The Liverpool care pathway: what students should know
After months of bad press the official review concluded it must be scrapped. What next?
No matter where you are in your medical training, you will most likely have heard of the Liverpool care pathway (LCP), the protocol used in the United Kingdom to facilitate end of life care. After months of bad press the government ordered its review earlier this year. “More Care, Less Pathway,” the review presented by Baroness Neuberger in July, wasn’t entirely negative, accepting that the LCP could “provide a model of good practice for the last days or hours of life for many patients,” and that, “before the widespread introduction of the LCP into hospitals, the care that patients received was variable and there were many examples of poor care.” However, Neuberger said that the application of “generic protocols” such as the LCP to the care of all dying patients is inappropriate, and in the review’s damning conclusion, “it is clear that in the wrong hands, the LCP has been used as an excuse for poor quality care.”
So what is next for end of life care? The review makes several recommendations. The LCP is to be phased out and replaced by an individualised end of life plan for each patient, including guidance specific to their condition. It also calls for the establishment of regulatory and professional bodies that include representatives of both the NHS and patient groups, who will be “setting clear expectations for a high standard of care for dying patients—care that will also meet the important and sometimes neglected needs of their relatives and carers.” Additionally, the review highlights the need for a “proper National Conversation about dying. Otherwise doctors and nurses are likely to [be blamed] for an inadequate understanding of how we face our final days.”
What was the LCP?
The LCP was a framework for end of life care, summarised in a document to be followed by the doctors and nurses involved in the care of a dying patient. It was originally devised to “translate the model of hospice care for the dying into other healthcare settings using an integrated care pathway for the last hours or days of life.”
The LCP was based on the experience of caring for dying patients in hospices, where doctors were more familiar and expert in end of life care. The creators of the pathway hoped to share the approach that they found helpful. The aim of the pathway was to provide dying patients with a better death wherever they were being cared for. However, no randomised controlled trials were performed to determine what the pathway should consist of, and there was no research carried out after its development to see how it compared with care without the pathway.
Once implemented, doctors and nurses used the LCP for patients who were expected to die within hours or days. First, dying must be diagnosed by a senior doctor—this can be difficult because it is impossible to predict exactly when someone will die. Regular review every four hours was recommended, and if the patient’s condition improved at any point, they could be taken off the pathway and the management plan amended appropriately. This should have been explained to the patient if possible, and to their family.
Being put on the LCP meant a switch in emphasis of care to focus on alleviating bothersome symptoms, which are often similar at the end of life irrespective of the condition from which the patient is dying. Doctors and nurses wrote in one set of notes to avoid confusion. Drugs were given only when needed, at the right time, and in a quantity that was no more than was required to help the symptom. Medication not prescribed to treat symptoms, such as statins to reduce the long term risk of cardiovascular disease, could be stopped if the benefits no longer outweighed the risks. Similarly, when the patient lost interest in eating or drinking food and fluid could be stopped, with fluids being administered by drip only if the patient displayed obvious signs of thirst.
An information leaflet given to carers or relatives when the LCP was initiated, which encouraged them to spend time with their relative or friend. It also emphasised the importance of good communication between the medical team and the carer or relative, asking the family or friends to let the care team know if they thought the patient’s wishes were not being met.
The creators of the LCP acknowledged that as a generic document it was “only as good as the teams using it,” and stated that “as with all clinical guidelines and pathways the LCP aims to support but does not replace clinical judgement.”
“A cautionary tale”
“[The LCP’s] fate serves to warn us of the dangers of implementing tools that are not properly evidence based,” write Katherine Sleeman and Emily Collis in a recent BMJ editorial. It is a “cautionary tale” they say— if used appropriately, “the LCP can provide a model of good practice for the care of dying patients.” And although the pathway has improved the deaths of some patients, it has also been “the focus of profound grief and regret for others.”
So where does this leave doctors, nurses, and patients? It is not yet clear whether scrapping the pathway will do more harm to patient care than good. “Ultimately, the decision to phase out the LCP was made on the basis of little more than an accumulation of anecdotal evidence,” they continue. “The recommendation by the panel to phase in condition specific guidance over the next six to 12 months should therefore be approached with caution. It is imperative that we do not repeat the same mistakes, and introduce new guidance without first testing it properly.
Currently, though, there is little money spent on palliative research. “Recent data from the National Cancer Research Institute show that in 2012, of £507m (€588m; $781m) spent on cancer research, just 0.31% went to end of life care. In non-cancer conditions, spending on end of life research is likely to be even less.” They call for a “stronger evidence base,” needed “to guide both policy and practice in end of life care.” Publication of the review, according the Sleeman and Collis, should be used as a “catalyst to improve end of life care, through research, education, and investment in infrastructure.”
What factors are important when caring for a dying patient?
Although the pathway is to be phased out, the symptoms that need to be managed in dying patients remain the same. Advice is available on how to care for a dying patient as a junior doctor in a Student BMJ article, a BMJ podcast (http://bit.ly/1euzQd3), and an editorial in the BMJ, which outlines 10 elements for the care of a dying patient based on national and international evidence (see box ):
10 Elements for care of a dying patient
- Recognition that the patient is dying
- Communication with the patient (where possible) and always with family and loved ones
- Spiritual care
- Anticipatory prescribing for symptoms of pain, respiratory tract secretions, agitation, nausea and vomiting, dyspnoea
- Review of clinical interventions should be in the patient’s best interests
- Hydration review, including the need for commencement or cessation
- Nutritional review, including commencement or cessation
- Full discussion of the care plan with the patient and relative or carer
- Regular reassessment of the patient
- Dignified and respectful care after death
Plenty of opportunities exist to learn more about end of life care in your clinical years. Sleeman, in correspondence with the Student BMJ, encourages students to talk to patients: “As a student you have the benefit of time to talk to patients and their families, to listen to them, and to learn from them. Use this opportunity. Ask open questions (‘what’s the worst thing for you right now?’), and report back to your firm—they will be grateful for your input. Ask your registrar or consultant if you can be present when sensitive conversations about prognosis and dying take place. Reflect on these—what was good? What might you do differently? Introduce yourself to the palliative care team; see if you can join a palliative care ward round or MDT. Find out if there are any additional learning opportunities available—for example, a special study module or a hospice attachment.”
