Liverpool care pathway – next steps now clearer with setting up of new leadership alliance

The Liverpool Care Pathway (LCP) was developed by specialists in palliative care to improve the management of dying patients but its implementation was dogged by controversy leading to the establishment of an independent review.

The review, chaired by Crossbench Peer Baroness Neuberger, published its report in July.

It concluded that the LCP should be phased out ‘over the next 6 to 12 months’ and replaced by an individual end of life care plan, ‘backed up by good practice guidance specific to disease groups’.

The Government backed the recommendations and said it would ‘consider fully’ the committee’s recommendations over the coming months, to inform ‘a full system-wide response to the review’s recommendations in the autumn’.

The review highlighted a number of issues with the LCP, including, amongst others: specific gaps in evidence on the LCP; difficulty of diagnosing when a patient is actually going to die; issues with decision making and consent; lack of relatives’ involvement in the patient’s care plan; issues with hydration and nutrition; issues with sedation and pain management; a lack of clear accountability in decisions relating to the LCP; a lack of compassion in caring; scarce availability of staff at weekend or out-of-hours.

While acknowledging that prior to the introduction of the LCP ‘the care that patients received was variable and there were many examples of poor care’, the review panel made a number of recommendations for the introduction of an individual end of life care plan which should be developed by a coalition composed of various organisations.

The 44 recommendations made by the panel included the following:

• Patients should only be placed on the LCP or a similar approach by a senior responsible clinician in consultation with the healthcare team.
• Unless there is a very good reason, a decision to withdraw or not to start a life-prolonging treatment should not be taken during any ‘out of hours’ period.
• An urgent call for the NMC to issue guidance on end of life care.
• An end to incentive payments for use of the LCP and similar approaches.
• A new system-wide approach to improving the quality of care for the dying.

Along with the results of the review, the Department of Health published an Evidence briefing on pathways for the dying phase in end of life care, which formed part of the evidence base used by the independent review panel during its work.

Following the Government’s decision to implement the Review’s recommendations, Care Services Minister Norman Lamb sent a letter to the boards of all acute NHS Trusts asking them immediately to put into effect two actions:

• Undertake a clinical review, led by a senior clinician, of each patient who is currently being cared for using the LCP or a similar pathway for the final days and hours of life, to ensure that the care they are receiving is appropriate and that the patient, where possible, and their family is involved in decisions about end of life care; and
• Assure themselves that a senior clinician is assigned as the responsible clinician to be accountable for the care of every patient in the dying phase, now and in the future.

In addition, the Minister asked that all complaints about pathways for the dying should be ‘investigated properly’, with the appointment of an independent assessor if required. Trusts should also consider whether new evidence exists that would warrant a re-examination by the trust of past complaints about the LCP, in light of the findings of the Review. Finally, they should appoint a Board member with the responsibility for overseeing any complaints about end of life care and for reviewing how end of life care is provided.

On 30 August it was announced that a Leadership Alliance for the Care of Dying People (LACDP) was being set up under the chairmanship of Dr Bee Wee, National Clinical Director for End of Life Care at NHS England, to respond to the Independent Review.

NHS England, the Care Quality Commission (CQC), Department of Health (DH), General Medical Council (GMC), Health Education England (HEE), NHS Improving Quality (NHS IQ), Nursing and Midwifery Council (NMC) and the National Institute for  Health and Care Excellence (NICE) have already signed up to join the alliance in order to:

• support everyone involved in the care of people who are dying to respond to the findings of the review;
• be the focal point for the system’s response to the findings and recommendations of the LCP review;
• provide guidance on what needs to occur in place of the LCP;
• consider how best health and social sector can address the recommendations in the review about the accountability and responsibility of individual clinicians, out of hours decisions, nutrition and hydration and communication with the patient and their relatives or carers
• map existing guidance, training and development factors that might affect the adoption of good practice.

The new leadership alliance has a great challenge before it, but I hope that it is able to reach a strong evidence-based census about the next steps forward to ensure that dying patients in Britain are optimally cared for. 

It will need to move quickly if public confidence is to be effectively restored.

Previous reviews

CNK submission to official LCP review

Liverpool Care Pathway – nine points for the government to consider in its review

Specialists in Palliative Medicine need to act swiftly to respond to these five key concerns about the LCP

Yesterday I mentioned that the Association for Palliative Medicine (APM) had announced plans to launch an investigation into the controversial Liverpool Care pathway.

Today both the Daily Telegraph and the Daily Mail have run the story.

In addition a Daily Mail editorial today welcomes the investigation and outlines the major concerns that have been expressed by people contacting them as follows:

1. People have been put on the LCP without the knowledge or consent of their families

2. It is cruel to deny fluids to sentient beings

3. Doctors cannot accurately predict that someone is dying within hours or days

4. When doctors withdraw all treatment and nourishment, believing their patients have only days left, the prediction becomes self-fulfilling

5. When well over 100,000 are dying on the LCP each year, the suspicion inevitably arises that the pathway is being used to hasten death and free up beds

The editorial concludes that these are the fears the profession must address and allay if the LCP is to remain official practice.

