Why aren’t they screaming?

An investigation into futile care.

From the archives:
Over 10 years ago Australian Doctor published an investigation into futile medical treatment in aged care.

It was called ‘Why Aren’t They Screaming’ and won that year’s National Press Club health journalism award.

“What do they think has happened, the old fools, 

To make them like this? Do they somehow suppose 

It’s more grown-up when your mouth hangs open and drools, 

And you keep on pissing yourself, and can’t remember”

Philip Larkin, The Old Fools

Phone rings. It’s the nursing home. Cynthia’s mother has collapsed from sepsis and an ambulance called to take her to hospital. Cynthia knows this is going to be bad. Diagnosed with advanced Lewy body dementia, her mother’s life has descended into a frightening paranoia, a world where she sees hundreds of insects crawling across walls.

Cynthia climbs out of bed, throws on her clothes and heads out in the car, through the rain, along the deserted Sydney streets, to locate her mother in the NSW hospital system. It’s 3am. She arrives in an emergency department overflowing with the debris of fights, of drugs and booze all washed up from a night turning to morning. She finds her mother in a small holding bay.

She was screaming like a wild animal. She thinks everyone around, the doctors and the nurses, are out to get her.

At that moment the hospital goes into action. They try to sedate her. They put restraints on. She fights. They want to give her IV antibiotics, pushing the cannula into her arm.

But the place is ill-equipped to deal with a demented and delirious elderly woman.

Cynthia watches on, bewildered.

They get her onto the ward and Cynthia stays with her. Eventually, the drugs work, the sepsis starts to clear, but the fears raging inside her mother won’t. She spends the next few days delirious, scratching at her arms and pulling her drip out.

Cynthia visits and she’s asked by the staff to administer oral antibiotics herself.

“I’m standing there, trying to shove these pills down her throat … she’s struggling against me. I just couldn’t see the purpose of it,” she says.

“What kind of life was this treatment meant to be offering? It was like giving her a chance to return to her paranoid ravings. I still ask that question now. I think it would have been better if the ambulance had never been called. She should have never left the nursing home.”

A perverse rite of passage

Hundreds of elderly patients – confused and frightened – make this journey from nursing home to hospital every week.

It can be for IV antibiotics, pain relief, the insertion of PEG feeding tubes, resuscitation or even to be wired up to the machines in ICU.

For those working in the health system, questions about the rights and wrongs of this treatment are familiar, but beyond that, these discussions are rarely voiced.

Some say the interventionist horror awaiting many elderly patients in the last weeks and months of their lives has become a “rite of passage” – a rite of unnecessary misery to those least able to say they want it to stop.

Early April, and we are in a Sydney hospital during a brief and unofficial tour – no media approval, so no identities.

In the studied calm of the intensive care unit, amid the machines and the patients surrounded by walls strewn with cards from well-wishers and children’s finger paintings, and the flowers sent by worried sons and anxious mothers, one of the specialists is trying to explain his troubles.

“I don’t blame the poor buggers in ED for sending [nursing home patients] to us,” he says.

“It’s Friday night, the shift is near the end and then the [nursing home] patient is there on the trolley. They’ve had a stroke, they are paralysed and they’ve stuck a tube down their throat doing a CT. The family arrive. Are you going to say treatment is inappropriate? You are a stranger. Are you going to be raising the death question then?

“It’s just easy to do the assessment and send them on – and they end up here. Often it’s easier to do that and just to go home.

“But working in intensive care, there are words I dread hearing. It’s when the junior guys at the front of emergency ask that bloody question of the relatives: ‘Do you want everything done?’ Do you want everything done! What are you going to say to that? What would you say – ‘No, just leave them to die’?

He throws up his hands and laughs. Then he stops and looks serious again.

“I’ve seen the PEG feeds down the throat because the family is worried about their mother starving to death. That is not pleasant.

“Even the IV antibiotics. The patient is scared out of their wits in a place they are not familiar with and you are attempting to uncurl the limbs to put the lines in. It’s a terrible thing.

The electrode for the heart monitors – when it comes to taking those away, you end up stripping their skin from them,” the intensivist says.

