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

Christian doctors call for ban on NHS 'bribing' hospitals to put more patients on controversial death pathway

The Daily Mail has today run a story highlighting Christian Medical Fellowship’s suggestions on how the implementation of the controversial Liverpool Care Pathway could be improved.

The LCP is a framework for the care of patients in the last hours or days of life that is now used in the management of about one third of all dying patients in Britain.

The government is currently carrying out an investigation into its use and it is also the subject of a parliamentary debate on Tuesday 8 January.

I have blogged about the LCP extensively (see links here and latest update here)

The Daily Mail has used a dramatic headline (‘Christian doctors call for ban on NHS “bribing” hospitals to put more patients on controversial death pathway’) including the word ‘bribing’ which we did not use, but they have helpfully highlighted a number of our concerns.

The full CMF press release, my most recent blog and a recent Triple Helix article by Dr Jeff Stephenson are all available on line for those who would like to read our nine recommendations in full.

The Daily Mail has majored on the 7th of these which was worded as follows:

'Non-clinical priorities in the use of the pathway, especially financial priorities, must be eradicated and every patient treated solely according to their need. In this connection it would be far better to link CQUIN payments to staff training in the use of the pathway rather than numbers of patients placed on the pathway.'

The Daily Mail’s most salient quotes are as follows:

An influential group of Christian doctors yesterday called for an end to financial ‘bribes’ that encourage hospitals to place dying patients on the controversial Liverpool Care Pathway.

The Christian Medical Fellowship said judgments about whether to withdraw treatment from terminally-ill patients should be made solely on clinical grounds.

The CMF, which represents more than 4,000 doctors, said financial incentives for hospitals to use the system – thought to run at more than £10 million a year in total – should be ‘eradicated’ immediately.

It also urged ministers to tighten controls to end the ‘undoubted abuses’ of a system designed to ensure patients die with dignity.

Dr Jeff Stephenson, a Devon-based consultant in palliative care, said the care pathway could help ease suffering if used properly.

But he added: ‘It remains a tool, and it is only as good as those who use it. There is always potential for misuse and abuse and there are undoubtedly instances where this occurs.

‘Where these arise by intention then those involved should be held to account, but more often they occur through poor understanding and inadequate training.

‘We owe it to patients to not only furnish the means to better care, but also to equip adequately those who provide it.’

Payments to hospitals to introduce it are made through a system called Commissioning for Quality and Innovation, which channels money to hospital trusts through NHS ‘commissioners’.

…the CMF said a number of urgent steps were needed to restore public confidence in a system used in around 130,000 cases a year.

Hospitals are thought to have been rewarded with an extra £30million over the past three years for increasing their use of the LCP.

The CMF said these payments should be ended, with the cash diverted into better training for staff.

It said: ‘Non-clinical priorities in the use of the pathway, especially financial priorities, must be eradicated and every patient treated solely according to their need.’

The organisation also said no patient should be placed on the LCP unless they were ‘imminently dying’.

Assessments should only be made by senior doctors and the decision should be discussed with patients and their families.

Anyone placed on the pathway who shows signs of improvement should be taken off it immediately.

…The CMF also called for an annual audit of the care pathway to ensure it is being used properly.

Cases of abuse should be reported to the appropriate medical body, such as the General Medical Council, for possible disciplinary action.

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

Secretary of State for Health, Jeremy Hunt (pictured), yesterday hailed the controversial Liverpool Care Pathway (LCP) for patients who are dying as ‘a fantastic step forward’ in the way hospitals support the terminally ill.

I agree that the LCP is a useful clinical tool that has helped many thousands of people experience better care in the last hours or days of life, but like any tool it must be used with the proper indications and by properly trained staff.

Every airline accident should make our next air trip safer; in the same way every abuse or misuse of the LCP should mean that the same mistake never occurs again.

CMF has recently called on the government to consider nine key points in its recently announced review of the LCP which is currently used with around 130,000 people a year, about a third of annual deaths in the UK.

To iron out the abuses that have been reported, several key measures need to be implemented:

1.It should be made absolutely clear that no one who is not imminently dying within hours, or at most two or three days, should be placed on the LCP and anyone placed on it who shows improvement should be taken off it. These assessments should be made by senior clinicians.

2.No one should be placed on the LCP without it being discussed with the relative or carer (although the latter do not need to give consent).

3.Every patient placed on the LCP must be regularly monitored and reassessed by a multidisciplinary team.

4.The present documentation is far too complex and needs to be simplified and standardised so that those implementing it can easily follow the guidelines and supervisors can easily tell what is going on with each patient.

