The Liverpool Care Pathway (LCP) has attracted controversy since its development in the late 1990s, sparking debate amongst healthcare professionals and public alike. In the last 12 months it has come under fresh criticism from the media following a series of articles published in the Daily Mail that claimed that the LCP was a method of hastening the deaths of terminally ill patients through starvation or dehydration, one writer claiming that this was in order to save hospital beds.1,2

Such reports were not exclusive to the tabloid press. A recent article in The Telegraph describes how the Scottish Fatalities and Investigation Unit are investigating an elderly patient's death following claims by her son that doctors attempted to hasten her death by withdrawing food and fluids for 30 hours while on the LCP.3

Among the complaints made by relatives to the media, common themes evolved. The perceived withdrawal of food and fluids in dying patients caused relatives a great deal of distress and sometimes led to the belief that clinicians were deliberately hastening death. There were numerous reports of patients being put on the LCP without any discussion with relatives and some relatives were not even aware that the patient was dying- such instances highlighted clear examples of poor communication.

In the light of the Mid-Staffordshire enquiry, the government responded rapidly. In January 2013, the Department of Health announced that an independent review of the LCP was to take place, chaired by Baroness Julia Neuberger. The review was to examine cases where the LCP had been used as well as hearing the experiences and views of healthcare professionals and families of patients. The findings of this review will be discussed in more detail later.

What is the LCP?

The LCP was developed by the Royal Liverpool University Hospital and the Marie Curie Hospice in response to the realisation that patients dying in acute hospitals were not dying in a comfortable and dignified manner and there was inadequate support for both relatives and clinical teams when dealing with a dying patient. It had been recognised that the hospice movement had a model to facilitate excellent end of life care and an integrated care pathway was developed to transfer the hospice model to acute hospitals. The LCP has been used by clinicians for almost 10 years.

The LCP is essentially a framework to be used by multi-disciplinary teams caring for patients at the end of life. It is not a protocol to be rigorously followed but rather a guidance document. According to the document, multidisciplinary teams are encouraged to consider whether the patient may be in the last 72 hours of their life. If this is considered to be the case (and teams are encouraged to seek specialist advice), the team may use the LCP document to guide them in making clinical decisions and in considering the patient's non-medical needs.

The LCP reflects the ten key elements for care of the dying patient4 (Box 1). It allows teams to document decisions regarding interventions such as blood tests, medications for symptom control and antibiotics.

The use of the LCP does not preclude giving clinically assisted hydration or nutrition and gives no instruction for the withdrawal of food and fluid. It simply prompts teams to consider the patient's hydration and nutritional status and allows documentation of any decisions.

The importance of communication with patients and their relatives and carers is emphasised throughout. Discussions with the patient and their family regarding the care plan should be documented.

The multidisciplinary team is encouraged to establish the psychological and spiritual needs of the patient and their family and ensure they are met.

The LCP has been recommended as a model of best practice by successive national policy frameworks published by the Department of Health, General Medical Council guidance and NICE.4

More care, less pathway

The authors of the independent review5 received many positive reports from families of dying patients supported by the LCP and they believe that the LCP appears to work well, when implemented by "well trained, well resourced, sensitive clinical teams". However, they believe that on too many occasions, the LCP was used as a tick box exercise and as an excuse for poor care.

Some of their specific concerns are outlined below:

• The authors were concerned that the term "end of life" lacks clarity, as it may apply to any time within the last year of life and the term may have been inappropriately used and interpreted by clinicians, leading to inappropriate use of the LCP.

• The LCP is a framework, rather than a protocol, in that it does not give specific instructions but encourages clinicians to make decisions according to the individual patient's best interests. However, perhaps due to a lack of clarity about its nature, some clinicians have taken the LCP as a set of instructions to be followed, resulting in poor decision making.

• The authors were concerned about the name "Liverpool Care Pathway" and specifically the term "pathway". They felt that relatives were unlikely to understand the concept of an integrated care pathway and that inevitably many relatives would interpret the term "pathway" as a one-way road to death, facilitated by clinicians.

• The authors were concerned by gaps in the evidence available to support the use of "pathways" at the end of life, as opposed to other methods of treatment. While the National Audit of the Dying in Hospitals has provided some information, there has been no independent formal testing of the LCP since its dissemination.

• Diagnosing dying is an imprecise science associated with uncertainty. This is acknowledged by the LCP document, but the panel felt that the document did not provide enough support for the non-specialist clinician in diagnosing dying. The panel heard of many examples where patients recovered on the LCP, or were on the LCP many days before death. They felt that these situations can cause significant distress for relatives who are expecting their relative to die imminently. It was felt that doctors should express levels of uncertainty more clearly.

• The panel found a lack of clarity as to whether the initiation of the LCP was a decision requiring consent from the patient. Although the LCP is not a treatment in itself and so does not require consent, certain aspects such as prescribing sedating drugs may require discussion and consent-in many instances, neither the patient nor their family were involved in such decision making.

• Many respondents who were critical of the LCP made reference to hydration and nutrition. There were stories of relatives being abruptly informed that food and fluids were being withheld as the patient was on the LCP. Some patients were denied a drink of water, due to fears of aspiration. Of course, the LCP does not preclude the giving of nutrition and fluid if the patient is able to take it, and does not even preclude the use of clinically assisted nutrition or hydration. The examples demonstrate clear misunderstanding of the LCP's recommendations that "the patient receives fluids to support their individual needs".

