KEY POINTS:
Doctors have been gathering at Middlemore Hospital in South Auckland this week to talk about death.
It is a subject they would like us all to talk about but at the same time they are nervous about what might appear in the newspaper. They fear a backlash. Deciding when to let people live and when to let them die is a sensitive business.
But doctors have to deal with it and they say we should all think about it.
Take the case of a frail elderly woman who lived in a resthome.
She had severe dementia. She had to be secured to be taken by ambulance for her visits to hospital, where she needed dialysis for three to four hours at a time.
She didn't know where she was. It was a miserable life.
This is a real case. If she'd had any way of knowing what was to come, the woman might have said she would not want to have any treatment.
It is not just the elderly who need to talk about death, the doctors say. There are those who may be younger yet will develop chronic illnesses, or those who are destined to be hit by a bus and become brain-dead, or have brain damage of such severity that life would become an ordeal. They might want to die but have relatives who desperately want them alive.
The doctors and specialists in South Auckland are not ghouls who want to end the lives of the very ill. They are respiratory specialists, renal specialists, intensive-care specialists, grief specialists, palliative-care specialists. They are the people you want around should the worst happen.
Money is an issue, but not the main issue, they say. About 70 per cent of the health budget is spent on the last two years of life. It's a lot of money and it means that sometimes other people, perhaps a young mother with two little girls (another real case) who may need drugs or treatment, will not get them.
Mainly, though, it is about quality of life. Addressing the doctors at Middlemore is Australian intensive-care specialist William Silvester, invited by Middlemore's clinical head of medicine, Jeff Garrett, to talk about the system Silvester has instigated in Victoria.
His programme, Respecting Patient Choices, is already running in eight hospitals in the state. Funded by the Federal Government, it will be piloted in every state and territory in the country.
As an intensive-care specialist, Silvester had become concerned about the number of patients being treated in such a way that if they had been able to tell doctors their wishes, they may have rejected treatment.
His programme is about what doctors call advance-care planning, where people choose different options about what they might want in the future.
The programme is running in hospitals and in resthomes - and in the resthomes there has been a big reduction in the number of patients being inappropriately transferred to hospital to die, Silvester says.
"They're being kept comfortable in the nursing home. They have their family and friends at the bedside and they're allowed to die with dignity and peacefully instead of being transferred to hospital, where they might end up dying on the emergency department trolley while they are waiting for a bed on the ward, or up in the ward being cared for by people who don't know them."
Silvester says the resthome residents think it is fantastic that someone has bothered to talk to them about these matters, because often the elderly in such places feel disempowered and ignored.
"They indicate whether they want to be going to hospital if they deteriorate. They indicate whether they want palliative care or to be aggressively managed. They indicate a lot of personal things.
"They say, 'When I'm dying please leave the curtains open because I don't like the claustrophobia of the curtains being around the bed'. Or they might write, 'Please when I'm dying I'd like to have a vase with irises because it's my favourite flower'.
"Or they might write they want country-and-western music playing, and they'll often say they want a particular priest or minister to come, or they might want rosary beads in their hand, or they might want a penny in each hand for the ferryman.
"So for each of them, it's very personal and intimate response - and that's fantastic."
Families find the discussion helpful. Bringing up death is not easy. Sometimes they fear staff will interpret it as their wanting to pull the plug on mum or dad when really they just want to care for them in the best way.
Silvester says that as yet he has not looked at whether money is being saved, partly because the programme can be portrayed as a government-sponsored way to save money.
This is not what it is about, he says. "We're finding, paradoxically, it's protecting the vulnerable because they're being given an opportunity to say what they do and don't want under circumstances where they are normally not even asked at all."
Respiratory specialist Jeff Garrett would like to have a pilot programme at Middlemore but says he is not yet sure exactly what is required.
But on ward rounds he often sees people who are inappropriately treated and who, given all the information on what they can expect, would prefer to die with dignity.
Patients in New Zealand with a wide range of chronic medical conditions are not managed as well as they could be or should be, he says.
