It's the fear that gets you. Fear of the end, fear of pain. Three years ago Margaret Ashton was diagnosed with ovarian cancer and given five years to live.
The 63-year-old grandmother says she still has days where she wishes she could be put out of her misery.
"I often say to my husband that if I was a horse or a dog I'd be taken to the vet and put down," she says. "When you are having a really bad day … you still think that, there's no doubt about it."
For Ashton, the recent debate in the Herald's letters and opinion pages about euthanasia has been intensely personal.
More pressing for her, however - and thousands of others with a terminal illness - is not the last moments of life but the weeks and months leading up to them.
Even in countries that allow voluntary euthanasia and assisted suicide, most people do not choose it. In the Netherlands, it accounts for about 2 per cent of deaths. In Oregon in the US, as few as 0.2 per cent.
Palliative care is what has given Ashton peace of mind.
"You are always told you should never be in pain and you don't have to be, it can be so well controlled these days," she says. "It's just coping with day-to-day life and just getting on with it."
Next Thursday, the NSW government will release the Palliative Care Plan 2012-16, increasing funding by $35 million over four years. The plan will extend services for care in the community and support for families and carers, as well as integrating GP, specialist and aged care.
The Health Minister, Jillian Skinner, believes a lot of the debate about euthanasia is actually about improving palliative care.
"Palliative care can start very early in the piece," she says. "It can give life so much more quality."
Pain and other symptom relief, psychological care, physiotherapy and home help are some of treatments offered as part of quality palliative care. Its aim is not to shorten or extend a patient's life - although it may result in the latter.
A landmark study, published in the New England Journal of Medicine in 2010, found people with lung cancer who were treated early with palliative care survived for two months longer than those given aggressive medical care.
The authors believed the patient's improved moods and better quality of life could have lengthened their lives.
For Skinner, the issue of palliative care is also personal. She watched her best friend die several years ago, and says palliative care was an immense benefit.
"I know what a huge difference this can make," she says.
One of Australia's foremost experts in palliative care, Peter Cleasby, is clearly frustrated by the focus is on euthanasia, which he describes as a small part of the discussion about supporting safe dying.
Cleasby, the president of Palliative Care NSW and vice-president of Palliative Care Australia, has worked to improve palliative care in NSW at the same time as he has seen it downgraded in favour of more glamorous, life-saving treatments.
Statistics released last week by the Australian Institute of Health and Welfare show that between 2008 and 2010 the number of NSW public hospitals with hospice care units decreased from 47 to 40. NSW has the least specialist palliative care doctors per head than any other state or territory for which numbers are available, and the third-lowest number of palliative care nurses.
"NSW is not pulling its weight in terms of normal end-of-life care infrastructure," Cleasby says. He calculates that based on the Institute's figures NSW would need at least 22 more palliative care doctors and another 200 nurses just to catch up.
Palliative Care NSW estimates the state has an annual shortfall of funding for palliative care of between $20 million and $35 million.
So while Cleasby welcomes the $35 million over four years, he worries it will make only a small difference.
Even before our ageing population increases demand for palliative care, there are disparities in access to treatment.
Only about two-thirds of the 13,000 people in NSW who die each year of cancer receive specialist palliative care, the Palliative Care Plan says. A similar number die of other conditions where death is predictable, and only about 10 per cent of them receive palliative care.
But the problem runs deeper than funding shortfalls, with many people - and their doctors - uncomfortable with the very idea.
he shock is audible in Julia Winkley's voice four weeks after she received the news her breast cancer had spread to her liver.
"I'm a bit more aware of my own mortality at the moment, it's scary," she says. "It's quite confronting because I wasn't expecting to get sick like this."
But Winkley has decided to throw her weight behind a campaign for all people dying in NSW to have access to the palliative care that gives her peace of mind about the days to come.
She has distributed petitions calling for funding improvements for palliative care and is especially concerned about ''country areas where there is no palliative care at all".
Campaign organiser Yvonne McMaster, a retired palliative care doctor who runs cancer support groups, says more than 40,000 people have signed across the state.
She is "very, very grateful" for the government's increases in palliative care funding, but believes it is a fraction of what is needed.
"The people out there on the ground are screaming for help and struggling to meet demand," she says.
At the Sacred Heart hospice in Darlinghurst natural light streams through the windows and over the leafy courtyard. The distant sound of buses braking on busy Oxford Street is the only reminder of the chaos outside.
The director of the Sacred Heart supportive and palliative care service at St Vincent's Hospital, Associate Professor Richard Chye, trained as an oncologist but felt his treatments often only made patients sicker.
"Then I did a stint with the palliative care team and I found all the treatments I was giving were making them feel better," he says.
Chye says admission to palliative care varies a lot based on the philosophy of different treating teams, and whether they see it as a failure.
"It's very hard; paediatricians in particular have a lot of difficulty letting go, or accepting that a child is not going to be cured," he says.
Chye, who while a medical student watched his own father die from cancer without receiving palliative care, says often it is families who suffer most while a loved one is dying.
This can be particularly distressing if the family member had previously been kept alive using a feeding tube - in such cases he has seen people take up to three weeks to die when the tube is removed.
While the NSW Palliative Care Plan will focus on improving the ability of patients to die at home, Chye cautions that this can place an incredible burden on families.
"Nurses work in teams and in shifts, but when a carer is at home there is only one shift and it is 24 hours a day," he says.
He often sees situations where "the frail are caring for the frail". They simply cannot cope when their loved one becomes agitated, or needs to be carried to the bathroom.
In such cases patients often move to the hospice for their final days.
"I just don't have the resources to send someone 24 hours a day to keep a person at home," he says.
If resources are strained in city areas, it is nothing compared to the dire shortage of palliative care in rural and regional NSW, where the Palliative Care Plan has highlighted a particular need for improved services.
When New Zealand palliative care specialist David Bird went to Coffs Harbour, he became the only full-time palliative care doctor in the area.
"To provide really good palliative care you need to be able to provide 24-hour service in the community, and at the moment we are not able to provide that," he says.
While Bird has been able to build services in the region, he worries that when he retires in a couple of years there will be no one to replace him.
"In the Port Maquarie and Coffs Harbour area we should have five palliative care specialists, and we have one," he says.
Skinner says increasing the workforce will be one of her top priorities. But she acknowledges the money attached to the plan will not be enough to achieve the ambitious goals set out in it.
"I'm not going to claim we are going to fix the problem and fill all the gaps overnight,'' she says, ''but if you don't start on a problem you will never fix it, and this is a start."