How to access palliative care?

Key points:

• Palliative care is usually recommended by medical professionals to older Australians who are reaching the end of their life or have received an incurable disease diagnosis

• You should be able to receive palliative care from wherever you are based in Australia

• You don’t have to access palliative care if you don’t want to but it can improve your quality of life towards the end

However, palliative care is available early on into the diagnosis of an older person with an incurable illness.

Palliative care is personalised towards the care needs of an individual and is usually recommended for older people experiencing physical symptoms, like pain, vomiting and breathlessness, or emotional symptoms, like anxiety or loneliness.

Aiming to improve quality of life, palliative care is offered as a way in which that can be done when living with a life-limiting diagnosis.

But how do you go about organising or getting palliative care recommended for yourself, or an older loved one, when you are reaching the end of your life?

Referral and recommendation is essential

Palliative care offers a range of services that can be useful if you’re nearing the end of your life, but it doesn’t necessarily mean a doctor will recommend you for it, sometimes you may need to request these services if you feel ready.

You can ask your doctor to assist in organising palliative care for yourself if you feel like you will benefit from the services. This can be an important decision to come to if you prefer to face the next stage of your life rather than continue treatment for your illness.

Generally, a General Practitioner (GP) or other treating doctors and health professionals can make you a referral, or sometimes they will recommend you for palliative care.

Other professionals that can provide palliative care referrals include nurse practitioners or nurses, allied health professionals, Aboriginal health workers, hospital liaison officers, social workers, or aged care service coordinators or care workers.

It is always good to have an open conversation with a health professional about your health and your personal needs.

Generally, accessing palliative care services should be fairly simple when and where they are needed, depending on where you live. Telehealth technology can also help make services more accessible, especially in rural and remote areas.

Big organisations such as Palliative Care Australia have improved equitable access to palliative care services across the country.

Visit the Palliative Care Australia website for more resources about palliative care as a patient or as a carer for a patient.

Palliative care is so much more than care you receive in the last weeks or days of your life.

If you have early access to the care, even when curative treatments are still being provided, it can be beneficial and has been shown to extend prognosis.

When do I start receiving care?

Kate Reed-Cox, the National Clinical Advisor for Palliative Care Australia (PCA), says it depends on the individual, the diagnosis and the time the individual is expected to have left.

“For some people, palliative care may be beneficial from the time of a diagnosis of a life-limiting illness. A person can receive palliative care for a long time before they die. Palliative care can be given alongside other treatments, for example, chemotherapy, radiation, fluid removal procedures, or when other treatments have ended,” explains Ms Reed-Cox.

“Every person is different, and every situation is different. Some people access palliative care on and off through various stages of an illness.

“Other people have an ongoing relationship with a palliative care team, seeing them as required during the course of their illness. Accessing palliative care early can help put plans in place to manage changes through the course of an illness and ensure there is time to talk about and understand a person’s values, beliefs and goals for their care.”

She recommends having early conversations with your family, or older loved ones, around death and dying, and having an Advance Care Plan and other important documents in place, which can be helpful when a person’s health starts to deteriorate quickly.

Where can I receive palliative care?

Palliative care is a personalised service and it can be provided wherever you want to receive the care or feel most comfortable.

This could be at a general practise or primary health care clinic, in your own home, at a palliative care outpatient facility, in a hospital or a palliative care in-patient facility or hospice, or in a residential aged care facility.

Is palliative care for everyone?

Many people view palliative care as just providing benefit to the person receiving the care, however, palliative care staff provide holistic support to family, carers and friends as well.

This support can also go beyond the life of a patient, as many family and friends continue to receive support from specialist palliative care staff after the death of their loved ones, including help accessing grief counselling.

Some people may not want to receive palliative care for many different reasons, whether that be not understanding what it is or if they think it will go against their beliefs. However, palliative care is very person-centric, providing patients with care they want to receive and is sensitive to all their wishes.

If a resident in aged care or an older person at home has been offered palliative care, they don’t have to accept it if they don’t want it. It is a completely voluntary service.

In some instances, some people may refuse treatment for physical symptoms, but still receive assistance to meet a palliative care social worker for emotional support.

If end of life symptoms suddenly become complex or distressing, you can always change your mind and get a referral to a specialist palliative care service to help with the unexpected change.

Any type of treatment, including palliative care, should never be forced on a patient, which is where an Advance Care Directive can come into play.

Tell us about your good experiences with palliative care services in the comments below.

Related content:

What is palliative care for?
Palliative care: How does it impact someone’s life?
What is an Advance Care Directive?