A different kind of planning
Most families plan aged care around daily needs: help at home, transport, meals, mobility, and safety. But there’s another part of planning that deserves the same attention—end-of-life care.
Not because anyone wants to rush the conversation, but because good planning protects what matters most at the end of life:
- dignity
- comfort
- choice
- and the right to be heard
In late 2025, OPAN (Older Persons Advocacy Network) hosted a webinar focused on exactly this topic—quality end-of-life care and your choices—with a strong emphasis on rights, autonomy, and how families and carers can get support. OPAN+1
This article turns those key themes into a practical, plain-English guide you can use—whether you’re an older person thinking ahead, or a family member trying to support someone you love.
Why end-of-life care conversations feel so hard (and why they help)
End-of-life planning often gets delayed because it feels emotional, uncomfortable, or “too soon.” But families who do plan ahead usually report the same thing later:
It reduced stress.
Because decisions weren’t made in panic, in hospital corridors, or during a crisis.
When wishes are known, the focus can shift from “What do we do?” to “How do we honour what matters?”
The new rights-based Aged Care Act and what it changes
Australia’s aged care system has been moving toward a stronger rights-based approach. The Australian Government Department of Health, Disability and Ageing describes the new rights-based Aged Care Act as putting the rights of older people at the centre of the system, commencing 1 November 2025. Dept of Health, Disability & Ageing+1
OPAN’s end-of-life webinar materials highlight that the new Act recognises the right to quality palliative and end-of-life care, supporting dignity, informed choice, and respectful care. OPAN+1
A separate sector summary from Palliative Care Australia also notes the new Act establishes a right to palliative and end-of-life care for people using or seeking government-funded aged care services, from 1 November 2025. Palliative Care Australia
What “rights-based” should mean in real life
In practical terms, a rights-based system aims to ensure:
- you are listened to
- you can make decisions (including saying no)
- your values guide your care
- your culture, beliefs, and preferences are respected
- and you’re supported to understand your options
My Aged Care also describes these reforms as centred on the rights of older people, with oversight bodies and systems intended to support care that upholds those rights. My Aged Care
Your rights don’t disappear when you’re unwell
Many families assume that when someone becomes frail, confused, or very sick, “the system takes over.” In reality, older people maintain rights in aged care.
Two commonly referenced foundations include:
- the Charter of Aged Care Rights, which sets out rights for people receiving government-subsidised aged care services Aged Care Quality and Safety Commission
- OPAN’s resources on aged care rights and the Statement of Rights under the new Act OPAN+1
Rights are not just words. They should influence everyday decisions: who is consulted, what is explained, what choices are offered, and how concerns are handled.
What “quality end-of-life care” looks like in practice
Quality end-of-life care is often misunderstood as “only for the last few days.” In fact, good palliative and end-of-life care can begin much earlier—whenever someone has a serious, life-limiting illness or increasing frailty.
Quality care commonly includes:
- pain and symptom relief (comfort-focused care)
- emotional and spiritual support
- culturally safe care
- support for families and carers
- clear communication and shared decision-making
- respectful support with eating, drinking, mobility, toileting, and hygiene as needs change
OPAN’s webinar framing focuses on ensuring people can approach the end of life “with dignity and support,” backed by the rights recognised in the new Act. OPAN+1
The most important idea: autonomy and informed choice
A major theme in rights-based care is autonomy—the right to be involved, the right to understand options, and the right to make your own decisions.
That includes:
- choosing comfort-focused care
- asking questions about burdens vs benefits of treatments
- deciding what matters most (comfort, time at home, being with family, spiritual needs)
- and making plans that reflect those priorities
Families often worry: “What if we choose the wrong thing?”
A helpful reframe is: “What would the person choose if they had full information and support?”
A simple planning pathway for older people and families
If you only do one thing after reading this article, do this:
Write down what matters most.
Not just medical preferences—life preferences.
Below is a practical pathway many families find manageable.
Step 1: Start with values, not forms
Talk about:
- Where do you feel safest—home, hospital, aged care home?
- What does dignity mean to you?
- What worries you most?
- What does a “good day” look like now?
- Who should speak for you if you can’t speak?
You don’t need perfect words. You just need a starting point.
