Knowing that you’re approaching the end of life raises many questions. Sometimes, you may not be sure if you want to know the answers. This section discusses some of the questions you may want to ask when you’re 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 is vague. As everyone is different, a doctor can give you an estimate (prognosis) based on what usually happens to people in your situation, but can’t say exactly what will happen to you.
Some doctors may sound very definite about the amount of time left to live, but it is only ever an estimate. Other doctors may be hesitant in case they overestimate or underestimate the time. But you can ask for an estimate if it is important to you. They will probably talk about your remaining life span in terms of days, days to weeks, weeks to months, or perhaps even longer.
You may want to think about whether quality of life or the amount of time left to live is more important to you. Some people might choose 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. Talk to your family and your health care team about your preferences, and let them know if these preferences change.
It is likely to be very difficult if you are told that the time you have left to live will probably be short. Even if it is only a matter of weeks, having a sense of how much time might be left 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.
"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
Is now the time to try complementary or alternative therapies?
If your doctor has told you that the cancer cannot be cured, you may wonder whether there are other therapies you could try. Complementary therapies are used alongside conventional medical treatments, while alternative therapies are chosen by some people instead of conventional treatments.
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 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. For more information, see complementary therapies or call Cancer Council 13 11 20.
Alternative therapies are often promoted as cancer cures, and family members, friends or even strangers may suggest you try them when you explain your prognosis. Unlike conventional medical treatments, alternative therapies are not scientifically tested or proven to be effective and could be harmful. They can be very expensive and could affect management of your symptoms. If you have questions about a particular alternative therapy, talk to your doctor, call Cancer Council 13 11 20, or visit iheard.com.au.
It is important to tell your doctor if you are using, or considering using, complementary or alternative therapies. Some herbal preparations, for example, can interfere with other medicines.
What is the role of palliative care?
Palliative care helps people with cancer to live as fully and as comfortably as possible. It can identify and help you manage physical symptoms, such as pain, but it can also help with practical, emotional, spiritual and social concerns. It can help you live as well as possible right until the end of your life. Because it is a family-centred model of care, family and carers can also receive practical and emotional support.
A team of health professionals, as well as volunteers and carers, work together to offer a range of palliative care services. The services will be tailored to your individual needs, but may include:
- relief of pain and other symptoms (e.g. nausea, vomiting, shortness of breath)
- resources such as equipment to aid care at home
- assistance for families to come together to talk about sensitive or complex issues
- links to other services such as home help and financial support
- support for emotional, social and spiritual concerns
- counselling and grief support
- support for people to meet cultural obligations
- referrals to respite care services.
Although it is not just about end-of-life care, palliative care plays an important role in offering symptom relief, support and comfort to people who are dying. The team will also support your family and carers to help them cope during the illness, and after the death.
Your palliative care may be coordinated by your GP, a palliative care nurse or the specialist palliative care team in your area. Specialist palliative care teams see people with the most complex needs, but they can also advise other health care professionals on ways to control symptoms.
Palliative care can be provided in the home, in a hospital, in a palliative care unit or hospice, or in a residential aged care facility. Services vary, however, because each state and territory has its own approach to delivering palliative care.
For more information about what palliative care is, how it helps and how to access it, see Understanding Palliative Care or call Cancer Council 13 11 20. You can also speak to your health care team or contact palliative care organisations.
Who does what?
Wherever you receive end-of-life care, the different health professionals in your palliative care team can be called on as the need arises. They will work together to help meet your physical, practical, emotional and spiritual needs, and provide support to your family and carers. You may not need to see all of 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. Your care may be coordinated by your GP, a community or hospital palliative care nurse, or the specialist palliative care team.
|The palliative care team
|continues to see you for day-to-day health care issues and may coordinate your palliative care
|specialist palliative care nurse
|may work in a community or hospital setting, can provide ongoing care and may coordinate your palliative care
|has had additional training and may be able to prescribe some medicines and referrals
|palliative care specialist or physician
|prescribes or recommends treatment for more complex symptoms associated with advanced cancer; usually works in collaboration with your GP or palliative care nurse
|cancer specialists (oncologists and surgeons)
|may refer you to the specialist palliative care team and continue to provide cancer treatment to help manage your symptoms
|gives you access to prescription and over-the-counter medicines to take at home; provides advice on safety and side effects; helps you keep track of your medicines
||can suggest aids to help you maintain mobility, and may assess your home and suggest equipment, such as hospital beds, wheelchairs and bedside commodes
||helps you manage daily activities; can use physical methods to help with pain relief and lung congestion
||offers recreational activities to improve your wellbeing
||works out the best eating plan for you and tries to use diet to assist with digestive issues, such as nausea or constipation
||may work with the dietitian to help you manage eating and swallowing problems
||offers counselling and emotional support; provides information and referrals for legal and financial matters, help at home, and other services; and can help you record your memories
||can provide information and referrals for legal and financial matters
|counsellor, psychologist or psychiatrist
||helps you work through grief, fear and other emotions; can teach you meditation or relaxation exercises; a psychiatrist may prescribe medicines to help with managing your emotions
|spiritual care practitioner (pastoral carer)
||talks about any spiritual matters and helps you reflect on your life and search for meaning, if appropriate; may arrange prayer services and other religious rituals
||can help with home or personal care and transport, and also offer companionship
What is a ‘good death’?
People often talk about wanting to have a ‘good death’. What dying well means is unique for each person, shaped by individual attitudes, cultural background, spirituality and medical treatments.
Think about what dying well means to you. Many people have found that it helps to:
- know that death is coming and have some understanding of what to expect
- have some control over pain relief and other symptoms
- be able to retain some control over where death occurs 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
- be able to have a say in end-of-life care and ensure wishes are respected.
There is more than one way to die well. Some people see staying at home as the key to dying well, but others feel more supported spending their last days in a hospital or palliative care unit. The important thing is that your family, friends and health care team understand what matters most to you. Open conversations and planning ahead for dying and death can also help family members and friends cope better with bereavement. They may feel a sense of peace knowing that they helped you to die according to your wishes.
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. Having some idea of what to expect can make the process easier, while not being prepared for 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, this 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. For example, 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 or to the palliative care staff. They can explain the physical dying process and reassure you that you will be cared for.
Modern health care means that people should not die in pain or distress. If you have symptoms that are not well controlled, you can ask a palliative care team to help. The information below also describes the physical dying process 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, dying is a gradual shutting down of the body’s systems. Energy levels fluctuate and there are good days along with days when 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.
Reviewed by: Kerrie Noonan, Clinical Psychologist, Palliative Care, Liverpool Hospital, and Director, The GroundSwell Project, NSW; Gabrielle Asprey, Facilitator, Telephone and Internet Support Groups, Cancer Council NSW; Ann Branford, 13 11 20 Consultant, Cancer Council SA; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Dr Michelle Gold, Director of Palliative Care, Alfred Health, VIC; John Haberecht, Director of Learning and Development, Centre for Palliative Care Research and Education, QLD; Marjorie Hunter, Consumer; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Cecilia van Raders, PalAssist Coordinator, Cancer Council Queensland.