Palliative Care Victoria

An ideal approach to managing the health care system when you are living with a terminal illness is to pursue the curative treatment that is available but to consider palliative care support at the same time. This may help you to make the most use of resources that are available to you.

Often, hospitals and other services will offer out of hours service, crisis support and other resources for people who have been identified as receiving palliative care services. There are also additional pharmaceutical benefits and access to medications for people who are identified as receiving palliative care services, whether this is through your GP, consulting physician or a specialist palliative care service.

If you are interested in finding out more about palliative care either in a hospital, at home or in an aged care facility contact your doctor or your local palliative care service.

Other ways of getting the best health care include:

Talking to your doctor as they can be a great support and it is important to discuss concerns, ideas and plans.

Being aware of and talking to the different health professional groups.

Knowing what to do when unhappy with the health care system

Talking to your doctor

Here are some suggestions for what you can do to get the most out of meeting with your doctor :

• Make a list of questions – Write down any questions or concerns, even if they seem insignificant or silly.
• Keep a diary – Keep a record of  how you are feeling each day and share this with the doctor or use it to summarise how you are managing.
• Ask for more information – It is important to say you don’t understand something and ask for more information.
• Bring someone along with you – Bring someone along for support and with whom you can discuss
  the meeting afterwards.
• Take notes – Write down your questions on one side of a page and leave space on the other side to
  fill in the answers.
• Tape record – With the doctor’s permission, record the meeting so it can be listened to later.

More information on talking to your doctor is available and includes online booklets and tip sheets.

Health professional groups

Medical practitioners

Your physician or surgeon - Will diagnose and tell you about the disease you have. A physician is a specialist in an area of medicine. Some examples are: an oncologist (specialises in the diagnosis and treatment of cancer), a neurologist (specialises in the diagnosis and treatment of diseases of the nerves) and a respiratory physician (specialises in the management and treatment of lung diseases).

Your general practitioner - When you leave the care of a hospital and/or physician you will be referred back to your general practitioner (often called a family doctor). The general practitioner is the key medical doctor for all community care (that is, all care when you are at home).

A palliative care consultant - A palliative care consultant is a medical doctor who has specialised in the care of people living with a terminal illness.

Psychiatrists

If you feel you would benefit from talking to a psychiatrist, speak to your doctor about this. Psychiatrist’s fees are generally covered by medicare. Ask about any gap fees that may need to be paid.

Nurses

Each region in Victoria has palliative care nurse specialists and/or consultants who can speak with you about your special needs. Contact the palliative care service in your region to discuss this further.

Other professional groups

The role of Social Workers, Pastoral Care Workers and the Volunteers in Palliative Care is outlined
within each leaflet.

For more information on the different services / professional groups available contact the palliative care service within your region.

Other therapies

Complementary therapies – are used as well as conventional medical treatments to improve your overall feeling of well being. Many palliative care services now provide therapies such as aromatherapy, massage and music therapy as many people say that these promote a sense of well being and can complement other treatments used to manage the symptoms of illness. There are many useful websites on complementary therapies.

Contact the palliative care service within your region to find out what therapies are available and if there are any associated costs.

Problems and complaints

Is there is a lack of communication between you and the care provider? Does there seem to be poor understanding by the care provider of your needs?  Is there a general breakdown in communication? Simple communication problems are often the main cause of dissatisfaction with health care services.

If you decide to deal with the issue directly yourself, choose a time when the health care professional is not pushed for time. You may like to make an appointment to discuss the issue and perhaps begin the discussion with ‘I am not feeling happy about…could we talk about it and try and make it better.’ This gives the person you are talking to a chance to understand your concern.

If you do not feel you can deal with the issue directly, or feel that your efforts to deal with it have not helped ring, email or write to Palliative Care Victoria to discuss the issue. The staff at PCV will advise you about the best way to resolve the issue. All contact will be treated confidentially.

The Office of the Health Services Commissioner receives and acts on complaints about any health care provider in Victoria. Ring the office on (03) 86015200 and ask for assistance on how to formulate your complaint.