Elder Care, Palliative Care, Liverpool Care Pathway — Still Very Controversial, Confused, Often “Irregular” in The UK — Who Decides “It’s Your Time To Die”?

Around the clock care for dying ‘not good enough’

  • 31 March 2016
  • From the section Health

Palliative care - file picture

AMELIE-BENOIST / BSIP/SPL

A national review of end-of-life care has found most hospitals are failing to provide face-to-face palliative care specialists around the clock.

The review shows only 16 of 142 hospital sites in England offer specialists on site 24/7.

NHS experts acknowledge steady improvements in the last two years, but warn there is still work to do.

It’s the first review since the controversial Liverpool Care Pathway was scrapped.

‘Major deficiencies’

The Liverpool Care Pathway was phased out amid criticisms it had been misused as a tick-box exercise, leaving some patients without food and water.

In its place a series of guidelines has suggested moving away from a one-size-fits-all approach, instead focusing on individual care.

This report, led by the Royal College of Physicians, shows there have been improvements in all areas.

Researchers found, for example, that communication with patients and relatives had improved.

But there were still a number of concerns.

In 18% of more than 9,000 patient notes researchers examined, there was no written evidence to suggest that do-not-resuscitate decisions had been discussed with relatives or friends.

And in around 3,000 notes there was no evidence that the patient’s ability to eat and drink had been assessed on the last day of life.

But the researchers’ main concern was that many patients and doctors did not have full access to on-site palliative care specialists at evenings and weekends.

Out of hours

The majority of hospitals did offer a specialist telephone helpline at all times and 53 of 142 hospital sites offered face-to-face palliative care on Monday to Sunday between 9am to 5pm.

But for 26 trusts there was no record of face-to-face specialist palliative care involving doctors at any time.

Study-lead Dr Sam Ahmedzai said: “We know that most front-line doctors and nurses giving end-of-life care do it to a very good standard.

“But the problem happens when things start to go wrong and often they go wrong out-of-hours in the middle of the night and at weekends.

“Then doctors and nurses who may be inexperienced need to be able to access specialists in palliative care.”

He says without this, patients with complex problems may not get the care they need.

Julie Coombes

Julie Coombes’ father found out he had bowel cancer in May 2015. He was in and out of hospital for three months. But Ms Coombes, 33, from Plymouth, says her father didn’t feel he had good care there. She says his symptoms and sickness couldn’t be controlled, so the family decided to take him out of hospital to die at home.

She said: “While he was in hospital the palliative care team came for about five minutes, while he was in his bed with everyone around and just said you are going to die.

“Apart from that we did not get any leaflets or any help… It is not something I would want anyone else to experience.”

‘Not right’

Dr Kevin Stewart of the Royal College of Physicians said he was encouraged by the improvements.

But he added: “We are disappointed that there are still major deficiencies in the provision of specialist palliative care at nights and weekends by many trusts; patients and their families deserve the same level of service whatever the day of the week.”

Dr Adrian Tookman, clinical director of the charity Marie Curie, which part-funded the review, said: “We can’t ignore the fact that the vast majority of dying people and those close to them still have limited or no access to specialist palliative care support when they need it in hospital. This is not right, nor good enough.

“Care of the dying has no respect for time, so if we are to deliver a consistent seven-day service by 2020, it is critical that funding is directed towards recruiting and training doctors and nurses to provide specialist care now.”

Dr Tookman told BBC Breakfast there was also “an organisational issue”, over how managers supported services within hospitals.

He acknowledged the difficulties for families of patients but said they had to “speak up and demand the right care”.

Amanda Cheesley of the Royal College of Nursing told BBC Radio 4’s Today programme that end-of-life care raised complex issues and among nurses there was “still a fear of doing the wrong thing”.

NHS England, which commissioned the review, welcomed the improvements, but said it was clear that more could be done.

A spokesperson added: “Although this audit presents a snapshot of end-of-life care within NHS hospitals, there are clear variations in the support and services received – and there are areas where improvements must continue to be made.”

http://www.bbc.com/news/health-35916268

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‘Arrogance’ of doctors STILL using banned death pathway because ‘they think they know what’s best for patients’

 

  • NICE publish major guidelines telling doctors to change methods
  • It warned medics are still following the banned Liverpool Care Pathway
  • LCP involved withdrawing food, fluid and medication from terminally ill
  • Hospital staff told not to make ‘snap decisions’ on those near death 

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By SOPHIE BORLAND, HEALTH CORRESPONDENT FOR THE DAILY MAIL
PUBLISHED: 20:05 EST, 15 December 2015 | UPDATED: 08:04 EST, 16 December 2015

Doctors are still following the abolished Liverpool Care Pathway because they think they know best when it comes to caring for dying patients, the health watchdog has warned.

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Concerns have prompted NICE to publish major guidelines today, reminding hospital staff not to make ‘snap decisions’ about the fate of those near death.

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The highly controversial LCP involved withdrawing food, fluid and medication from the terminally ill.

