Wednesday, 23 March 2016

Liverpool Care Pathway - Of Terminal Rights And Indeterminable Wrongs

Seek Hunt and ye shall find. Make provision and ye shall Werther the storm...

Here's Pulse

Five years ago, GPs were placed at the forefront of the Prime Minister’s personal mission to increase the number of people diagnosed with dementia.

The aim was to diagnose two-thirds of the 670,000 people estimated to be living with dementia in England at the time.

A contract was imposed that diverted GP funding into a ‘case-finding’ enhanced service that saw large numbers of patients with vascular disease or diabetes screened for memory problems.
Further reading -
Liverpool Care Pathway - The Dementia CQUIN
Liverpool Care Pathway - The 2013 CQUIN As Endorsed By Mr. Cameron
Pulse reports diagnosis rates increased from an average of 42% to around 67%. But...
Figures obtained from 11 NHS trusts showed 152% increase in the number of patients wrongly labelled as potentially having dementia under the diagnosis drive, causing them unnecessary anxiety and affecting the GP-patient relationship.

These data, obtained under a Freedom of Information request, reveal there were 10,019 GP referrals across 11 trusts in 2011/12, when the Prime Minister launched his ‘challenge’ on dementia, and that this more than doubled to 22,109 in 2014/15.

The number of diagnoses rose by 87% but the proportion of ‘false alarms’ also rocketed, with 60% of those referred found not to have dementia in 2014/15, compared with 52% in 2011/12.

When GPs originally warned that memory clinics would be overwhelmed, health secretary Jeremy Hunt accused them of ‘grim fatalism’ for ‘refusing’ to recognise the importance of diagnosing dementia.

- Wirral GPCog
The DES (Directed Enhanced services) specification included clinical 'at risk' groups including Downs people and people with Learning Dis.

Providing incentive and an expectation to diagnose is not good practice. A clinical tool, the GPCog, was recommended and used. 

They have Hunted down the one per cent, likewise, using the clinical tools of the GSF and the SPICT.

Providing incentive and expectation to diagnose will ever produce unforeseen and unexpected outcomes and diagnosing dying proceeds apace.

This is the steamroller effect.

What is DES?

Essential reading...
Liverpool Care Pathway - The DES

Pulse reports that GPs have raised 'hard questions' about the 'poor accuracy' of the GPCog assessment tool.

Is the Barton Method, recommended in the GSF and the SPICT, more accurate?

State intervention in the economic field may catastrophically distort the mechanism of the market; in the medical field, meddling distorts clinical focus and diverts priority.

Such programmes and strategies provide a ruthless efficiency. Rolled out by the DoH via the NHS (National-socialist Health Service), such targets and incentives funnel priorities, giving outcomes a factory efficiency that turn any field into a minefield.

It was first evidenced and reported in these pages the awful efficiency of CQuIns to motivate a willingness to avert the gaze from clinical reality...

Liverpool Care Pathway – CQUIN-gate!

In 2012/13, the DES were making payments of £2.38 per patient. In 2014/15, in order to hit DoH targets, the DES for dementia diagnosis was raised to £55 per patient.

CCGs must also stand up to scrutiny and demonstrate they have donned the Emperor's new clothes...

And Pulse reported -
GP practices are being offered £200 payments for each dementia patient they diagnose, and provide post-diagnostic support to, under a scheme to shift more care into the community.

The three-year local enhanced service - offered to practices by NHS Bristol CCG - also offers practices a a £500 upfront payment for signing up to the LES and a £200 ‘bonus’ payment for practices to increase their diagnosis rates by 5%, or reach a target of 65% of expected diagnoses.

NHS England chief executive Simon Stevens called recently for a ‘step change’ in diagnosis in order to meet the Government’s objective of ensuring two-thirds of people with dementia have a formal diagnosis by next year.

The LES are Local Enhanced Services
[A] spokesperson said: ‘NHS Bristol CCG introduced a three-year enhanced service for dementia in July 2013 as part of our work to shift the diagnosis of straightforward dementias from secondary care to primary care. GPs are supported by skilled memory nurses in the community, to undertake a diagnoses of dementia, but complex cases of dementia are referred into the memory clinic. 
This is the Dementia DES and the Bristol LES to which Pulse refers –

One in one hundred has dementia. They are chasing another one per cent...

