Everything you need to know about Australia’s palliative care system

Palliative care

Article by 

Jolene Hill

A guide for carers navigating Australia’s palliative care system and end-of-life decisions

When the time comes that the person in your care is diagnosed with a life limiting illness, it can be difficult to cope with the situation. It’s normal to feel numb, shocked, panicked, frightened, guilty, vulnerable…even angry or totally overwhelmed with emotions.

There is no right or wrong way to feel or deal with the diagnosis, but you don’t have to go through it alone. There are many organisations that can help with Australia’s palliative care system to help you understand and cope with your carer’s role.

Australia’s Palliative Carer System + Advance Care Planning

The earlier preparation and planning is put in place, the easier it can make the ‘acceptance’ journey for the person in your care. It may also lessen the stress and provide comfort for family and friends.

Developing an Advance Care Plan will assist carers and medical staff to provide the care that the person wishes to receive at the end of their life.  It also helps a carer avoid having to make difficult decisions regarding care options without the person’s input.

The person’s doctor will provide information regarding the nature of their illness, diagnosis, and care choices available. Ensure that all decisions made regarding their treatment and ongoing care, are informed, and suit their needs.

Step 1. The person should choose a substitute decision-maker to make medical treatment decisions on their behalf if they are not able to do so. They should also choose a second person as an alternate substitute decision-maker to be called on if their substitute decision-maker is unable to make decisions.

Step 2. Discuss health care preferences with their carer, family, and doctors. Do this on a regular basis, particularly when their health care preferences or circumstances change.

Step 3. After these discussions, they should record their choices in the required document/s. The process of doing this varies between states and territories in Australia.

For guidance on completing documents for your location, refer to Advance Care Planning Australia.

After creating their documents, they should share copies with their doctor, substitute decision-maker, carer, and family to ensure everyone knows what they want.

The difference Between Australia’s Palliative Care System and Hospices

It’s important to first understand the difference between the terms palliative care and hospice, to assist with decision making.

Australia’s Palliative Care System aims to improve the quality of life for patients with a life-limiting illness by providing pain and symptom management, emotional and psychological support and assists patients in making care decisions, regardless of whether they are getting curative treatments or not.

Hospice is a specific form of palliative care designed to focus on end-of-life care, providing support and comfort when treatments are no longer being undertaken. It usually begins only after a medical assessment indicates the patient has six months or fewer left to live.

Palliative care can be provided in a variety of locations, including hospitals, aged care facilities, in a home setting, respite care and hospice.

Australia's Palliative Care System

Palliative Care at Home

Many people living with a life-limiting illness wish to stay at home in familiar surroundings. It provides privacy and close access to family, friends, and the local community, and may promote a feeling of independence. It also has the benefit of helping to maintain a daily routine and feeling more secure.

However, caring for someone with a life limiting illness can be physically, emotionally, and financially demanding for the person providing the care. It’s important to seek assistance, if palliative care & end of life services are to be provided in their home. This may include visits from a range of service providers on a when-needed or regular basis. The person’s needs will determine what services are required.

Australia’s Palliative Care System provides at-home care iby specialist community palliative care services. The local doctor will be part of a home care team, and can provide the necessary information, including how to access after-hours palliative care support. Your healthcare team can assist with accessing home nursing, social workers, occupational therapists, psychologists, support groups and spiritual advisors.

Also, special equipment such as a hospital bed, bedside commode, wheelchair ramps, shower seats and safety handles can be arranged to be installed at the home.

It’s important for a carer to work closely with the health care team to make decisions regarding the type of care support needed at home, to make the person as comfortable as possible.

A carer payment is available if you give constant care to someone with a disability or a medical condition, an adult who’s frail and a person at the end of their life. Constant care means you provide care for a large proportion of time on a daily basis, that would be approximately equal an average working day. The caring role prevents you from working full time. Information is available at servicesaustralia.gov.au/carer-payment

If the person’s condition worsens or becomes complex, they may choose another option for care such as a hospital, inpatient service, or aged care facility.

