to expect.

    Palliative care

    Palliative care offers relief, support and comfort to people who are dying and their family and friends. It involves caring for your physical, emotional, psychological and spiritual needs.

    Your GP and community nurses may be able to provide all the care you need but they may also call on your local specialist palliative care team. These different professionals work together to give you relief from pain and other symptoms of cancer. They will try to help you live your life as fully as possible until you die. They will also support your family and friends to help them cope during the illness and after the death.

    For more information about what palliative care is, how it helps and how to access it call Cancer Council 13 11 20 for a free copy of Understanding Palliative Care.

    Health professionals in the team

    The people in the palliative care team will work together 
to help meet your physical and emotional needs, and provide support to your family and carers.

    Your palliative care team may include some or all of the following:

    •        palliative care specialist
    •        nurses
    •        GP
    •        dietitian
    •        physiotherapist or occupational therapist
    •        social worker
    •        pastoral carer
    •        counsellor or psychologist.

    Pain

    Many people with end stage cancer worry they could spend their final days in pain but not everyone with cancer has pain. If you do the health professionals caring for you will help you control the pain as much as possible.

    Everyone experiences pain differently so it might take time to find the right pain relief or combination of treatments for you. Controlling the pain may allow you to continue with activities you enjoy for some time and offer a better quality of life.

    Even if you have experienced pain from cancer it will not necessarily get worse as you get closer to dying.

    The right pain relief for you depends on the type of pain you have and how bad it is. You might be offered:

    •        mild pain medications such as paracetamol and non-steroidal anti-inflammatory
             drugs (NSAIDs) 

    •        moderate pain medication such as codeine 

    •        strong pain medication such as morphine, oxycodone, 
hydromorphone and fentanyl. 


    You may also be given other types of medication to take with 
the main pain medication e.g.

    •        antidepressants and anticonvulsants for nerve pain
    •        anti-anxiety drugs for muscle spasms
    •        local anaesthetics for nerve pain.

    If the pain is hard to manage a pain specialist may consider a nerve block or epidurals. Some people worry about becoming addicted to pain medication but this is not a concern when being treated for symptom control for end stage cancer. For more information read Overcoming cancer pain or call Cancer Council 13 11 20 for a copy. 


    Tiredness and fatigue 


    Having a terminal illness will almost certainly leave you feeling fatigued. Try to pace yourself and save your energy for the activities most important to you. The fatigue may also affect your ability to think clearly and make decisions. This can be frustrating particularly when you are dealing with practical concerns. If you are trying to put your affairs in order for family members you may want to do this at a time of day when you have more energy. 


    This is the time to let your family and friends help you. If they offer to do something for you accept their assistance as people often want to help in whatever way they can. If you want to complete a specific task invite family members or friends to help, or make a list of tasks you’d like their assistance with.

    Loss of appetite

    Many people find they lose their appetite as they near the end of life. This may be because of other symptoms such as pain, nausea or breathlessness, or because the body’s energy needs have slowed down and it’s no longer necessary to eat as much.

    It’s not necessary to force yourself to eat, this may only make you feel uncomfortable and can cause vomiting and stomach pain. Try having small meals or eat your favourite foods more frequently. Another option is liquid meals. Ask your doctor, nurse or dietitian to recommend something suitable.

    It’s common for others to want to encourage you to eat as preparing food for you is how they show they care. You may need to let them know you don’t feel like eating and suggest other ways they can show their love such as a hand or foot massage.

    As the disease progresses the body reaches a point where it can no longer absorb or get nutrients from food. Clear fluids such as water or weak tea may be all you can handle. There will come a time when even this isn’t tolerated and family or friends can help keep your mouth moist. 

    Feeling sick

    You may feel sick or have trouble keeping food down either from the cancer or from some of the side effects from the medication you’re taking. Nausea can usually be managed with medications. They can be taken as tablets, or if swallowing is difficult, as injections under the skin or suppositories which are inserted into the bottom and absorbed through the lining of the rectum.