5.Training and supervision of those using the pathway needs to be standardised and improved and formal training should be required before any healthcare professional is able to use it.

6.An annual audit needs to be carried out and all suboptimal use identified promptly acted upon.

7.Non-clinical priorities in the use of the pathway, especially financial priorities, must be eradicated and every patient treated solely according to their need. In this connection it would be far better to link CQUIN payments to staff training in the use of the pathway rather than numbers of patients placed on the pathway.

8.Communication to relatives both by health professionals and organisations involved in LCP implementation needs to be substantially improved.

9.Those misusing the LCP should be quickly identified and in the case of abuse reported to the appropriate authorities (General Medical Council, Nurses and Midwifery Council or Health and Care Professions Council).

Writing in a recent review for CMF’s journal Triple Helix, Dr Jeff Stephenson, a Devon-based consultant in palliative care has said:

‘The LCP represents a pragmatic and effective response to some of the suffering experienced by many in the last days of life. It remains, however, a tool and it is only as good as those who use it. There is always potential for misuse and abuse and there are undoubtedly instances where this occurs. Where these arise by intention then those involved should be held to account, but more often they occur through poor understanding and inadequate training. We owe it to patients to not only furnish the means to better care, but also to equip adequately those who provide it.’

Stephenson’s whole article is well worthy of study.

Health professionals and organisations misusing LCP should be reported to regulators, says CQC

The Liverpool Care Pathway was developed at the Royal Liverpool University Hospital and the city's Marie Curie hospice to relieve suffering in dying patients, setting out principles for their treatment in their final days and hours.

But it has been dogged by controversy with claims that patients who were not imminently dying have been placed on it and that patients’ families were not fully consulted and informed.

Health Minister Norman Lamb is currently heading up an investigation into its use but in the meantime there are moves to counter its inappropriate use.

The Care Quality Commission (CQC) has this week agreed a statement with other health and care regulators about each organisation’s role and responsibilities in relation to the Liverpool Care Pathway (LCP).

The CQC regulates all health and adult social care services in England, including those provided by the NHS, local authorities, private companies or voluntary organisations.

The statement has had surprisingly little coverage in the media with only the Daily Telegraph noting it.

It says that ‘it is the duty of those professionals involved in the care of the dying to work together as a team to determine, in association with the person and those close to them, when it is appropriate to implement the LCP. The relevant regulators need to be informed if any person believes the implementation of the LCP to be inappropriate.’

The statement also makes it clear that clinical and other staff working in regulated services have a responsibility to bring it ‘to the attention of the relevant professional regulator’ should they ‘witness malpractice or unprofessional conduct in their work place’.

Nurses and midwives should be reported to the Nursing and Midwifery Council and other health professionals to the Health and Care Professions Council. Organisations should be reported directly to the CQC itself.

The Liverpool Care Pathway is a useful clinical tool that has helped many thousands of people experience better care in the last hours or days of life but like any tool must be used with the proper indications and by properly trained staff.

There have been disturbing case reports in the media about it being used inappropriately with patients who are not imminently dying and it is right that these cases are properly investigated by the appropriate authorities.

This clarification by the CQC about the proper procedures to be followed by clinical and other staff if they witness malpractice or unprofessional conduct in their work place is most welcome.

Meanwhile the people behind the pathway have recently spoken out in its defence and the CMF has published an excellent review article looking at it from a Christian perspective. It concludes:

‘The LCP represents a pragmatic and effective response to some of the suffering experienced by many in the last days of life. It remains, however, a tool and it is only as good as those who use it. There is always potential for misuse and abuse and there are undoubtedly instances where this occurs. Where these arise by intention then those involved should be held to account, but more often they occur through poor understanding and inadequate training. Successful roll out of the LCP needs much education, both initial and ongoing, and this may sometimes be underestimated or under-resourced. We owe it to patients to not only furnish the means to better care, but also to equip adequately those who provide it.’

I have previously outlined a list of issues that need to be addressed in the enquiry.

Investigation into the Liverpool Care Pathway – an update

On Monday 26 November, Care Minister Norman Lamb MP (pictured) convened roundtable talks with parliamentarians, doctors and patients' representatives to discuss the controversial Liverpool Care Pathway (LCP).

During the meeting, which I attended, the Minister announced a far-reaching review to consider the various issues raised, with an independent chair.

The review will consider the findings of three existing reviews being conducted by the Association of Palliative Medicine ('on the implementation of the pathway and the experience of professionals'), Dying Matters ('on the experience of the patient and their loved ones') and the End of Life Care Strategy ('on complaints surrounding the LCP and end of life care in hospitals').