How do you define ‘futile’?

There are few figures that measure the extent of futile treatment for elderly patients. The definition of what is futile, given the uncertainties in clinical prognosis, makes it hard enough – a best-guess judgment made after the fact.

Instead we have crude proxy measures. One of them is the number of deaths that are now occurring in ICU.

In Australia it is around one in 11. It’s rising. It isn’t hard to imagine us reaching the American benchmark, where today 20% of all people die in ICU.

Back in his office, the intensivist shifts through the bundles of papers littering his desk – most of this the debris of hospital administration.

But he lifts out sheets and hands them over. “Some of the data is unpublished, but it’s being collected and it is interesting. Come and look at this.”

Or do they fancy there’s really been no change,
And they’ve always behaved as if they were crippled or tight,
Or sat through days of thin continuous dreaming
Watching the light move? If they don’t (and they can’t), it’s strange;
Why aren’t they screaming?

It’s a bar chart showing the percentage of total hours spent in Australian ICU beds by patients over 80 – another very crude proxy indicator of inappropriate care. In 1987, it was about 2.5%.

Fifteen years later it was about 9%.

Until 2005, the last year the data was available, it had been rising at an average rate of 14% a year.

“This is not about [advocating] triaging by age. The evidence is unclear on that. There are patients in their 80s who need to be here.

It is always going to be a best guess but you can see they are usually going to come out the other side [of ICU] with some quality of life.

They will be back mowing the lawns. For many others that end up in the unit, it’s a harder guarantee to offer.”

The role of hospitals

Professor Ken Hillman, professor of critical care at the University of NSW, has played a pioneering role in the development of intensive care. Back in 1980 he sat the first ever examination in intensive care, at Sydney’s Royal North Shore Hospital.

It turned out he was the only candidate, making him the first formally trained intensive care specialist in the world.

Almost 30 years later, like many of his colleagues in the hospital system, he is now questioning the role intensive care is being asked to take on in the treatment of the elderly.

“A generation ago, the GP could reassure my family when my grandfather was dying that there was nothing more that could be

“But they were usurped. The hospitals became the self-proclaimed flagship in healthcare and suddenly there was something that could be done,” Professor Hillman says.

“The irony now is that sometimes these people can die painful and protracted deaths in the hospital system.

“People are trying their best, but this conveyor belt runs continuously. Sick at home? Dial triple 0. Sick in the GP waiting room? Then triple 0. The next stage – you get to the ED and the major function of the ED is to assess, resuscitate and package. There are few resources for assessing the home circumstances and the medical history and the prognosis,” he says.

“And it is then when it all starts – the tube goes in, the machine is switched on and at the ICU we are rung up by the emergency department and … told you need to accept this patient. What do we do?”

Professor Hillman says many of the problems arise because doctors have become increasingly specialised and compartmentalised, making it difficult for them to understand each other’s boundaries and capabilities.

“All my colleagues know is that when a patient gets really sick they can ring us up, send them on and some of them come back alive. But many do not understand the limits of modern medicine and that is why it’s so hard for so many to offer a diagnosis of dying, to say to families and relatives that there is nothing more that can be done.”

The birth of ICU

Intensive care is a young field. It started in Copenhagen in 1952 during a poliomyelitis epidemic. Two doctors – Drs Bjørn Ibsen and Henry Lassen – were seeing 50 patients a day arrive at Blegdams Hospital, 80% of whom were dying.

They came to believe that patients were being killed by carbon dioxide retention as a result of respiratory failure. They tried tank ventilation on a dying 12-year-old girl. It didn’t work. Then they artificially ventilated the child with a rubber bag through a tube inserted through her mouth. It saved her life.

To deal with the large numbers of patients, Dr Lassen brought in medical students and others to manually ventilate the polio victims.

They worked six-hour shifts, 24 hours a day in a dedicated recovery room. By the end of the outbreak, about 1500 students put in a total of 165,000 hours. Mortality rates fell to 25%.

The “life support” machine and intensive care was born.

