People aged 65 or over with life-limiting illness should be able to receive the care they need at home, without their support being constrained by fixed funding and time restrictions, according to Ageing Australia and Palliative Care Australia (PCA).

The two peak bodies have welcomed a Senate Community Affairs References Committee recommendation to abolish the funding and time restrictions placed on the Support at Home End-of-Life Pathway and develop a flexible, clinically guided, needs-based model for end-of-life care at home.

Ageing Australia and PCA said the recommendation recognises that care at the end of life should be shaped around a person’s needs, not arbitrary limits or uncertain predictions about how long they may live.

Genevieve Doyle from the Good2Go Collective in North East Victoria said, at present, someone who is nearing end of life and wishes to stay home rather than die in hospital or be admitted to aged care can apply for funding.

She said the criteria includes a certain level of poor function (in bed more than 50pc of the time, deemed to have three months or less to live - as decided by their doctor).

The doctor can complete a form, but the fund is administered through a home care provider.

There is $25,000 available that can be spent on home care, personal care, nursing.

"What we’ve heard is that there is a trend of people outliving the funding," Ms Doyle said.

"There was a possibility of extending for a further four weeks, but we've heard of at least two patients on the programme who are still there six months later.

"This puts enormous pressure on the family who have been doing their best to keep the person at home with the extra supports, but you can imagine how awful it would be to finally have enough support, and then have it taken away."

Unsurprisingly, this situation was quite common.

"As someone approaches the terminal phase of their illness, they require round the clock care," Ms Doyle said.

"It really does take a team to adequately care for someone in this state, as it is also mentally, physically and emotionally draining to become the carer for someone you love.

"If someone is receiving an aged care package, the funds run out pretty quickly if you start to add in regular personal care and frequent visits.

"All these things cost money."

In the worst case scenario the person may end up in hospital, either through some crisis (a fall, infection, carer illness) or will need to be placed in residential care, if they can access a bed in a timely way.

"Otherwise, the family/carer trudges on with little or no respite and become ill themselves," Ms Doyle said.

"It is not uncommon to see carers of someone who has needed a lot of support prior to their deaths, present shortly after with some serious illness themselves that they simply did not have time to deal with while their loved one was dying."

Ms Doyle's advice was simple.

"Look ahead to what may be coming down the track," she said.

"Don’t stick your head in the sand and say 'I’ll deal with that when the time comes' because when the time comes, you may be stuck waiting for months to get the support you need.

"Be proactive and take responsibility for your health and your future.

"One great way to do this is to attend a “Hope for the Best, Plan for the rest” workshop which the Good2Go collective host on a regular basis.

"It will give you the tools you need and prompt you to ask the right questions.

"If you fail to plan, you plan to fail."

Ageing Australia chief member experience officer Belinda Allen said older people and their families need certainty, flexibility and practical support when someone is nearing the end of life.

"At the end of life, people and families need care that can respond to their circumstances, not a model that puts arbitrary limits around support," Ms Allen said.

"Access to aged care at home should be based on a person's needs, not a prediction about how long they have left to live.

"Older people who want to remain at home at the end of life should be supported to do so wherever possible, with care that is clinically guided and responsive to their circumstances."

Ms Allen said a more flexible model would also help reduce pressure across the broader health and aged care systems.