This booklet has been prepared to help you understand more about cancer that has spread from its original (primary) site or has come back (recurred).
Palliative care is an approach that improves quality of life for patients and their families facing problems associated with a terminal illness. Palliative care service providers can help prevent and relieve suffering by treating pain and other symptoms including physical, emotional, social and spiritual.
Cancer Council WA supports palliative and hospice care for people living with a life limiting or terminal illness like cancer or other chronic diseases.
We encourage you to contact Cancer Council 13 11 20 to speak to one of our nurses or Palliative Care WA Inc on 1300 551 704 during business hours with any questions.
Understanding Palliative Care
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Palliative care helps people with advanced cancer live as fully and as comfortably as possible. The role of palliative care is to:
- Identify and help you manage your physical, emotional, social and spiritual needs
- Help you achieve the best quality of life that you can for as long as possible
- Help you feel in control of your situation and make decisions about your treatment and ongoing care.
- Palliative care service providers can also help you organise financial support, advance care planning discussions, carer support, bereavement support, equipment etc, depending on what's needed.
You can learn more about palliative and end of life care at Palliative Care WA Inc or call 1300 551 704.
It is best to speak with your doctor, medical specialist or health care professional about palliative care services that can help you.
You can have palliative care at home, in a hospital, at a hospice or an aged care facility.
A hospice is a place more like a home than a hospital where you can be cared for by trained staff. You can move between these places if your needs change. Often the person, family or carer can choose where to have palliative care. It also may depend on what is available in your area.
If you are cared for at home, Silver Chain can help you and your family with medical support, nursing care and equipment hire.
Palliative care is useful at all stages of advanced cancer and can be provided alongside active treatment for cancer. Starting palliative treatment from the time of diagnosis can help improve your quality of life. It is not just for the last weeks of your life.
The state government funds core palliative care services so that they are free in the public health system, whether you receive care at home or in a public setting. However sometimes you may need to contribute to the costs of care. Some examples of additional costs are;
- Hiring specialist equipment for use at home
- paying for medicines
- paying for your own nursing staff if you choose to stay at home and require 24-hour assistance
- paying an excess if you have health insurance that covers palliative care and you go to a private hospital.
- accessing respite services that charge a fee
- paying the fee of a private allied health professional, suchas a psychologist, that isn't fully covered by Medicare.
- paying for complementary therapies, such as massage therapy and acupuncture.
(If you are admitted to a public hospital, palliative care unit or other facility and you have private health insurance; contact your health fund to check what is covered. Talk to your social worker about what other financial assistance is available for patients and carer's from Centrelink and other organisations in your area.)
- Cancer Council WA Counselling Services provides face to face and telephone counselling in the metropolitan and regional areas. If you, a family member or carer would like to access this service please speak with a nurse when you call Cancer Council 13 11 20.
- WA Psycho-Oncology Service is a free state wide clinical psychology service for Medicare eligible adult Western Australians diagnosed with cancer and their immediate care-givers. Please call (08) 6457 1177 or email: firstname.lastname@example.org
- Breast Cancer Clinical Psychology Service offer a free counselling service for adults affected by breast cancer and their families in WA. Phone: Royal Perth Hospital (08) 9224 1629, Sir Charles Gairdner Hospital (08) 6457 4590, Fiona Stanley Hospital (08) 6152 4125.
- Cancer Council provide telephone support groups for people with advanced cancer. Contact 1300 755 632 or email: email@example.com
- Online discussion forums visit the online community to connect at any timewith other people affected by cancer.
- Carers WA provide a free counselling service and social support events to carers. Call 1300 227 377 for more information.
Where can I get financial advice?
The time and costs associated with cancer treatment can have a significant impact on your financial situation.
Limited financial assistance is available through the Cancer Council WA to eligible cancer patients who are undergoing active treatment or who are palliative, and who meet the financial hardship criteria. To find out if you are eligible, you need to meet with the social worker at your treating hospital or Regional Support Coordinator. If you do not have access to a social worker at your hospital contact the Cancer Council 13 11 20.
The Cancer Council also offers a financial planning service. For more information, please call 13 11 20.
Centrelink financial assistance may be available through benefits and pensions and can help pay for the costs of prescription medicines. You may also be eligible for Centrelink Payments. Carers may qualify for the Carers Allowance (non means/asset tested) and / or the Carers Payment. The Centrelink website will provide you with more information about the options and services available to you.
The Financial Counselling Helpline offers a free telephone service to assist people with financial difficulties.Contact 1800 007 007 or the Financial Counsellor Association of Western Australia website.
