7 Warning Signs It’s Time for In Home Palliative Care

When someone is living with a life-limiting illness, there can come a point when managing everyday life at home becomes increasingly difficult. Personal care, mobility, meals, medication routines, household tasks and emotional support may all require more attention.

That does not necessarily mean a person is in their final days or weeks. Palliative care can begin much earlier and can be provided alongside other medical treatments. In Australia, palliative care is available to people of any age with a serious illness and can be delivered at home, in hospital, in a hospice or in residential aged care.

For families, the difficult part is often recognising when existing support is no longer enough.

Here are seven changes that may indicate it is time to discuss in home palliative care with the person’s healthcare team.

What is in-home palliative care?

In home palliative care is care and support provided in a person’s home to help manage the physical, emotional, social and practical effects of a life-limiting illness. It can involve different health professionals and support workers, depending on the person’s needs, preferences and available services.

Importantly, palliative care is not simply about the final stage of life. Australian Government guidance states that people may begin palliative care soon after diagnosis and may receive it for years when needed. It can also be provided alongside treatments intended to manage the underlying illness.

Understanding how care can change over time may also help families recognise what support might be appropriate at different points. Our guide to the 5 Stages of Palliative Care provides further context on how palliative care needs can evolve as a person’s condition progresses.

Clinical palliative care and disability support are also not the same thing.

A specialist palliative care team may provide clinical assessment and symptom management, while disability support can assist with practical daily activities such as personal care, mobility, meals and household routines.

For an NDIS participant, these supports may work alongside the person’s medical and palliative care team rather than replacing clinical care. For an NDIS participant, these supports may work alongside the person’s medical and palliative care team rather than replacing clinical care. NDIS Palliative Care can involve understanding how disability-related support fits alongside a person’s broader healthcare and palliative care arrangements.

AAYDS provides in-home disability support for participants with life-limiting conditions, including personal care, daily living assistance, meal preparation, mobility assistance and household support.

1. Everyday personal care is becoming difficult

One of the clearest signs that additional support may be needed is a noticeable decline in someone’s ability to manage ordinary personal routines.

They may increasingly need assistance with:

• Showering and bathing
• Dressing
• Grooming
• Toileting
• Getting in and out of bed
• Moving safely around the home
• Maintaining usual daily routines

A person who previously managed these activities independently may begin needing another person’s help, more time or additional equipment.

This does not automatically mean they require specialist palliative care. However, a significant or continuing decline in functional ability is a useful reason to review the person’s care needs with their healthcare team.

For people with disabilities, the practical impact can be even greater because existing support needs may increase as their health changes.

In home assistance can help maintain dignity and reduce the pressure on family members while the clinical team manages the person’s medical needs.

For NDIS participants, support with everyday activities can also form part of a broader care arrangement. Depending on the participant’s plan and individual circumstances, NDIS Assistance with Daily Life may help with practical activities and routines that a person is unable to manage independently.

2. Pain or other symptoms are becoming harder to manage

Pain is one of the symptoms families often notice first, but it is not the only one.

People receiving palliative care may experience symptoms such as pain, nausea, constipation, fatigue, breathlessness or delirium. Symptom patterns can vary significantly depending on the person’s illness.

A change is particularly important when symptoms:

• Become more frequent
• Become more intense
• Interfere with sleep
• Make movement or personal care difficult
• Cause anxiety or distress
• Are no longer adequately controlled by the existing plan

Families should not attempt to diagnose or independently change prescribed medication based on these symptoms.

Instead, contact the person’s GP, specialist or palliative care team so symptoms can be assessed and the care plan reviewed.

The role of in home support may then be to help with practical activities while clinical professionals manage symptom treatment.

3. Mobility and transfers are becoming unsafe

A person may start needing more assistance to stand, walk, transfer between a bed and chair or use the bathroom safely.

You might notice that they:

• Spend more time in bed or a chair
• Have difficulty walking short distances
• Need help getting into or out of bed
• Are increasingly unsteady
• Require assistance with transfers
• Are becoming too fatigued to complete normal activities

These changes can increase the risk of falls and place significant physical demands on family carers.

The Victorian Government identifies declining mobility and functional ability as important considerations when managing people receiving palliative care.

A review may identify the need for additional equipment, allied health input, clinical assessment or practical assistance at home.

For an NDIS participant, disability support may also help with appropriate daily activities and mobility-related assistance within the participant’s approved supports.

4. Eating, drinking or preparing meals is becoming difficult

Changes in appetite are common in people with serious and life-limiting illnesses, particularly as illness progresses.

However, reduced eating or drinking should not simply be assumed to mean that someone is approaching death.

There can be many reasons for changes in nutrition and hydration, including difficulty swallowing, poor oral health, confusion, increased assistance needs or a reduced desire to eat and drink.

The important question is:

What has changed, and what does the person want?

A healthcare professional should assess significant changes in eating or drinking, particularly where there are concerns about swallowing, dehydration, weight loss or discomfort.

Practical support can also become important. Someone who is too fatigued to prepare meals may benefit from assistance with meal preparation and household routines.

The goal should not be to force someone to eat. Instead, support should respect the person’s preferences and form part of an appropriate care plan.

5. The person is becoming increasingly tired or spending more time sleeping

Increasing fatigue can gradually change how a person spends their day.

They may:

• Sleep for longer periods
• Need more frequent rest
• Stop participating in activities they previously enjoyed
• Become tired after relatively small tasks
• Spend more time in bed or their favourite chair

Fatigue is common in people living with life-limiting illness and can have multiple causes.

