Thursday, 28 April 2016

Liverpool Care Pathway - Tough Times And Difficult Questions

The sum of many parts does not make up a recognisable whole. When devolution is dismemberment then is it subservience.



These are tough times for Associations. There are mergers and more are afoot.

There are horror stories from surveyors. Roof repairs just patched up. Tenants up in arms.

There are horror stories from our own ALEC. Three project workers being let go at elderly supported housing. The residents have an alarm call, but they're on their own.

County provides Supported Housing projects with funding and the funding is put out to tender. The Commissioners are demanding 50% cuts. Existing Housing Related Support funding provides for three staff here and we have been a staff member down for a year or more. Where has that been siphoned off? Will it be refunded to the Commissioners...?

In addition to the funding, the Association receives an extraordinary income from rents and service charges.

The government forced a one per cent reduction on rents last year and Associations took a hit...

Social Housing

Rents were increased by 20% over the five years from 2010. This only further bloated the Associations’ coffers, further distorting the market rents and increasing the local tax burden to pay for the Housing Benefits to pay for the increased rents which the social housing sector tenants could not afford to pay.

'Supported' is reprieved until next April but our project is under threat. There is also the impact of welfare reform.

The Mental Health Act of 1983 closed down the institutions and along came Care in the Community. Many welcomed this; many lamented it. Those locked into the system needing structure despaired at it.

Supported housing works with other services - mental health, probation, local council - as a transition toward independent living. As such it is not a cost to the community but should be counted as an integral part of the overall cost of rehabilitation that is this salvage operation.

It is calculated that this saves the taxpayer £640m annually. How that figure is arrived at or if it is even possible to calculate at all is another matter; there are too many unknowns and too many assumptions, taken without context.

According to the House of Commons Briefing Paper –

“This is because the cost effectiveness of supported housing leads to reduced involvement in crime, reliance on the health system and other social services. With this in mind, supported housing services are not adding to the deficit but are rather a key component in reducing it.
Furthermore, organisations providing supported housing have already taken their fair share of the burden to reduce the deficit. According to the National Audit Office, funding for housing related support decreased by 45% between 2011-15. Added decreases in funding would only serve to undermine the financial viability of many services, placing the most vulnerable at increased risk.”
Services are not islands, separate and immune from the context in which they sit. Services have been co-opted into engaging clients in a Homeless Health Needs Audit to inform Commissioners to prioritise and target funding.

How this stands on the broader canvas of devolution proposals currently on the table, the European Structural and Investment Fund programmes and potential Brexit is not known.






See -
Liverpool Care Pathway - When Division Is The Rule
Here is Heart of the South West -

“We invite Government to begin formal negotiation with us on our proposals and the detail behind them with a view to signing a deal during the first half of 2016.”


Press Release issued by the Devolution Project Management Office - Thursday 3 March 2016:
Devo bid to boost prosperity for South West goes to Government

Council chiefs and business leaders in Devon and Somerset have submitted their ‘prospectus for productivity’ to the Government in a bid to win more powers to boost jobs and growth.

They say they want a ‘devolution revolution’ to improve the lives of people in Devon and Somerset.

The prospectus has been submitted to the Government after being separately endorsed by every local authority in the two counties.

They say the changes they propose would result in higher productivity and better-paid jobs, improved road, rail and broadband links and more homes for the region’s growing population.

There would be radical reforms to integrate health and social care to allow the ageing population to be better looked after, tailored support for growing businesses and the creation of a centre of excellence for skills development.

The submission of the bid follows months of concentrated work by council chiefs in Devon, Somerset, Plymouth and Torbay with 13 district councils, Dartmoor and Exmoor national parks, the local NHS and the Heart of the South West Local Enterprise Partnership.

They want more powers and finance devolved from Westminster to the region so they can close the productivity gap and allow local people to benefit from a thriving economy.
The integration of health and social care is already proceeding.

HSJ reports that Northern Devon Healthcare Trust is to become the first health service organisation to enter the home care market.
“Providing high quality, consistent care at home will also help us to prevent avoidable hospital admissions,”
All-sector leaders are co-opted in the devolution proposals and discussions that are proceeding. This is corporatism. This has not been a democratic lead from the electorate. This was echoed by EDDC Councillor, Jill Elson -
Councillor Jill Elson said she had concerns about the democratic value of the deal and how much input constituents would have. She added: “If you have 19 leaders for all the councils making the decisions, how is that going to be disseminated to the elected members of all the various councils and their residents?”

Cllr Elson said there was also an issue with the health budget, because nobody knew how much it was going to cost.

“Older populations need more and more care - whether they are at home or in homes, it is not going to be financially viable because at the moment there are not enough community care workers to actually have people in their own homes,” she added.
Midweek Herald

"Healthcare, bed-blocking in hospitals and education were the major concerns raised during the latest round of East Devon District Council’s (EDDC) talks over devolution."
What lead there has come from the electorate has been through published comments upon reports in the press. Predictably, these have drawn from traditional perspectives of right and left, Tory and Labour. The perspective of the Bard was up and down. Is this devolution or dismemberment and to what end and purpose?