Dr Ibsen and his fellow “intensivists” were at first regarded by the medical profession as anaesthetists who “should have stayed in their box”, Professor Hillman says. But the demonstration of the ICU specialty’s power left its mark. The rise of intensive care has been inexorable – at least in Western countries with the resources to pay for it.

Today, in the life and death world of the ICU it costs $750,000 to keep one bed open for one year – about $3300 per patient, per day.

“In 1985 I worked in a six-bed unit,” Professor Hillman says. “Now there are plans [this year] to build [a 60-bed unit].”

Administrators are pouring money into the specialty, but Professor Hillman has questions.

“No one is allowed to ask, ‘Is this the right thing?’ It’s too difficult. We, as a specialty of intensive care, have been complicit, I suppose. The beds are needed. I know they have real value. They are going to save people’s lives.

“But what concerns me is just how far we should go in artificially sustaining life when many of us who work in intensive care believe
it is going to be futile.

“Why is intensive care allocated so many resources? It is largely a matter of it being easier to escalate care in an incremental fashion rather than stop, stand back, discuss and consider withdrawing and withholding therapy.”

At death you break up: the bits that were you
Start speeding away from each other for ever
With no one to see. It’s only oblivion, true:
We had it before, but then it was going to end,
And was all the time merging with a unique endeavour
To bring to bloom the million-petalled flower
Of being here. Next time you can’t pretend
There’ll be anything else. And these are the first signs:
Not knowing how, not hearing who, the power
Of choosing gone. Their looks show that they’re for it:
Ash hair, toad hands, prune face dried into lines –
How can they ignore it?

A painless death

Light blisters the curtains, late summer sun filling the room where Michael is dying. He’s lying on the nursing home bed with his hands clasped tight under his chin, mouth slack and blue eyes swimming blindly beneath the tears. His body continues its grasp for breath.

“He’s got a few days left to live,” Dr Ashley Morgan says. “He’s not been eating. The dementia is advanced. You can see that. I’m just checking his heart and checking whether he’s in any pain.

“The moaning sounds are probably the dementia. I don’t think that’s pain. If it was we could give him morphine … ”

Dr Morgan goes outside where Michael’s son-in-law, his fists dug tight in his suit pockets, is waiting. Fragments of speech float back
down the corridor of the home.

“He’s close now … no, not swallowing at all…I’m sorry,” Dr Morgan says. The man replies: “Look, thanks doctor.” It will be a painless death at least.

Dr Morgan then goes back to Michael and pulls the covers around him before walking on to another room and another patient,  another reality: “Hello John, how are you this morning?” he asks.

“I’ve been better doc,” a smile spread across his face.

“I just want to give you a flu shot, John.”

Later, over coffee in the main room at the Cardinal Freeman nursing home, in Sydney’s suburbs, GP Dr Morgan says intensivists aren’t the only ones struggling to decide when enough medical intervention is enough.

“I could walk up and down this ward and stop many of the medications these people are on.

“The line between advanced optimum care and the point when palliative care is needed is often blurred.

“There is also little time to talk in detail with the relatives about the issues. The time pressures often mean you end up fiddling around the edges of medicine.

“When you have a person with advanced dementia, when the quality of life is so limited, the judgements about prolonging that life become complicated,” Dr Morgan says.

“You have four or five people – family members – who have a stake in what happens to that person and the strongest power
always lies with the relatives. For very emotive reasons it’s understandable.

“It’s the families who often want active treatment for their mother and father, rather than having the guilt of saying they don’t want any more done. So active treatment means the antibiotics, it can mean resuscitation and the PEG feeds.”

He wants change. Like Professor Hillman, Dr Morgan says the push for continuous intervention from families comes from the faith, instilled by newspapers and TV shows, in medicine’s miracles, a faith preserved by ignorance of its limitations.

Discussions with families about the reality of dementia, about what prolonged dying means, remain difficult.

elderly man in ICU

When bureaucracy intervenes

And the reasons can be as mundane as aged care MBS items.

“You want to sit down with families. You want to talk about dying and about what medicine can and can’t do and the misery that inappropriate intervention can cause. That can’t be done in a 14-minute consultation,” he says.