Hospital Palliative Care

In a hospital, there will be access to medical professionals who understand the needs of a person requiring palliative care from Australia’s Palliative Care System. This can be very reassuring to both the person and their family.

Palliative and hospice care teams are available at most major hospitals. They assist with managing symptoms at the end of life, such as pain and digestive issues. Importantly, they can also assist with making medical decisions for patients and families, and can often stabilise the patient’s condition so they are able to return home.

If returning home from the hospital is an option, a hospital discharge planner will be able to help with the logistics.

Discharge planning is the process of creating a personalised plan to ensure the smooth transition of a patient from a hospital to wherever they are moving into. It couldbe home, residential care, respite care, palliative care or somewhere else. Effective discharge planning can avoid complications after discharge from hospital and avoid mistakes with medications.

Aged Care Facility

Palliative Care Australia has advocated strongly for many years that palliative care must be considered core business in aged care.

Residential aged care staff should be trained and have access to resources to ensure that high quality palliative care is delivered to residents in familiar surroundings, with little or no need for hospitalisation.

Unlike a hospital, a doctor is not in attendance at an aged care facility at all times, but is available when needed.

It is often the case, that people are discharged from a hospital to a care facility, while others may already be residents in one. If the person has lived in an aged care or long-term care facility for a period, they may choose to stay and receive end of life care there. You and your family may already have a good relationship with the staff who work there, and this can help make the care feel more personalized than in a hospital.

Questions to ask:

  • What palliative care training do staff receive?
  • Will timely specialist palliative care be available if needed?
  • If symptoms change suddenly, will the necessary medicines and equipment be readily available?
  • How many staff are present on evening and night duty?
  • What support will there be for family and friends when the person is close to dying?

Further information can be found at palliaged.com.au/for-the-community/at-the-end-of-life.

Respite Care

The aim of respite care is to give a carer a break from their role, and time to relax and recuperate. It can help with avoiding carer burnout. Respite is given by another person, service, or facility, and can be pre-planned or organised in an emergency situation.

Respite care is usually short term, but can be arranged long term as well. The three options for respite care are:

  • In home (Privately funded or with a Home Care Package)
  • In a community respite facility and funded by the CommonwealthNational Respite for Carers Program (NRCP)
  • In an Aged Care Home (Privately funded or government subsidised)

Carer Support Services

Carers are considered as part of a palliative care team. As a carer you may be able to deal with your emotions with the assistance of family and friends, or you may need some extra support.

Knowing what support is available can help you and the person you care for make the right choices. There are many organisations that can help you understand and cope with your role.

It may also be helpful to talk to your local doctor or healthcare team, as medicines, counselling or therapy can all make a difference. For guidance, refer to Carer Gateway.

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  1. Palliative Care is being defunded as a consequence of euthanasia policies.
    Take the example of what is happening in NSW –

    New South Wales budget estimates confirmed that the State Labor Government has cut $250 million from the $650 million for palliative care over the next four years, rather than the $150 million reported last year.
    NSW/ACT ACL State Director, Joshua Rowe, said, “not only do these cuts jeopardise the quality of care for the terminally ill, cruelly restricting choices in end-of-life care, but they also reduce the availability of quality palliative care in NSW.”
    “It is particularly distressing that this substantial cut includes a staggering 50% reduction in funding for paediatric palliative care, directly impacting the most vulnerable members of our community.”
    “These cuts coincide with an allocation of $100 million in funding for assisted suicide, raising serious questions about the government’s financial priorities.”
    “In the recent Budget Estimates session, Health Minister Ryan Park refused to rule out the possibility of additional future cuts to palliative care funding, leaving the community in a state of uncertainty about the future of this essential and compassionate service.”

    Seems that encouraging older Australians to choose euthanasia has now become a budget saving strategy.

    1. Thank you for bringing attention to this valuable insight. It is one, I hope, that all stakeholders will be monitoring & advocating for a balance in the allocation of government funding.

In Need of Support?

Carer Gateway is an Australian Government program providing free services and support for carers. Call Carer Gateway for support and access to services, Monday to Friday, 8am to 5pm local time.

Assistance with accessing emergency respite is available any time, 24/7.

1800 422 737 

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