Liverpool Care Pathway – Painting Over The Cracks

Here is IJCP (International Journal of Care pathways) -

Welsh Collaborative Care Pathway Project; 10 years experience of implementing and maintaining a care pathway for the last days of life

1. R Johnstone⇓, 
2. A Jones and 
3. A Fowell

+Author Affiliations

1. Department of Palliative Care, Betsi Cadwaladr University Health Board, Bodfan, Eryri Hospital, Caernarfon, UK

1. Correspondence: Rosalynde Patricia Johnstone, Department of Palliative Care, Bodfan Eryri Hospital, Caernarfon LL552YE, UK (Fax: 01286 662792; Email:rosalynde.johnstone@wales.nhs.uk)

Abstract

This paper describes the progression over 10 years of a project to implement a care pathway for the last days of life across Wales, leading to a major revision of the pathway in 2010. An initial 38 sites throughout Wales representing hospital, hospice and community settings registered. This has led to a robust end of life care network across the principality. In 2007 an annual audit cycle was established, with outcomes being fed back to the participating sites as well as informing an annual review of the integrated care pathway (ICP). In 2010, there are now over 100 sites using the ICP to deliver high-quality end of life care to patients in Wales. There has been a drop in the number of recorded variances of symptom problems. As a result of widespread adverse publicity, a fundamental re-write of the pathway was carried out. The new pathway was launched at a national conference and all teams provided with new documentation and explanation for the need to change. Within three months, most teams were using the new ICP and individual visits were carried out to those that had difficulty. In conclusion, it is possible to implement, sustain and maintain the use of an ICP for the past days of life over a large and varied geographical area. Major changes can be implemented quickly if sufficient involvement and explanation are carried out. The lessons learnt are transferable to other disciplines seeking to use an ICP.

• Accepted February 24, 2011.

• © The Royal Society of Medicine Press

As a result of "widespread adverse publicity, a fundamental rewrite of the pathway was carried out." Really...?

"There has been a drop in the number of recorded variances of symptom problems. As a result of widespread adverse publicity, a fundamental re-write of the pathway was carried out. The new pathway was launched at a national conference and all teams provided with new documentation and explanation for the need to change. "

We are talking here about the the placing of a living human being on a program of  protocols that is going to end their life. What 'adverse publicity' would that be that forced a 'fundamental rewrite'? A medical protocol should be grounded in and  founded on the hard facts and disciplines of medical science, not subject to and amended at whim by way of a reaction to some 'adverse publicity' reported anecdotally. Meanwhile, the actual anecdotal evidence mounting up goes mostly unreported and ignored.

Is it that there is no hard and fast 'science' involved, perhaps? After all -

"We know that prognosis is not accurate and we often get our predictions of prognosis wrong. A tool based upon prognosis is therefore dangerous as it may become a decision that a person will die. " ((Dr Philip Howard)

And nothing is ever a foregone conclusion. We are not Gods: we cannot tell with certainty, but must work with the situation and the individual.

"Predicting death in a time frame of three to four days, or even at any other specific time, is not possible scientifically." (Professor Pullicino)

And from the CARE2 LCP Petition site -

23:40, Dec 02, Dr. Patrick Pullicino, United Kingdom
It is not scientifically possible to diagnose impending death as the LCP purports to do. The LCP is instead an assessment of the perceived quality of life of the patient by the medical team and as such is euthanasia.

Giving the ship a fresh coat of paint will not disguise its purpose nor remove its flaws!

A 'robust' implementation of the protocols must also ensure a conformity of outcomes and 'a drop in the number of recorded variances of symptom problems.' Patients are being treated as falling into a category rather than as individuals.

This is MAX PEMBERTON in The Telegraph:

No pill or potion is a

match for compassion

I have often seen this happen; patients you are convinced will follow a clear, definable illness-trajectory prove you wrong. It's this unpredictability that makes medicine so fascinating; the fact that the body has a remarkable capacity to confound expectations. Even for those with a terminal illness, there can be no certainties. It's for this reason that I despair of the Government's new treatment pattern for palliative care. The "Liverpool Care Pathway" involves a series of tick-box assessments, which aim to assess the likelihood of death in patients deemed to be terminally ill in hospitals, nursing and residential homes. 

Liverpool Care Pathway – And The Rationing Of Resources

Dr. Ezekiel Emanuel has discussed in his philosophical treatise, "Where Civic Republicanism and Deliberative Democracy Meet", how best to apportion care in the circumstance of a scarcity of care provision with 'both procedural and substantive insights for developing a just allocation of health care resources' and the allocation of those scarce resources considered or not considered as basic.

