This type of care is called “palliative care”. The main aim of palliative care is to improve the quality of life for your parent by looking after all of their physical and emotional needs. It is a focus on giving your parent the best life possible while they deal with advanced cancer.

"Palliative" does not mean "dying". It is not just for people who are about to die, although end-of-life care is part of palliative care. Palliative care does not aim to make your parent’s life shorter or longer. It aims to make what life they have left as dignified and peaceful as possible.

What kind of support does palliative care provide?

A palliative care team recognises that your parent has many different physical, emotional, practical and spiritual needs and that the best kind of approach is one that works together to look after all of these needs. It also offers support to you and your family to help you care for them and cope with the situation.

Each palliative care team provides its own set of services to a patient and their family. They tailor it to your unique needs as a family. This may include:

• Nursing and medical care – in a hospital or hospice or at home.
• Counselling and social worker services
• Dietary advice
• Loan of equipment  
• Physiotherapy and occupational therapy
• Therapists skilled in music, massage, aromatherapy, or colour
• Spiritual support and pastoral care from a range of cultural and religious backgrounds
• Volunteers to help you care for your parent

How can we access palliative care?

Depending on your needs, your parent may receive palliative care from their own GP or health care team, or they may be referred to a specialist palliative care team. There are services available in most areas of Australia.

How do we know if it’s time to consider palliative services?

Accessing palliative services as early as possible can make things easier for your parent and your family. A lot of people avoid palliative care as long as they can because they are afraid that it means they have given up hope and are going to die soon.

Your parent’s health care team will probably recommend if it is time to consider palliative care. Your parent can even refer themselves by contacting a local service. You can start palliative care from the first time you are diagnosed with a terminal illness.

It’s not a one-way door. If your parent’s illness stabilises or improves, palliative services can be stopped.

If my parent is referred to palliative care does that mean they are about to die?

Palliative care is for people whose illness has not responded to treatment and it’s likely it cannot be cured. The focus of palliative care is comfort and quality of life. But no one can tell you exactly when they will die. Palliative care will help your parent to live in comfort for the rest of their life. This could be weeks, months or years.

Is palliative care like euthanasia?

No. Euthanasia is assisting the death of someone who would prefer to die. This is illegal in Australia. Palliative care is about helping to give your parent the most comfortable and pain-free life.

Will we have to pay?

Palliative care is usually free. It is often funded by the government or charitable organisations. However, some hospitals and hospices might charge fees for in-patient services (these can often be covered by Medicare or private health insurance).

If my parent is in pain, can it be eased?

In almost all cases, pain can be overcome or made bearable. There is a wide variety of drugs used to treat pain and various ways that it can be given such as orally, into the vein or patches on the skin. A family of drugs commonly used to treat pain are called “opioids”.

Morphine is one of the best known and commonly used. Morphine can be used for long periods of time and although the dose may need to be adjusted as your parent’s body develops a tolerance to it, this does not mean that their condition is getting worse or that they are getting addicted.

There are also other ways to relieve pain, such as massage, meditation, using hot and cold packs, aromatherapy, acupuncture or hypnotherapy.

Who can I ask if I have questions?

Your parent’s palliative care team are there to help you too. There is no question too small or silly to ask.

Things to discuss - End of life decision making

We all know that sooner or later we are all going to die. But who wants to think about that before you really have to?

Your family might avoid talking about your parent’s death, thinking that if you accept it is going to happen somehow you will make it happen sooner. But sometimes when we avoid having a conversation about death with the person who is dying while they still can, we miss out on the opportunity to hear their wishes for what will happen at the end of their life.

Your parent has a right to make decisions about their treatment and care right up until the end of their life. They may be less able to think clearly as death approaches, so it’s a good idea to start talking about these things sooner rather than later. It’s important to write these wishes down and to tell the medical team about them, to make sure they get followed when the time comes.

These include things like:

• Making an “advance care directive” to tell doctors what kind of treatments are or are not wanted, no matter how ill they become. This includes things like whether they want to go on life support.  
• Deciding who will be their “Medical Power of Attorney”. This is a person who will make decisions for your parent if they can’t speak for themselves.
• Where would they like to die if they have a choice?
• Would they like to donate organs if they can?
• Would they like their body to be buried or cremated?
• Do they have any ideas for their funeral?
• Do they have a Will? This is a legal document that states what a person wants to happen to their money and property after they die.
• Who will look after you (if you are under 18) and your brothers and sisters after they die?