    Shortness of breath

    Breathlessness, also called dyspnoea, is common at the end of 
life. Breathing may become uneven, change rhythm and become noisy. There may also be excessive secretions creating loud, gurgling sounds. Your health care team will assess if something is causing the dyspnoea and manage it with medication or practical measures such as being placed near an open window, having a fan in the room or trying relaxation exercises.

    Feeling breathless may make you feel distressed and anxious and this is likely to make the breathlessness worse. Talk to your doctor about medications that can ease your anxiety.

    As you spend more and more time in bed your breathing may change again and you may lose the ability to cough effectively or to swallow and clear secretions from your mouth. Adjusting your position in bed or sitting up slightly can improve this.

    Other symptoms

    As you approach the final days or hours of life other symptoms can be managed to help you feel more comfortable.

    • Trouble emptying your bladder. The palliative care nurse or doctor may need to insert a catheter into the bladder to drain the urine and avoid a blockage.
    • Restlessness, calling out or twitching. At this stage you will probably be unconscious or asleep and unaware of what is happening. While these symptoms are common your family may find your restlessness upsetting. It may help for them to talk to a doctor or other health professional.
    • Feeling confused or experiencing hallucinations or visions. This is referred to medically as delirium. Your doctor can give you medications to help you relax and sleep. Your family and friends are likely to find this symptom distressing, and will need support and reassurance.
    • Noisy or moist breathing. This often occurs when saliva and other fluids collect in the airways. Although the sound is often distressing for family and friends at the bedside it is thought that the breathing is not painful. Various medications can help dry up new production of secretions but not what is already there.
    • Cool skin. Although the skin can be cool, particularly the hands and feet, it’s thought that you will be unaware of feeling cold. 


    Using complementary therapies

    Many people use complementary therapies to help them 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 help calm your emotions and improve symptoms such as pain and nausea.

    Some people find having gentle therapies such as massage and aromatherapy, helpful. People who find it uncomfortable or painful to be touched may find reiki, meditation or visualisation useful.

    Where to die

    Choosing where to die is a personal decision. The options covered in this section all have pros and cons.

    You’ll need to evaluate your physical needs and the support that can be provided by family and friends. In some cases you may feel like your choice is limited and the practicalities help decide the setting. This may be because you have medical needs that 
only a hospital, hospice or palliative care unit can meet, or you may live in an area too remote for home visits. Your house may be unsuitable perhaps because of stairs or a small bathroom.

    Discuss with your family or friends where you’d like to have end-of-life care and what is important to you. Ask them about their views and preferences.

    You may be concerned about dying with dignity. This means different things to different people but for many it means dying with respect for your wishes and the way you want to die. For help working out the best option for you and your family, talk to your palliative care team.

    Where people would like to die may change over time and as their circumstances change.

    What is a ‘good death’?

    People often talk about wanting to have a ‘good death’. What this means is unique 
for everyone, shaped by his
 or her attitudes, cultural and spiritual backgrounds, as well as medical treatments. Although there is no right way to die research has identified some common factors that can help a death seem good including:

    •        knowing death is coming and having some understanding of what 
to expect 

    •        having some control over pain relief and other symptoms 

    •        being able to retain some control over where death occurs and how it happens 

    •        maintaining a sense of dignity 

    •        having the opportunity to prepare for death 

    •        having the chance to say goodbye
    •        having few regrets

    •        reconciling damaged or broken relationships
    •        being able to have a say 
in end-of-life care and to ensure wishes are respected.

    With planning you can achieve a good death.

    Dying at home may be seen as a marker of a good death but there is more than one way to die well. The important thing is you are able to decide and have your physical and emotional symptoms well controlled.

    Achieving a dignified and peaceful death can help family cope better with bereavement.

    In your own home

    If asked many people say they want to die at home around familiar surroundings and people. While it may not be the option everyone might choose, if you do want to be at home then help and support may be available for you and your carers. Even if you live alone, with planning, you can stay as long as possible in your own home.