These questions I would have thought are not difficult to answer and should be able to be addressed easily by any specialist in palliative medicine.

I would gladly attempt it myself but it would be much better if a specialist were to do it. It should not take more than 800-1,000 words.

I gladly offer this blog to anyone prepared to do so and will do all I can to draw it to media attention or to get the story placed in a major paper as an op ed piece.

Ideally it needs a named author but if you wish to remain anonymous that is fine.

Please contact me via this blog or DT me on twitter at @drpetersaunders

I see that the APM has today issued a fresh statement to the media as follows:

‘Our president’s blog has reported that we have recognised there is ongoing debate around Integrated Care Pathways, and the work we are proposing will identify and explore any concerns properly, and find ways of addressing those concerns and improving practice. The APM intends to join others in undertaking this piece of work. We would be very concerned if this proposal was conveyed in any other way. The members of the Association for Palliative Medicine continue to deliver, and support the delivery of, high quality palliative care, including listening and responding to concerns and anxieties experienced by our patients and their families about many different aspects of their illness and treatment, as part our holistic approach to their care.’

I understand that the National End of Life Strategy has also announced that they are going to carry out ‘a short snapshot review of complaints relating to end of life care within acute hospitals' with partnership organisations.

This will 'include complaints relating to the use of the Liverpool Care Pathway and any communication or perceived communication issues’.

It has invited specialists in palliative medicine to take part.

This are helpful and admirable statements and plans but the real priority now is to address the unanswered questions outlined above.

That is what is required to defuse the current controversy and to stop the Daily Telegraph and the Daily Mail continuing their criticism of the LCP.

Palliative Medicine specialists to investigate Liverpool Care Pathway

The Association for Palliative Medicine, representing over 1,000 doctors working in hospices and specialist palliative care units throughout the UK, is going to carry out new research into the use of the controversial Liverpool Care Pathway (LCP).

The LCP was developed to assist in the care of patients entering the last hours and days of life but there have been claims that it has been used to end the lives of people who were not imminently dying (but also see balancing comments here).

Understandably this has led to a large amount of adverse media coverage and investigations into individual cases of alleged abuse are currently on-going.

Responding to the media attention given to the clinical pathway over recent months the APM President, Dr Bee Wee, acknowledged for the first time this week on her blog that there are ‘some controversies about the strength of the evidence-base’ supporting the use of integrated pathways like the LCP and also ‘some very real anxieties amongst the public and some professionals’ about its use.

Instead of ‘simply defending the concept or reiterating that if only it were used properly it would be OK’ she suggested that ‘it might be more helpful to stand back a bit, identify and explore the concerns properly, and find ways of addressing those concerns and improve practice’.

The APM intends to announce details of this new work, which will be carried out in collaboration with other organisations, soon.

The Liverpool Care pathway has come under sustained attack by certain sections of the media in recent months prompting the recent publication of a Consensus Statement by 22 organisations, including the APM, supporting its appropriate use.

Both Dr Bee Wee and the Care and Support Minister Norman Lamb have written to the Daily Mail in the last week to express their concerns about media coverage. The letters are difficult to find on the Daily Mail website so I have reproduced them below.

It is good to see the APM now contributing to this important debate and the fact that they have clearly acknowledged that there are real concerns that need to be addressed will hopefully move us towards some resolution of the current controversies.

Letter to Daily Mail from Drs Bee Wee (President) and David Brooks (Vice-President) of the Association for Palliative Medicine (22 October)

Dear Editor

We are concerned about the irresponsible journalism of recent scare stories in this paper about care of patients who are approaching their last days of life.

Care pathways for patients in the last days of life and Electronic Palliative Care Coordinating System (previously known as end of life care registers) are both designed to ensure that patients get the quality of care they need in their last days, weeks and months of life.

When properly used neither should deny anybody treatment or care that may benefit them, including food and fluids, and neither should lead to hastening death. Both should ensure that patients and carers are more informed about the current state of the person’s illness and life expectancy, and that their views are taken into account.

We accept that use of any pathway or care tool requires adequate training and in some areas there are inadequate specialist palliative physicians and nurses to provide the training needed by the non-specialists who provide the majority of this care.

There may be individual cases where the tools intended to promote good care have been poorly applied leading to concerns for relatives and carers but these individual stories should not be blown out of proportion. There is a risk that scaremongering due to individual examples of bad use of good tools leads to depriving the silent majority of patients the care they should expect in their last days of life. What the Mail and other media need to highlight is the need for adequate specialist palliative care and training resources to ensure that care is delivered well and appropriately at the end of life so that patients die in comfort and dignity.

Yours sincerely

Letter to Daily Mail from Care and Support Minister, Norman Lamb (19 October)

Dear Editor

Your headline, '3,000 doctors putting patients on 'death lists'' (Thursday 18 October) is wilfully misleading.

