What families should expect from palliative and end-of-life care in aged care

Moving into aged care usually follows a decline in health. For most people, the home becomes where their care changes over time, and where life eventually ends. Many families aren’t sure what good care looks like when that happens. Or when to start asking. 

Palliative care and end-of-life care are different

Palliative care supports people whose illness no longer responds to curative treatment. It’s based on a person’s needs, not their diagnosis or how long they may have left. It looks different for everyone, and it changes over time.

End-of-life care is the final part of life, when death is expected within hours, days or a few weeks. But many families only think of palliative care when death is close: good care starts much earlier.

What quality palliative care looks like

It begins with many conversations. Early, and with the person at the centre.

Good care considers:

• What matters to them
• Their comfort and changing needs as illness progresses
• Their wishes, including advance care planning
• Their physical, emotional and social needs, and
• Clear communication with them and, where appropriate, their family.

These conversations keep happening – they’re not ‘one and done’. Quality care starts with understanding the person, not just their condition. 

What you should expect to be asked

In residential care, staff should talk with you about:

• Resuscitation and transfer to hospital
• Where the person would prefer to be cared for and to die
• Which treatments are acceptable, and which are not
• What to do if medicine stops working, and
• What they would want if they became more unwell, and
• Who the person wants to talk for them if they’re unable to communicate themselves.

The home may be their final home. And while it might feel uncomfortable, talking about dying is a normal part of planning care. It can be hard, and families often need time to take it in.

Questions you can ask care teams 

• How will you recognise changes in their needs?
• How will you make sure their wishes are upheld at end of life?
• How will you assess their comfort and symptoms?
• Does the GP oversee palliative care, or do you use a specialist service?
• How will you make sure medicines are available quickly when someone is dying?
• How many staff are on, including evenings, weekends and nights?
• How will we be kept informed, and who can we speak to with concerns?
• How do you know the palliative care you provide is good?

That last question matters because it leads to how a home checks its own work. 

How does a home know its care is good?

Aged care teams talk with residents and families, make observations, assess needs and plan care every day. When that information is collected consistently, a home can see:

• Who is developing palliative care needs
• Who is nearing end of life
• Whether people’s needs are changing
• Where care is working well, and
• Where it could improve.

This raises another fair question: how can providers track their answers?

Measuring good care

The Palliative Aged Care Outcomes Program (PACOP) helps participating aged care homes measure and understand residents’ palliative care needs and outcomes. Using the same information over time, homes can see where and how to improve palliative and end-of-life care.

PACOPConnect is the digital system behind the program. It helps homes collect, understand and use that information as part of making improvements. Because quality care should be visible in the resident’s experience, so when a provider understands residents’ needs, measures outcomes and acts on what it finds, it’s better placed to respond to what matters to residents and their families.

Know what palliative and end-of-life care looks like. Feel confident asking your provider how they support and improve it.

Learn how PACOP supports quality palliative care in aged care by visiting https://www.uow.edu.au/australasian-health-outcomes-consortium/pacop/