Tuesday, 30 July 2013

Liverpool Care Pathway - It's For You To Decide, None Other

"I want to guarantee that you are there supporting my continued life and its value. The last thing I want is for you to give up on me..."

Thus spoke Lady Jane Campbell in the House.

If the alternative is death, there is no alternative

In recent days, Solicitors for May James took her case to be heard and deliberated upon in the High Court in London. The case is to determine when and if it is lawful to withold or withdraw medical treatment.

May's husband, David, had his life taken at Fazakerley Hospital, Liverpool. It was so determined in his case, that it was better that he was dead.

They brought the Moors killer, Brady, back to life. David James, they determined to put to death...

David's family continue to stand by him. His memory is not so easily swept into oblivion.

David's son, Paul, has posted this on Facebook -

Could everyone please share this statement from our solicitors as the outcome of our hearing in The Supreme Court will affect everybody in the country. Thanks.  

When is it lawful to withhold medical treatment?

July 25, 2013

In cases where a person lacks legal capacity to make their own decisions about their medical treatment, such decisions should be made in that person’s best interests. This includes decisions about withholding or withdrawing treatment.

The basis on which these decisions should be taken, the interpretation of futility and the persons wishes and feelings, are some of the issues being considered by the Supreme Court in a groundbreaking case heard today.

Mrs Alice May James, a client of QualitySolicitors Jackson & Canter, is seeking to clarify an important question. When is it in a patient’s best interests to withhold medical treatment when he or she is critically ill, but who nevertheless has a measureable quality of life from which he or she gains pleasure? The patient in question was her husband of fifty years who sadly died at the end of last year. The hospital’s view was that further treatment was futile, but Mrs James and her children disagreed. Her husband, although ill, was to some extent conscious and the family believed he was still getting enjoyment from contact with his wife and close family.

The hospital sought a declaration from the Court that it was in Mr James’ best interests for further treatment to be withheld in the event of a clinical deterioration, on the basis that such treatment would be ‘futile’ and ‘overly burdensome’. The family argued strongly that treatment should be continued. The Court found for the family and refused to endorse the withholding of further treatment. This was quickly challenged in the Appeal Court where the Judges took an alternative view. Mr James sadly died shortly after the decision.

Mrs James continued to argue that this case is very different from other cases, such as the Bland case, where the patient was in a persistent vegetative state. Her husband, although ill, was still aware of their presence and able to communicate with his wife, for example by giving her a kiss. As such continuing treatment was not futile. She obtained permission to appeal to the highest court in the land for a ruling on this very important point of legal principle.

It is now for the Supreme Court to delve into the legal situation and provide guidance on how similar best interests decisions should be taken in the future. The judgment is not expected for some time. However, when it is delivered, each one of us has the potential to be deeply affected by the outcome of this important case.

Susan Flynn and Corine Hims from our Church Street office have handled the case and Ian Wise QC and Stephen Broach from Doughty Street Chambers represented Mrs James in the court process.

Once upon a time, doctors would go that extra mile to preserve life. That is the whole principle of First Aid and why First Aiders become First Aiders: to rush in to the rescue, to be there and be able to attend to a dire need. Life and the preservation of life was always first and foremost in mind. That has all been turned on its head.

A bad decision has been left to stand that did not take account of the facts and history of Mr. James' suffering at the hands of those who first placed Mr. James in the dire jeopardy that delivered him to Death's door.

How did he arrive there? Mr. James walked into Fazakerley Hospital; he was not carried in!

That is the really worrying thing, that such 'best interests' decisions may be used by physicians and medical practitioners to bury their misdemeanours.

Fazakerley Hospital... Fazakerley Hospital... Fazakerley Hospital...

Mrs. James is now permitted to say to the world, openly and freely, the name of the hospital that took her family to court to permit them to put Mr. James down by denial of treatment! So what was there to hide that they requested this instruction be made?