    Who can help you stay at home?

    your GP

    Overall responsibility for your care

    palliative care team

    Helps you and your family maintain quality of life

    community-based nurse

    Provides ongoing care

    volunteers

    Provide a range of support services, can help with home or personal care

    physiotherapist

    Helps make the physical aspects of your life easier

    social workers

    Organise help with housework, shopping and cooking or personal care

    occupational therapist

    Assesses your home and suggests equipment such as hospital beds, wheelchairs and bedside commodes

    counsellor, psychologist or psychiatrist

    Helps you work through your feelings

    pastoral care worker

    Talks about any spiritual matters

    It’s a good idea to check how your family and friends feel about home care. Some carers may appreciate having you nearby and 
not having to fit in with the hospital routines. Other carers may be frightened and worried they don’t know what to do.

    Although dying is a natural proces, few people have experience or knowledge of looking after someone who is dying. If you find your family isn’t supportive of you staying at home talk to your doctor, nurse or palliative care team. They can advise your family of what assistance is available and reassure them they don’t have to cope alone.

    Although you may wish to die at home you may change your mind as you get closer to the end of life. Sometimes people go into a hospice or hospital to have their symptoms managed or to give their carers a break and then return home. Talk to your palliative care team about ways of dealing with unplanned events. Have the contact details of professionals you can call if you need advice and support.

    For more information on how they can cope suggest your carers read Caring for someone facing end of life

    Home: what are the benefits?

    • Maintain emotional well-being by being in a familiar environment surrounded by family and friends.
    • Sometimes offers better opportunities to maximise the quality of life.
    • Retain a greater sense of control over your life.

    In a hospice

    You may decide you’d be more comfortable in a setting 
with staff who have the expertise to help your family and friends look after you.

    A hospice focuses on end-of-life care centred on quality of life. Staff specialise in providing physical and emotional comfort to the patient and supporting the family before and after the death.

    Hospices are different from hospitals. They are often quieter and calmer and have a more homely environment. You can stay for a short period of time and sometimes you can go back and forth during your final weeks. Many hospices now have a maximum length of stay so you may want to check this when booking in.

    Hospices are valued for their relaxed surroundings, skilled 
staff and symptom management. The hospice may offer a break from mainstream health care and respite from people wanting to visit you. You may choose this option if you want to relieve your family from caring for you while dying although they can still be involved. They can help in many ways such as feeding, bathing and offering comfort by reading, sharing music or simply being present.

    Some people and their family and friends are unsure of when to contact a hospice. They may wait to call the hospice until the final days possibly missing out on the support that this environment has to offer. Talk to your palliative care team or doctor about when it’s a suitable time to call the hospice.

    Hospice: what are the benefits?       

    • A warm and comfortable physical environment.
    • 24-hour care.
    • Focus on quality not length of life.
    • A team of professionals
and volunteers trained to meet the needs of the dying patient and their caregivers. This can involve doctors, nurses, social workers, chaplains and other trained hospice staff and volunteers.
    • Pain and symptom control.
    • Treats the patient not the disease.
    • Allows the patient and family and friends to focus on being together.
    • Carers can leave at the end of the day and get some rest.
    • Some carers may not want their family member to die at home as it could be a constant reminder of their dying.

    In hospital

    More people approaching the end of life die in hospital than anywhere else. While some people 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, and they know you and understand your specific needs. You’ll need to check if this is possible as sometimes people are moved to a different ward as their medical needs change.

    To help create a more homely environment ask if you or your carers can bring in familiar items from home such as a favourite blanket or photos.

    Hospitals can provide medical interventions such as resuscitation and intravenous lines, that some people may think are unnecessary as a person nears death. If you are concerned talk to the hospital staff. You can request that you don’t receive them.

    The quality of end-of-life care in a hospital can be managed 
with communication and advance care directives. Preparing an advance care directive can help give you control over the type of medical treatment and interventions you receive.

    Hospital: what are the benefits?

