Understanding palliative care
End of life is a personal experience as well as a responsibility of our health, social and aged care systems. The care a person receives in the last years, months and weeks of their life can reduce distress arising from living with a terminal illness and dying. Many older people will approach death in residential aged care or with support from a home care package.
We use many different terms when talking about the care we provide to people who are in the last stage of life whether from diagnosis of a terminal illness, from progressive advancing disease or as part of ageing. Palliative care generally reflects care provided by health professionals based on the person’s needs and in accordance with their skills and training. Palliative care and end of life care are often used interchangeably. Palliative care includes care from diagnosis through to the last days of life. Advance care planning is seen as important as it enables the person’s wishes about care at the end of life to be respected even if the person can no longer speak for themselves. The term ‘specialist palliative care’ refers to both clinicians with specialised expertise in palliative care, and services that form part of the specialist palliative care sector. These clinicians and services are defined by set criteria and are funded to deliver specialist care.
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Palliative care definitions
(Aged Care Standards)
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Why palliative care matters
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What services need to consider
- Advance care planning is the voluntary process of planning for future health and personal care needs.
- Advance care documents are documents that result from advance care planning. They include Advance Care Directives and Advance Care Plans.
- End of life refers to the period when an older person is living with, and impaired by, a fatal condition, even if the trajectory is ambiguous or unknown. This period may be years in the case of older people with chronic or malignant disease, or very brief in the case of older people who suffer acute and unexpected illnesses or events.
- Last days of life is the hours, days or, occasionally, weeks when a person’s death is imminent. This is sometimes referred to as the period when a person is actively dying.
- Palliative care is person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure, who is expected to die, and for whom the primary goal is to optimise the quality of life. Palliative care helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness. It identifies and treats symptoms which may be physical, emotional, spiritual or social.
- The care an older person receives in the last years, months and weeks of their life can reduce the distress and grief associated with death and dying.
- All older people have the right to dignity, comfort and privacy and to be cared for respectfully and with compassion.
- Like dementia care, palliative care and end of life care is core business for providers.
- Using a person-centred approach, the older person is supported to identify their needs and goals, understand information and make choices and decisions about their care.
- Families and carers benefit from knowing the older person is receiving comprehensive and active care at the end of life.
- Advance care planning conversations can help build awareness of the person’s wishes.
- Early recognition that the person may be in the last months of life can provide time to enable comprehensive care and prepare the family.
- Assessment and reassessment of symptoms and needs can help support appropriate treatment and care.
- Outcome 5.7 of the Strengthened Age Care Quality Standards highlights a range of clinical considerations such as managing symptoms and psychosocial and spiritual needs, symptoms, medications, care issues including oral care and pressure care, and grief and bereavement.
- Care needs may require specialist palliative care input or support from others such as allied health professionals.
- Communication with families is important in ensuring they are aware of changes.
- Recognising and responding to changes is important. Some may be reversible.
- There are common signs that staff should be aware of that may signal that someone is in the last days of life.
- Care of the body after death and support for the family needs to be arranged.
- Services should also consider the grief and support needs of their staff.
ELDAC resources can support services and aged care staff to build their understanding of palliative care and develop their knowledge and skills in palliative care.
Preparing for Changes
Services need to be aware of the changes that will come into effect in 2025 that will affect palliative care in residential aged care and in home care. They include:
- The Strengthened Aged Care Quality Standards, specifically Standard 5: Clinical Care and Outcome 5.7: Palliative care and end-of-life care.
- Human rights-based Aged Care Act.
- Home Support Program which includes an End of Life Pathway.