We are set on a course that will lead us into perilous and treacherous waters. Such matters are not for courts to decide. A brave lady, uncowed and resilient, stands firm in her good fight for justice.

Further reading –

Monday, 29 July 2013

Liverpool Care Pathway - The Palliative Option And Downsizing Care

More excess deaths and more excess deaths and more excess deaths...
Isn't anyone piecing the jigsaw together?

A target-driven, incentive approach does not necessarily produce the desired or even desirable outcomes. In the field of clinical governance, those outcomes, as we well know from the experience of Mid-Staffs, may prove to be calamitous and catastrophic.

This is East of England NHS Clinical Quality and Public Health website on QUIPP -

The NHS QUIPP challenge: an introduction for clinicians (DH)The quality, innovation, productivity and prevention (QIPP) challenge is our opportunity to prepare the NHS to defend and promote high quality care in a tighter economic climate. We know we have one more year of guaranteed growth in 2010/11, but the NHS needs to be making efficiency savings of £15-£20 billion per year by 2013/14. Frontline NHS staff will play a crucial role in this work because they have first-hand experience and knowledge of the areas where QIPP will start to make a difference.
How to achieve the impossible by making it desirable.

Cutting costs means cutting care means downsizing care means downsizing care expectations, achieving the impossible by making it desirable.

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

The Government published its NHS National End of Life Care Program in 2008 and invited the NCPC to groom the British public into accepting the idea of dying as a positive life choice. Out of this was formed the Dying Matters Coalition. The NCPC has led the Coalition since 2009. The EoLC Program was effectively outsourced to the NCPC.

The Department of Health committed to investing 286 million pounds over the two years to 2011 to support implementation of its National End of Life Care Strategy.
"We are investing £286 million over the two years to 2011 to support implementation of the End of Life Care Strategy to help improve end of life care for all adults, regardless of where they live.”The Telegraph
This document was jointly written by the National Council for Palliative Care and the National End of Life Care Programme -

The next two years provide a unique opportunity 
for new commissioning organisations to position 
themselves in the best clinical and financial position before they begin business as legal entities, for some at least as early as April 2013.

By targeting end of life care, emergent commissioners can place themselves in a strong position for one of the major required areas of improving quality and safety of care; improving patient and carer experience and making care more cost/resource efficient.

Tackling end of life care early can offer a number of significant ‘quick wins’ in improving the quality of care in your locality. People should be supported to be cared for and to die in their preferred place of care, which is usually their home (End of Life Care Strategy 2008). It may also include other community based settings such as a care home or sheltered housing. This means commissioners should ensure there is planned 24/7 provision of community support, including care co-ordination, nursing and symptom control.

End of life care accounts for a high proportion of NHS spending. The Demos think tank has estimated it as at least a fifth of NHS costs and a total of about £20 billion

There is considerable scope for improvement using interventions such as early identification triggers, advance care planning, co-ordination of care and effective multi disciplinary team (MDT) working.

Incidental reading -
Liverpool Care Pathway – "Let's Talk About It..."
A system has been rolled out. It is in place. It is working. So, why is everyone surprised? 

This is Mail Online 

The Mail says:
Ambulance crews are being told not to take patients to hospital if they have been put on controversial ‘death lists’ drawn up by GPs.
Readers of these pages will already be well aware of this.

The Route to Success documents are available here.

The route to success in end of life care - achieving quality in ambulance services
28 February 2012 - National End of Life Care Programme
This guide sets out the key role and contribution of ambulance services in achieving high quality care at each step along the end of life care pathway.
Whilst highlighting the crucial role of ambulance services, the guide also acknowledges the unique set of challenges and barriers that need to be addressed and overcome.
Good practice examples and top tips are provided throughout to make this guide a key tool not only for ambulance services, but also for other health and social care providers, professionals, managers and commissioners.
Order hard copies by email to: information@eolc.nhs.uk

The June 2010 Macmillan End of Life Care Newsletter shares the National End of Life Care Programme logo and is published by NHS.

