Palliative care may be provided by your specialist, doctor, community nurse and other members of your health care team. However, if you develop problems that are complex or difficult to manage, then your doctor may refer you to health care workers who have training and experience in palliative care services, or to a specialist palliative care team.
Given your experience with cancer, the list of health workers providing palliative care may well be familiar. In this case, all of them will have been trained to meet your needs at this stage of your illness, and be more focused on your quality of life than on a cure.
Your doctor or treating specialist (if you are using one) is likely to be co-ordinating your care in the first instance. This doctor will oversee your care at home, liaise with the community nurse and refer you to other support people if needed.
If and when your care becomes difficult for your own doctor to manage they may refer you to specialist palliative care doctor or team and if necessary, arrange your admission to a hospital, palliative care unit or hospice.
Palliative care specialists are doctors who can prescribe treatment for your symptoms, liaise with your oncologist and doctor and refer you to other services. These doctors may or may not be part of a specialist palliative care team or service.
Palliative care nurses may either work for the community nursing service or in a specialist palliative care team. They may monitor your symptoms and help you with your medications, dressings, personal hygiene and day-to-day care.
To access community nurses who do palliative care, ask your doctor to refer you or contact them through your local community health centre.
Social workers can provide social and emotional support to you, your carers and your family. They can help you find services such as in-home respite care, meal deliveries, personal alarms, laundry services and financial assistance.
These mental health workers can help you with relationship or family issues, show you ways of dealing with anxiety and depression, and provide grief counselling to your family and caregivers.
Occupational therapists can suggest modifications to your home to aid your independence and ensure your safety. They can also provide special equipment and show you how to use it, as well as advise your caregivers on lifting, transport and hygiene.
Palliative physiotherapy can help you manage pain, incontinence, lymphoedema (swelling caused by lymphatic problems) and other symptoms. A physiotherapist can also help you recover from operations and work on your mobility.
Dietary advice may become more important as your illness progresses, especially if your appetite and digestive system are not co-operating with your will to remain as healthy as you can. A dietician can help with eating plans and nutritional supplements, among other things.
Also available are the many people who donate time and can take you to your medical appointments or shopping, help you with housework and gardening and can provide respite for your caregivers.
Although many health care workers offer palliative care as part of a wider range of services, some health professionals specialise in such care. They are usually part of a specialist palliative care team or service, and can include doctors, nurses and any of the health professionals listed above.
Members of these teams are highly experienced in helping people with difficult and complex problems and are very good at talking with people about their condition.
You can talk to your doctor or nurse if you would like access to a specialist palliative care service, or you can contact a service directly. Palliative Care Australia has a National Palliative Care Service Directory (see contact details at the end of this chapter). Receiving care from a specialist palliative care service does not mean you need to stop seeing your other doctors. Palliative care can complement other forms of treatment at any time during your illness.
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