Some palliative care services needs to have a referral from your doctor, while others can accept a referral from you, a family member or friend, community health centres and local hospitals. Your doctor, or the individual services, will be able to tell you when formal referrals are needed.
There are many myths and misconceptions about palliative care:
Myth: Palliative care is only for people who are dying.Fact: Palliative care is not about dying; it is about living as well as you can for as long as you can. It can be used at any stage during your illness after curative treatment has stopped.
Myth: Palliative care is the same as euthanasia.Fact: Palliative care may not be focused on prolonging life, but it is certainly not there to shorten it. Euthanasia is assisted suicide, whereas palliative care is assisted living.
Myth: Palliative care gives pain relief in increasing doses, which eventually causes respiratory depression and death.Fact: Palliative care services help manage your pain, often using drugs such as morphine. Some people think the use of pain-killing drugs causes early death. Research does not support this. Minor respiratory depression may occur when strong pain killers are introduced but this settles down quickly. Opioid pain killers should be carefully managed so as to relieve pain without causing excessive sleepiness. Palliative care doctors and nurses are trained and experienced in administering such medications to ensure maximum benefit with minimum harm.
Myth: Palliative care achieves nothing.Fact: Palliative care is an active approach to symptom management and emotional and social support. The sophisticated medical technology it uses can control symptoms and improve your quality of life.
Myth: People who are referred to palliative care give up and die.Fact: People who use palliative care may live longer. They also report a better quality of life and more satisfaction with their care. There are also benefits for caregivers and families.
It is sometimes hard to tell your health professional that you need more help. Research has shown that it helps to take a list of questions to consultations with your cancer doctors. That way, you are both focused on what is important and relevant to you at that time.
The Needs Assessment Tool-Patients (117kb pdf) can help you identify your concerns and may be a way of raising palliative care as an option for you.
The following organisations can provide information on palliative care and what services are available in your area:
Alternatively, you can contact the palliative care body in your state:
Other information resources include:
Life, Hope & Reality was developed and written by Afaf Girgis, Claire Johnson, and Sylvie Lambert with funding from the NHMRC and Cancer Council NSW.Last updated 30 August 2015