From the Newsletter - "Discuss with family and friends how to get care and help at different times. Specifically advise that calling 999 is very seldom appropriate and may result in resuscitation, transfer and admission."
Everywhere, in regard to healthcare, you will hear this mantra -
Affordable, Sustainable.
Community-Based Care Strategies are aiming to cut those costly hospital readmissions.
This report says that "local commissioners and providers will work together to transform the local older people’s services to reduce acute admissions by one third and to redesign outpatient services to reduce volumes by around 6% per annum for three years."

Psychometric testing has been introduced to encourage nurses to "consider approaching any patient who the nurse considers to be in the last months of their illness, regardless of diagnosis, and including the frail elderly."

This Action Plan uses the concepts of assessment and review, planning and delivery of care, and of communication and information sharing as a framework to support a person centred approach to delivering consistent palliative and end of life care in Scotland.
Person centred - another mantra. In the context of psychometrics, that is worrying.
End of life discussion is intended to gear down expectation. End of life discussion is intended to gear down perception to see the cup half empty rather than half full. End of life discussion is intended to gear the mind into seeing dying as a positive life option and to perceive the moment to be gone.

Incidental reading -
Invicta is a two year project commenced in April of last year.
This is Invicta -
The Invicta programme is East Kent’s solution to downsizing care expectations. As at January of this year, 19 GP Practices were enrolled and up and running with the project.

The proposed outcomes of Project Invicta are:

  • To improve end of life care experience for individuals, carers, family and friends
  • An increase in the number of patients dying in their place of choice
  • A reduction in the number of acute emergency admissions, for patients at the end of life
  • A reduction in the number of end of life care patients dying within an acute hospital setting
  • A reduction in the number of fast track NHS continuing healthcare placements
  • An increase in the number of patients whose final days are managed on the LCP
  • An increase in the number of patients with an updated DNACPR
  • An increase in the number of patients held on an electronic end of life register

Diagnosing EoL means downsizing care expectations.

My Wishes is an EoL Register. My Wishes is Invicta's provision of an Advanced Care Directive or 'Living Will' -

1.2 What is My Wishes – East Kent’s End of Life Register 
My Wishes – is an electronic end of life register which records details of patients 
who are nearing the end of life. Patients will be asked to give consent for some 
key information about their decisions, to be recorded on this system. These 
decisions and any needs identified are then shared appropriately to help provide 
the best care possible. The system will enable patient preferences and needs to 
be communicated among staff and organisations that are responsible for their 
care, either now, or in the future 24hours a day 7 days a week. Access to this 
information will help staff make every effort to follow patient’s wishes about 
their care at this stage of their life.

Once the 'Living Will' is on the system, it's there. You are persuaded and encouraged to make such wishes known with such 'fireside chat' language as, well, if you don't say, when the time comes you may not get the treatment you would have wanted. 

Making such hypothetical decisions out of the woods is vastly different from having to make them when you're actually lost in the woods and, yes, please do send out those search parties! 

DNACPR actually does mean don't even bother trying to save me. 

A Care Navigation Centre run by Pilgrims and Wisdom Hospices will coordinate access to "My Wishes " to "improve communication" and care. This will include the ambulance service so that paramedics will know whether and how to actively respond. More at This is Kent. 

It is not scientifically possible to diagnose dying, but -
NHS West Kent Clinical Commissioning Group (CCG) has commissioned the training and education programmes to increase the skills of people working in care homes and give them confidence in successfully managing people who are dying.  The CCG has also commissioned training for health and social care professionals and those working in the voluntary and domiciliary sector to support people to die in their place of choice.This is Kent
This has enabled people to die on the LCP in their home setting rather than in hospital and save money -
The result of this, combined with talks from the Heart of Kent Hospice on end of life care, was that in the six homes initially targeted, the number of deaths of residents in hospital dropped from 57 per cent to six per cent.
This meant that many more people had a peaceful death in familiar surroundings, rather than spending their last days and hours in hospital. It also saved NHS money which was then reinvested in health services.
The project is now being extended to other homes to help staff to understand when it is and isn't appropriate to ring 999. Dr Tony Jones, who leads the project, said: "This can help to avoid hospital admissions at the end of life."This is Kent

