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 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

How does palliative care help?

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’

Who will I see for my care?

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

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 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’

What does “dying well” mean?

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).

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. 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

How will I know that the end is near?

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.

What if I feel distressed?

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