“And then there are all the other demands you have to deal with,” he says as he points to an office stacked with patient files and forms to be filled in.

Around the nursing home, the residents move in a world where the minutes have slowed to the shuffle of slippered feet across the floor. Many are sat semi-conscious, bedded down under blankets in front of the common room TV.

Dementia is a cruel kind of death that slowly takes you from the inside out.

Stopping treatment for some of these people – isn’t it euthanasia?

Dr Morgan bristles.

“I’ve been working in nursing homes for many years and given people morphine to relieve anxiety and pain. These people are dying. But I would never give morphine at doses that go beyond relieving the stress … I’m relieving their distress.

“We are not actively taking life. It is not that at all. We are looking at whether you should prolong a patient’s life when the likelihood is that they will only suffer.”

Dr Morgan describes the Cardinal Freeman as high quality – the home is well staffed, morale is high, turnover low and the resident’s families visit regularly and they care about how the home is run. He knows far worse places in Sydney.

A lack of government funding

“When I started 20 years ago, there was more time to build relationships with patients and their families.

“But now with the lack of government funding it seems that often only the basic necessities and basic hygiene are being met. You’ve got people who don’t have families to look after them who are under The Guardianship Tribunal [in NSW].

“They are put in the corner when lunchtime comes. They will be fed and bathed but it’s heartbreaking. The vast majority of nursing homes I know have been forced to cut their nursing staff down to a bare minimum, which makes personal care and
personal contact more difficult.”

The cutbacks hurt every nursing home resident, but the cost seems to weigh greatest on those patients who are frail, demented and
nearing the end.

Even at Cardinal Freeman, at 10am there is an ambulance waiting outside.

The crew, dressed in blue jumpsuits, push through the glass doors pulling a trolley behind them. The static cracks on their radios.

Beneath the blankets lies the skeletal frame of an elderly woman, her face hidden. She was an admission to the home last night. She was found semiconscious and the local doctor couldn’t make it in time to see the patient.

So it’s back, via what Professor Hillman calls the “conveyor belt”, to the emergency department at Royal Prince Alfred Hospital.

Thumb through the pages of Quality of Care Principles, the supplementary document for the mammoth Aged Care Act 1997, which was the last landmark attempt to clean up the Australian aged care industry, and you’ll eventually come across Schedule 3, section 18.11.

There is not much to it – it runs to less than a page, little more than 250 words. It’s the bit that fixes in law the mandated healthcare standards for the country’s 2830 aged care facilities: the hostels and the nursing homes that look after the 174,000 elderly Australians whose multiple co-morbidites and acute conditions offer some of the most challenging clinical problems in the health system.

Those 250 words demand only that “residents receive appropriate clinical care”. Nursing needs should be “identified and met by appropriately qualified nursing staff” and medication management “must be managed safely and correctly”. The requirements include regulations on food and water, insisting that “residents receive adequate nourishment and hydration”.

But there is no specific requirement on staff ratios – only that the number of “appropriately skilled and qualified staff are sufficient” to ensure that services are delivered “in accordance with these standards”.

Critically, nowhere is there any indication of what “appropriate” actually means.

Perhaps being old is having lighted rooms
Inside you head, and people in them, acting
People you know, yet can’t quite name; each looms
Like a deep loss restored, from known doors turning,
Setting down a lamp, smiling from a stair, extracting
A known book from the shelves; or sometimes only
The rooms themselves, chairs and a fire burning,
The blown bush at the window, or the sun’s
Faint friendliness on the wall some lonely
Rain-ceased midsummer evening. That is where they live:
Not here and now, but where all happened once.


No definition of what is appropriate

Measured by those standards, the aged care industry has been improving.

Despite the media drip-feed of aged care horror stories, there are only 10 nursing homes in Australia under sanction by the Federal Health Department – namely those deemed to be a “severe risk to the health and safety of residents”.

But not surprisingly, the absence of detailed definitions of “appropriate” has denied government an objective picture of whether the healthcare needs of aged care residents are being met.