The announcement has understandably received widespread media attention (BBC, Telegraph, Guardian, Mail).

The LCP has been the subject of criticism but has been defended by over twenty leading healthcare organisations and a group of more than 1,000 doctors. One testimony that has drawn a lot of attention is that of Dr Kate Granger, who as a terminally ill cancer patient and geriatric consultant has knowledge of both ends of this issue.

I have previously blogged extensively on the LCP and welcomed the investigation.

Currently about 80,000 patients per year have been supported by the LCP and there is no doubt that it has hugely improved the care of many thousands of patients in the last hours and days of life.

Furthermore the fact that most patients are dying within 33 hours of being placed upon it tells us that they are dying not from dehydration but from their underlying conditions. People usually take 10-20 days to die from dehydration and patients in the last hours or days of life often do not utilise fluids well and have no desire to drink.

However, the LCP has also come under justified criticism for its inappropriate use in some patients who are not imminently dying, its use by junior staff who have not been adequately trained or supervised and the fact that some relatives have not been informed that their loved ones have been placed on it.

Case reports of patients being on the pathway for up to two weeks before dying, or recovering and living for months after being taken off it after protests by relatives have been particularly disturbing and two doctors at the meeting actually called for the withdrawal of the pathway altogether.

If everyone followed the very clear guidelines issued by those overseeing the LCP’s implementation I doubt that we would be having the current discussion.

However it is clear that in some care homes and district hospitals implementation has been sub-optimal.

In order to iron out the abuses several measures need to be implemented:

1.It should be made absolutely clear that no one who is not imminently dying within hours, or at most two or three days, should be placed on the LCP and anyone placed on it who shows improvement should be taken off it. These assessments should be made by senior clinicians.

2.No one should be placed on the LCP without it being discussed with the relative or carer (although the latter do not need to give consent)

3.Every patient placed on the LCP must be regularly monitored and reassessed by a multidisciplinary team.

4.The present documentation is far too complex and needs to be simplified and standardised so that those implementing it can easily follow the guidelines and supervisors can easily tell what is going on with each patient.

5.Training and supervision of those using the pathway needs to be standardised and improved and formal training should be required before any healthcare professional is able to use it.

6.An annual audit needs to be carried out and all suboptimal use identified promptly acted upon.

7.Non-clinical priorities in the use of the pathway, especially financial priorities, must be eradicated and every patient treated solely according to their need. In this connection it would be far better to link CQUIN payments to staff training in the use of the pathway rather than numbers of patients placed on the pathway.

8.Communication to relatives both by health professionals and organisations involved in LCP implementation needs to be substantially improved.

9.Those misusing the LCP should be quickly identified and in the case of abuse reported to the appropriate authorities (General Medical Council or Nurses and Midwifery Council).

Every airline accident should make our next air trip safer. In the same way every abuse or misuse of the LCP should mean that the same mistake never occurs again.

We await the result of the investigation with great interest.

Investigation into Liverpool Care Pathway is most welcome

The investigation into the Liverpool Care Pathway announced by Health Minister Norman Lamb is most welcome.

The Liverpool Care Pathway was developed at the Royal Liverpool University Hospital and the city's Marie Curie hospice to relieve suffering in dying patients, setting out principles for their treatment in their final days and hours.

But it has been dogged by controversy with claims that patients who were not imminently dying have been placed on it and that patients’ families were not fully consulted and informed.

A series of changes to the NHS Constitution to be announced by the Government today, as part of a twelve week consultation, will include giving patients and relatives an explicit right to be consulted at every stage of end-of-life treatment, where possible.

Mr Lamb has also called for a meeting of doctors and patients to discuss worries about the pathway by the end of this month. The Association for Palliative Medicine will be carrying out its own parallel inquiry.

The latest proposals for changes to the NHS Constitution would open the way for hospitals which depart from guidelines to face legal challenges on behalf of patients.

Under the proposals being outlined today, a section of the NHS constitution which says that patients have a right to a general say in their care will be toughened up to make clear they should be ‘involved fully’ in ‘all discussions and decisions’ about their care, adding: ‘including in your end of life care’.

It adds that people should be given special support to help them take it in makes clear: ‘Where appropriate this right includes your family and carers.’

Mr Lamb said shortcomings could potentially be challenged in the courts under new powers for the new Clinical Commissioning Groups.

Personally I welcome these investigations and strengthening of the NHS Constitution aimed at improving care for those in the last hours or days of life.

