Liverpool Care Pathway - The Dust Has Settled. All Change! Nothing's Changed.

If I am going to die, I would rather it be despite your best efforts to save me than because you have helped me on my way.

There are always consequences and the Review has had its own repercussions. Both overviews and self-congratulatory reaffirmations have been published...

They are as arrogant as ever they were and sure in themselves that they may 'diagnose' dying.

They are armed with the same tools and are confident in the efficacy of these tools to do the job.

They will continue to act in what they consider your best interests for this is what they have been groomed to do and groom others to do.

They know better than you what is best for you. They will act and, if necessary, will not keep you or your family fully informed if that is also what they deem to be in everyone's best interests.

They know what is best and they are trained to know what is best and not to waste finite NHS resources on what they, in their wisdom, deem to be futile interventions, and they will discontinue these interventions accordingly if necessary.

In this Halton Borough Council Report to the Health & Wellbeing Board, an "overview" of current End of Life services available in Halton is provided, including future priorities.

The recommended EoL tools are here reaffirmed -

- Halton Borough Council Report 

4.1 Identifying a Patient Approaching End of Life

Identifying when a patient is approaching the end stages of life is inherently difficult. As such, within primary care it is necessary to ensure that there is guidance in place to assist in identifying those patients and ensure they are recorded and monitored so that their care can be effectively coordinated.

The Gold Standard Framework (GSF) is a system designed to support this process supported by GSF Prognostic Indicator Guidance. This guidance is to assist GP’s in identifying symptoms that would indicate a patient is approaching the last 12 months of life. Once this identification has been made they should then be added to an End of Life register within their GP Practice.

Once added to the EoL register, the grooming may begin and a palliative response will take priority. Their best efforts will be directed to easing them on their way.

The weapon of choice is the GSF; the SPICT is given no mention.

The groomers are being groomed

In common with similar programmes reported in these pages, in Kent and on the Sussex coast in Brighton involving Macmillan Community Teams, 'bespoke' training initiatives are proceeding and an integrated EoL Register on which will be recorded EoL 'wishes'.

Oh, ye beware of what ye wish that it shall be your own undoing!

The Municipalisation of EoLC is established.

An Advanced Care Planning Team has been established within Halton, which includes an End of Life Care Facilitator and a Project Support Officer who are supported by the wider Palliative care network. The role of the Advanced Care Planning team is to provide staff within both health and social care settings with the skills and training to be able to initiate discussions and effectively communicate with patients and families.

To date, a number of initiatives have taken place to improve end of life skills across health and social care including:

• Bespoke training with GP Practices including all staff. 

• Half day training events on end of life tools 

• Commencement of the Six Steps training programme in 11 Care Homes

• A two day training Course across care management and assessment services with the aim of increasing knowledge of end of life care issues, which was attended by 74 staff including managers, Social workers, Occupational Therapists and Community Care Workers.

• A number of end of life champions identified across social care teams who will attend a Multi-Agency End of Life Champions Forum.

Warrington Clinical Commissioning Group (CCG) says:

It wasn't us...

- Warrington NHS

The LCP

is intended to help patients die a peaceful and dignified death but unfortunately in some parts of the UK, the Pathway has not been implemented correctly and this has led to the review and subsequent recommendations to replace it with personalised care plans. 

Dr. Andy Davies, Chair of the CCG -

“In Warrington, the Liverpool Care Pathway has been a successful guiding tool in improving the timeliness and quality of decisions about the care of dying patients.

“It is intended to help patients die a peaceful and dignified death but unfortunately in some parts of the UK, the Pathway has not been implemented correctly and this has led to the review and subsequent recommendations to replace it with personalised care plans.

“We are fully committed to ensuring that that only the highest standard of care is given to patients and we are currently working with our healthcare partners, providers and clinicians alongside patients and their carers to review the recommendations made and ensure that we continue to deliver the best care for our residents at the end of their lives.”

The St. Rocco's Hospice is grant funded by the CCG to provide palliative care to people with 'life-limiting' illnesses.

St. Rocco’s Hospice, which receives grant funding from Warrington CCG to provide specialist palliative care for people with all life limiting illnesses works to help hundreds of patients and their families in Warrington each year, providing clinical treatment, emotional and spiritual support, symptom control, nursing care and complementary therapies.

Pam Massey, Chief Executive of St. Rocco’s Hospice, said: “At St. Rocco’s Hospice we strive to deliver the highest standards of individualised care and psychological support at end of life to ensure that our patients are regularly reviewed and assessed, are offered treatments to maintain comfort, are treated with the utmost dignity and respect and are continually communicated with by our skilled and trained doctors and nurses.

“Documentation that we are currently using to capture this quality care is the Liverpool Care Pathway document. It is not the means by which we provide the care but is how we record the care given to ensure the highest standards are consistent, appropriate and based on the needs of the person at that time."

If a person is diagnosed with a 'life-limiting' illness are they then deemed to be dying? Perception is everything.