    Experienced staff to manage physical symptoms (i.e. pain, fatigue, breathlessness) and emotional needs (i.e. anxiety and delirium).

    • Access to medical technology.
    • Carers can leave at the end 
of the day and get some rest.
    • 24-hour care.
    • A hospital can offer a sense of closure to family and friends as they don’t have to return to the hospital after someone dies.

    In a nursing or residential home

    A nursing or residential home is a place where people stay who need continual care and help with daily living. They are available to people who have different conditions and nurses and aides are available 24-hours to provide care.

    Some people fear dying in a residential home will be unpleasant and perhaps frightening. Yet dying in a nursing home can be comforting particularly if it has been your home for a period of time and you are familiar with the staff, who will try to create the right environment to make you comfortable.

    Nursing or residential home: what are the benefits?

    • Possible choice of a facility close to carers or loved ones.
    • Less clinical environment than some hospitals.
    • Experienced staff to manage physical symptoms and emotional needs.
    • Carers can leave at the end of the day and get some rest.

    Thoughts about euthanasia

    If an illness is prolonged or very debilitating, some people think about speeding things up. Euthanasia is when somebody’s life is deliberately ended to relieve them of their suffering from an incurable condition or illness.

    Voluntary euthanasia is illegal in every state in Australia. Nevertheless it is something some people consider when they are seriously ill.

    Sometimes a person with cancer may decide they want their death hastened 
but later decide that they don’t. They may have thought that way because they were feeling particularly ill, scared or worried about the strain they were putting on others.

    If this is how you feel discuss your concerns with your doctor, a counsellor or social worker. Sometimes these feelings are due to depression, feeling helpless or because pain is not being well controlled.

    Pain and depression can almost always be treated and help is generally available for other symptoms. It is important 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.

    If you urgently need somebody to talk to because you are thinking about ending your 
life call Lifeline on 13 11 14 for free, confidential telephone counselling at any time of the day or night.

    Practical concerns

    Planning for the end of life can be both rewarding and difficult. For many people, preparing for death helps them feel more in control of their situation. Some may wish to ease the burden on family members or friends.

    Most people like to get their affairs in order before they die.

    Getting your affairs in order – what to consider

    • Are your financial affairs in order?
    • Do you want someone 
to make legal or financial decisions for you if you are not able to?
    • Does someone know where to find important papers?
    • Do you have a current will?
    • If you have life insurance is the beneficiary information up to date?
    • If you have superannuation have you nominated a beneficiary?
    • Have you prepared a letter, gifts or heirlooms for family or friends?
    • Are there certain treatments you don’t want to have?
    • Have you discussed your wishes for end-of-life care with your loved ones and treating health professionals?
    • Have you considered who can make decisions about your end-of-life care if you’re not able to make them yourself?
    • Have you recorded these decisions in an advance care directive or appointed 
a substitute decision maker?
    • Who would you like to have around you as you get closer to death? Are there people you don’t want around?
    • Are there unresolved issues you would like to sort out with particular people?
    • Are there any cultural, spiritual or religious practices you would like carried out before or at the time of your death, or once you have died? Who do you need to ask to make sure this happens?
    • Do you want a minister, priest, rabbi or spiritual advisor present at the end?
    • Do you want to be buried or cremated? Do you have a burial plot? Would you like your ashes scattered in a particular place?
    • What are your preferences for a memorial service? Have you shared your wishes?

    Organising your paperwork

    It’s helpful to have all of your paperwork up to date and in one place. This will make it easier if a family member has to help you with financial and legal matters.

    Important documents to get together might include:

    • birth, marriage, divorce and citizenship certificates
    • bank and credit card information

    • investment details (e.g. shares, funds)
    • Centrelink and Medicare details

    • superannuation and insurance information
    • house title/lease documents

    • loan details (e.g. house, car, etc)

    • will

    • passport

    • funeral information.

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

    Making care choices

    As you approach the end of life you may want to think about your ongoing medical care.