Vile ideas have been and are being everywhere ‘floated’ and to what purpose and for what agenda, we care not to think – or dare not to imagine.

Imagine not -

The NHS is in dire financial straits. Both those of this and those of that political ilk each lay the blame at each other's door. Much of this 'blame' must be laid at the door of the PFI's (Private Finance Initiatives) indulged in frivolously and thoughtlessly by the last Labour government.

The Private Finance Initiative (PFI)

The Private Finance Initiative (PFI) was announced in the 1992 Autumn Statement with the aim of achieving closer partnerships between the public and private sectors. It was one of a range of policies introduced by the Conservative Government to increase the involvement of the private sector in the provision of public services. Following two reviews of the PFI by Sir Malcolm Bates, the present Government has continued to pursue the delivery of some public services through this means.

As at 1 September 2001 there had been almost 450 PFI deals signed with a total capital value of £20 billion. The increased level of activity must be paid for by higher public expenditure in the future, as the stream of payments to the private sector grows. PFI projects signed to date have committed the Government to a stream of revenue payments to private sector contractors between 2000/01 and 2025/26 of almost £100 billion.

Here is The Telegraph reporting just last week -

Hospitals 'can't cope' with rise in elderly patients

Hospital wards are “on the brink of collapse” due to ever-increasing numbers of elderly patients and weekend staff shortages that are seriously compromising safety, according to a hard-hitting report by the Royal College of Physicians.

THE LIVERPOOL CARE PATHWAY - AN 'UNLAWFUL' PRACTICE

An unlawful practice? That reasoning appears perfectly valid.

This is the act of taking life, however, and if that taking of life is 'unlawful' then that is murder and that is a sobering thought.

That this taking of life is State-sponsored is not merely frightening, it is scandalous.

This State-sponsorship goes further than merely promoting the LCP protocols, however; it extends to the DOH-sponsored Commissioning for Quality and Innovation (CQUIN) payments made to Trusts to bribe them into setting in place LCP protocols.

Just last October, the MailOnline asked –

Is this what we get for spending MORE on the NHS than ever before?

and replied -

Shameful neglect of the elderly in ONE FIFTH of our hospitals breaks the law, says watchdog.

 TheTelegraph Medical Correspondent, Stephen Adams, reported today -

NHS under pressure with more trusts in the red

Number of NHS trusts in financial difficulty has more than doubled in a year, an Audit Commission report warns.

Under such pressures of shortages and scarcity, it is clear where and how the choices and decisions are being taken.

As managers squeeze doctors to squeeze "more value from every £1 they spend", communitarianism is coming into its own.

 

Hospital closures inevitable and NHS operation rationing will continue, warns think-tank

NHS patients should expect continued rationing of common operations for years to come, while hospital closures are “inevitable”, according to an influential think-tank.

Prof Appleby questioned how much impact limiting access to such procedures actually had on improving
the finances of primary care trusts (PCTs), which pay for treatments in hospitals Photo: ALAMY

By Stephen Adams, Medical Correspondent

10:00PM BST 29 Jun 2012

John Appleby, chief economist at The King’s Fund, also warned services in some hospitals could seriously deteriorate due to the impact of the economic crisis.

He said it was highly unlikely the NHS budget would be significantly increased in the foreseeable future.

Against this grim financial background managers are being asked to get 5p more value from every £1 they spend, every year, partially to keep up with the increasing demands of an ageing population.

Patients have already experienced the effect of this. For example, nine in 10 trusts have introduced tighter criteria to qualify for a range of procedures deemed to be of ‘low clinical value’ - including hip and knee replacements, cataract removals and weight-loss surgery.

Doctors and patient groups have argued that these are unfair and will be more expensive in the long run.

But Prof Appleby said the “financial imperative” was so pressing that such restrictions were likely to continue well beyond 2015.

He said: “In terms of disinvesting from comparatively low value treatments, I would expect that to go on, even though it’s extremely difficult if it’s a case of withdrawing a service.”

However, he questioned how much impact limiting access to such procedures actually had on improving the finances of primary care trusts (PCTs), which pay for treatments in hospitals.

And he said the NHS needed to make “a quantum leap” to keep raising productivity year after year, to save a cumulative total of £50 billion by 2020.

