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 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.
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.
Read more about the costs of palliative care here or discuss 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.
Advance care planning is the process of planning for your future health care including the health care you would or would not like to receive if you were to become seriously ill or injured and are unable to communicate your preferences or make decisions about the care you receive at the end of your life.
As part of the Advance Care Planning process you may wish to document your preferences in a formal plan known as an advance care directive. Creating this document is the best way to ensure your preferences are known and respected by your family and health professionals. You may also want to upload your document to your My Health Record.
Before documenting your plan, you should ensure you have an understanding of the requirements in your state or territory. See Advance Care Planning Australia website.
A substitute decision-maker makes decisions for someone who has no decision-making capacity. You may wish to appoint a person to be a substitute decision-maker in the event that you are no longer able to make medical decisions. You may also wish to have a support person who helps you if you have reduced capacity to make decisions.
For further information on Advance Care Planning you can visit the Advance Care Planning Australia website or call the National Advance Care Planning Support Service on 1300 208 582, 9am – 5pm Monday – Friday (AEST).
The Oceanic Palliative Care Conference (OPCC) is the pre-eminent event for all those passionate about palliative and end-of-life care. OPCC is a biennial event with the next being hosted at the International Convention Centre in Sydney, NSW, Australia from 12th – 15th September 2023.
Abstracts for 23OPCC will open (approx.) September 2022
National Palliative Care Week (NPCW) is an annual event seeking to raise awareness about the many benefits of quality palliative care. Traditionally held in the last week of May.
If you or your organisation plans to hold a fundraiser or event during the week, please feel free to send us all the relevant information to firstname.lastname@example.org so PCA can help you promote your event.
Be sure to also contact your State or Territory Member Organisation.
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.
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Caring for a loved one can be a rewarding and connecting experience however it can also, at times, feel overwhelming. 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.
Voluntary Assisted Dying
No, palliative care and voluntary assisted dying are different.
Palliative care affirms life and regards dying as a normal process that intends neither to hasten nor postpone death. Palliative care improves the quality of life of patients and their families.
Voluntary assisted dying requires a medical practitioner to prescribe and potentially directly administer an approved substance for the purpose of causing death where the person meets the eligibility criteria outlined in the relevant legislation and has sought this outcome voluntarily.
If palliative care health professionals or organisations choose to offer and provide voluntary assisted dying for their patients with life-limiting illness, this is a practice separate from palliative care.
Palliative care is person and family-centred care with the primary goal to ensure patient safety and to optimise the quality of life, as palliative care helps people live their life as fully and as comfortably as possible when living with a life-limiting illness. When aligned with a person’s preferences, withdrawing or refusing life sustaining treatment (including withholding artificial hydration) or providing strong medication(s) to relieve suffering, do not constitute voluntary assisted dying.
Palliative Care Australia has developed two documents that provide some guidance about voluntary assisted dying. The first is a Position Statement Palliative Care and Voluntary Assisted Dying.
PCA has also developed a guidance document: Voluntary Assisted Dying in Australia: Guiding principles for those providing care to people living with a life-limiting illness