Common questions about dying

How long have I got?

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 and make plans for 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 (called a prognosis) based on what usually happens to people 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 to give you a prognosis 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 is most important to you. 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, 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

What is palliative care?

Palliative care is a person-centred approach to care that can sometimes be called supportive care. It can help people who have a progressive, life-limiting illness to live as fully and as comfortably as possible.

Many people think palliative care is only for end of life. However, its main aim is to improve your quality of life by identifying and managing your physical needs. It can also support your practical, emotional, cultural, social and spiritual needs. Palliative care also offers support to family and carers.

Palliative care may include:

• relief of pain and other symptoms such as fatigue, nausea, vomiting and shortness of breath
• access to resources, such as equipment to help you manage your 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 (short-term care up to several days so that carers can take a break).

Your specialist, GP or community nurse often provides general elements of palliative care. If you have more complex needs, your care may be led by a specialist palliative care service. They can also provide advice to other health professionals on how to best manage your symptoms. 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 home. Find your local palliative care body at Palliative Care Australia.

For more information, see Understanding palliative care or listen to Cancer Council's podcast series The Thing About Advanced Cancer.

Who will I see for my care?

Wherever you receive end-of-life care, the various health professionals in your healthcare or palliative care team can offer a range of services to help you. You may not need to see all the people listed on these pages, 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
• physiotherapist – helps with movement and mobility, and preventing further injury
• social worker – links you to support services and helps you with emotional, practical and financial issues
• 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 – uses evidence-based strategies to help you manage emotional conditions, usually in the long term; 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
• occupational therapist – assists in adapting your living environment; can suggest equipment, such as a hospital bed, walker, wheelchair and bedside commode (toilet chair)
• volunteer – can help with home or personal care and transport, and also offer support and companionship
• 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
• 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
• end-of-life doula – helps you understand your choices and offers (often for a fee) emotional and practical support, such as help with paperwork, finding services that can help you, and speaking up for your needs
• 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

Could complementary therapies help me?

If your doctor has told you that the cancer cannot be cured, you may wonder whether there are any other therapies that could help. Complementary therapies are used alongside medical treatments and tend to focus on the whole person, not just the cancer. They include practices like acupuncture, mindfulness and herbal medicines.

Complementary therapies may help you relax and feel calmer. Some can also manage symptoms such as pain and nausea. Some people find gentle therapies helpful, such as massage and aromatherapy. People who find physical touch uncomfortable or painful may prefer other therapies such as 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 make treatment less effective.

Alternative therapies are different to complementary therapies

Alternative therapies 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. Some alternative therapies have been tested and shown to be harmful. They may also be very expensive and could interfere with other medicines.

What does “dying well” mean?

People often talk about a “good death”. What dying well means is different for each person. It is shaped by their values, 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 your family, friends and healthcare team understand what matters most to you. Knowing your wishes have been explained clearly can make decision-making easier 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. where you want to be cared for or where you prefer to die).

What is dying going to be like?

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. 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 may influence how you feel about dying. It may have left you feeling 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 specialists. 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 sleepy (drowsy) or unconscious.

Make a plan with your healthcare 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 and your team can talk with you about what options there are and prepare a plan. Knowing you have a plan may help to put your mind at ease.

Control pain and distress

Today there are many ways for pain to be controlled and managed quite well. If you have symptoms of pain or distress, you or your family can ask your doctor for help. The next page describes the physical process of dying in more detail.

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

How will I know that the end is near?

For many people, dying happens gradually. As the body slowly shuts down, energy and concentration levels change. There will be good days along with days when you can’t do much. Your appetite will reduce, and sips of water or a spoon of food here and there may be enough.

As death gets closer, it’s common to lose interest in talking and the outside world. You may want to be alone more, or away from family and friends, and you may sleep 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.

More information about the dying process is covered in Caring for someone who is dying. This information may be confronting, so consider if this is the right time to read it.

What if I feel distressed?

It is natural to feel sad or worried, and some days will be harder than others, but there is support available. It is especially important to reach out for support if you feel very distressed. Distress might build if you are feeling depressed or have a sense of helplessness, or if you have pain, difficulty breathing (breathlessness) or other symptoms that are not well controlled.

Pain and depression can often be treated, and support 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 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.

Ian