Frequently asked questions about palliative care
There are a lot of common misconceptions about palliative care, what is involves, when it can be accessed and where it can be provided. Following are answers to many frequently asked questions that will hopefully help you gain a better understanding of what palliative care is, and how it might benefit you or your loved ones. Palliative Care: It’s more than you think!
Accessing palliative care services
Palliative care can be available to people from the time they are first diagnosed with a life-limiting illness. People can receive palliative care for a long time before they die and may receive it at the same time as they receive treatment, sometimes referred to as supportive palliative care.
Not at all. Palliative care is available to people diagnosed with a life-limiting illness and is often provided in conjunction with active treatment. Palliative care can provide you with the support and tools you need to help ensure that you can meet your goals of care and fight for quality of life.
Palliative care is provided where the person and their family wants to be, where possible. This may include:
- general practice or primary health care clinic
- palliative care outpatients facility
- hospice (a dedicated health facility caring for people approaching the end of life)
- residential aged care facility.
Your palliative care team may include people from a range of health and social support professions and backgrounds including:
- allied health professionals
- social workers
- occupational and speech therapists
- spiritual/pastoral practitioners
- palliative care trained volunteers.
Palliative care can help you manage your illness, particularly pain and symptoms so you can continue to live life as well as you can, while dealing with your illness. You may need it or want to have it from early in your diagnosis or you may choose to take it up once your illness progresses to a certain stage. You may have an on-off rotation through palliative care through various stages of your illness as you have periods of wellness and illness. Palliative care can mean different things to different people.
Most palliative care services are free, but there may be some costs associated with hospice and hospital care. Charges can vary depending on your state/or territory, your geographical location and the type of care you are seeking.
You should discuss costs with your health care professional.
Palliative care aims to provide the best quality of life until the person dies. Early access to palliative care provides a person with the ability to control their symptoms more effectively and build a therapeutic relationship with their healthcare team and in some cases, has been proven to actually prolong life.
Caring for a loved one can be a rewarding and connecting experience. However, it can also feel overwhelming at times. There are people, information, and resources available to assist families/carers with this role.
In the first instance, it is recommended that carers/families check in with the medical/health team or palliative care team, who can advise you further about the needs/requirements of your loved one.
There are also many not-for-profit (or government-funded) organisations available that can provide free information, resources, support and training for families/carers. It is best to review each one to see what suits your needs and requirements best. Some of these are:
There may be a lot of information available about palliative care and the care someone may receive at the end of their life. It is important to ensure that the information is reliable and relevant to your situation. Knowledge about what might be available for your particular situation will give you a greater sense of control. The best source of health information is your health care provider. Don’t be afraid to ask them for information.
As a first step, you can always find information on the Palliative Care Australia website at www.palliativecare.org.au
Medications and pain management
Not everyone with a life-limiting illness will experience pain. Most pain can be relieved or controlled. Bringing pain under control means assessing all aspects of pain, monitoring and managing it. Effectively, this lets you carry on with your life and live as well as you can.
Some people fear that being prescribed opioid medicines means that they’re closer to the end of life. Relieving your pain is about improving your quality of your life.
Sometimes people worry that the side effects of their opioid medicines will be worse than their pain. Not everybody experiences side effects and it is important to remember that side effects are not an allergic reaction, and are often temporary and manageable.
Common possible side effects of opioid medicines include:
- constipation – can be relieved by taking laxatives
- nausea and vomiting – often temporary and can be relieved with anti-emetic medication
- drowsiness or confusion – may occur for only a short time after starting treatment or increasing the dose
- dry mouth – may improve with time, speak to your pharmacist for help if this occurs.
Tell your doctor or health professional promptly about any side effects, their severity and when they occur. They may be able to alleviate them by changing the dose or the medicine.
Opioids can be addictive when used for incorrect purposes. However when used appropriately under the guidance of a health practitioner, it is not normally a concern for palliative care patients. It is likely that tolerance may develop or pain may increase as your illness progresses, which may mean your health professional increases your opioid doses; this is a normal part of pain management treatment.
Some people stop taking their pain medicines because they are worried the medicines will mask the progression of their illness so they won’t know how they are really feeling. Pain medicines will not stop your health care team or you from monitoring the progress of your illness because there are other signs and symptoms of progression that will be monitored.
Some people only tell their doctor about their pain when it gets really bad. However, it is usually easier to manage pain in its early stages and that provides a good start to ongoing management of pain and symptoms. It is best to be honest with your health team about any pain you are experiencing.