The birth and death of the Liverpool care pathway
BMJ 2013; 347 doi: https://doi.org/10.1136/bmj.f4669 (Published 24 July 2013) Cite this as: BMJ 2013;347:f4669
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Isabel Smith asked " anyone who honestly thinks they know of a better guide for staff and their trainers than the steps set out in the LCP? Tell us, please. ".
If we are referring to LCP v.11, the answer appears to be an approach with 'Consent' as the first step, combined with an impartially and competently administered test of capacity to give that consent. Plus, of course, honesty about the real risks of administering morphine, midazolam and cyclizine in the same Graseby syringe. Some people want to experience their own deaths, regardless of how inconvenient that might be for the staff responsible for basic nursing care.
I don't see Cicely Saunders would have condoned any approach that did not involve asking the patient whether they want palliative care treatment before she initiated it - in many ways, it's a great shame her name has been associated with it, along with Marie Curie's.
Competing interests: No competing interests
The Neuberger report recommends that “the use of the Liverpool Care Pathway should be replaced within the next six to 12 months by an end of life care plan for each patient, backed up by condition-specific good practice” [1]. However, the Liverpool Care Pathway (LCP) was based on “good practice” within hospices [2], and any replacement will not be evidence-based (and probably not even tested within the designated time period). Moreover, many centres have already abandoned the LCP [3], which is creating a potential vacuum of care for patients at the end-of-life (not dissimilar to the situation prior to the development of the LCP) [2].
In 2009, Edmonds et al commented that “The Liverpool care pathway may lead to poor care because tools are only effective as the peoples using them” [4]. Our experience echoed the comments of Edmonds et al, and so two years ago our specialist palliative care team began to routinely review all patients on the LCP: all patients that are commenced on the LCP within the trust are referred to the specialist palliative care team (SPCT), and they are reviewed on the day of referral, and then at least every other day (depending on the clinical situation). In 2012, we reviewed 158 “new” (to the SPCT) patients that had been started on the LCP; these patients represented 17% deaths within the trust, and 24% patients reviewed by the SPCT.
In total, the SPCT undertook 415 consultations with these patients (median 2 visits; range 1 to 13 visits). In 32 (20%) cases, the SPCT did not intervene in the care of the patient; in the remaining cases, the SPCT made a variety of recommendations and / or alterations to management, including discontinuation of concurrent treatment (n = 26), initiation of a continuous subcutaneous infusion of drugs (n = 50), alteration of a continuous subcutaneous infusion (n = 37), use of non-standard pharmacological interventions (n = 15), use of non-pharmacological interventions (n = 33), and initiation / discontinuation of clinically-assisted hydration or nutrition (n = 8). A total of 17 patients were taken off the LCP (although 4 patients were put back on the LCP at a later date). Five of the patients that were taken off the LCP were discharged from hospital, and the remainder died in hospital after a median of 10 days (range 1 – 26 days).
We have not rigorously assessed the impact of this service, but the informal feedback from healthcare professionals has been universally positive; they have felt more confident using the LCP, and indeed more confident managing patients at the end-of-life. Equally, the informal feedback from carers has been universally positive (and there have been no formal complaints relating to patients on the LCP in the two years of the initiative); they feel reassured by the presence of the SPCT, who they see as “experts” in end-of-life care. Our own reflections are that end-of-life care has significantly improved within the trust, and that the initiative has not had deleterious effect on the other aspects of our service.
The LCP has several faults, but it seems to us that a more rational approach would be to amend the tool (rather than abandon the tool). Indeed, Neuberger et al acknowledged that “when the LCP is used properly, patients die a peaceful and dignified death” [1]. We would suggest that our model of care could overcome many of the issues relating to the LCP, and would prevent the development of a vacuum of care for patients at the end of life (whilst a new, evidence-based, national end-of-life care plan is developed). Furthermore, our model of care could be immediately rolled out in most hospitals within the United Kingdom.
It’s not too late to save the baby!