When used appropriately by skilled staff the Liverpool Care Pathway is a useful clinical tool which has improved the care of thousands of dying patients. But case reports of it being used with patients who are not imminently dying or without families being fully informed have fuelled concerns and need to be fully investigated.

I hope that this inquiry will, lead to better care for dying patients and improved confidence amongst the general public.

The care of the dying needs to be in the hands of people who are fully trained and adequately supervised with regular careful audit to ensure that all patients receive the best care possible and that abuses do not occur.

My recent interview on the pathway for the Daily Telegraph can be accessed here and my previous blogs on the subject are linked below.

Past blogs on Liverpool Care Pathway

1. Is the NHS really killing 130,000 patients a year with the Liverpool Care Pathway?

2. The Liverpool Care Pathway – consensus statement from 22 organisations

3. Palliative Medicine specialists to investigate Liverpool Care Pathway

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

5. Government ministers and MPs wade in on Liverpool Care Pathway

Government ministers and MPs wade in on Liverpool Care Pathway

The controversial Liverpool care pathway (LCP), a framework used to manage patients who are imminently dying, has not unexpectedly now come to the attention of government ministers and MPs.

Earlier this year, the Daily Mail newspaper claimed in a headline that the NHS was killing off 130,000 patients a year via the LCP.

On the other hand a group of over 20 leading organisations have defended the LCP but at the same time emphasised that it must be used by trained people under expert supervision.

Like any clinical tool, if used on the wrong people for the wrong indications the LCP may well do more harm than good.

It now appears that things may be starting to move toward a long-awaited resolution where the LCP's appropriate use will be affirmed and its misuse will be identified and stamped out.

An article in today’s Express strikes a good balance on this.

Government ministers and MPs are now speaking out about the problem and investigations are being launched.

According to the Daily Mail Health Secretary Jeremy Hunt has hit out at the ‘unforgivable failure’ of some doctors to inform relatives that their loved one has been put on an ‘end of life’ programme.

‘People in the last days of their life deserve to be treated with dignity and respect, which at a minimum means involving individuals and their family in any decision regarding their care. I would expect any trust accused of such an unforgivable failure to investigate fully and learn lessons.’

Similarly Stephen Dorrell, chairman of the Commons health select committee, said there were clearly problems at some hospitals with the way the pathway was being used.

‘The idea that a person can be cared for at the end of life without the family being involved – that is not high-quality care as anyone would understand it.’

The Daily Mail also reports that ministers last week officially launched a wide-ranging investigation into the Liverpool Care Pathway after accusations it hastens the deaths of some patients.

Care Minister Norman Lamb said: ‘We need to know how patients and families feel about the care they receive. We need to make sure that health professionals have the best tools to help them with this sensitive work.’

Julian Brazier, Tory MP for Canterbury, said: ‘There should be an independent inquiry and not one run by the practitioners.’

The investigation will be run by a Heath Department organisation, the National End of Life Care Programme, and medical organisations which have been deeply involved in promoting and operating the Pathway.

It will have two elements. In the first, the £300 million NELCP will look into complaints about end of life care, including the Liverpool method. A group called Dying Matters will also talk to families.

The second element will involve consulting medical professionals about their views on the Liverpool pathway and other similar methods.

It will be led by the Association for Palliative Medicine, which represents 1,000 doctors.

The inquiry findings will be sent to the Department of Health but there is no pledge currently to make them public.

I suspect these inquiries, although welcome, will be too slow for critics.

My hope is that specialists in palliative medicine will in the meantime move swiftly to respond to the five key concerns that have been raised.

If they don’t the present controversy may well rage for some time yet.

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

Is the NHS really killing 130,000 patients a year with the Liverpool Care Pathway?

The Daily Mail and Daily Telegraph this week have run a story claiming that the NHS ‘kills off a 130,000 elderly patients every year’ through use of a ‘death pathway’.

The story has been picked up relatively uncritically by many news outlets around the world, and particularly pro-life sites (see here and here).

The claims are based on comments made by Professor Patrick Pullicino, who spoke at a Medical Ethics Alliance conference at the Royal Society of Medicine this week.

There are around 450,000 deaths in Britain each year of people who are in hospital or under NHS care. About 29% - 130,000 - are of patients who are on the Liverpool Care Pathway (LCP).

Professor Pullicino claimed that far too often elderly patients who could live longer are placed on the LCP and that has now become ‘assisted death pathway’ rather than a ‘care pathway’. He cited pressure on beds and difficulty with nursing confused or difficult to manage elderly patients as factors.