See also -

Liverpool Care Pathway - Of Sense And Sensibility, Sense And Nonsense
These are but brush-strokes upon the broad political canvas. Who is the painter? Is it all painting by numbers to some Grand Design?

Wait -

The 'devolution revolution' involves giving local authorities the power to retain their local taxes and spend them as they see fit, rather than have them funnelled up into Whitehall before being distributed back down again.

Then...

The devolution revolution involves giving local authorities governments the power to retain their local taxes and spend them as they see fit, rather than have them funnelled up into Whitehall Berlaymont before being distributed back down again.

Can this be? Do not the Berlaymont puppets in Whitehall want us to retain some essence of gratitude for the beneficence of EU largesse?

Demands for more transparency have made government ministers ever more secretive. The communities secretary, Greg Clark, has ignored parliamentary questions and Freedom of Information requests. Apparently, they're now all using Whatsapp to cloak their plans in further secrecy.

Independent
Whatsapp is one of the messaging services which Cameron plans to become subject to the new Investigatory Powers Bill. But not quite yet apparently.

The King of America who has ridden roughshod over American democratic process, bypassing Senate and Congress, and has backed the same EoLC Communitarian policies advised by the brothers Emanuel, Don Berwick et al is invited for a sleep over to shore up support for the Grand Design.

A Government and people which cannot speak with one voice, become a  dismembered disunity, is become a Divided Self.

Can the European concept of Subsidiarity explain this new tier of unitary authorities, each with its own Monseigneural Mayoral overseer?

The idea of 'subsidiarity' can be traced back to the 19th Century.

This notion was expounded more broadly in the Maastricht Treaty, reasserting the rights of member nation states through the subsidiarity principle and so it is not so incongruous after all.

Pertinent reading -
Liverpool Care Pathway - Murder On The NHS Express

Liverpool Care Pathway - Downsizing

Liverpool Care Pathway - Going Stateside

Liverpool Care Pathway - This Is Not 'Ageism'; It Is Communitarianism
There has never been a referendum of support for the Grand Design. What lead there came from the electorate was in support of a common market (EEC) in preference to a free trade association (EFTA).

Over time, a persistent force that is relentless in its purpose will accomplish subtle and irreversible changes in our perceptions.

How to change perceptions without really trying -
Liverpool Care Pathway - The Communitarian Nudge
Here they are, all pals together, supplying input here, across the pond and, via nudge, over on the mainland (EU)...
Behavioural Insights Team

Cass Sunstein, Don Berwick, Simon Stevens and Zeke Emanuel of the Tricky Trio Emanuel Bros.

The Sunstein groupies in the Cabinet Office BIT Team use a SMART mnemonic -
EAST (Easy, Attractive, Social, Timely).
They all love SMART. And they're all burning the midnight oil to get you to do the right thing.

Over time, a persistent force that is relentless in its purpose will accomplish subtle and irreversible changes in our perceptions.

Eurotransplant
This has happened with the creep to acceptance of euthanasia and using the body parts of the euthanased for organ harvest.

Doctors are impressed by the superior condition of lungs taken from people who are killed by lethal injection compared to those extracted from those killed in accidents.

Eurotransplant, a co-ordination group for transplants in Austria, Belgium, Croatia, Germany, Luxembourg, the Netherlands and Slovenia, has devised elaborate protocols for organ donation and transplantation after euthanasia.

Additional reading -
Liverpool Care Pathway - There Are Always Consequences

Liverpool Care Pathway - The Prequel

Liverpool Care Pathway - A Utilitarian Pathway

Liverpool Care Pathway – An Hideous Strength

Liverpool Care Pathway - The Good, The Bad, The Ugly And The Diabolical
Doctors heal, or alleviate what they cannot heal; they do not kill. That is the task of the Facilitator or Executioner.

No. That persistent force that is relentless in purpose has already accomplished much. The Assisted Dying Bill implementing the Supreme Court Ruling is before the Canadian Parliament...
"This enactment amends the Criminal Code to, among other things,

create exemptions from the offences of culpable homicide, of aiding suicide and of administering a noxious thing, in order to permit medical practitioners and nurse practitioners to provide medical assistance in dying and to permit pharmacists and other persons to assist in the process;

create new offences for failing to comply with the safeguards, for forging or destroying documents related to medical assistance in dying, for failing to provide the required information and for contravening the regulations."
Medical and Nurse Practitioners are to be the executioners and there is a new offence "for failing to provide the required information". They must make themselves complicit in the act even if they do not wish to perform the act.

A Canadian doctor pleads for the right of freedom of conscience...

This is Canadian Family Physician -
No provision in our Constitution ought to be dearer to man than that which protects the rights of conscience against the enterprises of the civil authority.
- Thomas Jefferson

A policy of regulators coercing medical professionals to jettison their moral compass, to defy their own conscience, to enact what they believe is unethical or harmful, and to abandon their lifelong values and standards to participate in care they deem destructive or unconscionable is another matter altogether.
The right of freedom of conscience is Article 18 of the 1948 Universal Declaration of Human Rights. Matthew Jones in The Guardian has called this "First among freedoms."

