If you are unsure about the difference between palliative care and end-of-life care you are not alone.
In Australia, palliative care focuses on people living with an active, progressive and advanced life-limiting or terminal illness. The aim is to enhance quality of life.
End-of-life care is the end part of palliative care for people who have reached the end phase of their lives and are irreversibly dying.
People may receive palliative care for a long time, sometimes decades, whereas those in end-of-life care are experiencing the dying process which may be hours, days or sometimes weeks.
Although palliative care cannot change health outcomes, it aims to provide holistic care, including physical, psychological, spiritual, social, and cultural care for patients and those important to them.
It aims to provide care for the whole person, treating death and dying as a natural part of life and prioritising comfort.
Palliative care is not just for those diagnosed with cancer, those living with dementia, non-malignant chronic illnesses, the elderly or frail and those with degenerative diseases may also receive palliative care.
Palliative care is for living. It aims to help patients enjoy a quality of life that aligns to their preferences and wishes, while supporting them to make important decisions regarding their care. For example, palliative care specialists might help a patient manage their drugs so they can enjoy food and wine with their friends.
On a palliative care team you will find specialist doctors, palliative care nurses, physiotherapist, occupational therapists, pharmacists, care coordinators, trained volunteers and carers. The team is multidisciplinary and the support on offer is considerable. In Australia, palliative care services are funded by both the Commonwealth and State Governments.
Sadly there are some false narratives about palliative care including:
The truth is pain can be managed through a range of prescribed medicines and treatments. Palliative care focuses on managing and relieving physical pain.
Doctors refer people to palliative care services in order to access the very best support available to live the best life possible. Palliative care can be given alongside other treatments (for example chemotherapy) and interventions (such as surgery, organ transplant).
Many think palliative care is the beginning of the end, but research has demonstrated people with advanced illness who receive palliative care have improved quality of life and at times, have been shown to live longer than people with the same illness without palliative care.
Palliative care assists in managing the symptoms such as pain, fatigue, vomiting, shortness of breath that often come with an advanced illness. Individual care needs vary and some people access palliative services for a phase. Once a person enters the dying process they are in end-of-life care.
End-of-life care represents the final phase of palliative care.
It is available to anyone living though the final phase of life, when they are dying.
The goal of end-of-life care is to empower individuals to make decisions aligning with their values and preferences through their end-of-life journey, while also providing support to the important people in their lives.
While it can be a rich, intimate and profound experience, it can also bring about personal distress and conflict. Factors such as a lack of end-of-life care planning can contribute to these challenges, underscoring the importance of thoughtful preparation.
Timely decision making is crucial to end-of-life care. While some people retain full mental capacity until shortly before their death, others are unresponsive and unable to make end-of-life care decisions.
Most people do not prepare for their end of life which poses numerous challenges for patients, the people they love and their caregivers.
It can be difficult to discuss palliative and end-of-life care, death and dying with loved ones (you can find advice on ways to have open and honest conversations here).
But planning for end-of-life care is very important.
Find out more about end-of-life care planning here: https://www.iamliving.org.au/plan/