    As it is hard to know what medical care you’re going to want until the situation arises, uncertainty is common. Many people find their attitudes and preferences for medical care change as they get closer to death and they need to revisit their decision regularly. To help you decide think about what is important to you and talk with your health professionals, over several appointments if necessary.

    For some people, quality of life is more important than length, but for others it may be the reverse. Some people may feel there’s nothing worse than death, and will do anything to avoid it, 
while others prefer to die comfortably without unnecessary and sometimes painful interventions. You may want to find a balance between what medical care can achieve and the side effects.

    Having capacity to sign a legal document

    When you make a will, appoint a substitute decision maker or write an advance care directive you need to be an adult and have capacity at the time of signing the document. This means you are able to understand the choices available, the consequences of your decisions and are able to communicate your choices. If there could be any doubt about your capacity it’s a good idea to get a doctor’s certificate to verify this.

    Making a will

    A will is a binding document that records who should receive your assets (estate) after you die. A will also covers guardianship plans for your children. Many people want to make a will or update the one they have. Having a will usually makes it easier for family and friends to carry out legal and financial arrangements after you die. Without a will these arrangements can be complicated, lengthy and expensive.

    Making a will is not difficult but it’s a legal document that must be prepared and written in the right way. It is best to ask a lawyer to help you or contact the Public Trustee in your state or territory. Cancer Council has more information on preparing a will – call 13 11 20.

    Appointing a substitute decision maker

    You can appoint someone to make decisions for you if at some point in the future you’re not able to make them yourself. This can include decisions about your finances, property, medical care and lifestyle. This person, called a substitute decision maker, should be someone you trust, who will listen and understand your values and wishes for future care.

    Depending on which state or territory you live in, the documents used to appoint a substitute decision maker have different names. These can include an enduring power of attorney, enduring power of guardianship or appointment of enduring guardian.

    Advance care directive

    Your doctor or another health professional may recommend that you consider making an advance care directive. In some states and territories the advance care directive is referred to as an advance health directive, advance care plan or living will. This document outlines the medical treatment you do or don’t want to have.

    An advance care directive can provide you, your family and carers with the opportunity to take control of decisions that affect your care if at some point in the future you no longer have the capacity to make them yourself.

    You can make the advance care directive as simple or as detailed as you like. You can also record any religious or spiritual beliefs that may affect your health care decisions. You need to be an adult and have capacity to make an advance care directive.

    You can make an advance care directive in every state and territory in Australia but the responsibility of representatives can vary from state to state. Keep a copy of your advance care directive for yourself and also give copies to your GP, oncologist, substitute decision maker and solicitor. You can ask your doctor or the hospital to place the directive on your medical record. Legal advice is also recommended.

    For further information visit advancecaredirectives.sa.gov.au and advancecareplanning.org.au.

    Advance Care Planning Australia also has their information available in 15 other languages which can be accessed via their home page.

    What to consider

    It is a good idea to let others know of your preferences for medical care and that you have prepared an advance care directive.

    This document can relieve your family or a friend from the stress of trying to guess what you’d want done.

    Without written instruction, family members may feel guilty and confused. In this situation it’s not uncommon for distressed family members to have disagreements 
about whether to keep you alive with any means possible or whether to focus on your quality of life.

    While you may find it difficult it is important to talk about the various aspects of your care with your family e.g. dying in comfortable surroundings and whether you’d like to be resuscitated or put on life support.

    Planning your funeral

    Some people may find planning their own funeral difficult or morbid. However others may be comforted that it will be carried out according to their wishes and their family or friends won’t have to guess what they would have wanted. Others think funerals are for the family and should be organised by them.

    You can lodge a plan with a funeral director of your choice 
well before it is needed. It may be difficult to do but you can record in writing your wishes or discuss them with your family. It is probably not easy for most of us to hear or think about the reality of what is involved in funerals. However there can be a satisfaction in leaving your mark on the occasion and also involving your family in the planning.