"When it is not appropriate to ring 999"

Incidental reading -
The Invicta Project aims to integrate health and social care for patients at the end of life through the use of the My Wishes East Kent End of Life register and partnership working to use available resources more efficiently. The My Wishes register will be available to all care providers which will help facilitate quick and easy access to updated information about patients’ care plans. Services will be coordinated through the use of a Care Navigation Centre run by Pilgrims Hospices which patients and care providers can access to organise care. The service will only be available to patients on the locality wide end of life register (My Wishes).
It is proposed that through integration more patients will be able to spend the end of their life in their preferred place of care and unplanned and inappropriate hospital admissions can be avoided.
Identification of patients appropriate for entry onto the My Wishes Register can be undertaken by using a variety of tools that are available these include:
The Supportive and Palliative Care Indicator Tool (SPICTTM) aims to identify patients with one or more advanced, progressive illnesses and a limited prognosis to enable more people to benefit from pro-active care and support in the last year of life. Identifying patients with one or more advanced, progressive illnesses is essential if more people are to benefit from pro-active care and support in the last year of life
The SPICTTM is a clinical tool initially developed following a literature review of key clinical indicators suggesting advanced illness
The SPICTTM can be used to identify patients with advanced, progressive, incurable conditions or who are at risk of dying of a sudden acute deterioration who may have unmet supportive or palliative care needs
The SPICTTM is a diagnosing dying guide similar to the GSF Prognostic Indicator Guidance. It claims to give reliable guidance for identifying people at risk of dying within the next 12 months.

These are tools useful to GPs to find their 1%.

GPs have a surfeit of guides available now to assist them in their search to hunt down their 1%...  

Macmillan Quick Guide

There's the EoLC 1% GP Pack Folder full of useful weblinks; an EoLC One Percent 'Top Tips' guide which shares the Dying Matters logo.

There's the Six Steps To Success, of course.

Even Macmillan have got in on the act with a 'Quick Guide'.

Who needs euthanasia booths when you can keep them grinning on a fast-track to the grave?

The British public have been groomed to accept death and dying as a positive life choice for many years now. This shows up in many of the comments left on newspaper columns.

Brighton & Hove City Councillors were concerned...

Incidental reading -
Liverpool Care Pathway - The Many Pathways To The Perdition That Awaits Us
This is the Brighton & Hove EoLC LESS (End of Life Care Locally Enhanced Services Specification) -
The GSF audit submitted by GPs gives a clear indication as to how we are performing in Brighton and Hove enabling us to concentrate on areas that need improvement in subsequent years. Implementing the Gold Standard in Palliative Care meets targets in the NHS Cancer Plan, the NHS Plan, the NICE guidance for Palliative Care and audacious goals set by NHS Sussex to reduce admissions by 15% by 2013.  It is supported locally by the Macmillan Community Team and Integrated Primary Care Teams who attend practice meetings where possible. The Specialist Palliative Care Consultants have also agreed to support practice-based learning and critical event analysis.
This is also referred to as the End of Life Care LESS!

GPs are collecting their 1% using the GSF Prognostic Indicator as guidance -

Macmillan and IPC Teams have agreed to support practice-based learning and Critical Event analysis...

and assist in the grooming process to downsize care expectations to realise the Sussex 'Audacious Goals'!

Incidental reading -
Target-based CQUINS were set...
Providing that practices are achieving or aspiring to QOF indicators PC1 and PC2, payments will be per point achieved.  Practices may pick and mix achievement against indicators as they choose. The value of each point will be the as each practice’s points within the Organisational Domain of the QOF.  
The Summary Care Record (SCR), a nationally-based system,was promoted.

The Brighton & Hove pilot.