Sleeman also thinks that students should “understand that caring for patients who die is a key part of the responsibilities of a junior doctor, and that for each dying patient there is only one chance to get it ‘right’.” She also says that it is important that graduates are aware of their limitations. “F1s [foundation year 1s] are not expected to have all of the knowledge and skills required to provide good end of life care. But it is essential that juniors know where to go for help: the ward nurses, the palliative care team (including on call), and ward pharmacist can all be invaluable sources of information and support.”
Good end of life care must be holistic—the patient must be assessed for their social, spiritual, and psychological needs as well as their physical ones. Ultimately, says Sleeman, you have to listen to what your patient is telling you. “If you do this, the rest will fall into place.”
From birth to death: a timeline of the LCP
The Marie Curie Hospice in Liverpool collaborates with John Ellershaw at the Royal Liverpool University Hospital to develop the LCP for the care of terminally ill patients.
The LCP is recommended by NICE for use in the palliative care of patients with cancer.
The LCP is adopted into the Swiss national framework for palliative care. It has subsequently been used in 20 other countries across the globe.
The LCP becomes a model of best practice and is recommended for use in end of life care by the Department of Health.
Daily Mail publishes the first in a long line of critical articles on the LCP.
Daily Telegraph publishes a letter signed by six experts who describe the LCP as a, “tick-box approach to the management of death [that] is causing a national crisis in care.” They claim that, “syringe drivers are being used to give continuous terminal sedation.”
Version 12 of the pathway is published with a message saying that the LCP is only as good as the doctors who use it, and that it does not recommend the use of continuous, deep sedation.
The media debate intensifies as Patrick Pullicino, professor of neuroscience and the University of Kent, describes the LCP as an “assisted death pathway,” saying that a patient who had been given just hours to live went of to make a full recovery, after he removed him from the pathway.
A story in the Daily Telegraph claims that hospitals have been rewarded with over £12m for adopting the LCP.
The UK government orders an independent review investigating the use of the LCP after the alarming stories in the media
Baroness Neuberger, a senior rabbi and former chief executive of the King’s Fund, who previously endorsed the LCP, is appointed to chair a review of the LCP.
Neuberger presents her findings, calling for more training for doctors in end of life care, and more staff and resources out of hours. She finds that the LCP has become a tick box exercise, and declares that the term “Liverpool care pathway” has become extremely unhelpful and so should be abolished. Neuberger concludes that the LCP is not always applied properly, and should be replaced with an individualised end of life care plan.
1 Martin D. Euthanasia by the back door: hospitals “death pathway” is open to error. Daily Mail 4 Sept 2009. www.dailymail.co.uk/health/article-1210848/Terminally-ill-care-scheme-death-pathway-warn-experts.html.
2 Millard PH, Cole A, Hargreaves P, Hill D, Negus E, Salisbury. Dying patients. Daily Telegraph 3 Sept 2009. www.telegraph.co.uk/comment/letters/6133157/Dying-patients.html.
3 Marie Curie Palliative Care Institute. The Liverpool care pathway for the dying patient (LCP) core documentation. 2009. http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/updatedlcppdfs/LCP_V12_Core_Documentation_FINAL_(Example).pdf.
4 Doughty S. Top doctor’s chilling claim: The NHS kills off 130 000 elderly patients every year. Daily Mail 20 June 2012. www.dailymail.co.uk/news/article-2161869/Top-doctors-chilling-claim-The-NHS-kills-130-000-elderly-patients-year.html.
5 Bingham J. NHS millions for controversial care pathway. Daily Telegraph 2012, 31 Oct. www.telegraph.co.uk/health/healthnews/9644287/NHS-millions-for-controversial-care-pathway.html.
6 Independent Review of the Liverpool Care Pathway. More care, less pathway. 2013. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf.
Correspondence to: email@example.com
- Independent Review of the Liverpool Care Pathway. More care, less pathway: a review of the Liverpool care pathway. 2013. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf.
- Marie Curie Palliative Care Institute. The Liverpool care pathway for the dying patient (LCP) core documentation. 2009. http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/updatedlcppdfs/LCP_V12_Core_Documentation_FINAL_(Example).pdf.
- National End of Life Programme, Marie Curie Cancer Care, and the Marie Curie Palliative Care Institute Liverpool. Liverpool Care Pathway for the Dying Patient (LCP) FAQ. 2012.http://www.mariecurie.org.uk/Documents/HEALTHCARE-PROFESSIONALS/Innovation/Liverpool-Care-Pathway_FAQ-23-August-2012.pdf.
- Sleeman K E, Collis E. The Liverpool care pathway: a cautionary tale. BMJ 2013;347:f4779.
- Sleeman K E, Collis E. Caring for a dying patient. Student BMJ 2013:21:f322.
- Ellershaw J, Dewar S, Murphy D. Achieving a good death for all. BMJ 2010;341:c4861.
Cite this as: Student BMJ 2013;21:f5106