Restricting some operations, plus “shaving a bit off the length of stay in hospitals and changing to low energy lightbulbs isn’t going to do it”.

Politicians had to grasp the nettle and tackle more fundamental questions, he said, such as the fact that there were “too many hospitals in the wrong places”.

“The system of care is not as good as it could be if we reorganised it,” he said.

Earlier this week, The Daily Telegraph disclosed that South London Healthcare NHS Trust, which runs three hospitals, was on the brink of bankruptcy and could soon be run by a management team appointed by ministers. Exactly what will then happen to it is unclear.

But senior figures say this is not an isolated example, and there are many other hospital trusts in dire financial problems, particularly in outer London and the south east, that could go the same way.

Asked if closures were inevitable, Prof Appleby said: “In a word, yes.”

Whole hospitals could close, he said, “or relatively small district general hospitals could attempt to withdraw from providing the full range of services and become more specialist”.

In the meantime there was the danger of a poorer and poorer service in underperforming hospitals, he warned.

“I think the worry with that is that there will be certain areas that would start to see deterioration of services to such a degree that the Care Quality Commission has to step in.”

The CQC has the power to close down wards or services until the provider meets safety standards, and can even close them down permanently.

Prof Appleby said: “That’s really serious: it’s patients having to be ferried to other areas.

“If the NHS got to that stage it would be really appalling.”

Earlier this month Mike Farrar, chief executive of the NHS Confederation, warned that without “assertive action”, “the NHS looks like a supertanker heading for an iceberg”.

A Department of Health spokesperson said: "We know the NHS can, and must be, more efficient to meet future challenges. Where the NHS can do things better and save money to reinvest in high quality patient care, it must do so. We have always been absolutely clear that being efficient does not mean cutting services — it means getting the best services to meet patients' needs and the best value for every pound the NHS spends."

Liverpool Care Pathway – If It Looks Like Communitarianism, If It Sounds like Communitarianism, Then It Very Likely Is Communitarianism

It is not just a matter of making a statement; it is a matter of stating the argument, of delineating the nuances and meaning of the matter. What you see isn't always what you see but, sometimes, what is being said really is being said.

We say it is different because of the person who is saying it. But when they are actually saying the same things is there any difference?

Communitarianism is already up and running, here, in the UK –

Communitarianism is already in practice, here, in the UK –

When you’re as good as gone, or almost gone anyway, such as the frail and elderly; when it has been decided that you come into one of those categories of people unworthy of being allocated scarce resources, such as "one of those individuals who are irreversibly prevented from being or becoming participating citizens" described by Emanuel; in such cases, what’s the point of keeping you going? It’s an inconsiderate waste of the State’s largesse.

As Warnock says, it is “wasting people’s lives” and “wasting the resources of the National Health Service.”

Here is the BBC -

13 September 2012 Last updated at 01:21

Down's syndrome patient challenges resuscitation order

By Jane DreaperHealth correspondent, BBC News

A man with Down's syndrome is suing an NHS trust over a hospital's decision to issue a do-not-resuscitate order giving his disability as one of the reasons.

The instruction not to attempt resuscitation in the event of a cardiac or respiratory arrest was issued without his family's knowledge.

Their lawyers describe the order as "blatant discrimination".

East Kent Hospitals University NHS Foundation Trust says it complied fully with guidance from professional bodies.

The family of the man, who can be identified only as AWA because of a court order, remained unaware of the do-not-resuscitate (DNR) decision until he had returned from hospital to his care home.

The DNR form, issued while he was in hospital in Margate a year ago, was listed as an indefinite decision, meaning it would cover the duration of his stay in hospital, with no provision for review.

He has a good way of life now, but somebody wasn't prepared to give him the time of day.

Relative of AWA

The reasons given were "Down's syndrome, unable to swallow (Peg [percutaneous endoscopic gastrostomy] fed), bed bound, learning difficulties".

AWA, 51, has dementia and was having a special tube fitted to help him with feeding.

The form says there was no discussion with his next of kin because they were "unavailable", but the family say they visited him in hospital "virtually every day" - and a carer from his home sometimes attended too.

One of AWA's close relatives, who is pursuing the legal action on his behalf, said: "Until his dementia started three years ago, he had a really hectic social life. He loved parties, discos and going to church.

"He was looked after at home for as long as possible, but then we got him into a nice care home. His health deteriorated a bit - he had eating problems and couldn't swallow - so the decision was taken to have a Peg inserted so he could receive medication, foods and liquids.