Additional reading -
Liverpool Care Pathway - Of Terminal Rights And Indeterminable Wrongs 
Liverpool Care Pathway - A Dying Scandal
The right of freedom of conscience is no longer politically correct.

Personal choice may not be respected or even tolerated if it does not coincide with that of the politically correct.

Thus therapy to realign sexual orientation has been outlawed in two US States. Feelings of sexual orientation are promoted positively and objectively, free of repressive moral considerations.

They are entitled to have "their sexual needs accepted and respected".

But see -
Liverpool Care Pathway - It STILL Ain't Over!

Liverpool Care Pathway - Telling It More How It Is
We are seeing more and more young people enter the mental health system, most if not all from broken or dysfunctional homes. Cameron made a call to action in child mental health. Is this another one per cent they seek?

Politicians set targets which then must be met. We have already seen where that leads...
Liverpool Care Pathway - Of Terminal Rights And Indeterminable Wrongs
A child is medicated and labelled with Emotional Conduct Disorder (ECD), a diagnosis the young man now feels no longer fits. His mother, become a single parent, became his ‘carer’, a role she reluctantly relinquishes. The young man is in limbo, without diagnosis, then is redesignated 'Personality Traits'.

There are diagnoses of Attention-Deficit Hyperactivity Disorder (ADHD) addressed with drugs instead of diet and complicated by non-compliance, cannabis or alcohol.

In the broader social context there are demands for autonomy of action but these translate into denial of responsibility of action with diagnoses such as Anti-Social Personality Disorder (ASPD).

Social issues have become medical issues.

People like James Churchill have expressed concerns about health taking social care into its fold. This has been discussed in these pages.

See, for instance -
Liverpool Care Pathway - 'Joined Up' Services
This is now policy.

In a different world, youngsters with too much energy needing a lot more time and attention, focus and direction to channel that energy were not sidled into the doctor's surgery for diagnosis and medication.

Young people in need of some guidance to make the right choices did not have money thrown at them in benefits to make the wrong choices.

Whatever you feel there is a diagnosis and a drug to deal with what you feel.

A young man who can't cope with his feelings is 'self-medicating' with alcohol. The mental health professionals refuse to deal while he continues to deal but he must stop dealing for a period of six weeks before they will deal the appropriate drug to deal with what he feels. It is an alcohol issue and they will not engage until this ceases and so he continues dealing. This is a common Catch 22 situation.

These are wasted generations.

What is today dealt with by diagnosis and containment was once, in a time of more moral certainty, given direction and expression.

Brixton, early to mid1950s: There were no drugs, except those prescribed by the doctor. Lots of kids had knives and they took them to school freely; they were penknives to sharpen a pencil, not to stick in a classmate. I could get my dad's cigarettes and the tobacconist was happy to serve me but none of the kids at school smoked. Come bonfire night kids could safely collect pennies for the guy well into evening with no harm coming to them. The police were just bobbies and respected not robocops all tooled up to tackle an invading army. It grieves me to hear places I grew up in mentioned in the news in the context of shootings and violent crime. What happened?

My dad ran the Anchor Boys and the Life Boys for the local Methodist Church. The kids looked up to him. He was in the 8th Army in the Desert Rats in the war. That's the Second World War for those too young to remember and that still meant something even then. The other kids didn't believe me when I said he was my dad. They just scoffed as if it was some childish fantasy. But I didn't mind.

In an amoral society that has surrendered traditional mores for autonomy of action and sown the seeds of confusion there is much to lament and more to regret. Inappropriate role models will provide inappropriate direction and expression.

Unformed minds do need guidance and direction, understanding and certainty. Else,they will become flotsam jettisoned onto a sea of confusion.

This is not simply a matter of parental failure. No child is an island. Children are assaulted on all sides by doubt and uncertainty. The certainty of the ‘straight and narrow’ is become a broad-trodden track. A generation gone under the hammer of new think have themselves raised another generation. The expectations that provided boundaries are gone. The gate posts have been moved or have rotted away and not been replaced.

- Daily Mail
Psychological interventions are costly in time and not measurable to determine effectiveness in practice and this is what attracts funding.

A medicated nation on mood control drugs to regulate emotion: this is the Final Destination, then, that looms large? It is not natural to not feel.

The Equilibrium of Lucas’ Electronic Labyrinth, of induced birth and induced death, controlled, tidy, and the 'complete life' between. Is this the prospect that faces us?

A Big State with Big Data and the power of the graph database to know all and see all? There is no money for the NHS but there is £1.8bn to go paperless by 2020.

New money to replace old money, an economy without money? Plastic transactions are also data that reveal to those who wish to know not merely our purchasing habits and preferences but also our movements and much more besides.

In an economy that is hungry for debt and more debt and negative interest, the only way the banks can effectively shut their doors is to go cashless. As the leader of the world's biggest debtor nation, the King of America, will tell you, the only way to keep raising that debt ceiling and prevent a run on the bank to call in all those $ Bills is to go cashless.

Tough times and difficult questions. Decisions, decisions...

Blog supplemental -
Liverpool Care Pathway - When The Funding Had To Stop

Liverpool Care Pathway - Blowing The Whistle On The Half Century

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