    There are no rules so you’re able to personalise your funeral to meet your cultural or spiritual preferences. You may just have a few simple requests for music you want played or poems you’d like to be read or you may have ideas for the full service.

    If you feel you need to make preparations but you can’t do the work, or prefer not to, you may like to talk to a social worker or pastoral care worker who can help you work out what you can do.

    To prearrange or prepay a funeral talk to a funeral director. You can download an online pre-planning information form from the Australian Funeral Directors Association website. It’s important to let your family know of any arrangements you have made. Copies of a pre-paid funeral contract should be provided 
to members of the family or filed with your will. Payment of the funeral is made once the service is conducted.

    Organ donation

    Some people with cancer may be able to donate their organs
 after they’ve died. This will depend on the type and spread of
 the cancer. After someone dies a doctor considers the person’s medical history. They then make a decision about whether or
 not some or all of the person’s organs or tissue are suitable for transplant. Each case needs to be assessed individually as there are usually restrictions. Even if other organs and tissues can’t be used almost all people with cancer (except those with certain blood or eye cancers) can donate part of their eyes (corneas).

    To donate organs you need to register with the Australian Organ Donor Register. Share your decision with family as they will be asked to confirm your wishes. Driver’s licences no longer include an organ donation question.

    Saying goodbye

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

    Saying goodbye is a personal experience and you need to 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. Other ways to say goodbye include writing letters, creating a recording on CD or DVD and passing along keepsakes. 

    If you have children you may want to write them a letter or make them a recording on CD, DVD or camera. You could specify this is opened at a specific age or time in their life. You 
(or friends) could also create a slideshow or scrapbook of special photographs. Memory boxes can also be special keepsakes for family. You may find this hard to do but it can be helpful and comforting for children. If your children are very young they’ll understand your words and sentiments when they’re older.

    Making arrangements for the important parts of your life can help you talk about death with family and friends. It can also give you a sense of control and relief that things that mean something to you will be looked after in the future.

    Services and information

    Support services and organisations are available to help throughout the process of dying.

    Carer services

    Carers Australia

    1800 242 636

    www.carersaustralia.com.au

    National body representing Australia’s carers, which can direct you to your state or territory carer association.

    National Carer Counselling Program (NCCP)

    1800 242 636

    Offers short-term counselling for carers. The NCCP service is run by your local carers association.

    Young Carers

    1800 242 636

    www.youngcarers.net.au

    Supports young people who are caring for a parent who is physically or mentally ill. They run support programs and provide information.

     

     

     

     

     

     

     

     

     

     

     

    Counselling and mentoring

    Better Access initiative

    www.health.gov.au

    Medicare-subsidised referral to counselling through your GP.

    beyondblue

    1300 224 636

    www.beyondblue.org.au

    Offers 24 hour telephone counselling service. Online and email counselling available seven days a week.

    Dying Matters

    www.dyingmatters.org

    UK coalition that aims to raise awareness of dying, death and bereavement.

    The GroundSwell Project

    www.thegroundswellproject.com

    Community organisation using creativity to promote resilience and wellbeing through all phases of life.

    Kids Helpline

    1800 551 800

    www.kidshelp.com.au

    A telephone and online counselling service and crisis support for young people aged five to 25.

    Lifeline

    13 11 14

    www.lifeline.org.au

    A 24 hour telephone crisis support and suicide prevention service.

    MensLine Australia

    1300 789 978

    www.mensline.org.au

    Telephone and online support and referral service for men with family and relationship concerns.

    Cancer Connect

    13 11 20

    Community of people affected by cancer that you can connect with online, by phone or in person.

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    Equipment and aids

    Independent Living Centres Australia

    1300 885 886

    www.ilcaustralia.org.au

    Offers advice on a range 
of products and services to help with aspects of day-to-day living, including mobility, sleeping, eating and transport.

     

     

    Financial assistance

    Centrelink

    13 27 17

    www.humanservices.gov.au

    Offers financial support 
for people with a long-term illness and for primary carers.

