End of life and palliative care explained

What is end of life and palliative care?#

End of life and palliative care is for people living with a life-limiting or life-threatening illness. Its focus is managing symptoms and providing comfort and support, including help with emotional and mental health, and with spiritual and social needs.

This kind of care also offers practical help with daily tasks. The goal is to improve quality of life, both for you and for your family, friends and carers. Care is shaped around your needs rather than your diagnosis.

If you have an illness that cannot be cured and that will eventually lead to the end of your life, end of life and palliative care will usually be suggested.

Who is end of life and palliative care for?#

Anyone living with a life-limiting or life-threatening illness can receive end of life and palliative care. This includes a wide range of chronic and life-limiting conditions, such as advanced cancer, dementia and Alzheimer’s disease, kidney disease, stroke and other neurological conditions, among others.

However, this care is not only for people who are close to the end of their lives.

If you have a life-limiting or ongoing chronic illness, you can receive end of life and palliative care regardless of your age. It is not just for people with cancer. It is available whenever you need help to manage symptoms such as pain or breathlessness, whatever your underlying illness.

It is also available if you need support to deal with the difficult emotions that can come with a serious condition. This is sometimes called “supportive care.”

One or more family members or friends may be helping to care for you in different ways. They can also access support from end of life and palliative care services, including support for family and carers.

Who delivers end of life and palliative care?#

End of life care is delivered by a wide range of providers. Many people who work in health, human services and community settings can be involved, for example by:

• listening and talking with you, with empathy for your concerns and needs
• referring you to more specialized support or care when it is required

A range of people and services may take part in your care, and as your condition changes the people caring for you may change too, to suit your needs.

Specialist palliative care is delivered by staff who are trained with particular skills and knowledge to help you, your family and your carers. They have expertise in symptom management and in emotional, spiritual, practical and cultural care.

Palliative care staff include specialist doctors, nurses, allied health professionals and spiritual care workers. They may visit you at the venues where your end of life care is provided, and they also work in settings such as day hospices and inpatient palliative care units.

Palliative care staff also give advice and support to the people who are providing your day-to-day end of life care. If your situation becomes complex, specialist palliative care staff can provide care directly to you.

How end of life and palliative care can help#

End of life and palliative care focuses on improving your quality of life by helping you manage symptoms and by providing emotional, spiritual and practical support as you need it.

Some people have an illness that makes them very unwell and may need palliative care for only a few weeks. Others may need it on and off over months or years. Care is best started early in the course of the illness, so you can keep the best possible quality of life, according to your wishes, for as long as possible.

You can receive palliative care in your own home, in a specialist inpatient palliative care unit, or in a local hospital. Support also extends to families, carers and others after a death has occurred, including help with grief, loss and bereavement.

Palliative care is not the end of active treatment#

You can receive palliative care at the same time as other treatment for your condition.

For example, if you are being treated for cancer, you can have palliative care alongside that treatment. You do not need to stop active treatment while receiving palliative care, although you may choose to if you wish.

“Person-centred care” means you are treated with respect and dignity whatever your age, cultural background, religion or sexual orientation. By responding to your needs and those of your family in this way, your palliative care team can help you make the most of each day. There is a strong focus on making sure people from all communities, including those from culturally and linguistically diverse backgrounds, receive care that is right for them.

Planning ahead#

End of life and palliative care staff can help you decide what care you need if you are likely to be entering the last year of your life. Recognizing this time matters, because your condition may change quickly, and you may be in contact with many different health or community services.

Thinking in terms of roughly the year ahead allows for better planning. You can talk about your preferences and what matters most to you with your loved ones and with your doctor or other health professionals. The aim is to meet your needs, according to your wishes, in the last year, months, weeks and days of your life. You may also wish to make an advance care plan.

Palliative care is often provided at little or no cost, but you may have to pay for some specialized equipment hire, medications, dressings and treatments. There may be extra fees if you receive palliative care in a private hospital, so check with your health insurer about your options and any costs.

You can contact palliative care services directly, or you can be referred by your doctor, nurse or local health provider, your carer or a family member.

Key points#

• The focus of this type of care is managing symptoms and providing comfort and support.
• It is available whenever you need help to manage symptoms such as pain or breathlessness, whatever your illness.
• Palliative care is not the end of active treatment.
• You can receive palliative care at the same time as other treatment for your condition.
• For example, if you are being treated for cancer, you can have palliative care at the same time.