Your needs
People with a life threatening illness will have a range of needs that go beyond meeting their physical or medical requirements. They are offered holistic care which focuses on quality of life and aims to help people live well. A team of health care professionals including doctors, nurses, allied health workers, chaplains and volunteers, provides specialised, coordinated care addressing the physical, emotional, social, cultural and spiritual needs of not just you, but of your family and carers. This type of care can last for weeks, months or even years.
This approach aims to help you feel in control of your treatment and your quality of life. It involves family and friends, recognising that they, too, need to be prepared for the life threatening illness of someone they love.
A range of services are available to you and your family, including: nursing, medical care (including consultations with your doctor), day care, counselling, diet advice, loan of equipment, physiotherapy, occupational therapy, social workers, bereavement support, pastoral care, complementary therapies and a wide range of support from other trained workers.
Generally, this kind of care is referred to as palliative care. Palliative care does not mean that you have to stop active treatment for your illness and it does not only apply to the final stages of your life. Palliative care focuses on “quality of life” for you and your family and can last anywhere from weeks to years, depending on your illness.
It’s okay to think about your different needs, not just the ones to do with your physical health. Click here (PDF 80Kb) for a page you might like to use to write down your needs. This may help you communicate your needs with your doctors, family, carers and friends.
My first reaction was “but we don’t need palliative care”. I feared what this meant. But the nurses took the time to explain what palliative care could mean. I felt more comfortable when I realised that palliative care was much more than just nursing a dying person – it was about holistic support and understanding, ensuring that my husband could still “live” as best he could in the time he had left. The services offered by palliative care other than nursing are also very valuable to the whole family, not just the patient. Palliative care is something not to be feared but embraced, if the need arises. I know my family would not have coped nearly as well physically and emotionally without the team. The palliative care team taught us not to be afraid and helped us find strengths we never knew existed.
Your doctor will be able to put you in touch with your local palliative care service, or alternatively, you may wish to contact your state/territory-based palliative care organisation for more information. Click here for contact details.
Recently, the sector has endorsed the Standards for Providing Quality Palliative Care for all Australians. These Standards tell you what you can expect from palliative care services. To find out more about the Standards, Click here (PDF 72Kb).
Terminology can be confusing. This website has used the following terminology:
- terminal illness - an illness which is progressive and has no cure
- life threatening illness - an illness which is very serious - a person may recover, or the illness may become terminal.
Sometimes, in other forums, the terms "life limiting" or "life shortening" are used instead of "terminal".
This website was developed by PCA with funding from the Australian Government Department of Health and Ageing. PCA is the peak national body representing the interests of people living with a life threatening illness. PCA aims to increase access to services for people living with a life threatening illness and their families and carers. To provide feedback on this website, click here.