This is lucrative. But 'Mickey Mouse'...

Really? Is that not rather disrespectful?

This is Pulse –

GP commissioners are prioritising reductions in emergency admissions and increases in dementia diagnosis rates to achieve their quality premium payments, as figures obtained by Pulse reveal CCGs’ commissioning intensions on a national basis.

The NHS England figures reveal for the first time what CCGs are choosing - in agreement with their local area teams and health and wellbeing boards – as their localised targets, worth up to 37.5% of the quality premium total or around £420,000 to the average CCG.
This is a Care LESs to downsize care and care expectations to minimise those emergency admissions.

This is clinical judgement...
‘With a mind on the quota and one hand on the wheel,
An eye on the targets on the road ahead,
And a QOF from the back seat,
Counting out the payments from DES.’ 
- Apologies to Paul Evans

Further absolutely essential reading -

Liverpool Care Pathway - The Chemical Brothers

This time, it backfired. The politicians put 42 million quid on the table for the dementia DES but it all ends at the end of the month. Pulse reports on the ‘unintended harm’ caused by the Cameron call to action.

Pulse reports between 2011/12 and 2014/15 the GPs chasing their 1% dementia referrals across 11 Trusts more than doubled them from 10,019 to 22,109.

Problem: 152% increase in the number of people wrongly referred.

There’s a whole bunch of people now second guessing themselves but already groomed for downsized care.

They used the correct tool correctly. What went wrong?

They are using the correct tools – the GSF and the SPICT – correctly, chasing the other one percent. What could be going wrong?

Diagnosis and referral is all about cutting acute referrals. It is a Care LESs.

This is Macmillan GP, Dr. Elizabeth Towers –

Involving patients, family and carers in EoL discussions is ‘essential’ to avoid complaints. Dr. Towers comes to the point to point out that 54% of NHS complaints relate to care of the dying and refers to the 'recent LCP controversy'.

The good doctor hits the nail on the head...

Grooming the group is essential to avoid having to ask such leading questions as, ‘Do you really want the operation?’ and ‘Do you really want to put them through that?’

It's all just soothsayers, psychics and seers. What percentage of this one percent have also been wrongly referred?

Further reading -
Liverpool Care Pathway - The QP EoL Pathways
The tools are unsafe, the judgement unsound.

See -
Liverpool Care Pathway - New Priorities For Care
And additional further reading -
Liverpool Care Pathway - After The Review, After Everything, They're STILL Killing People
Does Big Sis' know better than Big Bro'? When the State intervenes, then is the genie let out of the bottle.

When the State makes provision to permit Pandora to open the box, then is all manner of woe set forth on the world and does the genie plea to be put back into the bottle...
Liverpool Care Pathway - The Pro-Death Advocacy
Life has never been the disease and death has never been the cure. Doctors have always been committed to care whatever the circumstance, however dire, for what is the alternative except not to have life? And yet that is what is now proposed.

Dying is being perceived as a positive life choice. Let's talk about it...

In Canada, doctors trained to preserve life must be trained to end life.
In Quebec, “We are talking about IV administration of drugs, so the effect is almost immediate,” Robert said. “In an oral route, it can take hours to have the effect.”

“We think there should be as minimum time as possible between when the act is begun and the effect occurs, to limit the effect on the patient, and on the family and friends.”

People requesting euthanasia can stop the processes at any time, up until the last moment before the loss of consciousness, Robert said. “This is why it’s so important before beginning the three steps that the physician checks, or validates a last time, the will of the patient.” 
Under the guideline, euthanasia could be performed in a hospital, a palliative care hospice or the person’s home.

“Nobody feels prepared,” Robert said. “We are exploring a new continent.”

“But we have to learn how to do this as best as possible,” he said. “There is a beginning for everything.”National Post
They have to get it right. Doctors must be trained to kill...
Liverpool Care Pathway - Whether Shove Comes To Shovel, It's Still A Spade
Euthanasia has taken its first tentative steps outside Quebec.