The GP End of Life Care register is no more sinister than other lists of those with diabetes or heart failure who need additional care. It is a way of making sure that planning so the patient's wishes come first and ensuring that people are cared for with dignity and appropriately at the end of their life.

You also insist the Liverpool Care Pathway systematically denies treatment to those who are dying. Nothing could be further from the truth; it is simply about ensuring that patients receive whatever treatments are right for them in the final days and hours of their life. More than 20 leading organisations including the Royal College of GPs, Marie Curie Cancer Care, and Age UK have already jointly signed a statement supporting the Pathway and addressing your misrepresentation. I am copying this letter to them.

Almost three quarters of people say they would choose to be cared for at home, in their own bed. But just over half actually die in hospital. Your article was wrong to assert that NHS organisations are moving patients away from hospital in order to save money. By preparing an End of Life Care plan, patients have the best chance of having their wishes met – surely something everyone can agree is a good thing.

Despite the fact this work gives patients better care I am concerned about reports some doctors are not properly communicating with their patients. I cannot stress enough the importance of involving patients and families in their care. I have asked officials to look at how best we can ensure that this always happens. I will also be meeting patient groups to ensure that their interests are always paramount. I am very happy to discuss any of these issues directly with you.

Yours sincerely

The Liverpool Care Pathway – consensus statement from 22 organisations

Twenty two leading healthcare organisations last month published a statement about the Liverpool Care Pathway to counter adverse publicity in the mainstream press.

I have written extensively on this controversial end of life treatment protocol before and won’t rerun the arguments here except to say that this new statement is well overdue and hopefully will go some way to quelling concerns.

The full statement, which has had surprisingly little publicity, reads as follows:

Consensus Statement: Liverpool Care Pathway for the Dying Patient (LCP)

Published misconceptions and often inaccurate information about the Liverpool Care
Pathway risk detracting from the substantial benefits it can bring to people who are dying and to their families. In response to this we are publishing this consensus statement to provide clarity about what the Liverpool Care Pathway is - and what it is not.

The hospice movement in the UK is famous around the world for looking after dying people with dignity and skill. Since the late 1990s, the Liverpool Care Pathway has been helping to spread elements of the hospice model of care into other healthcare settings, such as hospitals, care homes and people’s own homes.

The Liverpool Care Pathway:

•Requires staff ensure all decisions to either continue or to stop a treatment are taken in the best interest of each patient. It is not always easy to tell whether someone is very close to death – a decision to consider using the Liverpool Care Pathway should always be made by the most senior doctor available, with help from all the other staff involved in a person’s care. It should be countersigned as soon as possible by the doctor responsible for the person’s care.

•Emphasises that people should be involved in decisions about their care if possible and that carers and families should always be included in the decision-making process. Of those who responded as part of the evaluation, 94% said that they had been involved (National Care of the Dying Audit – Hospitals, MCPCIL/RCP, 2011).

•Relies on staff being trained to have a thorough understanding of how to care for people who are in their last days or hours of life.

•Is continually evaluated in all the places where it is in use.

The Liverpool Care Pathway does not:

•Replace clinical judgement and is not a treatment, but a framework for good practice.

•Hasten or delay death, but ensures that the right type of care is available for people in the last days or hours of life when all of the possible reversible causes for their condition have been considered.

•Preclude the use of clinically assisted nutrition or hydration - it prompts clinicians to consider whether it is needed and is in the person’s best interest. GMC guidance (2010) provides specific information regarding this issue.

In response to a question asked in the House of Lords on 20th June 2012 the Parliamentary Under Secretary of State for Health, Earl Howe, said (see full parliamentary debate here):

“The Liverpool Care Pathway has sometimes been accused of being a way of withholding treatment, including hydration and nutrition. That is not the case. It is used to prevent dying patients from having the distress of receiving treatment or tests that are not beneficial and that may in fact cause harm rather than good.”

The Liverpool Care Pathway has been suggested as a model of good practice in the last hours and days of life by successive national policy frameworks (DH, 2003 and 2006), the national End of Life Care Strategy (DH, 2008), Quality Markers and Measures for End of Life Care (DH, 2009), General Medical Council guidance (2010) and the NICE quality standard for end of life care for adults (2011).

We support the appropriate use of the Liverpool Care Pathway and make clear that it is not in any way about ending life, but rather about supporting the delivery of excellent end of life care.

Age UK
Alzheimer’s Society
Association for Palliative Medicine of Great Britain and Ireland
Association of Directors of Adult Social Services
British Geriatrics Society
British Heart Foundation
English Community Care Association
Help the Hospices
Lindsey Lodge Hospice
Macmillan Cancer Support
Marie Curie Cancer Care
Motor Neurone Disease Association
Multiple Sclerosis Society
National Care Forum
National Council for Palliative Care
National End of Life Care Programme
National Nurse Consultant Group (Palliative Care)
Nuffield Trust
Royal College of General Practitioners
Royal College of Nursing
Royal College of Physicians
Sue Ryder