Hospice 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.
Ms O'Brien said her work with patients at the cancer treatment center 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.
They 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. When the ICU ambulance finally came, he said 'no way will I give him anything unless he comes to the hospital.
Lots of doctors and families have the myth that once you come to palliative care, your time is short, therefore will only refer when the time is really short. So 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.
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 to bring it up because they fear things will go down too quickly.
Preparation paves the way to a better death
They believe a good death depends on the patient and their personality, and the life they want to lead. A lot of patients I find who accept where their journey is heading, who prepare themselves and their families, all have a good death. The pain is getting worse because the cancer is getting worse.
It went from a slow-growing, non-aggressive cancer to a fast-growing, aggressive cancer. They 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.