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How to better enable end-of-life care choices


The new quality standards require aged care services to include advance care and end-of-life planning according to individual consumers’ preferences, writes Rosie Bonnin.

We are entering an exciting new era in aged care in Australia as we respond to the needs of a population now living longer.

Older people are a very diverse group with different abilities, cultural beliefs and needs for and expectations of services. There is much to celebrate about people’s longevity, however living longer does not mean living forever.

As our ageing population increases, we will also see an increase in the number of deaths per year, which are predicted to double in the next 25 years. Death, dying, loss and bereavement will affect us all yet many people are not keen to discuss and plan for the end of life.

Rosie Bonnin

The majority of older people say they would prefer to be supported to live well and die well at home in their own community but the reality is most people die in hospitals or care facilities.

End-of-life and palliative care are starting to be understood as everyone’s business, extending responsibility from the domains of acute and palliative care specialists into primary care, aged care and the whole community.

To enable older people to have choice and control to live at home until they die, requires a range of services and community supports that meet their personal care needs and those of the people caring for them.

The World Health Organization (WHO) sees end-of-life and palliative care as the responsibility of the whole health system. The WHO defines palliative care as a holistic approach that supports the physical, emotional, social and spiritual needs of a person with a life-limiting illness.

It is a comprehensive multidisciplinary approach to care which provides a support system to enable people to live as actively and fully as possible, providing relief from symptoms or suffering to improve their quality of life.

Support is personalised and includes care for the individual and their carers.

Ideally palliative care is an integrated part of the care and treatment plan from diagnosis and throughout the trajectory of an illness to allow for ongoing assessment and advanced care planning.

Planning needs to involve everyone concerned in identifying a person’s values, preferences and needs including end-of-life care and support for those grieving.

This personalised approach to care is at the heart of the new Aged Care Quality Standards coming into effect from 1 July 2019. The standards will require aged care services to include advanced care and end-of-life planning according to individual consumers’ preferences.

The needs of those nearing the end of life need to be recognised and addressed, their comfort maximised and their dignity preserved. All clinical and personal care is expected to be evidence based, best practice and individualised to optimise health and wellbeing.

A range of medical, nursing, allied health and other professionals can assist and enable older people to lead quality lives in the final stages of life.

Aged care and primary care settings are increasingly finding dietitians, occupational therapists, social workers, physiotherapists, speech pathologists, psychologists, pharmacists and paramedics have a vital role in meeting consumers personal and clinical needs.

Responding to each person’s specific needs and symptoms will require all health and aged care professionals to have the knowledge and skills to support people at the end of life.

Having access to evidence-based information and resources to help make informed decisions about advanced care planning, treatment options, symptom management and support for those dying and grieving can assist with providing quality care.

Aged care recipients and their carers also need access to trustworthy information and resources to inform their decisions about quality care, services and symptom management.

To enable everyone to have access to information to support quality end of life and palliative care the Commonwealth Government has funded palliAGED to provide free online evidence-based information, guidance, tools and resources. It provides up-to-date reliable information to assist professionals and consumers.

As an illness progresses a person may require more care as their symptoms or circumstances change and often need to reassess and reprioritise their goals to meet the changing nature of a disease progression.

PalliAGED has a section on symptoms and medicines and an evidence and complementary practice centre to enable people to practically apply evidence having the key information on what they can do, what they can learn and what their service can do.

The palliAGED Apps are also available to help deliver advanced care planning, treatment and prescribing advice at the point of care.

Go to palliaged.com.au

Rosie Bonnin is a research associate with CareSearch and palliAGED at Flinders University.

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