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Ambulance to leave them to die

Ambulance crews are being told not to take patients to hospital if they have been put on controversial ‘death lists’ drawn up by GPs.

Serious concerns were raised last year after it was revealed that thousands had been placed on ‘end-of-life’ care registers so they could be helped to die rather than receive hospital treatment.

Now The Mail on Sunday has learned that ambulance crews responding to 999 calls are being alerted if a patient is on a list, and can refuse to take them to hospital if they have previously expressed a wish to die at home.

Senior doctors described the scheme as ‘very worrying’ and fear it could repeat the failures of the Liverpool Care Pathway (LCP), a set of clinical guidelines for the dying that was scrapped earlier this month following a damning independent review.

Critics said that under the new scheme, patients might not realise the consequences of choosing to die at home.

They said it could mean paramedics deciding to leave them there rather than taking them in for what could be life-saving treatment.

They added the system would cause unnecessary worry to relatives who found they were unable to rely on emergency hospital care when they called for it.

Under the scheme, when someone on an ‘end-of-life’ care register calls 999, their names will be flagged up on an electronic database, revealing whether they have expressed a wish to die in their own bed.

The ambulance crew will then decide whether they should take them to A&E or call in other health professionals to treat them at home.

NHS bosses admitted paramedic crews were not experts and said they should consult the patient’s doctors  if they had any doubts – though they conceded that could be difficult to do.

But London-based hospital consultant Dr Philip Howard said: ‘Patients may have said they want to die at home but at three o’clock in the morning, when they suddenly become breathless, the family panic and they want to go to hospital.

‘It must be very distressing if you have got somebody who is dying with a lot of pain and you can’t access the doctors.’

Neurologist Professor Patrick Pullicino said: ‘I don’t think ambulance crews should be involved in these decisions ethically. If you call an ambulance you expect to be taken to hospital.’

The new row comes just weeks after Sir David Nicholson, the chief executive of NHS England, said that future NHS planning would focus largely on care in the community for the elderly and people with long-term conditions, and ‘providing services wrapped around their needs that prevents admission to hospital’.

HOW THE ‘DEATH LIST’ RULES WORK

If paramedics think a patient is dying, they must follow their wishes – unless there is an overriding medical reason not to do so

It aims to reduce patients taken to hospital who want to die at home

Critics say paramedics may fail to take treatable patients to A&E

Health bosses have tried for years to reduce the number of people dying in hospital because surveys have shown that many more people would like their lives to end in their own beds than actually do.

But critics fear there is a financial motive behind the plans – and official estimates seen by The Mail on Sunday suggest the NHS could save more than £50 million a year if it slashed the numbers dying in hospital.

Over the past two years GPs have been asked to compile lists of one in every 100 of patients who they believe will die within 12 months.

Doctors are under no legal obligation to tell these patients they are even on these lists, leading to fears of secret ‘quotas’.

But doctors are asking many of these patients whether they want to agree to care plans, including where they want to die, and ‘living wills’ in which they can instruct medics to withdraw life-saving treatment if they become incapacitated in hospital.

Only when these care plans are in place are patients – three-quarters of whom say they want to die at home – flagged up to ambulance crews.

Ministers want all patients close to death to have these care plans in place, with IT systems that flag them up to local ambulance services, hospitals and GP surgeries.

Crews are alerted en route if a patient has a care plan in place so they can assess them on arrival. If the patient’s problem is not linked to their terminal illness, they may be taken to hospital.

But if it is appears to be part of the illness detailed in their care plan – such as the patient experiencing much more pain than normal – then the crew would have to decide whether or not to take them into hospital.

Senior London Ambulance Service paramedic David Whitmore, who helped set up the capital’s Coordinate My Care (CMC) system, said: ‘At the end of the day if the patient’s wish is to die at home, we have to do our level best to honour that wish.’

But he said paramedics were not typically trained to spot if someone was entering the final hours of life – meaning the decision about whether or not a patient would benefit from A&E treatment could be difficult.

There was a pressing need for ambulance crews to be better trained at identifying the signs of impending death, he said, and patients and carers had to understand that death at home could be very difficult to deal with.

‘When you ask people where they would like to die most people will say “at home”. Often the reality can be very distressing. Understandably they forget to call the palliative care teams and call 999.

The CMC helps us to get that back on track and reduce unnecessary admissions to hospital.’ The register is held at the service control room and information is relayed to crews when answering an emergency call.

Whitmore said the intention is to have up to 57,000 patients on the system in the next few years. But Elspeth Chowdharay-Best, honorary secretary of the Alert pressure group, said: ‘We are told repeatedly that most people want to die at home.

‘They don’t actually mean that they want to die quite soon, but that is what might happen if an ambulance refuses to take them to hospital.

‘Are these people warned when this choice is recorded that they may become very ill when they are dying, so that their elderly husband or wife may have to provide 24-hour nursing for an indefinite period?’

Whitmore said health teams had to be ‘bolstered’ to ensure families were not left to cope alone as a loved one died.

A guide produced by the Association of Ambulances Chief Executives says that the service is making the changes because  it is fully committed to developing ‘high quality end-of-life care’.

The document, Route To Success, also envisages a benefit to the NHS of ‘decreased costs, due to a decrease in unnecessary hospital admissions’.

Economic models published by the NHS in May suggest that encouraging more people to die at home with care plans could save up to £275 million over five years. Each hospital death costs £1,480 but those at home are cheaper, it noted. The policy is part of the Department of Health’s end-of-life care strategy.

Dr Julia Riley, from London’s Royal Marsden Hospital, who has been instrumental in setting up the system, stressed that doctors needed patients’ consent to set up care plans about how they wanted to be treated in their final days.

She believed doctors were wrong to fear that patients who chose to die at home would be denied potentially life-saving hospital treatment.

‘There will always be one-offs, but we have now created 6,633 urgent-care records and the feedback from GPs, patients and relatives has been overwhelmingly positive,’ she said.

She added that ambulance crews can ‘override’ care plans and take patients into hospital if they thought that was in their best interests.

But she was worried that the system could be rolled out too fast. Fewer than 7,000 people have agreed to these care plans so far in London, which is by far the biggest system of its type.

If all of England is covered by them, the number will eventually top 400,000.

The Liverpool Care Pathway, which started as a way of helping cancer patients have a comfortable death in a handful of hospices, became discredited in part because it was badly put into practice once it was rolled out to many hospitals.

Dr Riley said she believed this would not happen with the CMC system because it enabled doctors to get weekly feedback on how it was working.

But Dr Gillian Craig, a retired consultant geriatrician from Northampton, said that the philosophy underpinning end-of-life care registers was ‘deeply flawed’.

‘It sounds an unwise and unsatisfactory arrangement and I would question the accuracy of a GP’s prediction that any individual patient is going to die within 12 months because predictions such as these can be often way out – years out.’

Another problem with the policy, she added, was that it would be difficult to police unless a post-mortem was carried out on every patient who died in their own homes to see  if ‘there was something that could have been treated and should have been treated’.

‘That is extremely unlikely to happen,’ Dr Craig said.

Source - The daily Star