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Frequently Asked Questions

Frequently asked questions about palliative care

There are a lot of common misconceptions about palliative care. Below are answers to some of the more frequently asked questions. We hope this will provide a better understanding of palliative care.

Is palliative care only available in the last few days before you die?

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.

If I’m referred to palliative care, doesn’t that mean my doctor has given up on me?

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.

Is palliative care just about pain management?

Palliative care is person and family-centred care and will vary depending on each individual’s needs and circumstances. Palliative care offers pain and relief of symptoms associated with a life-limiting illness including breathlessness. Palliative care can also include medication management; advice about food and nutrition, mobility and sleeping; support for emotional, social and spiritual concerns; counselling and grief support; and assistance for families and carers.

Isn’t pain an inevitable part of dying?

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.

Can’t you only receive palliative care in hospital?

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
  • home
  • palliative care outpatients facility
  • hospital
  • hospice (a dedicated health facility caring for people approaching the end of life)
  • residential aged care facility.

Which health care professionals can help me with palliative care?

Your palliative care team may include people from a range of health and social support professions and backgrounds including:

  • doctors
  • nurses
  • allied health professionals
  • social workers
  • pharmacists
  • physiotherapists
  • occupational and speech therapists
  • psychologists
  • dietitians
  • spiritual/pastoral practitioners
  • palliative care trained volunteers.

Why do I need palliative care?

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.

How can I access palliative care?

Palliative care can be accessed through referral from your General Practitioner, medical specialist or other health provider.

To find a service in your local area go to the National Palliative Care Service Directory or you can contact the Member Organisations.

How much does palliative care cost?

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.

Read more about the costs of palliative care here or discuss with your health care professional.

Doesn’t receiving palliative care mean you will die more quickly?

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.

How do I find reliable information on palliative care?

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.

Doesn’t pain medication (such as morphine and other opioids) hasten death?

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.

Will I have side effects from using opioids?

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.

Aren’t opioid medicines addictive?

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.

Will using pain medicines mask knowing how an illness is progressing?

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.

Shouldn’t pain management only start when the pain is unbearable?

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.

 

Palliative Care Australia produces a range of newsletters covering particular projects and the overall work of the organisation. Sign up to PCA’s e-newsletter here.

If you would like to contact us, please do so via pca@palliativecare.org.au

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