Over 160,000 people die each year in Australia. Many of these deaths will be expected as a result of serious illness, advancing chronic disease or old age. For people with a life-limiting illness who have little or no prospect of cure and who are expected to die palliative care offers care focused on quality of life.
Palliative care provides support for the person and for their family and carers. The aim is to help people live their life comfortably and as fully as possible by supporting their physical, emotional, social, and spiritual needs.
Palliative care is a team approach to supporting a person's individual needs and can be started at any time including when the person is having active treatment. It is not just for the last weeks and days, and it is not only for people with cancer. It is now accepted that combining palliative care with disease-modifying therapies improves symptom control, quality of life, and family satisfaction.[1]
A life-limiting illness is one likely to cause death in the foreseeable future and can affect people of any age. Life-limiting illnesses include cancer, neurological disease, dementia, and advanced heart, lung, liver, or kidney disease.
Quality of life means different things to different people. It often includes:
- being comfortable and pain free
- being able to socialise or spend time with loved ones
- having as much independence as possible
- not feeling you are a burden
- feeling emotionally well.
The Australian Government’s National Palliative Care Strategy has adopted the World Health Organization’s definition of palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patient’s illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Providing palliative care in Australia
Many different health professionals can provide palliative care including specialists and generalists. Who provides palliative care will depend on the person’s needs and availability of services and health professionals. This may change over time.
Not all people with a life limiting illness need specialist palliative care. Many people will see specialist palliative care staff only every now and again when there is a need. For people without complex needs the palliative care team may include their usual doctor or GP, nurses, allied health, and support workers.
A smaller group of patients and carers may have symptoms that need careful management. In this case there may be the continuing involvement of a specialist team with advanced training in palliative care. Specialist palliative care teams provide direct care for those with complex care needs. This could be in a hospice or palliative care ward. Specialist teams also support other health professionals working in the community or in hospitals to care for their patients as they approach the end of their lives.
The approach to palliative care service provision in Australia is outlined in a Palliative Care Australia (PCA) document Palliative Care Service Development Guidelines (340kb pdf).
The companion National Palliative Care Standards (371kb pdf) document supports service implementation and reporting by providing clearly stated standards for providing quality palliative care, services can be assessed against these standards.
The Australian government also supports palliative care via the National Palliative Care Program and National Palliative Care Strategy which guides palliative care initiatives and services in Australia.
Place of care
Where palliative care is likely to be received includes two broad categories; hospital and community.[1] Generally, where care is received will depend on whether the person has complex needs and/or what services are available.
Hospital
Hospital based services for palliative care may include:
- Inpatient care in designated palliative care beds or wards
- Inpatient care in other beds but involving specialist or generalist providers of palliative care
- Outpatient (ambulatory) services in outpatient clinics or specialist rooms
- Intensive care units and emergency departments with specialist palliative care services consulted on the care of critically ill patients.
In hospitals care is provided by health care professionals including doctors, palliative and disease specialists, nurses and allied health professionals.
Community
All of us live in communities. Communities reflect how we live, who we work with and who we spend time with. Often when people are seriously ill, they prefer to be at home. People they know can help provide their care and social support. This may be their GP and community nurses, visiting allied health and support workers. It will also be their family, friends, neighbours and acquaintances.
Being able to stay at home with a serious illness usually requires the help of family members or friends. Without this help, care at home would be very difficult.
Caring for someone at home can be demanding. It can be even harder if the carer is older or has heath concerns as well. Some carers may have a job or a young family. Equipment and other items may be needed to help caring. It can change how the home looks.
An article in the Medical Journal of Australia, Home-based support for palliative care families: challenges and recommendations, describes many of the care roles:
- Personal care (washing and feeding)
- Domestic care (cleaning, getting meals)
- Auxiliary care (shopping, transportation)
- Social care (emotional support, conversing)
- Nursing care (giving medication, changing catheters)
- Planning care (coordinating support for the patient).
Preferred place of death
We all have different attitudes to death and dying, and our preferred place of death. When asked where they would prefer to die, many people say they want to die at home. Home is what is familiar and comforting. However, home means different things to different people. It can be a house they share with their family or friends, or their room in an aged care facility. Some people prefer to live alone. Others live in a country town or in a remote outback area. Many people continue to live in the community and be cared for there until their death.
A person’s preference for where they wish to be cared for, and where they wish to die, can change over time. It can be influenced by what services and supports are available to them and their specific care needs. Family and friends also need to be considered.
How a disease progresses can also affect where someone is cared for and dies. Some illnesses can be unpredictable, and patients may experience episodes of decline and instability. Death may also occur without warning. It could even happen during treatment in hospital.
For someone with a life limiting illness, there are many decisions that will need to be made. They need to consider where they want to be cared for and where they want to die. For some, staying at home may seem the best choice. For others, it might be going into a hospice or hospital or residential aged care facility. These choices may seem right at the time, but they may also change. These conversations are an important part of advance care planning. This helps to make sure that the patient’s wishes are respected.
1. Palliative Care Australia (PCA). Palliative Care Service Development Guidelines. Canberra: PCA; 2018 Jan.
Page last updated 24 August 2020