A 2005 Senate report called Quality and Equity in Aged Care criticised the standards as being “too generalised to effectively measure care outcomes”.

It quoted a 2001 study commissioned by the Federal Health Department which found that “to the extent that the [Aged Care Standards and Accreditation Agency] does not assess actual care delivered but infers it from the information provided by residents, staff families and relevant documentation, its capacity to provide objective information around care outcomes is limited”.

The Senate committee’s recommendation for benchmarks of care to ensure the level and skill mix of staff met patient’s needs was ignored by the Howard Government. Under Prime Minister Rudd, a review of the standards was promised in March 2008. We are
still awaiting the results.

There are no detailed figures on patient–nurse ratios in aged care facilities – although they would be useful.

The anecdotal reports from those working in the system is that one registered nurse to 50 nursing home patients is common. And those registered nurses often spend their time embroiled in management and administration, rather than offering direct patient care. And they rarely do the night shift, although they may be on call.

Groups like the Australian Society for Geriatric Medicine claim both the “ignorance and skill mix” of those providing care is contributing to the high rates of polypharmacy and abuse of antipsychotics to sedate and control the behavioural problems of dementia patients.

And again, despite the complexity of the patients, “appropriate” pain management and palliative care is often beyond the capacity of overstretched nursing and care staff employed by the aged care operators.

For those homes struggling to attract staff when problems strike in the middle of the night – the only option for the nurse on call is the triple 0 response.

There but for the GRACE

Four years ago, Hornsby Hospital in northern Sydney was serving 27 nursing homes in the local community and those nightly arrivals of nursing home patients to its emergency department were constant – admissions for dehydration, for UTIs, for constipation, for readjusting PEG tubes, even for small leg ulcers.

That year, the hospital started a program it called GRACE – for Geriatric Rapid Acute Care Evaluation – which used outreach workers to educate nursing and care staff at homes about management and treatment. They provided enhanced at-home care for aged care residents.

When hospital admission was necessary, GRACE patients were offered rapid treatment to ensure their hospital stay was as short as possible.

The hospital also developed a Nursing Home and Hostel Emergency Decision Index – a series of protocol driven decision charts that help nursing home staff provide care and determine whether the patient’s condition warrants a hospital referral.

The key element is that every nursing home resident under the GRACE project (about 1200 people currently) is given an advance care plan, and living will, to inform both the nursing staff at the homes and Hornsby Hospital what they want, and more importantly what they do not want, in terms of treatment.

Nadia Yazdani, the project’s clinical nurse consultant, says although not all families are keen to talk about directives when approached, most eventually understand.

“For many of them it’s never a good time, but I will go and see them personally if the nursing home still says they don’t want to talk about [advanced care directives]. I will say to them that they don’t want to see anyone in their family sitting down with a tube down their throat or going through CPR. You have to give them a picture,” she says.

“And they will understand. IV therapy, hydration – I tell them everything to increase quality of life we will provide, but I say there are times to say ‘enough is enough’.”

The GRACE outcomes are simple. The length of stay for nursing home patients at Hornsby fell within 12 months from 7.4 days to 4.2 days.

The number of hospital bed days taken by the nursing home residents per month dropped from 536 a month in November 2005 to 300 a year later. In 2008 the figure was just 55 a month.

Similar schemes have run elsewhere. St Vincent’s and the Prince of Wales hospitals in Sydney ran a trial that involved hospital outreach teams visiting 19 nursing homes to provide IV antibiotics and blood transfusions.

Residents, carers, relatives, GPs and nursing home staff were also educated about drawing up advance care directives for the residents.

Within three years there was a 35% decrease in admissions from nursing homes involved in the program compared with a 20% increase in admission of residents from the homes that acted as the control group.

The findings were published in 2006 in the journal Age and Ageing (2006; 35:581-85). In that article, the researchers acknowledged the damage caused by the failure to discuss alternatives to treatment, referring to “brutal hospitalisation” where residents too frequently underwent “gruelling” and ultimately futile procedures.

They also found that for many families, being asked to discuss future care was the first time anyone explained what the natural history of dementia was, or that their relative in a nursing home was actually dying.