Where can I get practical assistance?
- If you are older and frail or have difficulty with everyday tasks or have a disability you may be able to access assistance with a range of day to day activities through the commonwealth funded Home & Community Care program (HACC). To find out whether you are eligible or for more information you can call the Regional assessment service on 1300 785 415 or browse the Western Australia Home & Communication Care Program website and the myagedcare.gov.au
Cancer Council Western Australia Practical Assistance Program is for patients who are not eligible for support from Commonwealth funded services. The Cancer Council may be able to offer some limited assistance through the Practical Support Program. This program provides short term assistance for patients undergoing treatment or management of cancer, or who have completed their cancer treatment in the last six months. Funded by public donations, the Practical Support Program can assist in areas such as light domestic cleaning, gardening and child care services. To find out if you are eligible, call a nurse at Cancer Council 13 11 20.
- For equipment and aids support contact the Independent Living Centre on 1300 885 886.
- Commonwealth respite and Carelink Centres provide free, confidential information about carer respite and other services. Call 1800 052 222.
- Advance Care Planning (863kb) is a process to help the individual understand and plan medical care and lifestyle choices in advance. If they become to unwell to make decisions for themselves, their wishes can still be respected by the health care team, family and carers.
- Appoint a substitute decision maker. You can appoint an Enduring Power of Guardianship to make important personal, lifestyle and medical decisions on you behalf. You can appoint an Enduring Power of Attorney to make decisions around your financial and property affairs.
- Making a will. A will is a document that records who you would like to receive your assets (estate) after you die. To make a will it is best to contact a lawyer or call Cancer Council WA on 13 11 20 to discuss your elgibility for access to probono legal services.
- You need to speak with your Medical Specialist, Doctor or health care professional about referring you to a palliative care service.
- Silver Chain Hospice Care Service (08 9242 0242) provides palliative care services in the community in Perth and some country area's. You will need a referral from your doctor.
- Hospices are located in different places around the city and regional area's for those who need them. Talk with your usual doctor (or community palliative care team) about how to access services.
- Most major hospitals in Perth have palliative care teams on site - ask your usual care team about arranging a consultation.
- Palliative care can be delivered in residential aged care facilities by the care staff and with support from the Metropolitan Palliative Care Consultancy Service and regional palliative care services.
- Each regional health service in rural Western Australia provides a palliative care service. Please speak with your Doctor or contact your regional palliative care coordinator.
- The Independent Living Centre of WA can help you source equipment: 1300 885 886.
- Palliative care service providers can help organise support for the carer of someone with a life limiting or terminal illness.
- Additional support for carers is available from Carers WA 1300 227 337
- Palliative Caring Booklet, information for family & friends who are caring for a person with a life limiting illness, from Palliative Care WA
- Palliative Care Australia offers a brochure called "How can I support my friend or family member?"
- If you need respite services: Commonwealth Respite and Carelink Centres:
1800 052 222 (free call) during business hours or, for emergency respite support outside standard business hours, call 1800 059 059 (free call)
Everybody experiences the loss of someone close to them differently - there is no right or wrong way to respond. You may have new or unpredictable feelings including sadness, anger, anxiety, relief or guilt - these are normal and will probably subside over time.
You may feel disinclined to see friends or family or go to work, life may seem disorganised, it might be difficult to eat or sleep or concentrate, you might have worrying dreams - these are normal responses. It can be helpful to spend time with trusted friends or advisers to express in some way what you are experiencing.
- "Understanding Grief" provides information on the grieving process, what are some of the feelings you may experience and for how long?
- Short-term counselling is available through Cancer Council WA 13 11 20. If our counselling services are not appropriate, the nurses can direct you to other services.
- Grief Centre of Western Australia offer counselling, bereavement and support groups. For more information call (08) 9444 7659 or firstname.lastname@example.org
- If you need to talk to someone contact Lifeline on 13 11 14.
- If you have lost a child of grandchild to cancer, Red Kite offer free grief counselling services and support groups, call 1800 733 548 or email email@example.com
- If you are 12-25 years old and need support contact Canteen on 1800 835 932
Do you want more general information about palliative care, or to access detailed information resources about palliative care?
- World Health Organisation definitions of palliative care and palliative care for children (part of the United Nations)
- Palliative Care Australia (national peak body for palliative and end of life care) - and microsites
- Palliative Care WA Inc (WA peak body for palliative and end of life care)
- Caresearch (pages for people with life limiting or terminal illnesses, carers, family and friends)