"He was admitted to hospital for a fortnight. When he was discharged, one of the carers at his home was unpacking his bag and found the DNR form, to their horror.

"We weren't aware of the DNR until then. We were very angry and quite distressed, especially as he'd been re-admitted that day because he'd got pneumonia.

"Since November last year, he's been right as rain. He has a specially adapted chair, takes part in various activities and is conscious of everybody around him most of the time.

"He has a good way of life now, but somebody wasn't prepared to give him the time of day."

DNR orders are frequently being placed on patients with a learning disability without the knowledge or agreement of families

Mark Goldring Mencap

AWA and his family are represented by solicitor Merry Varney, from Leigh Day & Co.

She said: "This is definitely one of the most extreme cases we have seen of a DNR order being imposed on a patient without consent or consultation.

"To use Down's syndrome and learning difficulties as a reason to withhold lifesaving treatment is nothing short of blatant discrimination.

"If an individual was physically preventing a doctor from administering life-saving treatment to a disabled relative, it would undoubtedly be a matter for the police, yet we see doctors taking this decision without consent or consultation regularly."

Mark Goldring, chief executive of learning disability charity Mencap, said: "We are very disappointed to hear about this case, but unfortunately, we believe that DNR orders are frequently being placed on patients with a learning disability without the knowledge or agreement of families. This is against the law.

"All too often, decisions made by health professionals are based on discriminatory and incorrect assumptions about a patient's quality of life.

"People with a learning disability enjoy meaningful lives like anyone else. Yet... prejudice, ignorance and indifference, as well as failure to abide by disability discrimination laws, still feature in the treatment of many patients with a learning disability.

We have a clear and robust policy in place on DNR which complies fully with national guidance from the proffessional bodies.

Dr. Neil Martin East Kent Hospitals Trust

"Health professions need to understand their legal duties when treating people with a learning disability, and be held to account when their fail to do so."

Dr Neil Martin, medical director for East Kent Hospitals University NHS Foundation Trust, said: "The trust cannot comment on this individual case because it is subject to ongoing legal proceedings.

"East Kent Hospitals has put a great deal in place in recent years to meet the needs of vulnerable patients, including practical steps to improve communication with people with learning disabilities and their carers.

"It has a clear and robust policy in place on 'Do Not Attempt Cardio-pulmonary Resuscitation', which complies fully with national guidance from the professional bodies."

Ms Varney is leading a separate legal case to try to make the Department of Health issue government policy across England on DNR forms, rather than leaving it to professional guidance and policy decisions by individual NHS trusts.

That case is on behalf of the family of Janet Tracey, who died at Addenbrooke's Hospital in Cambridge. It will be heard in the High Court later this year.

Liverpool Care Pathway – The Prophesies of Ezekiel?

Here is Ezekiel Emanuel quoted in Wikipedia -

Without overstating it (and without fully defending it) not only is there a consensus about the need for a conception of the good, there may even be a consensus about the particular conception of the good that should inform policies on these nonconstitutional political issues. Communitarians endorse civic republicanism and a growing number of liberals endorse some version of deliberative democracy. Both envision a need for citizens who are independent and responsible and for public forums that present citizens with opportunities to enter into public deliberations on social policies.
This civic republican or deliberative democratic conception of the good provides both procedural and substantive insights for developing a just allocation of health care resources. Procedurally, it suggests the need for public forums to deliberate about which health services should be considered basic and should be socially guaranteed. Substantively, it suggests services that promote the continuation of the polity-those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations-are to be socially guaranteed as basic. Conversely, services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia. A less obvious example is guaranteeing neuropsychological services to ensure children with learning disabilities can read and learn to reason. Clearly, more needs to be done to elucidate what specific health care services are basic; however, the overlap between liberalism and communitarianism points to a way of introducing the good back into medical ethics and devising a principled way of distinguishing basic from discretionary health care services ^[59]

The Wikipedia article attacks critics of Emanuel and provides source quotes in his defence.

Emanuel claims he has been quoted out of context.The fact is that Emanuel is an advocate of what he calls "communitarianism." 

The above quote originates from 'Where Civic Republicanism and Deliberative Democracy Meet' published by The Hastings Center.

The individual doctor has always responded by treating the individual patient before them, traditionally, according to the Hippocratic Oath. Emanuel is asking that doctors do otherwise, according to the concept of 'the good' whereby the physician is asked to respond to the socially agreed demands of the category instead of the individual demands of the patient.

