End-of-life care

If you have cancer diagnosed at a late stage, or if the treatments have stopped working, you may be told that the cancer is terminal. This can come as a shock. It is natural to feel a range of emotions and everyone copes in their own way.

Being told you have terminal cancer means that the cancer cannot be cured and that it will likely cause death. Knowing how long this time may be is difficult to predict and can be a few weeks or months to several years. Maintaining your quality of life is important and supportive care during this time is available.

After the initial shock you may feel a range of feelings such as denial, anger, fear and anxiety. You may also be worried about how your family and friends will react. You may be able to work out how to cope with emotional and practical issues or you may want to talk to a family member or close friend. You might also want to think about seeking professional help.

What is a “good death”?

What dying well means will be different for each person and will be influenced by medical treatments, cultural background and spiritual beliefs.

Think about what a “good death” looks like to you. You may find it is important to have some understanding of what to expect, have control over managing pain and other symptoms and have the chance to prepare for death.

Some people see dying at home as a key to a “good death”. Others may feel more supported in a hospital or palliative care centre (hospice). Talking to family and friends about planning for death may give them a sense of relief that they understand your needs and that your preferences were respected.

How do I tell my family and friends?

This is a difficult conversation. It may be helpful to practice what you are going to say.

Talk to others when you feel ready and decide who you want to talk to and what you want to say. Remember that you can share as much or as little information as you are comfortable with. You can also ask your doctor to help share the news.

People may react in different ways. They may not know what to say. You may even find you are the one comforting them if they become very upset.

Having open conversations about what is important to you and planning ahead can also help family and friends to better cope with the loss and grief they may experience.

You can call Cancer Council on 13 11 20 for help in finding the words that feel right for you.

How long do I have?

Some people want to know how long they have to live while others prefer not to know. Some doctors may sound very definite but they can only ever give you an estimate (prognosis) about how long you have left to live.

Having some idea can help you prepare for the time you have left.

Practical concerns

Planning for the end of life can be difficult but also rewarding. Getting your affairs in order can help to make you feel in control of the situation and a sense of relief that things that are important to you will be looked after. It can also give you the sense that you are easing the burden on family and friends.

Some things you may want to consider:

ensure sure your financial and legal paperwork is up-to-date and in one place
make a will
make funeral arrangements
leave instructions and passwords for your social media accounts
discuss end-of-life issues with your family, carers and health professionals
discuss who you would like to have around you
consider who can make decisions about your care if you are unable to.

Advance care planning

It is important to plan for your future medical care and discuss your preferences with family, friends, carers and your health professionals. This is called advance care planning. Advance care planning can be started at any time, not just if you are ill.

It is difficult to know what your medical needs will be until the situation arises and you may need to revisit your decisions. However, discussing your goals and values with others can help ensure that your preferences are respected in these decisions. Quality of life is more important to some people than length but for others the reverse may be true. Talk to your health professionals about what is important to you and what medical care can achieve.

Similarly, arranging your personal things such as finances, in advance will give you and your loved ones peace of mind.

For more information visit Advanced Care Planning Australia.

Will palliative care help?

Palliative care aims to help people live their life fully and as comfortably as possible when living with a life-limiting or terminal illness. It does not aim to cure the disease. Palliative care is often given to people with advanced cancer and aims to help you maintain quality of life by dealing with physical, emotional, social and spiritual needs. It can also offer support to family members and carers.

Which health professionals will I see?

You may see a range of health professionals when you receive end-of-life care as they can offer a range of services. Some health professionals you may see include:

GP
Specialist palliative care nurse
Cancer specialists such as oncologists and surgeons
Counsellors or psychologists
Occupational therapist
Dietitian
Spiritual care practitioner who can discuss spiritual matters and. If appropriate, arrange prayer services and religious rituals.

Should I try complementary or alternative therapies?

Complementary therapies focus on the whole person rather than just the cancer and are used alongside conventional medical treatments. Complementary therapies are often used by cancer patients to help them cope with cancer and its treatment. They can be useful in managing symptoms such as pain or nausea and reduce your anxiety. If you are considering using complementary therapies, talk to your doctor as they may not be safe or evidence based and may also interfere with other treatments such as chemotherapy and radiation therapy.

Alternative therapies are used instead of conventional treatments. They are often promoted as cancer cures so you may find friends and family members suggesting you try them. However, unlike conventional treatments, alternative therapies have not been scientifically tested.

If you are thinking about using alternative therapies, discuss it with your doctor. Cancer Council does not recommend alternative therapies as a treatment for cancer.

Thoughts about dying early

Some seriously ill people consider hastening their death because they feel particularly scared or unwell, but later change their mind. You should discuss such feelings with a doctor, social worker or counsellor. There are many options available in Australia to relieve pain and provide support to people at the end of their life that can be discussed with your health professional.

If you urgently need to talk to someone about depression or because you are thinking of ending your life you can call Lifeline on 13 11 14.

What is voluntary assisted dying?

Voluntary assisted dying is when a person ends their own life with medicine prescribed by an authorised doctor. This means that a person who is suffering in the late stages of advanced disease and who meets strict criteria can request access to voluntary assisted dying. It must be voluntary and initiated by the person themselves and is usually self-administered. This is legislated by state and territory governments. It is essential to check the latest updates and know the law and rules around this choice in the state or territory where you live.

For information and updates on VAD for your state or territory, visit Queensland University of Technology’s End of Life Law in Australia website at end-of-life.qut.edu.au/assisteddying.

At Cancer Council we recognise that there are differing personal and professional views on voluntary assisted dying and we respect the right of people and organisations to hold their own views. The issues relating to end-of-life care can be confusing and upsetting for many people, so we encourage people to seek information and support. We can also provide information about palliative care, facing end of life, caring for someone with advanced cancer, legal and financial issues and where to get emotional support.

For further information and support call Cancer Council 13 11 20.

Caring for someone nearing end of life

Some carers prefer to provide practical support themselves with guidance from a health professional. Others may feel overwhelmed and prefer to have someone else provide personal care. This will depend on the circumstances, needs and preferences of both the person dying and the person considering caring for them.

Talk to your family and friends as they may be able to provide practical ways to help such as preparing meals, helping with bathing, doing odd jobs and errands, managing medicines and sorting through paperwork.

It is also important to provide emotional support to the person facing end of life. In the book, The Etiquette of Illness, the author suggests asking, “Do you want to talk about how you’re feeling?” as a more gentle approach than “How are you feeling?”. This also gives the person the chance to talk or to just say no.

Sometimes just being there for your loved one and offering companionship is what is most appreciated.

Remember to look after yourself as well. Many carers say that providing care can affect their health and wellbeing. Being a carer can be rewarding but it may also be emotionally and physically difficult at times.

Ways to stay healthy can include: