Facing end of life


Common questions about dying

Friday 20 March, 2020

Knowing that you have a short time to live 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 feel ready.

How long have I got?

Some people want to know 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. They won’t be able to give you an exact answer. As everyone is different, a doctor can only 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 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 perhaps even longer.

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 a chance to focus on 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

Will palliative care help?

Palliative care is person-centred care that helps 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 families and carers.

A team of health professionals, as well as volunteers and carers, works together to offer a range of palliative care services. The services will be tailored to your individual needs, and may include these:

  • relief of pain and other symptoms such as fatigue, nausea, vomiting and 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, cultural, social and spiritual concerns
  • referrals to respite care services.

Your palliative care may be coordinated by your GP, a palliative care nurse or the specialist palliative care team in your area. Palliative care teams see people with the most complex needs, but they can also advise other health professionals on ways to manage 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, because palliative care is different in each state and territory.

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 can help?

Wherever you receive end-of-life care, the different health professionals in your palliative care team can can offer a range of services to assist you. You may not need to see all of the people listed in the table below, but understanding their 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.

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The palliative care team
GP
continues to see you for day-to-day healthcare 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
community nurse
visits you at home to supervise medical care, assesses your needs for supportive care and works with your GP
palliative care specialist or physician
treats pain and other symptoms to maximise wellbeing and improve quality of life; 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

counsellor or psychologist 
helps you manage your emotional response to diagnosis and treatment
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) discusses any spiritual matters and helps you reflect on your life and search for meaning; if appropriate, may arrange prayer services and other religious rituals  
pharmacist
dispenses medicines and gives you advice about dosage and side effects
occupational therapist
assists in adapting your living and working environment; can suggest equipment, such as a hospital bed, wheelchair and bedside commode (toilet chair)
physiotherapist helps you manage daily activities; can use physical methods to help with pain relief and lung congestion
diversional therapist offers recreational activities to improve your wellbeing
dietitian works out the best eating plan for you and tries to use diet to assist with digestive issues, such as nausea or constipation
speech pathologist helps with communication and swallowing problems
social worker
links you to support services and helps you with emotional, practical and financial issues; may also be called a welfare officer
volunteers
can help with home or personal care and transport, and also offer companionship

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 tend to focus on the whole person, not just the cancer. They are used alongside conventional medical treatments, while alternative therapies are used in place 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 have not been scientifically tested, so there is no proof they stop cancer growing or spreading. They can 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.

What is a “good death”?

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.

Think about what dying well means to you. You may find that some or all of these points are important to you:

  • knowing that 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
  • reconciling damaged or broken relationships
  • having the chance to say goodbye
  • resolving regrets
  • being able to have a say in end-of-life care and ensuring wishes are respected.

There are different ways 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. It is important thing that your family, friends and healthcare team understand what matters most to you. Open conversations and planning ahead for dying can also help family members and friends cope better with the grief and loss they may experience (bereavement). They may feel a sense of peace knowing your wishes were respected.

Thoughts about euthanasia

If an illness is prolonged or causing uncomfortable symptoms, some people think about speeding things up. Euthanasia is the act of deliberately ending the life of a person with an incurable condition or illness. Voluntary assisted dying is when a person ends their own life with the help of a doctor.

At the time of publication (2020), euthanasia and voluntary assisted dying are illegal in most states and territories in Australia. Voluntary assisted dying for people who meet strict criteria is legal in Victoria. To find out more, visit health.vic.gov.au and search for “voluntary assisted dying”. There is currently much discussion of these issues. The law has recently changed in Western Australia, and the laws are under review in some other states and territories (visit end-of-life.qut.edu.au for updates).

Regardless of the law, some seriously ill people consider this path. 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 a doctor, counsellor or social worker. Sometimes these feelings are due to depression or a sense of helplessness, or because pain or other symptoms are not well controlled.

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.

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.

What is dying going to be like?

It’s common to have misconceptions or fears about what the process of 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. 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 process of dying 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 your doctor or the 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 process that happens gradually. As the body slowly shuts down, energy 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 during the day.

Near the end, some people may require sedation for symptom management. 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, it is thought to be a peaceful moment.

Expert content reviewers:

Dr Megan Ritchie, Staff Specialist Palliative Medicine, Palliative Care Service, Concord Repatriation General Hospital, NSW; Gabrielle Asprey, Cancer Support Consultant, Cancer Council NSW; Rosemary Cavanough, Consumer; Louise Durham, Nurse Practitioner, Metro South Palliative Care Service, QLD; Tracey Gardner, Senior Psychologist, Cancer Counselling Service, Cancer Council Queensland; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Linda Nolte, Program Director, Advance Care Planning Australia, VIC; Rowena Robinson, Clinical Advisor, Palliative Care Australia, ACT; Helena Rodi, Program Manager, Advance Care Planning Australia, VIC.

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