What is palliative care?

Palliative care is care for people with progressive, life limiting illness. It helps them to keep as much quality of life as possible. A life-limiting illness is any illness that is likely to cause death in the foreseeable future.

Key points:

• Palliative care is not only for when someone is close to dying. It is a good idea to start care early to maintain your quality of life as long as possible – sometimes months or years.
• Getting palliative care does not mean you have to stop other treatments.
• Palliative care can include physical, social, emotional, cultural and spiritual support, not just medical care.
• You can get palliative care at home, in an aged care facility, in a hospice or in hospital.

Canberra Health Services has a video explaining what palliative care is and answering some common questions:

What does good palliative care look like?

Good palliative care should follow the National Palliative Care Standards. These standards say that care should:

1. Meet your physical, psychological, social, emotional, cultural and spiritual needs.
2. Involve you, your family and carers in decisions made about your care.
3. Support your family and carers.
4. Be informed by evidence and consistent with your values, preferences and goals.
5. Make sure it is easy for you to move between services.
6. Provide information about grief and connect families with grief services.

You also have rights under the Australian Healthcare Rights when using palliative care services.

Palliative care in the ACT

Palliative care may be coordinated by your GP, a palliative care specialist or team and can involve a range of health and care professionals or volunteers. You can request palliative care from any health professional who cares for you.

People with complex needs may get support from a specialist palliative care service.

Most palliative care services are free if you have a Medicare card. In the ACT, you can access:

• Hospice care at Clare Holland House
• Community palliative care at home
• Palliative care in a residential aged care facility
• In-patient care in hospital

You may want to pay for more services or equipment. You can search for services on Palliative Care Australia’s National Service Directory.

Learn more about palliative care:

• Palliative Care ACT
• Palliative Care Australia
  • What is Palliative Care? 
• CareSearch
• Understanding Palliative Care, The Cancer Council

Caring for Someone near End-of-Life

Many people with life-limiting illnesses are cared for at home. You may help to care for someone near the end of their life. Palliative Care ACT has a booklet on Palliative Caring with practical information to help you if you are caring for someone at home.

If you want to know more about what to expect when someone is dying, you can read this fact sheet from Canberra Health Services or Palliative Care Australia’s article on The Dying Process.

It is important that you take care of yourself. Some things you can do are:

• Make sure you get enough sleep
• Eat well and exercise to stay as healthy as possible
• Take time to socialise
• Ask for help from family and friends
• Contact local organisations to help you

You can get support from:

• The person’s palliative care team
• Carers ACT
• Palliative Care ACT – includes Leo’s Place, a home where people with life-limiting illness can stay so their carer can rest. Carers can stay with overnight if they wish.

End-of-life doulas

End-of-life doulas are relatively new in Australia. They are also called death doulas, death midwives, death walkers or death companions. They provide non-medical support to a person with a life limiting illness and their family. They may help with:

• advocacy for the person and their family
• end-of-life planning
• finding services
• emotional, social and practical support
• cultural and religious needs
• grief support

There is usually a cost for their services.

End-of-life doulas may do similar things to palliative care volunteers. But, end-of-life doulas are not trained in palliative care. Palliative care services will work with your end-of-life doula if you choose to hire one.

Currently, there are no formal standards or training for end-of-life doulas. Several organisations provide their own training, but most of these are not accredited. Some may have training in fields such as social work. Depending on the services they provide, they may need to follow the Code of Conduct for Health Care Workers, which applies to anyone providing a health service.

Visit Palliative Care Australia for more information and some questions you can ask before hiring an end-of-life doula.

Grief and Bereavement

Grief looks and feels different for everyone. Even if a death is expected, it can still be shock for those close to the person. Some people also experience grief when they or someone close to them is diagnosed with a life-limiting illness.

You might feel or experience:

• Sadness
• Crying
• Feeling numb
• Anger
• Panic or anxiety
• Difficulty sleeping
• Difficulty concentrating
• Relief
• Guilt

Grief is a normal part of life and there is no wrong way to grieve. It is ok to ask for help if you need to. Some useful resources:

• Griefline is a hotline you can call for counselling from 8am and 8pm, 7 days a week on 1300 845 745. You can book a longer call if you need to.
• Palliative Care Australia has more information on understanding grief.
• Canberra Health Services has a booklet When someone dies… that includes checklists for what to do to manage their affairs, where to get support when you’re grieving and important contacts for you to know.
• Raising Children Network has a helpful article on grief in children.