Step 2: Choose the right people to be involved
Consider:
- family members (and whether everyone agrees)
- your GP or specialist
- the care team (home care or aged care home)
- and an advocate if you want support understanding your rights
OPAN explains advocacy as providing information and support so older people can have better outcomes in government-funded aged care, and that OPAN supports many older people each year. OPAN
Step 3: Ask the care provider “end-of-life readiness” questions
Whether you are receiving care at home or in an aged care home, ask providers questions like:
- How do you deliver palliative and end-of-life care in practice?
- How do you document and follow a person’s wishes?
- How do you communicate with families when health changes?
- Who is the clinical lead for symptom management and comfort care?
- How do you support cultural or spiritual preferences?
- How are after-hours issues handled?
These questions are not “too confronting.” They are part of quality care.
Step 4: Put key wishes somewhere they can be found
Even the best family conversation can fail in a crisis if information is not accessible.
Aim for:
- one document (even a simple page) listing values and preferences
- key contacts
- and any formal plans you’ve made
What families and carers often need most
OPAN’s webinar focus also highlights that families and carers need meaningful support and resources to navigate end-of-life care effectively. OPAN+1
In real life, carers often need:
- clarity (what is happening medically)
- guidance (what options exist)
- reassurance (that comfort and dignity are valid goals)
- and emotional support (anticipatory grief is real)
A helpful “carer script” for hard moments
When you feel overwhelmed, try one of these lines:
- “Can you explain the options in plain language?”
- “What would comfort-focused care look like here?”
- “What changes should we expect over the next few weeks?”
- “Who do we call after hours if symptoms worsen?”
- “Can we have a family meeting with the care team?”
Where advocacy fits in (without replacing the care team)
Healthcare and aged care providers deliver care. Advocates help ensure the older person’s voice is heard and rights are respected—especially when communication breaks down or families feel unsure.
OPAN describes advocacy as helping older people get the information and support they need for better aged care outcomes. OPAN
If you want to learn directly from OPAN’s content on this topic, OPAN has published the webinar page and a replay/transcript entry for “End of life: your choices.” OPAN+1
How care finding in Melbourne connects to end-of-life planning
Even when families are mainly focused on end-of-life wishes, practical realities still matter:
- Who is delivering day-to-day care?
- How consistent is the workforce?
- How clear are the care plans?
- How does the provider communicate and respond to changes?
For families doing care finding in Melbourne, looking beyond “availability” to “quality and fit” becomes especially important when someone is frail or approaching the end of life. A provider’s approach to dignity, communication, and responsiveness can shape the entire experience.
A provider match that looks fine on paper can feel very different in practice—particularly during emotionally intense periods.
A practical checklist you can use today
Here’s a short checklist many families keep on a fridge or in a folder:
- Names and phone numbers of key contacts
- Current diagnosis and medications (basic list)
- “What matters most” values (3–5 points)
- Who should be contacted first in an emergency
- Preferred place of care (if possible)
- Cultural/spiritual needs
- Questions to ask the provider/care team
It doesn’t need to be perfect. It just needs to exist.
What to do if you feel the person’s wishes aren’t being respected
Start with calm, specific steps:
- Ask for a meeting with the care team (or care coordinator)
- State the person’s wishes clearly (“They want comfort-focused care and to avoid hospital unless necessary.”)
- Ask what will be documented and where
- Request written confirmation of the plan
- Seek advocacy support if communication stalls or you feel pressured
The aim is not conflict. The aim is clarity and alignment with the older person’s rights and preferences.
Closing reflection
End-of-life care planning isn’t about giving up. It’s about protecting what matters:
- comfort
- dignity
- autonomy
- and the right to choose
The new rights-based Aged Care Act places these principles at the centre of aged care, including recognising quality palliative and end-of-life care as a right. Dept of Health, Disability & Ageing+2Palliative Care Australia+2
When families understand those rights—and ask better questions—care becomes more human, more compassionate, and less frightening.
About SSCA (Support Services Connect Australia)
If you are comparing aged care providers and want help choosing the right option, SSCA offers a free care finding service for older Australians and families.
With over 25 years of experience across home and residential care, SSCA can help you find a suitable aged care provider based on your needs, preferences, and location in Melbourne—using clear, easy-to-understand language and respecting your right to make your own decisions.