Palliative care has a very scary reputation.

Patients are often frightened to hear the term, thinking it means imminent death, and many doctors are scared to use it.

But it could actually mean a longer life, and certainly better quality of life, towards the end.

Palliative care doctors say talking about death can also make the inevitable easier.

Elizabeth, who has terminal cancer and is a patient at the Chris O'Brien Lifehouse in Sydney, told PM it had been helpful for her to talk about death, instead of pretending it's not going to happen soon.

"On the other hand, always keeping that bit of hope that it won't — because I never give up hope, and I think most people feel that way," she said.

Elizabeth said she found great comfort talking about "the d-word" with the organisation's patient advocate Gail O'Brien.

"Gail is someone you can talk to who is like a friend, a really good friend," she said.

"You get mix of support for where you are at now, and at the same time supporting your dreams that it won't all go bad really quickly."

Gail O'Brien, a patient advocate at Chris O'Brien LifeHouse ( ABC News: Maisie Cohen )

Gail O'Brien is the widow of Chris O'Brien, the pioneering head and neck surgeon who died from a brain tumour in 2009.

Ms O'Brien said her work with patients at the cancer treatment centre named in honour of her husband is heavily influenced by the way he died.

"Chris and I had a pretty terrible experience around palliative care, because we weren't linked in with it, and when the time came at his end of life it all went pear-shaped," she said.

"We were at home but didn't have any morphine. We were set up with a bed, the equipment, but not the medicine."

Ms O'Brien said people assumed she and her husband would know what to do because they both had health backgrounds.

"But we are not palliative care physicians, so I called an ambulance thinking they would have morphine on board but they didn't, it was just ridiculous," she said.

"When the ICU ambulance finally came, he said 'no way will I give him anything unless he comes to hospital'.

"Chris said 'don't let me die in pain', and I felt like I had really let him down."

The O'Briens' experience is not unusual.

Palliative care is often not considered until it's too late, which Professor Richard Chye, the director of Sacred Heart Supportive and Palliative Care service at St Vincent's Hospital Sydney, said was a huge frustration.

He said many doctors were reluctant to refer patients to palliative care because it mean they have "failed".

"Lots of doctors and families have the myth that once you come to palliative care, your time is short, therefore will only refer when time is really short," Professor Chye said.

"So [the patients] miss out on all the benefits that palliative care can provide over time."

Doctors, families 'afraid to bring up' dying

Professor Chye said part of the problem for doctors was that the Australian health system promotes wellbeing, and shies away from addressing death.

"Talking about dying, talking about a short prognosis, is very uncomfortable for doctors, patients, families," he said.

"Ultimately the patient loses out, because they haven't had the time to prepare," he said.

Professor Chye said he did not just focus on a patient's symptoms, and that part of his job was to introduce the idea that no-one is going to live forever.

"In fact, a lot of our patients know they are sick and aren't going to get better," he said.

"A lot of patients want that affirmation from their treating doctors, but their treating doctors are too scared to talk about it.

"Lots of family members know their loved ones are dying, but they fear bringing it up because they fear things will go down too quickly."

Preparation paves the way to a better death

Professor Chye said preparing for the final stages of life with palliative care can lead to a "good death".

"I believe a good death depends on the patient and their personality, and the life they want to lead," he said.

"A lot of patients I find who accept where their journey is heading, who prepare themselves and their families, all have a good death."

Judith Lacey is head of supportive services at Chris O'Brien Lifehouse ( ABC News: Maisie Cohen )

Judith Lacey, head of supportive services at Chris O'Brien Lifehouse, said being prepared psychologically and physically could lead to a good death.

"Everyone wants to die the way they've lived," she said.

"People have interesting ways of interpreting and deciding on how they perceive their death to be, and want it to be.

"And so it's listening, honouring and responding to that, and maintaining peoples' sense of dignity."

Helping patients and families live better through illness

Palliative care patient and Sydney resident Peter Morris ( ABC News: Maisie Cohen )

Peter Morris has been sick for 22 years and in palliative care for the last six.

He said his palliative care doctor has made the experience as good as possible.

"His job wasn't [to] pat me on the head and make me feel ready for death, his job was to make me comfortable with pain relief," he said.

"Death didn't have to come into it. I never felt I was going to die, I just needed help to be looked after with pain relief, to make the pain less severe."

Peter Morris said for him, palliative care wasn't all about dying, but easing the pain of his condition. ( ABC News: Maisie Cohen )

But Peter's condition has recently become much more serious.

"The pain is getting worse because the cancer is getting worse," he said.

"It went from a slow-growing, non-aggressive cancer to a fast-growing, aggressive cancer.

"I've had 20 sessions of radiotherapy and chemo tablets, but at the moment it's looking like nothing is working."

But Peter says the years in palliative care have allowed him to prepare his children for what's ahead.

"When the time comes, I'm going to go smiling because I believe I've done a great job in helping bring them up in the way they can deal with this.

Peter Morris feels he has had the time to prepare his family for what's ahead. ( ABC News: Maisie Cohen )

Peter and his daughter Tori are now planning a trip to see Uluru in the Northern Territory to spend some time together.

"We've planned the trip, but who knows what will happen after that," Tori said.

"Every day is a new day."