A typical night shift for a paramedic includes a call-out to the bedside of an "unresponsive" elderly person in an aged care facility.
In the absence of clear evidence of prolonged death, such as rigor mortis, which can take hours to set in, paramedics must begin CPR. This means breaking bones.
They must do CPR for 20 minutes unless they are told to stop, or they receive an advance care directive (ACD) instructing against resuscitation.
"It's not like on TV. The sternum is to protect the heart. To restart the heart you need to get through the sternum," said one paramedic.
"Then we stick a tube down their throat to try to get oxygen through. Then put a needle in them, give them adrenaline. Maybe shock them with a defibrillator.
"Breaking their ribs and inserting tubes is absolutely useless and horrible ... it is a long 20 minutes. You feel physically sick; like you are abusing this person who died peacefully in their bed.
"It's a flatline 99.99 per cent of the time. But if there is any rhythm change, even a flutter of a pulse, we must transfer them to hospital. They live their last maybe 24 hours with a broken body, then they die anyway ... we have no control and would lose our job if we refused."
The paramedic said aged care facilities were mostly staffed by carers. At night, staff dwindled to perhaps two, often for a facility with 150-plus residents.
While carers did "a fantastic job" they were not trained nurses. They were aware of the heavy responsibility on their shoulders and were wary of causing trouble.
Carers could not check every sleeping resident every 20 minutes, she said. They were afraid to say they had not checked a patient for hours, so they would say the patient had been unresponsive for less than 15 minutes. Commonly, there was either no advance care directive in existence or it was not found on the computer system in time to avert resuscitation.
Lovely old frail nannas who have died peacefully in their sleep, for us to inflict that on them is just going through the motions knowing there will be no positive outcome ... you feel guilty.Western Australian paramedic
"I can assure you that the poor carer at 3am, whom [families] have never met, is too much in a panic to know [the family's] wishes," the paramedic said.
"One resident getting sick is the end of the world. They can't look after a sick person when there is someone needing to go to the toilet and another person wandering the corridors needing to be put back to bed. Then paramedics are called. It's a relief to them that we take them away."
She said facilities usually had just one registered nurse on at any time. Sometimes they were not even on site, just on call. Doctors, also on call, generally advised hospitalisation. Many doctors dealing with aged care facilities were risk-averse.
"The family says, 'of course I want them to go to hospital'. People are afraid to say 'I want my mum to die'. They instead say 'try anything'. But if they saw what actually happens during a resuscitation they would say no. By not putting things in place, families are torturing their loved ones," she said.
"It's horrible to admit but they need to be told and no one is telling them."
She said it was every paramedic's dream to see an ACD posted on the wall above the bed.
Recently thousands of people across Australia and New Zealand read the story of a 93-year-old grandmother, a frail woman with advanced dementia who lived in a locked dementia ward and had very poor quality of life, despite weekly visits from her family. Recently she contracted pneumonia and in the middle of the night, without contacting her family or locating her ACD, the facility hospitalised her; a traumatic experience for the woman, who fought and kicked against being taken away. She had to be restrained and sedated. She was given IV antibiotics. By the time family was called, the woman had been pulled back from the brink. Now "recovered" but in even poorer health, she is back on the ward.
The family spoke to doctors at the hospital about how their ACD had not been found or honoured.
Doctors told them they too had felt treatment was wrong.
Dr Bailey, director of clinical medicine at St John Ambulance and director of emergency medicine at St John of God Hospital in Murdoch, said doctors considered futile medical treatments unethical.
"This is the bit that troubles me," he said.
"We're doing some things to a group of people with close to no prospect of success ... I'm troubled that we are doing a series of interventions with very limited upside. Maybe approaching zero upside, in that select group of patients."
One Perth paramedic told WAtoday she became a paramedic to save lives and knew resuscitation would be a major part of the job. But she could not have anticipated the number of elderly terminal and frail people she would be forced to resuscitate even with a slim to nil chance of a positive outcome.
She said it was "very, very rare" for aged care staff to be ready with an ACD.
"It's left to us to question it. Sometimes they say there will be one, but they can't find it ... or it won't be signed properly. Sometimes staff say, 'we don't do that here', which means the question, the conversation has been avoided," she said.
"The things we do are aggressive, we're breaking bones, drilling holes into their bones, it's gory, it's traumatising. These lovely old frail nannas who have died peacefully in their sleep, for us to inflict that on them is just going through the motions knowing there will be no positive outcome. It sticks with you, you feel guilty.
"I knew a few paramedics who have PTSD and cited resuscitating the dead as one of the causes.
"If you leave work with PTSD ... there is a period where you are helped to retrain. But some people can't work in emergency or high stress situations ever again, that triggers it. So people I know have gone and done completely different things, even working in retail. Most people I know who've left actually still aren't working."
About half the people in aged care facilities have dementia.
Many have lost the ability to speak by the time they have a stroke or heart attack, or get an infection such as pneumonia.
Such diseases, common bringers of death in the elderly, are often fought tooth and nail.
When such patients come through the doors without an ACD – a daily occurrence – staff were "lost", said an emergency department physician of more than three decades' experience.
"There is an avalanche of sick elderly people in hospital who shouldn't be there," he said.
"They rush in and our hearts break. The assumption is, well, they are here; someone has decided they want something done."
Some families became hostile and angry if their relatives were not given CPR and this fear committed doctors to at least start. Not doing anything was not an option, said the doctor.
Like most of us, such families must imagine doctors as people who do good and relieve pain; at least "do no harm", as the old Hippocratic Oath went.
