Demystifying palliative care
Many people are concerned when they hear the words palliative care. You might think it will only be offered to you when you are in your last weeks or months of life. You might think it means you can no longer receive treatment aimed at controlling your cancer and prolonging your life. You might think it means you won’t see your oncologist, breast care nurse or other members of your treating team. This is not the case.
When told what palliative care services can actually provide, many people are much more comfortable with the idea.
- How palliative care can help you and your family
- The benefits of palliative care
- Your palliative care team
- The earlier you access care, the better your quality of life
- More information
I’m having palliative care now and I’m not at the end of my life … I am teaching my family that palliative care isn’t a scary thing … It’s great. This is what I need. The more I know about it and the more information I have about it, the better equipped I will be.
Palliative care helps people live as fully and as comfortably as possible when living with a serious illness that cannot be cured, such as metastatic breast cancer. It is a family-centred model of care. It is there not just for you, but for your family and friends as well. Your family and carers can also receive practical and emotional support, as well as physical support. Many people find that support for their family is as valuable as the direct support they receive.
I always thought of it [palliative care] as something for me, but hadn’t thought it was there to support my family. – Kate
Palliative care specialists can identify and help you manage your physical symptoms, such as pain, and can also help with your emotional, spiritual and social concerns. Because palliative care is based on your individual needs, the services offered will differ for each person, and may include:
- Relief of pain and other symptoms (e.g. vomiting, shortness of breath)
- Provision of equipment needed to help you live as independently as possible at home (e.g. wheelchairs, special beds, shower chairs)
- Assistance for families to come together to talk about sensitive issues (e.g. counselling for your children)
- Links to other services (e.g. home help, financial support)
- Support for people to meet cultural obligations
- Support for emotional, social and spiritual concerns
- Counselling and grief support
- Referrals to respite care services
Your GP, breast care nurse and other health professionals can play an important role in providing palliative care, as can your family and informal carers. If your symptoms become difficult to manage, your usual health care providers may seek advice and support from palliative care specialists. In some cases a short inpatient stay may be needed to fine tune pain management, for instance. This can have the additional benefit of giving your family and carers time to recharge, knowing that you will be well cared for.
Palliative care is provided where you and your family want to receive the care, wherever possible. This may include:
- at home
- in hospital
- in a hospice
- in a residential aged care facility.
Early access to palliative care can ensure that you have all the supports you need to maximise the quality of your life and your mobility for as long as possible.
Palliative care can be used to help prevent and relieve symptoms and side effects related to cancer and its treatment, such as pain, nausea and fatigue. Controlling these symptoms is an important part of treatment. You should never hesitate to tell your health care team about any pain or other symptoms you may experience.
Getting to know your palliative care team soon after the diagnosis of metastatic breast cancer can help make you feel more comfortable in seeking their support at a later time if you have symptoms that are not being well managed.
At diagnosis I was given a team that included a palliative care nurse and that really stunned me and the rest of the family. [But] in a way it helped [me] to come to terms with it. It gave me a perspective on what I have to do and achieve in the next while.
You might also find it reassuring to hear about the extent of the support available to you.
The wheelchair and shower stool are strategies to manage my energy reserves in the way I want to. I use [my energy] to be with my kids, not to stand up in the shower. – Vanessa
Not feeling your best and needing to use health services can be depressing, so having other people who can assume roles and responsibilities and advocate on your behalf, as your palliative care team can do, can be empowering. Your palliative care team can also help interpret your medical reports and even attend oncology appointments with you.
For more information on palliative care, see Cancer Australia’s Finding the words: starting a conversation when your cancer has progressed.
Planning ahead can be difficult, but once you start the conversation you may find it easier to talk about your feelings and wishes than you had expected. BCNA's Getting your affairs in order is a free e-booklet for women who have been diagnosed with metastatic breast cancer. It provides information to help you plan for the future, including:
- Talking to your loved ones about your wishes
- Your preferences for your care at the end of life
- Practical advice - for example, guidance on writing a will and Powers of Attorney.
It also contains a comprehensive list of resources and support services. You can download Getting your affairs in order here.