Near the time of their death, up to half of all Australians will not be in a position to make their own decisions, according to the Australian and New Zealand Society of Palliative Medicine.

Despite this, advanced care planning is struggling to take hold in Australia. Less than 5% of high-care patients in residential nursing homes have directives for instance – this among a cohort whose average age on entry is 82 and where about 80% will have been diagnosed with dementia or exhibit conditions consistent with a dementia diagnosis.

The demand is there. But differences between state and territory legal systems mean a directive written in the ACT can lose its legal status across the border in NSW.

Another problem is that even when directives are written, they struggle to follow the patient through to the point where care is being delivered, particularly when it’s the hospital. Doctors remain confused, and amid confusion the default option for treatment is the medicolegal version of safety first – and that usually means intervention.

elderly person in nursing home

Will change ever come?

There are calls for change. The National Health and Hospitals Reform Commission is keen on living wills. Its blueprint for reform of the health system will not go before the Health Minister until July, but even now it’s clear that it will be pushing for advanced directives to be embraced.

In a preliminary report, the commission said that Respecting Patient Choices, an advanced care planning program launched at Melbourne’s Austin Hospital seven years ago, showed patients on the program had an 18% chance of hospital admission, with an average length of stay of 6.9 days before they died.

Outside the program, patients faced a 46% chance of hospital admission with an average length of stay of 15.3 days.

The commission concluded that if implemented nationally, Respecting Patient Choices would be the “equivalent to a saving of about $250 million annually”.

Professor Michael Ashby, professor of palliative care at the University of Tasmania, is wary of these arguments.

If the drive for advance care planning is discussed in terms of cost savings, he believes advocates will struggle to fight the public perception that it’s about rationing care on the basis of age – and that can easily mutate into the euthanasia debate. This, he suggests, is why the politicians have steered clear.

“Politicians do understand the [damage that excessive medical intervention brings]. But at the back of this debate is the big fear that any move to stop a particular intervention will be picked up and used to damn them. You can imagine the headlines.

“When you get drawn into these areas, the apparent denial of care generates debates about euthanasia. The activists on both sides of the [euthanasia debate] are keen for that to happen,” Professor Ashby says.

“But this issue is not about euthanasia. It’s about alleviating human suffering among those who are dying. It’s about recognising that interventions making the smallest marginal difference are being given despite the adverse effect on patients and their real needs.

“The technology has moved forward but we are struggling as a profession and as a society to deal with its implications, and that is we are often not allowing people to die in a dignified and humane way.”

… For the rooms grow farther, leaving
Incompetent cold, the constant wear and tear
Of taken breath, and them crouching below
Extinction’s alp, the old fools, never perceiving
How near it is. This must be what keeps them quiet:
The peak that stays in view wherever we go
For them is rising ground.

A more fundamental shift is needed, he says, and it’s one not easy to legislate: the culture shift in our ability to discuss death, an awareness of what happens when it’s become hidden behind the walls of the nursing homes and the aged care hostels.

In the public space there is little acknowledgment of what modern dying in Australia actually looks like. Aged care facilities have moved out of town and become gated communities, dislocated from mainstream life. The dementia units are locked down like prisons. And it’s difficult to say whether it’s about keeping society out or providing an excuse for society not to look in.

This may not be new – it was happening from the first generations after the horrors of World War II. It is just that 60 years on, we show no desire to disturb the comforts we believe such ignorance brings.

Philip Larkin finished The Old Fools, the poem that runs through this article, in 1973.

His mother Eva, who had Alzheimer’s disease, was living in a nursing home at the time.

For Larkin, fear of death – or perhaps more precisely fear of oblivion – was an obsession that ran through his life.

The Old Fools was about his anger at the humiliation of ageing. Certainly it is hard-edged, and stripped of sentimentality to the point of mockery. And it seems to draw a hard line between them and us.

But it is a line that dissolves beneath the acid truth of those final words:

Can they never tell
What is dragging them back, and how it will end?
Not at night?
Not when the strangers come? Never, throughout
The whole hideous inverted childhood? Well,
We shall find out.