People often do not want to talk about palliative care. They may be scared about what having that conversation means, or that it will it upset the person they are talking to. This is all understandable. However, learning about, and planning for, palliative care can ensure people, and their loved ones, experience the best quality of life and support when living with a life-limiting neuromuscular condition.
- What is palliative care?
- When to start thinking about palliative care
- How to start planning for palliative care
- Palliative care services
- National Palliative Care Services Directory
- Palliative care and carers
- Palliative care for children and young people
- Planning for end-of-life
- Advance Care Plan
- Advance Care Directive
- Important definitions
- Where to find further information
What is palliative care?
Palliative care means the treatment, care, support of people living with a life-limiting illness. It encompasses much more than the care provided in the last days of a person life. It’s about supporting someone with a life-limiting condition to achieve the best quality of life right from the early stages of their diagnosis.
Palliative care also goes beyond care for the person with the condition, also supporting and caring for family and friends.
According to the Australian Government Department of Health, the aim of palliative care is to help a person have a good quality of life. This includes making sure people receive the care to live well, which may include:
- managing the physical symptoms a person may experience
- providing emotional, spiritual and psychological support
- ensuring families are appropriately supported.
For a person living with a neuromuscular condition, conversations about palliative care should start soon after diagnosis, focusing on supporting the person’s quality of life. Discussions should include:
- counselling support to assist in the processing of a diagnosis, and other major life changes or transitions
- treatment/management plans and options
These initial plans may change as a person ages or their neuromuscular condition progresses.
Plans and conversations should involve loved ones so that they are aware of plans and wishes and should be appropriate to the person’s age and stage of the condition. Ideally, conversations about treatment, care and quality of life will commence before a person’s condition changes or enters a specific stage.
When to start thinking about palliative care
The decision about when to start the conversation about palliative care is an extremely personal one and will differ from person to person, and condition to condition.
Some people will benefit from receiving palliative care service from the time they are diagnosed. This gives people a feeling of control over the uncertain future they are now facing, as well as relief that loved ones won’t be left with the burden of making the difficult decisions in the future.
Others may find comfort in connecting with a palliative care service in the early stages of their condition, to start planning for the future and for reassurance that their preferred care and support will be available when required.
Some people may find it too confronting or overwhelming to talk or think about and may not want to consider palliative care until their condition progresses.
It’s important to recognise that planning for or receiving palliative care does not necessarily mean the end of life is imminent. Palliative care can be provided for many years and people may move in and out of palliative care services depending on how stable their condition is.
How to start planning for palliative care
To plan for palliative care, people need to have thought about what it is they want and/or need. Working this out can be a daunting task in itself.
Palliative Care Australia’s Dying to talk website has discussion starters that help guides people through the steps they can follow to start the process of planning for the future.
The Australian Government Department of Health encourages people to think about what you want to help them understand their own needs and wants, in preparation for making decisions about future care.
Palliative care services
Palliative care services are provided by a range of different health and allied care services and may include nursing, physiotherapy, speech pathology, medical support, counselling and personal care. The types of services a person uses will be individualised and based on their needs.
National Palliative Care Services Directory
The National Palliative Care Services Directory, administered by Palliative Care Australia, provides information on:
- specialist palliative care services and providers
- services that provide general palliative care such as general practices and allied health
- organisations and community support agencies who provide services to people living with a life-limiting condition and/or their carers/families.
Palliative care and carers
Supporting a family member through palliative care and end-of-life care can be very difficult for families. There is a range of resources, information and support available for carers, including:
- Planning for the end of life, The Australian Government Carer Gateway
- I’m a carer, Palliative Care Australia:
- Palliative care for carers, Department of Health
Palliative care for children and young people
Palliative care for children and young people is different to care for adults. For further information and support see:
- Palliative care for children and young people, Department of Health
- Palliative Care Australia’s Paediatric Palliative Care website, with information for carers and health professionals, including information in different languages
Planning for end-of-life
When living with a neuromuscular condition, end-of-life care will need to be considered at some point. End-of-life care refers to the care given to people with a life-limiting condition who are facing the end of their life, and their families. It involves bringing together a range of health professionals to help a person live out their life as comfortably as possible. Palliative care is different from end-of-life care, but end-of-life care is an important part of palliative care.
Conversations about end-of-life care can be tremendously hard conversations; no-one wants to think or plan for this time in their life. However, these conversations are really important in ensuring everyone understands the person’s wishes. Having previous conversations about palliative care can make end-of-life conversations easier. Plus, there are a number of supports and resources that are available to help start this important conversation. These include:
- Start the Conversation, Department of Health:
- How to Start the Conversation, Advance Care Planning Australia
- Dying to Talk, Palliative Care Australia:
Advance Care Plan
An Advance Care Plan should form part of palliative care conversations and allows people to plan for their current and future health care. It can also involve any non-medical care and lifestyle decisions they want to be considered. Advance Care Planning should involve talking about what is important to the person, and their life and health preferences. It is important for people to let family and friends know their preferences, as this can help them make decisions about their care if they are unable to.
Advance Care Planning should start early and continue through life, as a person’s condition progresses and preferences may change.
Although an Advance Care Plan is not legally binding, there are different requirements in each state. For further information:
Advance Care Directive
An Advance Care Directive is a formalised version of an Advance Care Plan. It outlines a person’s preferred future medical treatments and procedures. An Advance Care Directive only comes into effect when the person is no longer able to make decisions for themselves.
The aim of an Advance Care Directive is for a person’s family, friends and supporting health professionals to know what they want when they can no longer tell them themselves.
An Advance Care Directive is a legally binding document and can only be made by people over 18 years of age with the capacity to make everyday decisions on things such as financial and legal matters.
Advance Care Directives differ from state to state so it is important for the person to understand the requirements in their location. Advance Care Planning Australia has more information about forms and requirements in each state and territory.
A will is a legal document that outlines a person’s instructions for their assets and belongings when they pass away. Wills are important for everyone to have because without one, the law decides what to do with a person’s assets. Wills should be checked by a Solicitor or by the Public Trustee, even if it was made online.
For information on Wills and how to develop one see the Australian Government website. The Public Trustee can also provide information specific to each state or territory.
Enduring Power of Guardianship
An enduring power of guardianship is a legal document, which enables you to appoint a person of your choice to make personal, lifestyle and treatment decisions on your behalf if you lose the ability to. They cannot make property or financial decisions for you.
Enduring Power of Attorney
An enduring power of attorney is a legal document, which allows you to appoint a person or an agency of your choice to make financial and/or property decisions on your behalf. They cannot make personal, lifestyle or treatment decisions on your behalf.
Office of Public Advocate/Guardian
The Public Advocate (or Guardian in some states) is an independent statutory office appointed to promote and protect the rights of adults with decision-making disabilities to reduce their risk of neglect, exploitation and abuse.
There is an office in each state, which can provide further information about their role and Enduring Power of Guardianship and Enduring Power of Attorney:
Where to find further information
- Australian Government Department of Health’s Palliative Care information
- Advance Care Planning Australia
- Palliative Care Australia
- Palliative Care ACT
- Palliative Care NSW
- Palliative Care NT
- Palliative Care Queensland
- Palliative Care SA
- Palliative Care Tasmania
- Palliative Care Victoria
- Palliative Care WA