Garrett talks about one of the best deaths he has witnessed. A mother in her late 30s who had respiratory failure came forward for lung transplantation. She was so ill she was just "surviving" and when this happens people focus in on themselves.
"That's the only way they can survive," Garrett says. "They have no effort, physical or any other way available to commit to anybody else in the family."
The transplantation was a success and for two years her young daughters saw a new mum and the family had a fabulous life. But then came chronic rejection.
The mother said she was heading back where she was before, saying: "It's awful, I'm going back into myself again and I'm becoming reasonably dependent on the family." It was agreed that her next infection would not be treated.
"She rang me and she said: 'I've got an infection and I'd like to come and die in hospital'. And she did and she had a lovely death and the whole family came and said goodbye."
Although this sometimes happens, Garrett says there should be a better system ensuring all patients' desires are taken into account.
There would need to be careful training for all involved and legalities and safeguards would have to be thoroughly developed.
"What it's doing is giving the control back to the patient and having the depth of discussion that allows them to make those informed decisions about their care."
Stephen Streat, an intensive-care specialist from Auckland Hospital and head of the organ donation programme, attracted controversy last year by suggesting that death and dying be part of the high-school curriculum.
He fears an Americanised healthcare system, where doctors simply fall into line with what the family wants in order to avoid complaints.
In America, the question is around who has the right to decide. Here, the discussion is about what the right thing is for the patient.
In intensive care at Auckland Hospital, the first meeting with the family outlines the seriousness of the condition. If the patient might die, the family are told that.
"At some point it may become very clear to all of the treating team that continuing to treat the patient would either only prolong their dying, or, worse, have the possibility of allowing them to survive without recovery in a condition where they and the family would prefer death."
Over time, a mutual decision might be made to withdraw treatment. It is not a painless process and is emotionally draining, Streat says.
He believes there is a widespread lack of awareness about the limits of medical technology, a naive belief that technology is all-powerful and that any health problem will respond to unlimited money, that everything is treatable. This is not the case.
Streat thinks that one of the reasons people were upset at his suggestion that death and dying be part of the curriculum is because people are no longer accustomed to death.
In the 1930s, 10 per cent of the population did not make it past 5, and death as an adolescent was common.
In late Victorian times the average age at death was 40. Now it is 80.
Streat is supportive of Silvester's initiative which has taken the discussion about death out of the hospital and into the community. It's a start.
The passive approach prevails
Johan Rosman has an unusual perspective on end-of-life planning. The head of renal medicine at Middlemore Hospital is from the Netherlands, where euthanasia is legal. He has also worked in Germany, where every effort is made to keep patients alive, no matter how old and sick.
Rosman is shocked by people who think doctors in the Netherlands kill patients who are not contributing to society. He says it is rare for doctors to take part in active euthanasia, where perhaps someone with cancer has decided they do not want to go on in pain, and there are strict criteria to follow.
Passive euthanasia is more common and is humane, he says. And it already happens in New Zealand, when patients make choices about treatment.
With conditions such as end-stage renal failure most countries say, "you have to do dialysis otherwise you will die", and that's where the thinking stops, Rosman says. "We should ask ourselves, 'do I do this patient any favours by proposing dialysis?' "
Dialysis is an aggressive treatment which cleans the blood of waste. What your kidneys achieve 24 hours a day, seven days a week, is reduced to aggressive sessions three times a week.
Usually people feel miserable, nauseous and exhausted before they come to dialysis, and miserable afterwards. "It's a tough life, so you have to ask yourself from an end-of-life perspective continuously during that treatment, is this worth it?"
He sees older people with severe diabetes and two amputated legs who might feel it is not worth it. If they say stop, the staff are happy with that. The patient will die peacefully within a few weeks.
But sometimes families push them to go on for religious or cultural reasons. "It's sad, it's really sad," Rosman says.
Rosman hopes the seminar will help health professionals to lose their fear of talking about death.
"As healthcare professionals we are trained to make people healthy, to keep people alive, but I think a very important task of healthcare professionals is to give the people who are not going to survive a human and, especially, dignified way of getting out of this life."
"Dying is as much part of life as being born. We should not try to hide from death."