The patient is categorised and responded to accordingly rather than responded to according to the medical demands of an individual patient. The protocol of the category is easier to respond to; it is 'less fuss', less time-consuming and with evidenceable outcomes. 

A protocol pertaining to category removes responsibility and releases the medical practitioner from tiresome, time-consuming responsive diagnosis. The physician's time is more efficiently and economically spent.

Dr. Emanuel has described as "an absolute outrage" (abc News) his critic's misinterpretation of what he considers a 'philosophical treatise'.

However, Dr. Emanuel is the health-policy adviser at the White House’s Office of Management and Budget. This Presidential Office determines what is affordable within the budgetary constraints and what is not.

In other words, where it may become necessary to ration care.

Dr. Emanuel says:

civic republican or deliberative democratic conception of the good provides both procedural and substantive insights for developing a just allocation of health care resources. 

it suggests the need for public forums to deliberate about which health services should be considered basic and should be socially guaranteed.

it suggests services that promote the continuation of the polity-those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations-are to be socially guaranteed as basic. 

services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia. A less obvious example is guaranteeing neuropsychological services to ensure children with learning disabilities can read and learn to reason.

This is a case of a philosophical discussion quoted out of the context in which it is written, says Dr. Emanuel. But the ideas have been floated for dissemination and discussion. They are 'out there'. 

Here, reported in these pages -

Liverpool Care Pathway – A Blanket Policy Of Extermination

Baroness Warnock 

has said that elderly people suffering from dementia are “wasting people’s lives” and “wasting the resources of the National Health Service” and should be allowed to die. These are the words of a well-respected commentator on medical ethics.

Lady Warnock’s comments were published in an interview with the magazine of the Church of Scotland, Life and Work, and have been condemned by dementia charities.

Jacques Attali
is a leading French intellectual and former President of the European Bank for reconstruction and development.
He has said, "As soon as he goes beyond 60-65 years of age man lives beyond his capacity to produce, and he costs society a lot of money...euthanasia will be one of the essential instruments of our future societies."

Martin Amis 
says euthanasia is 'an evolutionary inevitability'Martin Amis says the 'primitive' Christian notion of the 'sanctity of life' is holding back debate on assisted suicide.

BMA: Let patients die 'to save cash'
Published on Saturday 25 June 2011 13:55THE leader of Scotland's doctors has questioned whether society can afford to pay thousands of pounds to keep terminally-ill people alive for weeks or months when health service budgets are under unprecedented strain. 

Elderly are helped to die to clear beds, claims doctor

Mark Macaskill and Jon Ungoed-Thomas

2^nd April 2000

THE callous treatment of the elderly in NHS hospitals has been exposed by a doctor who claims patients are denied life-saving treatment, are grossly neglected and are given drugs which hasten death.  Rita Pal, 28, a junior doctor, was so disturbed by her experiences that she is leaving the profession. This week she will submit a dossier to the General Medical Council (GMC) detailing the cases of abuse that she saw.

The Liverpool Care Pathway has become the blanket policy of extermination, slipped in under the radar, a wolf in sheep's clothing, by which this agenda may be achieved.

Liverpool care Pathway – A Moral Dilemna

Surely, these are lines from the screenplays of Soylent Green and Logan's Run? Again, do we tread this path, take these careless steps and stumble blindly into the abyss?

And with the introduction of LCP, killing has become a ‘legal’ therapy!


Such Wellsian prophesies of Orwellian foreboding are plentiful. A peculiar parallel that I remember from  my school-days exists in C S Lewis' science-fiction trilogy  - 

'Out of the Silent Planet'; 'Voyage to Venus'; and 'That Hideous Strength'

Lewis' brilliant mind envisioned the sinister National Institute of Coordinated Experiments, or NICE. Now, that is at once Orwellian Newspeak, for 'nice' it isn't, but it is also Wellsian in its prophetic anticipation of the modern-day NICE - The National Institute for Health and Clinical Excellence!

The Liverpool Care Pathway: a decision taken with purposeful intent to terminate a life.

Liverpool Care Pathway – Don't Resign, Sign!

These are the LCP petition sites - 

care2 

Change.org

  

                       GoPetition

                               

To stand by and do nothing while a wrong proceeds unchallenged is to be complicit in it. Complacency permits the unthinkable to become thinkable and the unacceptable to become possible.

Please also sign these petitions - 

                                                                 Direct Gov e-petition    

                                                        

 Direct Gov e-petition