But the doctor painted a more violent picture, describing the vulnerability of the "little birdlike person" being rushed into hospital.
"We crush a 90-year-old chest, their ribs splintering as we do CPR. It is vile. There are worse things than being dead," he said.
"It is a horrible assault to do all that when you have no chance of doing any good anyway. This person is in a nappy, hasn't spoken for years.
"As staff we are trapped. Nurses, doctors just feel we are backed into a corner. Almost no staff member would subject our own Nanna to this."
Dame Cicely Saunders, founder of the modern hospice movement, once said that "how people die remains in the memory of those who live on". The doctor being interviewed illustrated this, as he struggled to hold back tears.
He said families somehow equated completing an ACD with wishing a loved one dead.
So they kept turning up without forms and doctors led the discussion on the spot.
Sometimes it was the first time in their lives an elderly person's adult children had had such a discussion.
"You are kind and calm and talk things through," he said.
"You say, 'what do you think they would want for themselves?' Most people see that treatment is inappropriate, but sometimes ... the person has never talked about it with their GP or family."
He said once it was once a common wisdom that if a frail person had dementia and a poor quality of life, advanced resuscitation was inappropriate. An infection might take two or three days to carry them off, with medication to ease pain and discomfort. There was time to call the family together to say goodbye.
But aged care staff now felt uncomfortable letting someone die even in predictable circumstances. Some families, particularly highly religious families, had very strong, very unyielding love. They wanted everything done. They would not discuss what to do if Nanna got sick.
"It is painful to watch someone we love struggle with a terminal infection, but it beats aggressive intervention aimed at extending life. An elderly doctor in his 80s reminded me recently that pneumonia in the elderly used to be known as 'the old man's friend'," he said.
"That phrase reminds you that as awful as it is to say goodbye to people you care about, it should not be terrifying. If you are dying of old age at the end of a good life, it's not the same as a kid dying of cancer. It should not be feared.
"We seem to have forgotten that death is part of all our lives, and it's no longer seen as something natural, but something to be resisted no matter how inevitable it might be, or how dreadful a patient's existence might be. Doctors wouldn't do this to their own families."
The doctor's own grandmother initiated an early discussion as dementia eroded her quality of life. In turn, his parents had made their wishes clear, and he had made his own clear to his children.
When she eventually died of pneumonia she did so peacefully, surrounded by family.
He implored any family with a relative entering aged care to use the move to trigger discussions. These were not threatening if done early.
"We are so grateful if someone tells us what they want ... it is not horrible or unkind ... it is thoughtful and caring to set the boundaries of care."
While not the provider earlier referred to by paramedics, Juniper is one of WA's leading aged care providers. Chief executive Vaughan Harding explained that procedures around unexpected illness and death in facilities could not be hard and fast, as all cases were complex and individual.
Mr Harding said the number of carers and nurses rostered on would vary greatly between providers and locations, depending on the mix of residents and care needs. Carers were trained to know when they were out of their depth and seek assistance. It was the job of the "highest qualified person on the floor at that time" to decide who to call.
While he could not speculate on all providers' systems, he said it was possible not every provider had good record keeping systems. But most ACDs were recorded electronically and should be visible to carers looking at a resident's profile.
"Staff should be very conscious of the presence of an ACD. I'd be disappointed to hear that emergency services are called on inappropriately [but] a service provider does have a duty of care," he said.
"If they're uncertain and feel more support is needed they must do something."
St John clinical services director Paul Bailey has a specific interest in the research area of out-of-hospital cardiac arrest.
He said bringing the dead back to life was a fantastic thing when it was successful, and in people who were younger and fitter it was getting more and more successful.
The number of survivors of out-of-hospital cardiac arrest had increased 70 per cent over three years due to efforts by paramedics, community first aid and hospitals. More than 90 per cent went back to living independently and more than 75 per cent were able to go back to normal life with minimal long-term impairment.
But it was a very different story for elderly people living in care facilities.
If paramedics turned up, did a resuscitation and got a normal heartbeat back quickly, within just a few minutes, that group had survivors.
But patients given 20-minute resuscitations and then transported to the ED still in cardiac arrest did not do well at all.
Most were declared dead in the ED after arrival. In 22 years there had been one survivor.
But paramedics could not refuse a job.
Dr Bailey said he was aware that to some people, a paramedic's function was not necessarily to restore life but to restore order. Sometimes, people knew that resuscitation was not wanted, but they just didn't know what to do.
"We do know what to do. We come in and take care of it, sort things out. But the trouble is unless as we walk in, they say 'no resuscitation', we will have to start our protocol," he said.
While he had had some conversations within the aged care sector, rules were hard to change.
"There are rules like if you have had a fall you go to hospital regardless of how trivial it seems. We set up policies to try to cover the unusual situations with blanket rules, and maybe take human decision making out of it because from time to time, humans make mistakes," he said.
"We're a fairly intolerant society of things going 'wrong'. My challenge is to try to limit those interventions in that group of patients, without spillover in those likely to survive.
"Australia is an incredibly rule-bound society and the ambulance service is a victim of this process. The very best way out is the people providing direct care to patients or loved ones is to know their wishes and to enact these wishes when something happens."
- Attend a brief Palliative Care WA workshop (metro or regional) or a short introductory meeting - visit the website or call 1300 551 704
- Advance Care Planning Australia, WA and New South Wales health departments and other state and territory governments also have free and reliable resources.
- Dr Cooper has also created a website that helps guide people through the creation of advance care directives and upload to GPs and hospitals.
- Or just talk to your GP.
National Advance Care Planning Week is coming up in April.