This is National Post -
A Calgary woman with ALS became the first non-Quebecer to legally die with the aid of a doctor on Canadian soil, after a precedent-setting ruling by Alberta’s Court of Queen’s Bench.
The procedure to kill was carried out by Dr. Ellen Wiebe.
Wiebe is one of a group of doctors who have formed an organization called Hemlock AID to provide B.C. patients with information about and access to assisted death.

She has said she has no qualms about helping patients fulfill their final wish.
Creep has already come to slide. What goes on the death certificate?

A Toronto man has had his life taken. As in Quebec, the cause of death is the fall, not the push. And the court also ruled the coroner did not need to be notified given that the cause of death was deemed to be his disease, not the lethal drugs he was given.

- Toronto Star
Dying is a 'health matter'. Shanaaz Gokool, chief executive officer of Dying with Dignity Canada:
“We categorically reject the idea that a judicial authorization process is what will be required after June 6. The court system is clogged up as it is, and more importantly, this is a private health matter, and no other health matter requires having to go before a justice.”
A 'precedent' is set. Lawyer, Andrew Faith:
“There is now a precedent created in Ontario, by Justice Perell, by this decision today, and it will be of good guidance to other courts in the future that have to consider these applications.”
Slide will come to spread. What is not acceptable today will become so tomorrow. Once the gate post is removed it will be questioned what is the need for the fence?
“[We] do not consider that it would be acceptable to society at this point in time to recommend that a non-terminally ill person with significant physical impairments should be made eligible under any future legislation to request assistance in ending his or her life.”The Commission on Assisted Dying
A system has already been rolled out. GP commissioners are prioritising reductions in emergency admissions. The bounty has been raised; the wanted posters have gone out.

Further reading -
Liverpool Care Pathway - The Palliative Option And Downsizing Care
Mail Online
A Brit Euthanasia ‘charity’ has been working with Age UK to coerce the vulnerable elderly to sign up to ACDs. 

They are gently cajoled into making decisions which they may not have fully understood or taken stock of and, later, may regret or not wish to be enacted.

Out of the wood, it is easy to be persuaded to make a ‘living will’ and not consider that might actually be detrimental to them and not compliant with their future current wishes and life situation. When the time comes, they might well expect every possible effort be made to assist them to live.

When you are in the wood, the natural reaction is to seek help to find your way out.

ACDs are recorded on the EPaCCS.

Such End-of-Life documents include not merely attitudes to refusal of treatment but to such things as organ donation.

Such End-of-Life documents might also include an instruction to be euthanised.

What is perceived to be unbearable cannot be defined in law; it is a threshold of tolerance which may be described but not understood.

An autistic client at our scheme who has most awfully self-harmed prior to coming to us and obsessed about death and dying quite recently crisis-ed. The client's mum has actually agonised and wrestled with the idea of providing 'release'.

In writing risk assessments, we are now required to refer to Advance Directives. I personally fear the direction in which we travel that this is such a can of worms that is being opened.
In early childhood, the Dutch psychiatric patient known as 2014-77 suffered neglect and abuse. When he was about 10, doctors diagnosed him with autism. For approximately two decades thereafter, he was in and out of treatment and made repeated suicide attempts.

He suffered terribly, doctors later observed, from his inability to form relationships: “He responded to matters in a spontaneous and intense, sometimes even extreme, way. This led to problems.”

A few years ago, 2014-77 asked a psychiatrist to end his life. In the Netherlands, doctors may perform euthanasia — not only for terminal physical illness but also upon the “voluntary and well-considered” request of those suffering “unbearably” from incurable mental conditions.

The doctor declined, citing his belief the case was treatable, as well as his own moral qualms. But he did transmit the request to colleagues, as Dutch norms require. They treated 2014-77 for one more year, determined his case was, indeed, hopeless and administered a fatal dose of drugs.