A significant change should be discussed with the person’s healthcare team rather than automatically attributed to the illness.

If everyday tasks are becoming exhausting, practical in home support can reduce unnecessary demands. Someone may need assistance with showering, dressing, meal preparation, household tasks or other routines so they can conserve their energy for the things that matter most to them.

Maintaining meaningful routines and social connections can also remain important. Where appropriate and consistent with an NDIS participant’s plan, NDIS Community Participation may support involvement in social, recreational or community activities that are important to the person’s wellbeing.

6. Family carers are struggling to keep up with increasing needs

Sometimes the strongest warning sign is not a physical symptom experienced by the person receiving care.

It is carer exhaustion.

Family members may find themselves providing more personal care, helping with mobility, preparing meals, managing appointments, maintaining the home and staying awake or available for longer periods.

Over time, this can become physically and emotionally overwhelming.

Australian Government guidance recognises that palliative care can involve support for families and carers as well as the person living with the illness.

If family members are regularly saying:

“We can’t keep doing this on our own.”

that is a valid reason to review the support arrangement.

Additional in-home assistance may provide practical relief while allowing family members to remain involved in the person’s care without carrying every responsibility themselves.

7. The person wants to remain at home, but their support needs are increasing

A person’s preference about where they receive care matters.

For many people, remaining in familiar surroundings can provide comfort and a greater sense of control. Australian Government palliative care guidance recognises that, wherever possible, people can receive end-of-life care where they and their family want it, including at home.

But wanting to stay at home does not mean the family must manage everything without assistance.

A changing care plan may involve several professionals and services working together.

For example, someone may receive specialist palliative care for clinical needs while also receiving practical in-home assistance with personal care, meals, mobility and household routines.

The Australian Government’s Greater Choice for At Home Palliative Care program specifically aims to improve coordination between health services, community support and palliative care providers and to help reduce unnecessary hospital visits.

Does needing palliative care mean someone is dying?

Not necessarily.

Palliative care is appropriate for people with serious illnesses that cannot be cured, and it can begin at different stages of an illness. It is designed to improve quality of life and manage the effects of the illness rather than being limited to the final days of life.

A person can therefore receive palliative care while continuing other treatments.

The timing should be determined by the person’s healthcare needs, goals and preferences rather than by a single symptom.

It is also useful to understand that palliative care and hospice care are not interchangeable terms. If you are unsure about the difference, our guide to Palliative Care vs Hospice Care explains how the two approaches differ and why the terminology can matter when planning care.

As illness progresses, a person may develop several changes at once. Near the end of life, people can become increasingly tired, sleep more, become weaker, eat or drink less, experience confusion or develop changes in breathing. However, these signs vary between individuals and cannot reliably predict exactly when someone will die.

How do you arrange in-home palliative care in Australia?

The first step is usually to speak with the person’s GP, medical specialist or another member of their healthcare team.

The Australian Government states that a referral from a GP, specialist or another healthcare provider is often enough to access palliative care, although arrangements can differ between states and territories.

A practical process is:

1. Discuss the changes you have noticed with the person’s healthcare team.
2. Ask whether a palliative care assessment or referral is appropriate.
3. Explain the person’s preference for receiving care at home, if that is what they want.
4. Review clinical and practical support needs separately.
5. Discuss the role of family carers and whether additional assistance is required.
6. Review the care plan regularly as the person’s condition changes.

Palliative care may involve doctors, nurses, social workers, physiotherapists, occupational therapists, psychologists, aged care workers and other professionals depending on the person’s needs.

For NDIS participants, it is also important to understand the distinction between clinical palliative care and disability-related supports. AAYDS works alongside participants, families, support coordinators and allied health teams to provide practical in-home disability support where appropriate.

Planning ahead can make care at home easier

Families do not have to wait for a crisis before discussing future care preferences.

Advance care planning allows a person to communicate their preferences about future healthcare and identify someone who may make decisions for them if they become unable to communicate or make decisions themselves. The specific legal documents and processes differ between Australian states and territories.

Useful conversations can include:

• Where the person would prefer to receive care
• Who they want involved in decisions
• What matters most to their quality of life
• Treatments they would or would not want
• Who should be contacted if their condition changes
• What support the family may need

These conversations can be difficult but having them earlier can reduce uncertainty later.

What can in-home support look like?

In-home support should reflect the individual’s needs rather than follow a standard checklist.

For an NDIS participant, practical support may include:

• Personal care and hygiene
• Assistance with daily routines
• Mobility and transfer support
• Meal preparation
• Household assistance
• Respite for family carers
• Consistent support workers
• Communication with the broader support team

AAYDS provides in-home disability support in Moreton Bay region and describes its palliative support as working alongside medical and clinical care rather than replacing it.

This distinction is important. A disability support worker is not a substitute for a doctor, nurse or specialist palliative care team. Instead, practical disability support can help a person manage everyday life while their clinical team manages their medical needs.

The most important sign: needs are changing

There is no single symptom that determines when someone needs in-home palliative care.

The more useful question is whether the person’s overall needs are changing.

If personal care is becoming harder, symptoms are increasing, mobility is declining, eating and drinking are changing, fatigue is worsening or family carers are struggling to cope, it may be time to have a broader conversation about support.

Starting that conversation does not mean giving up on treatment or assuming death is imminent. It means making sure the person’s care reflects their current needs, goals and preferences.

If you are supporting an NDIS participant in the Moreton Bay area whose disability-related needs have increased because of a life-limiting condition, AAYDS can discuss practical in-home support options with the participant, family or support coordinator