References:
[1]. Neuberger J. More care, less pathway: a review of the Liverpool care pathway. 2013.
https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil...
Liverpool_Care_Pathway.pdf.
[2]. Ellershaw J, Wilkinson S. Care of the dying: a pathway to excellence. Oxford: Oxford University Press; 2003.
[3]. Anonymous. Trusts instigate immediate bans on care pathway. Nurs Stand 2013; 27: 6.
[4]. Edmonds P, Burman R, Prentice W. End of life care in the acute hospital setting. BMJ 2009; 339: 1269-70.
Competing interests: No competing interests
Congratulations to Krishna Chinthapalli on his defence of the Liverpool Care Pathway (LCP) and to John Ellershaw and Mayur Lakhani’s for their call to “take courage” in pursuit of hospice-style care for all dying patients (BMJ 27th July 2013).
In 1958 a pharmacology research group provided what would now be called work experience for a medical student. At the same time a desk, telephone and filing cabinet was provided for a tall, well dressed woman whom everyone referred to, in rather hushed tones, as Cicely. Tea and conversation was a daily ritual in the department but on Wednesdays this became a grander affair; cake was served, mugs were replaced by cups and saucers and Cicely came to tea.
I learned that Cicely had recently qualified as a doctor and that her mission was to promote a better way of death in hospital. She considered that doctors were generally bad at anticipating and managing death and that this blind spot caused much unnecessary suffering. Also that it was perfectly possible to recognise when recovery was unlikely and a patient was near death. She reasoned that medicine had all the necessary drugs, procedures and skills to ensure a peaceful end for everyone. She considered that the clinical team was responsible for identifying an approaching death and that the management of events should be given to trained nursing staff, to include communications with patient and relatives, personal care and administration of drugs. Doctors would act in support not manage the process.
Back then the Brompton Mixture, a combination of heroin and alcohol, and anti-emetics were a mainstay of the nursing regime alongside all those essential and time-consuming procedures (almost unknown to doctors then as now and maybe lost even to nurses) needed to keep a very ill person clean, comfortable, dignified and peaceful. She was in no doubt that death might be hastened by implementing an effective drug regimen. It did not offend her strongly held Christian faith to acknowledge this fact. I had no idea how unusual she was or how influential and honoured she would become. Most of the hospital staff welcomed her; a few called her “the angel of death” without quite getting the point that an angel who helps us die well is an angel indeed.
Cicely (yes her surname was Saunders) many years later gave her approval to the work on the LCP which echoes so much of her approach. Scandal or no scandal I doubt she would have approved of dumping the pathway with pious words about “individual care plans” and unworthy tabloid-style remarks such as “tick box exercises being confined to the waste paper basket forever”. Didn’t the review panel know that there is good evidence that “tick box exercises” reduce errors in operating theatres and improve care in other spheres?
Cicely’s calm, matter of fact view of death has somehow been lost in a self important maelstrom of what looks very much like foolishness. It certainly is a “cautionary tale” (Editorial BMJ 10th August 2013) but who honestly thinks they know a better guide for staff and their trainers than the steps set out in the LCP? Tell us, please.
Competing interests: No competing interests
In my experience as a higher trainee in Old Age Psychiatry, with a keen interest in palliative care, and how we provide this to both hospital in-patients and community patients, I have recently been exploring the way that we implement and view end of life care for our patients. Locally, I have examined how end of life care is provided to patients with dementia on mental health wards, and what is our experience, as higher trainees, by the time we reach higher training in Old Age psychiatry. I have also spent time with our local Specialist Palliative Care team, both in the acute hospital, and the Macmillan team within the community.
A brief survey amongst my colleagues demonstrates that we have limited knowledge of the use and implementation of the Liverpool Care Pathway and local end of life care pathways for our patients. The experience that we have tends to be from our Foundation years, or GP placements. Trainees admit that knowing when to initiate end of life care for patients can be difficult, which can then have an impact upon patient care, and the way that we communicate with families and carers. Surveyed trainees also admitted to limited knowledge of local resources.