    Financial Counselling Australia

    1800 007 007

    www.financialcounselling australia.org.au

    Information about financial counselling and finding a qualified counsellor.

    Cancer Council SA's Legal and Financial Planning Referral Service

    13 11 20 

    Supports people affected by cancer needing financial planning advice.

     

     

     

     

     

     

     

     

     

     

    Funerals

    Australian Funeral Directors Association


    1300 888 188 or 03 9859 9966

    www.afda.org.au

    Provides a listing of funeral directors and estimates of funeral costs. It also has information on pre-paying or planning a funeral.

     

     

     

     

     

     

    Future planning

    Advance Care Planning

    www.advancecareplanning.org.au

    Includes documents you can use to prepare advance care directives
    and plans.

    Public Trustees Australia

    www.publictrusteesaustralia.com

    Gateway for all public and state trustees in Australia.

     

     

     

     

     

     

     

     

    Grief

    Australian Centre for Grief and Bereavement


    1300 664 786

    www.grief.org.au

    Information and referral service for people experiencing grief.

    GriefLink

    grieflink.org.au

    Web-based information for the bereaved and grieving, their carers, friends, colleagues.

    GriefLine

    1300 845 745

    www.griefline.org.au

    Provides community and family services to support all Australians who have encountered a loss.

     

     

     

    Home help

    Cancer Council SA's Practical Support Program Short-term practical help such as cleaning, gardening, meal preparation and child care may be available for people having cancer treatment who have limited family support. Call Cancer Council 13 11 20 for more information.

    Call your local council or speak to your palliative care team

    Some local councils provide a range of community and in-home services, such as Meals on Wheels or respite care. If you have a palliative care team, they can organise home help for you.

     

     

     

     

     

     

     

    Home nursing

    Talk to your palliative care team and/or your private health fund

    Home nursing can be organised as part of your palliative care. Private services are also available.

     

     

     

     

     

     

    Legal advice and information

    Cancer Council SA's Legal and Financial Planning Referral Service

    13 11 20 

    Supports people affected by cancer needing legal and/or financial planning advice. Available in some states and territories.

     

     

     

     

     

    Palliative care

    Palliative Care Australia

    www.palliativecare.org.au

    Provides information and resources and can link you to your local palliative care office.

    CareSearch

    www.caresearch.com.au

    Online palliative care information, services and evidence for patients and families provided as part of the National Palliative Care Program.

     

     

     

     

     

     

     

     

    Pastoral care

    Contact your hospital

    Most large hospitals have a pastoral worker who can talk to you about practical and spiritual concerns (from all religious and non-religious viewpoints).

     

     

     

     

     

     

     

    Support groups

    Face-to-face groups

    Call Cancer Council 13 11 20 for groups in your area or contact your hospital social worker to see if they run any support groups

     

    Meeting with others who understand what it is like to have cancer can be helpful. You may be reluctant to share your story or listen to other people’s, but many people find they benefit from the close bonds with others.

    Telephone support groups

    Call Cancer Council 13 11 20 for group information

    There are also groups for advanced cancer and carers.

    Online discussion forums

    www.cancerconnections.com.au

     

    People can connect with each other at any time, ask or answer questions or write a blog of their experiences.



     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    Information reviewed by: Dr Melanie Price, Executive Director, Psycho-oncology Co-operative Research Group, Senior Research Fellow, School of Psychology, University of Sydney; Dr Erica Cameron-Taylor, Staff Specialist, Department of Palliative Medicine, Mercy Hospital and Calvery Mater Newcastle, NSW; Gabrielle Gawne-Kelnar, Telephone Support Group Facilitator, Cancer Council NSW; Helpline and Cancer Counselling Service staff, Cancer Council QLD; Judith Quinlivan, Consumer; Linda Wolfe, Consumer; and Dr Mary Brooksbank, Philip Plummer and Claire Maskell Gibson on behalf of Palliative Care Australia.

     

     

     

     

     

     

     

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