Kevin Berry wanted to die at home, and his family was determined to fulfil that wish.

Key points: A Hobart family says they were unable to access after-hours palliative care support for their terminally ill father

A Hobart family says they were unable to access after-hours palliative care support for their terminally ill father The family had to resort to calling the ambulance service several times and consulting Google

The family had to resort to calling the ambulance service several times and consulting Google The Government says the success of a dedicated phone line being trialled in the state's north and north-west is being assessed

The 70-year-old was diagnosed with lung cancer in January.

To prepare for what was ahead, he and his wife of 48 years, Judy, met with the Specialist Palliative Care Service attached to Hobart's Repatriation Centre to talk through his wishes.

But when he started to decline over the March long weekend, it all fell apart.

"Dad deteriorated really quickly, so we had him at the GP on the Friday morning," daughter Rachael Riseley said.

"Then he had a fall on the Friday night, and from Saturday morning onwards we could tell we were near the end."

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She said the family needed assistance and tried to call the centre's palliative care service, but no after-hours service was available.

They rang triple-0 six times that weekend, unsure about what was happening physically and to determine Mr Berry's pain levels.

At one stage on the Saturday he needed to have a catheter inserted, but when they were unable to get a doctor to visit they called an ambulance again.

Kevin Berry's family wanted to honour his wishes to die at home. ( ABC News: Mitchell Woolnough )

It was a six-hour wait, and Mr Berry had to endure a trip to hospital for something the family believe could have been done at home.

"We hadn't been told what to expect towards the end, and it was actually the last lot of paramedics that came that actually explained to us what we were going to expect," Mrs Riseley said.

"So Dad had been pulling at his clothes, and apparently that's part of the end-of-life process which we knew nothing about, so we were saying 'it's alright Dad, it's OK'.

"Whereas we should have just let him go and do what he needed to do.

"It would have been less traumatic … and we would have been able to support dad more through the process.

"The information to hand was information I had gained from Google.

"We shouldn't have to go to Google as a source of information to understand."

Mr Berry died on the Monday, which was a public holiday.

'We were scared'

The family wanted Mr Berry to have a calm environment, but instead there was hesitation and nervousness.

"We were really questioning whether we were doing the right thing by Dad," Mrs Risley said.

"We were scared and really questioning 'is he in pain, should [we] seek medical advice, should we take him to the hospital' — we just didn't know.

"We couldn't communicate with Dad so he couldn't tell us.

"We did what we thought was best, but whether it was or not … who knows."

Judy Berry says there needs to be more support for families and to take pressure of services like Ambulance Tasmania. ( ABC News: Mitchell Woolnough )

The family is speaking out in the hope that there will not be a repeat.

They want to share their experience to highlight gaps in a system in the south of the state which they say works well during business hours, but not outside of them.

Mrs Riseley said the timing of her father's deterioration was not able to be predicted.

"Death isn't convenient, and … unfortunately for us, Dad deteriorated on that Friday night, so we had no services available to us from palliative care over the weekend," she said.

Not the dignity Kevin wanted

Judy Berry said it was hard to judge if her husband got the death he wanted.

"He got to be where he wanted because of us and Ambulance Tasmania, whether it was the amount of dignity that he really wanted, I would say no," she said.

"We did the best we could under the circumstances and with the help we had."

What do you need to consider if your loved one is planning to die at home? People preparing to support loved ones have several legal considerations, including: Does the dying person have an advance care directive and have they discussed this with support people?

Does the dying person have an advance care directive and have they discussed this with support people? Have copies of the advance care directive been provided to all people involved in care?

Have copies of the advance care directive been provided to all people involved in care? Does the person you are caring for need an enduring guardianship, someone appointed to make lifestyle, health and medical decisions they cannot?

Does the person you are caring for need an enduring guardianship, someone appointed to make lifestyle, health and medical decisions they cannot? Is the family situation complex?

Is the family situation complex? Does the person have a will?

Does the person have a will? Have they completed an enduring power of attorney to appoint someone to make financial decisions? Source: Palliative Care Tasmania

Ms Berry said the family had high praise for the health professionals it dealt with, but she did not want anyone to go through what they endured.

"We don't choose when we get sick, we don't choose when we die, so 9-5 just isn't good enough," she said

"A better system to me would be 24-hour phone help, and also someone on call that can actually attend when necessary."

Palliative Care Tasmania said it was an issue that needed to be addressed now.

"One hundred per cent of us will die, 85 per cent of us will have an expected death, 70 per cent of us want to die at home, but we are seeing gaps in the at-home service," chief executive Colleen Johnstone said.

She has been lobbying the Tasmanian Government for an after-hours helpline in the state's south.

"The big issue is, it should not be a Tasmanian Ambulance role," she said.

Colleen Johnstone has been lobbying for better after hours help in the state's south. ( ABC News: Scott Ross )

"We should have some type of palliative care after hours number in this state — a consistent number that families can call when the wheels fall off, and the wheels always fall off at night time, or on the weekends."

She said a service was currently being trialled in Tasmania's north and that it was also being rolled out in the north-west.

"We have double the population in the south, we have immense pressure through the Royal Hobart Hospital, and we just think that having an after-hours number would help alleviate some of the issues we see in the health system," she said.

Palliative Care Tasmania is keenly waiting to see if a request for phone numbers and after hours services in the south will be included in Thursday's state budget.

The Australian Nursing and Midwifery Association joined the call for funding and for the service to be extended, with union executive director Andrew Brakey warning demand for the service was only going to increase.

He said 25 per cent of Tasmanian palliative care nurses were looking to retire in the next five years, and 40 per cent would be eligible to retire in the next decade.

"We would expect to see and exodus from the profession over that time," he said.

Kevin and Judy Berry on their wedding day. ( ABC News: Mitchell Woolnough )

It's time to talk

The Council on the Aging is urging people to plan ahead for death.

"We need to make it more culturally normal," chief executive Sue Leitch said.

"It is challenging topic, but if we can have them earlier and discuss options about what is an advanced care directive, or enduring guardian [and] how that differs to power of attorney — these are all the legal things to go with your will."

Family members have been left wondering if they did the right thing. ( ABC News: Mitchell Woolnough )

But she said the practicalities of dying at home were also paramount.

"Earlier on, if you have a terminal diagnosis, it's good to investigate the options," she said.

"If there are gaps appearing in the plan, particularly after hours and weekends, try to work out a back-up plan if possible.

"Do the family need to be trained to support that person in any way with any medication supports, what is the role for their community pharmacy, what's the role for aged care packages … is there a volunteer organisation that might be able to help them with things at home?

"They need to know who is in their support team around them."

In a statement, the Tasmanian Government said it had provided funding for palliative care initiatives to support patients and families.

The statement said the Government's after-hours trial in the north and north-west would "inform palliative care services across the state".