A small audit into end of life care for patients with dementia on mental health in-patient units demonstrates non-uniform use of the Liverpool Care Pathway, or local end of life care pathways, however, there is good documentation of honest, open conversations with family members and carers. Such conversations document consideration of (some aspects of) advance care planning, and the complexities of the unpredictability of end of life care, and the prognostic course of the dying patient, in particular for those patients with dementia. This audit seems to demonstrate that having such conversations seems to facilitate families’ experience of their dying relative.
As Dr. Chinthapalli notes that this most recent report ‘underlines the lack of evidence and says we need more research of the experience of care amongst patients, carers and relatives. It says that we shouldn’t respond to the report by treating patients as though they could always be cured and that the public and media must accept that death is a normal part of life’. I would advocate that in my experience as above, communication with patients and their loved ones is likely to be key in improving the way that we deliver end of life care. Further research is likely to help to establish the best way to deliver end of life care, and how best to have conversations about this.
I would advocate that we as trainees, alongside nursing staff have further training into the provision of end of life care, the practicalities and implementation of this, and the communication that is required with patients, families and carers as this is most likely to improve the experience of end of life care for all. The Liverpool Care Pathway does provide ‘valuable guidance on managing dying patients’ for trainees, although such guidance needs to be used with open and honest communication, to make the difficult dying process easier for all involved.
Many thanks to Dr. JS Bamrah for his guidance and support with my palliative care interests, in particular the audit mentioned, over the last few months.
Competing interests: No competing interests
It is a tragedy that sensational media reporting and in a few cases, poor implementation of the Liverpool Care Pathway, due perhaps to poor education or communication, has led to its abandonment. It was at least an attempt to put hospice care into practice in general hospitals. In the 1970s I was involved in starting and running a small Hospice unit, but decided in the end that the greatest need was to apply Hospice principles of care in the NHS, so I went back into general medicine and eventually Geriatrics.
In the 1980s and 90s my teams of nurses and I achieved good palliative and terminal care of our elderly patients on the general wards of our smaller community hospitals, most of these patients having non-malignant conditions. It can be done, with teams who work together and understand the principles.
Now that I myself have got relapsed incurable multiple myeloma at the age of 70, I have a keen personal interest in palliative care. I do not in fact want to die at home, as it would be too great a strain for my very elderly husband, and we have no spare room for a night nurse. I have no other close relatives. I would be happy to be cared for in a good local Nursing Home by my own General Practitioner. It's worth pointing out that if 63% of people say they would prefer to die at home, then 37% would not - a large number. Our local Hospice and our DGH are both 30 miles away, and my husband does not drive. I feel it is vital to treat each dying patient as an individual, and my only reservation about any sort of "pathway" is that it can lead to box ticking and an unthinking, blanket approach. It takes more effort to find out what each person wants, but it is far better medicine.
We only get one chance to get it right for each dying person we care for. It is vital that we do so. The Liverpool Care Pathway was a very good attempt to achieve this. It behoves those concerned to try again, and not to give up. After all, we will all die.
Competing interests: I have incurable cancer.
Re: The birth and death of the Liverpool care pathway
RE: Andrew Davies comment 'However, the Liverpool Care Pathway (LCP) was based on “good practice” within hospices'.
Which LCP are we referring to? LCP v.11 recommended Diamorphine + Cyclizine in all patients for 5 years until the renal prescribing guidelines were published in 2008...which must have resulted in a huge number of ghastly and highly distressing deaths for any patient suffering from renal failure or dehydration.
What is more horrific than subjecting someone who is dying to the horrors of delirium and hallucinations - or even risking the chance they will?
Condition-specific guidelines should have been in place from the outset - it was a woeful omission, and must have caused immense distress to the bereaved relatives who had been assured their loved ones had 'a good death'. Many of the people who have witnessed the horrors of a 'bad death' have been traumatised for life afterwards - witnessing the effects of iatrogenic hyperalgesia and delirium can be far worse than experiencing a death from natural causes.
Competing interests: No competing interests