The controversial pathway involved withdrawing food, fluid and medication from the terminally ill (file picture)

The controversial pathway involved withdrawing food, fluid and medication from the terminally ill (file picture)

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It was meant to reduce suffering but the Daily Mail repeatedly highlighted how it was being widely abused with tragic consequences.

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Professor Sam Ahmedzai, chairman of the committee at NICE, said 18 months after the LCP was effectively banned, it was still being used by some ‘teams’ of doctors who ‘thought they knew how to give end of life care’.

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But he added: ‘It turns out they’re the ones that don’t know.’

NICE’s new guidelines aim to ban the pathway once and for all and also calls for:

  • Junior doctors not to be left alone to make ‘snap decisions’ about patients’ care;
  • An end to the ‘tick-box’ culture with patients treated with respect and as individuals;
  • Staff to be aware that patients who appear to be dying could stabilise or even recover;
  • Doctors to ensure patients have enough to drink and to put them on a drip if needed.

Read more: http://www.dailymail.co.uk/news/article-3361844/Arrogance-doctors-using-banned-death-pathway-think-know-s-best-patients.html#ixzz4EwlniphW
Follow us: @MailOnline on Twitter | DailyMail on Facebook

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In the worst cases the LCP, which was introduced in the 1990s, saw patients denied sustenance for several days before their deaths, while others were written off even though they could have recovered.

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The Government ordered an independent review in 2012 which recommended that hospitals abolish the practice by July 2014.

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Professor Ahmedzai, who specialises in palliative care at Sheffield Teaching Hospitals, said he was unable to name how many doctors were still using the pathway or identify individual trusts.

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However, he revealed: ‘I’m aware that there are some teams up and down the country who I have to say bury their heads in the sand and say, “Well, we’re not going to change”.

‘Woe betide them. They need to open their minds up to the fact that now we’ve got this new guidance.’

NICE have issued guidelines telling hospitals not to make 'snap decisions' 

NICE have issued guidelines telling hospitals not to make ‘snap decisions’

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Read more: http://www.dailymail.co.uk/news/article-3361844/Arrogance-doctors-using-banned-death-pathway-think-know-s-best-patients.html#ixzz4EwlzSNlg
Follow us: @MailOnline on Twitter | DailyMail on Facebook

Earlier this year nurses and other experts gave evidence to MPs on the health select committee that the pathway was still being used by hospitals ‘under a different name’.

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They included Adrienne Betteley, an expert in end-of-life care for the cancer charity Macmillan, who said: ‘There are areas that I know that have almost tweaked the original document and called it something else – and that is very concerning.

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‘It means it will potentially remain a tick-box exercise.’

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Grieving families have also spoken of how their loved ones were put on the Liverpool Care Pathway after it was abolished.

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They include 93-year-old Margaret Nellie Smart, who died at Warrington hospital in October last year.

Margaret Nellie Smart, 93, pictured, who died at hospital in Warrington, was on the LCP

Margaret Nellie Smart, 93, pictured, who died at hospital in Warrington, was on the LCP

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Professor Ahmedzai said: ‘Doctors and nurses just have to be more respectful of the patients that they are looking after.

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‘You don’t need a lot of intensive scientific training to encourage people to show respect and give compassionate care.

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‘We would want to have an individualised approach rather than applying a blanket approach, as would apply using the LCP in an unthinking way.’

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Referring to the pathway, he added: ‘There were also problems with inexperienced staff recognising when someone was truly close to death, or if they had a possibility of recovery.’

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He also warned of a ‘postcode lottery’ in the availability of consultants at night, meaning junior doctors were left to decide whether patients were dying.

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Professor Patrick Pullicino, a consultant neurologist at East Kent University Hospitals, said the latest guidelines were as ‘flawed’ as the LCP because staff were still being asked to ‘diagnose’ dying.

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He said it would lead to many ‘inappropriate deaths’.

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Worrying claim: Professor Patrick Pullicino said doctors had turned the use of a controversial ¿death pathway¿ into the equivalent of euthanasia of the elderly

Worrying claim: In Britain, Professor Patrick Pullicino said doctors had turned the use of a controversial ‘death pathway’ into the equivalent of euthanasia of the elderly

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But Claire Henry, chief executive of the National Council for Palliative Care, said: ‘At its best, end-of-life care in the UK is world class but there is huge inconsistency. That’s why these new NICE guidelines are so important and so welcome.’

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Duleep Allirajah, head of policy at Macmillan, said: ‘We hope that these new guidelines will do much to tackle the unacceptable level of variation that we sadly still see in end-of-life care across the country.’

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Read more: http://www.dailymail.co.uk/news/article-3361844/Arrogance-doctors-using-banned-death-pathway-think-know-s-best-patients.html#ixzz4EwjzkQCX
Follow us: @MailOnline on Twitter | DailyMail on Facebook

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We at Peace and Freedom became more involved in Palliative Care after seeing the Liverpool Care pathway used in the United States.

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One Response to “Elder Care, Palliative Care, Liverpool Care Pathway — Still Very Controversial, Confused, Often “Irregular” in The UK — Who Decides “It’s Your Time To Die”?”

  1. daveyone1 Says:

    Reblogged this on World4Justice : NOW! Lobby Forum..

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