Thus did a man in his 30s whose only diagnosis was autism become one of 110 people to be euthanized for mental disorders in the Netherlands between 2011 and 2014. 
New York Post
The first WHO report on suicide prevention was published on 4 September 2014 at Geneva. According to this, one person commits suicide every 40 seconds. The report says limiting access to the means of suicide can help avoid suicide. This is an irony indeed when there is a convergence of intent to provide that means of suicide.

In a Full Comment in the National Post, Andrew Coyne asks: Canada is making suicide a public service. Have we lost our way as a society?

This is what must be asked: Is Society cast adrift, rudderless, or have we been boarded and is the helm commandeered?

The quality of mercy is constrained, no longer the right to life but the 'right' to death, to not have life. Rights are negated, become negative rights, and are liberties, which were inherent, to be either granted or withdrawn?

The Werther Effect is effective. Many will be moved by example, the celebrity of the celebrated, the hero and so-called anti-hero. They are about changing perceptions and perceptions have changed.

Such decisions, weighty, ponderous, may require that they be shared with others. Acts of such finality and consequence demand counsel, but what counsel?

In another place, another time, Mr. Pask may well have fallen victim himself to the Groningen Protocol -
I’m a 44 year-old with Spina Bifida Myelomenengocele. This is the most common form, and one of the most severe. I also have hydrocephalus, which is excess cerebrospinal fluid around the brain, that is drained using a shunt. As an infant, when doctors found there was nothing more they could do to help me, my mother took me home, where it was thought I would die. But here I am.

My involvement with combatting euthanasia began after hearing about the effects of the Groningen Protocol, introduced in the Netherlands in 2005, which permitted pediatricians to euthanize infants. From its introduction to 2010, 22 infants, who all had Myelomeningocele, were killed. They had a disability, not a terminal illness. All were given a paralytic agent before death, to stop them moving and thus alleviate the suffering of their parents who had to witness their deaths (Caitlin and Novakovich, 2008 in Kon, 2008). This would have induced terrible pain.

These children were all considered to meet four criteria in the Groningen Protocol. I will give two of these, “Hopeless and unbearable suffering” and “Predicted Lack of Self-Sufficiency”, special attention, showing that they run counter to dignity.

I have had many operations over my time, and can thus testify to the improving treatment of, and prospects for people with Spina Bifida, from the patient’s perspective in a medical model. I have also been at the forefront of change from a social perspective. For instance, I was the first child in Canberra, and possibly in Australia, integrated into the mainstream education system from a “special” school in the 1970’s.

Euthanasia laws permit killing on the basis of perceived physical suffering, whereas for people with disabilities, the real anguish arises in a large part due to a mix of social, financial and emotional factors. Not only are medical professionals prognoses often wrong, as in my own case, but they also often veil discriminatory attitudes towards people with disabilities. This discrimination is based on the perception that our quality of life is poor and that we are better off dead. 
Daniel Pask
All were given a paralytic agent before death, to stop them moving and thus alleviate the suffering of their parents.

The perception of dying was always key...
‘How people die remains in the memory of those who live on’ 
Dame Cicely Saunders, Founder of the Modern Hospice Movement
End of Life Care Strategy
Care of the ‘dying person’ was always about care for the person observing the ‘dying person’, not the ‘dying person’...
Liverpool Care Pathway - The Perception Of Dying And The Perception Of the Dying

Liverpool Care Pathway - End Of Life Wishes And The Midazolam Legacy
In a summation, Mr. Justice Jackson said: “The burdens of treatment are great indeed but must be weighed against the benefits of continued existence.”

Implicit in that statement is the question: Do we put the burden down, surrender the responsibility to care?
If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another

It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother
- He Ain't Heavy, He's My Brother (B.Scott, B. Russell)
Final words:

Once the foot is in the door, it is only going to be inched further open.

Doctors heal, or alleviate what they cannot heal; they do not kill. That is the task of the Facilitator or Executioner.

Do we attempt to prevent or to assist suicide?

Final reading -

Liverpool Care Pathway - The Wisdom Of Not Venturing Forth Into Peril

Liverpool Care Pathway - When The Prescription Is EoLC
Liverpool Care Pathway - And "Rational" Suicide

Liverpool Care Pathway - The Werther Defectives

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