7a) NHS Brighton & Hove

Summary of development of the pilot
  • NHS Brighton and Hove chose to combine their locality register with the launch of the Summary Care Record (SCR). This would work by having the End of Life Care plan enriched onto the SCR, which would then be accessible to staff in those clinical settings which had SCR access.

Pulse Today

Pulse has been reporting on the LCP review -

Dr Dennis Cox, chair of the review panel’s clinical subgroup, stresses that GPs can continue to follow the LCP for the time being and urges them not to abandon the principles behind such end-of-life care plans.

Dr Cox emphasises that the new personalised end-of-life plans will be ‘condition-specific’. ‘There is a problem with the LCP. It’s not good enough for people who are not dying of cancer - if you’re dying of heart failure or of COPD it is not entirely appropriate,’ he says.

On Twitter, however, the Twits have been twittering:
Katherine Sleeman @kesleeman

"Email from Bee Wee, National Clinical director of EoL care, on ‪#‎LCP‬: A 'clear plan' is in place for development of #LCP replacement. 1/3" 
"She states 'No need for each hospital or regional group to develop its own plans.' #LCP 2/3"
"Note that email from Bee Wee sent to all members of Assoc Palliative Medicine, and I have their permission to disseminate info. 3/3 #LCP"
Bang goes that personal care plan thing...

In any event, Dr Cox says the LCP has become a ‘toxic brand’ that can no longer be used even if the principles underpinning it remain sound - particularly because the term ‘pathway’ tends to imply an irreversible, ‘one-way’ route to death. He says: ‘There’s nothing wrong with using the principles behind the LCP as guidance for best care, but in general because patients are frightened of it, it’s just not helpful any more. It’s the same as what Dr Shipman did for morphine in a sense. If we’d tried to rehabilitate the LCP, we’d just have a load more scared people.’
The review also recommended funding should be made available for palliative care teams to be accessible 24/7, both in hospitals and in the community, together with better integration so that information on the patient and their care is easily accessible.
The palliative care teams to be accessible 24/7 are the 'other health professionals' mentioned by Mail Online 
Under the scheme, when someone on an ‘end-of-life’ care register calls 999, their names will be flagged up on an electronic database, revealing whether they have expressed a wish to die in their own bed.
The ambulance crew will then decide whether they should take them to A&E or call in other health professionals to treat them at home.
The Pulse article concludes with this summary:

What is best practice for end-of-life care?

  • Early recognition is important to allow advance care planning. Evidence shows outcomes are improved and patients are more likely to die in their preferred place.
  • Around 1% of patients on a GP’s list die each year and at least 75% of deaths can be anticipated, so the current QOF palliative care register prevalence of 0.2% is too low.
  • Ask: ‘Would I be surprised if this patient was to die in the next six to 12 months?’ If the answer is no, consider them for the palliative care register and discuss an advance care plan.
  • Prognosis can be reviewed at team meetings using the Gold Standards Framework rating: red - a few days, amber - weeks, green - months.
  • Patients near the terminal phase can be recognised by signs of multi-organ failure such as more time spent in bed, increasing drowsiness, withdrawal, reduced food and fluid intake, and swallowing difficulties.
  • GMC guidance states patients and carers should be reassured that clinically assisted nutrition or hydration will be offered if of benefit but if a decision is made not to offer it, the patient will continue to receive high-quality care.
This is NCPC:
End of life care accounts for a high proportion of NHS spending. The Demos think tank has estimated it as at least a fifth of NHS costs and a total of about £20 billion
There is considerable scope for improvement using interventions such as early identification triggers, advance care planning, co-ordination of care and effective multi disciplinary team (MDT) working.
[Commissioning End of Life Care]

They have downsized care expectations. A system has been rolled out. It is in place. It is working. Excess deaths...?

Why is everyone surprised?

Further reading -

Liverpool Care Pathway – "Six Steps To Success"

Liverpool Care Pathway - The LKP Can Deliver