He also recounted how he had personally intervened to take a patient of the LCP who later went on to be successfully treated.

What do we make of all this? Are these national newspapers really revealing unprecedented levels of euthanasia in British hospitals or are these claims simply alarmist?

The Liverpool Care Pathway for the dying patient (LCP) is a treatment pathway used in the final days and hours of life which aims to help doctors and nurses provide effective end of life care.

It was initially developed between the Royal Liverpool Hospital and the City’s Marie Curie Hospice in the later 1990s and recommended to hospitals by the National Institute for Health and Clinical Excellence in 2004.

In 2006 a Health Department White Paper said it should be adopted across the country and it is now very widely used.

Before a patient can be placed on the pathway the multi professional team caring for them have to agree that all reversible causes for their condition have been considered and that they are in fact imminently dying.

The assessment then makes suggestions for palliative care options to consider and whether non- essential treatments and medications should be discontinued.

However it is by no means a ‘one way street’ and the patients on it are meant to be repeatedly assessed and taken off it if they show signs of improvement.

The programme provides suggestions for treatments to manage symptoms such as pain, agitation, respiratory tracts secretions, nausea and vomiting or shortness at breath that dying patients might experience.

After criticism by the Daily Telegraph in 2009 the LCP went through a further revision and version 12 was launched on the 8 December 2009 after over two years of consultation.

The new version was an improvement on previous ones and made absolutely clear that patients must be imminently dying (ie. within hours or days of death) before being placed on the pathway.

The 2009 Telegraph story was criticised by the Association of Palliative Medicine and the Care Not Killing Alliance as inaccurate. The Times welcomed it as an attempt to address patients’ wishes and warned about alarmist press coverage.

The Department of Health has responded to these latest allegations by saying that ‘the Liverpool Care Pathway is not euthanasia and we do not recognise these figures’ and adds that the pathway has had overwhelming support from clinicians both at home and abroad including the Royal College of Physicians.

Patients should be monitored at least every four hours and if they improve they are taken off the pathway and given whatever treatment is best suited to their new needs. An audit of the pathway’s use in 2009 showed that ‘where the LCP is used people are receiving high quality clinical care for the last hours and days of life’. This audit reviewed end of life care in 155 hospitals and examined the records of about 4,000 patients.

A 2012 audit looked at data from 178 hospitals (from 127 trusts) and examined 7058 patients records.

What we are seeing this week is a classic application of the ‘post hoc propter hoc’ fallacy, the mistaken notion that simply because one thing happens after another the first event was a cause of the second event.

It is certainly true that 130,000 British patients per year are dying whilst on the LCP. But it does not therefore follow from this that the LCP is the cause of their deaths.

If a patient is judged to be imminently dying and is placed on the LCP and dies within hours or days one can be virtually certain that the death was caused by the underlying condition.

However, on the other hand, if a patient is placed on the pathway and has hydration and nutrition removed whilst being sedated and dies, say ten-fifteen days later, then there must be a very real question about whether the withdrawal of hydration actually contributed to the death. But to put a patient on the LCP for this length of time is quite inappropriate.

I have no doubt that there are some patients who are not imminently dying who are being placed on the LCP inappropriately in Britain as Professor Pullicino has alleged.

However this is not the fault with the pathway itself but rather relates to its inappropriate use. Any tool is only useful if it is used with the proper indications.

The overwhelming majority of people on the LCP are experiencing much better care at the end of life than they would have had if it had not been used.

So what lessons can we draw from his week’s story?

First, we need to be very wary of jumping to conclusions on the basis of alarmist headlines. Claims that huge numbers of people are being starved and dehydrated to death in Britain are not borne out by the facts.

Second, such claims run the risk of playing into the hands of the pro-euthanasia lobby who like to claim that doctors are killing thousands of British people with sedation, morphine and dehydration already and that legalising injection euthanasia will therefore change nothing.

Third, calling deaths on the LCP ‘euthanasia’ can also distract us from the very real threat of ongoing attempts to legalise assisted suicide and euthanasia. It can also undermine the public credibility of some of those who oppose euthanasia.

But finally, we also do need to be alert to doctors and other health care professionals, either through negligence, ignorance or perhaps even malicious intention, misusing a perfectly good care tool to speed the deaths of patients who are not imminently dying. That is why good audit and good supervision are so important. Any misuse of the LCP must be exposed and dealt with.

In good hands the LCP is a great clinical tool. But in the wrong hands, or used for the wrong patient, any tool can do more harm than good.