“As new guidelines and information is developed over the next 12 month’s, St Rocco’s will review and agree any changes to our processes with our skilled clinicians, who will keep our patients and families fully informed.” 

The shape of things to come

The Amber document has been embraced by the NSW Government. Advance Planning for Quality Care at End of life is an EoLC Action Plan for 2013 - 2018. In this is discussed 'end of life conflict'.

End of life conflict is defined as disagreement which occurs about the goals of care or treatment decisions at the end of life and where such conflict is not resolved by the usual recourse to time and further discussion between the patient, the family and the treating clinicians, as appropriate.

The point of foreseen conflict is on the issue of what is considered the appropriate response.

Medical treatment is intended to intervene to promote recovery. That is the upsize perspective. The downsize perspective is that it prolongs the dying process and 'forestalls death'. Are these to be considered 'futile' interventions?

Perception is everything and alters outcomes fundamentally.

This is Croydon Health Services NHS Trust -

-  Croydon Health Services NHS Trust

Until national proposals are produced for a new framework, Croydon proposes to continue to use the latest version of the LCP (version 12), subject to stringent safeguards, notably that the decision to place a patient on the LCP will be taken by the patient’s Consultant, having discussed this with the patient (where possible) and the patient’s family and that the family are in agreement. CHS staff training will include priorities for the care of patients at the end of life across all clinical staff, and the Trust will work towards providing a seven day a week face to face specialist palliative care service with on-going provision for advice out-of-hours.

In accordance with the recommendations of the Neuberger Committee that a lay Board member should lead take responsibility for the care of dying patients across the Trust, Godfrey Allen will assume this responsibility in Croydon.

All change! Nothing's changed.

As an interim, we propose that CUH will continue to use Version 12 of the LCP as a framework to provide patient and family centric end of life care for those patients who meet the criteria for the pathway, whilst an alternative is developed. Use of the LCP will be phased out when a viable alternative is agreed. The new framework will be implemented by the Palliative Care Team. The Palliative Care Team strongly believe that abrupt withdrawal of Version 12 LCP will create a greater risk that poor quality end of life care may be delivered by CHS, than continuing to use Version 12 LCP with the caveats proposed in this report.

Risk.

Wherein lies the risk and what is the risk?

The NHS is still running an office hours only service for people like Mr. Christopher Leggatt, an active 65-year-old, who was turned away from Bradford Royal because the medics had gone home.

It is disturbing that there is a focus on dying well and setting in place provision for dying well and not for living well; that, therein, lies the focus of concern.

Coordinate My Care (CMC) is being rolled out across London. The CMC record can be accessed 24/7 through a central password-protected secure internet connection used by the NHS.

The CMC may contain all your dying wishes.

The CMC permits access, according to 'need to know', to GPs, community nurses, community palliative care teams, hospitals, hospices, social workers, London Ambulance Service, 111, intermediate care and nursing/care homes.

The CMC and the NHS 111 services are now inter-operable.

Croydon University Hospital (CUH) is seeking increased uptake of Coordinate my Care record (CMCR) for patients discharged across the Trust with life-limiting conditions. Responsibility for this is with the Palliative care EOLC CQUIN lead. That speaks for itself.

It is established CUH practice that patients cared for at the end of life may continue, start or stop clinically assisted hydration and/or nutrition with all decisions made in an individual’s best interests, in line with the Version 12 LCP framework. 

Because of heightened awareness about the LCP at the moment, there may be increased anxiety. Professionals should go out of their way to check if patients and their families have any concern about their end of life care, whether or not the Liverpool Care Pathway is being used. There should be a very low threshold for referral to the specialist palliative care team for end of life care advice.

The patient may 'continue, start or stop' hydration according to 'best interests' and LCP mark XII.

Mr. Les Mitton's step-daughter, Shirley Bolger, has a thing or two to say about that. And Mr. Mitton would if he could but his life has been taken!

Risk.

Wherein lies the risk and what is the risk?

The Royal Wolverhampton has it all in hand. This is the Trust Board Report -

- The Royal Wolverhampton NHS Trust

The lead Clinician for Palliative Care, Dr Clare Marlow undertook a review of all inpatients on the LCP at the time. Only one patient was found to be on the LCP and a review of that patient care showed it was being used appropriately.

The Medical Director sent out an email to all consultants to remind all teams of the importance of following the guidance on use of the LCP (copy of this e-mail is attached for reference).

Every patient already has a named consultant, whether in the therapeutic or dying phase of care. More work needs to be undertaken to ensure clarity of management when more than one specialty are involved in an individual patients care.

The email from the Medical director, Jonathan Odum, contains the following nota bene -

NB: Because of heightened awareness about the LCP at the moment, there may be increased anxiety. Professionals should go out of their way to check if patients and their families have any concern about their end of life care, whether or not the Liverpool Care Pathway is being used.

This statement, word for word, is contained in the CHS document...

The Bee Wee memorandum is also reproduced at the end of the document.

The grandiose and delusional Dr. Bee Wee, of the newly established and rather grandiose 'Leadership Alliance for the Care of Dying People' signs herself in a grand fashion...