• The panel received reports from relatives who felt their loved one had been over-sedated, to the extent that they could not ask for a drink, through the use of syringe drivers. Some patients appeared to be placed on a syringe driver as a matter of course, rather than due to clinical need.

• The panel was concerned that hospitals were rewarded financially when dying patients were supported by the LCP. These financial incentives form part of the Commissioning for Quality and Innovation Framework scheme to reward good practice, but the panel felt that this approach provoked the suspicion that patients were being placed on the LCP with a financial reward in mind.

Summary of recommendations:

Below are some key recommendations made by the review. The full 44 recommendations are available online.5

• The Liverpool Care Pathway should be replaced within 6-12 months with an end of life care plan for each patient.

• The name "Liverpool Care Pathway" should be abandoned and the term "pathway" avoided.

• Decisions to continue or discontinue life prolonging treatment should not be made out of hours. Such decisions should be made during the daytime by the responsible senior clinician.

• To aid clinicians in diagnosing dying, evidence based prognostic tools should be promoted. Clinicians should receive training and education in communicating the uncertainty around diagnosing dying.

• All staff in contact with the patient should be trained in the appropriate use of nutrition and hydration at the end of life. Failure to support oral nutrition and hydration where still possible and desired should be viewed as professional misconduct.

• Before syringe drivers are commenced, their use should be discussed with the patient and their relatives.

• Financial incentives for hospitals for the use of the LCP should be discontinued.

• It must be the responsibility of the senior clinician to document the meeting where an end of life care plan was first discussed with relatives. It should be documented that relatives were made aware that the patient is dying and that they were given the opportunity to ask questions.

Response from medical professionals

Professor John Ellershaw, Director of Marie Curie Palliative Care Institute Liverpool, welcomed the report and the challenges it highlighted in palliative care.4 He stated: "As the review report recognises, the Liverpool Care Pathway for the Dying Patient when implemented properly can improve care for dying patients. However it is clear that there are still too many examples of poor care for dying patients in our hospitals. It is also clear that the name Liverpool Care Pathway can now sometimes be a barrier to communication and good clinical care. We urge the government to consider the review report alongside the national and international evidence on how best to care for dying patients".

Dr Richard Harding, Reader in Palliative Care at King's College London's Cicely Saunders Institute, echoed these views adding that the review "highlights the importance of adequate training, research and education". He stated that evidence must be gathered in order to "understand what works best for patients and families."6

However, the chairwoman of the Royal College of General Practitioners, Clare Gerada warned of "throwing the baby out with the bathwater", saying "we need to take what has been shown to work from the existing pathway and make sure that it is implemented consistently across the country".7

Discussion

So much progress has been made in the last half a century in promoting and enabling good palliative care and the LCP should surely be included in this bracket; it has helped make good end of life care the responsibility of every member of a clinical team and drawn attention to need for holistic care at this time.

However, the review has made it clear that good end of life care is not always being delivered and as healthcare professionals we should respond proactively to such criticisms in order to provide the best care for patients.

There are many challenges on the horizon; change must not only come from individuals but also on an organisational and strategic level, requiring time and funding.

The recommendation that life-prolonging treatments should not be withdrawn out of hours (ie. decisions to take a palliative approach should not be made outside the hours 9-5) could prove particularly difficult to follow. Not only will it require excellent forward planning, documentation and communication between teams but there will always be cases where patients deteriorate unexpectedly out of hours. On these occasions, withdrawal of life prolonging treatments may be in the patient's best interests.

Healthcare professionals should now make an effort to stay up to date regarding changes in end of life care by searching for announcements made by the Department of Health, local trusts or through their own palliative care teams. General guidance in end of life care is also available online via the General Medical Council.

Finally, clinicians should remember that no pathway, plan, or protocol can be a replacement for good clinical judgement, compassion and care.

Conflict of interest: none declared

References

1. Doughty S. Doctors to act on Care Pathway: after Mail campaign, investigation is launched into controversial guidelines on "hastening death." Daily Mail, 24 Oct 2012, available at http://www.dailymail.co.uk/news/article-2222702/Liverpool-Care-Pathway-Investigation-launched-controversial-guidelines-hastening-death.html, accessed 24 July 2013.

2. Phillips M. Care? No, this is a pathway to killing people that doctors deem worthless, Daily Mail, 14 Oct 2012, available at http://www.dailymail.co.uk/debate/article-2217748/Care-No-pathway-killing-people-doctors-deem-worthless.html, accessed 24 July 2013

3. Bingham J. 'Investigation into Liverpool Care Pathway death', The Telegraph, 2 July 2013, available at http://www.telegraph.co.uk/health/10153414/Investigation-into-Liverpool-Care-Pathway-death.html, accessed 24 July 2013

4. The Marie Curie Palliative Care Institute Liverpool, Statement regarding LCP review publications, available at http://www.liv.ac.uk/media/livacuk/mcpcil/documents/Statement,-,LCP,review,15,July,2013.pdf, accessed 24 July 2013

5. Neuberger J, Guthrie C, Aaronovitch D, et al. More Care Less Pathway A Review of the Liverpool Care Pathway, Department of Health, 2013, available at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf, accessed 24 July 2013

6. King's College London, Response to the LCP review from King's palliative care experts, available at http://www.kcl.ac.uk/newsevents/news/newsrecords/2013/07-July/Response-to-the-LCP-review-from-Kings-palliative-care-experts.aspx, accessed 24 July 2013

7. Hawkes N. Liverpool care pathway is scrapped after review finds it was not well used, BMJ, 2013, available at http://www.bmj.com/content/347/bmj.f4568, accessed 24 July 2013