After almost a year of negative publicity and little in the press to defend its good intentions, the Liverpool Care Pathway is now gradually being phased out.
This model of care for patients in their last hours or days of life was analysed by a government commissioned review. It concluded that although the pathway itself is a model of good practice, it has not been applied properly in too many cases1.
While some members of the public may be cheering its departure, it has left many questions for health care professionals, in particular, what went wrong, and what next? JuniorDr’s Laura James attempts to provide the answers.
What is the Liverpool Care Pathway (LCP)?
The LCP was established in the late 1990s and was designed to incorporate the hospices model of care into hospital and community care settings. At the time it was felt that some hospices were providing excellent end of life care, where as hospitals had tended not to meet the same high standards.2
The LCP was recommended as a model of good practice for patients in the last days or hours of life by a number of national policy frameworks including the General Medical Council and the NICE quality standard. Its name was derived from where it was designed – the Royal Liverpool University Hospital. It was created in conjunction with the Marie Curie Palliative Care Institute.
The main principles of the LCP include:
• Accommodating the person’s individual needs considering their physical, social, spiritual and psychological needs
• Requiring senior clinical decision making, good communication, a management plan and regular assessment
• Is not a treatment but a framework for good practice
• Aiming to support but not replace clinical judgement
• A focus on care in the last days or hours of life, when death is expected
• Good communication, care and compassion must come from all staff for the patient and their family3
Media attention
In late 2012 and early 2013 there was a flood of negative newspaper headlines surrounding patient and family experiences with the Liverpool care pathway which raised much public concern,misunderstanding and criticism about the incentives of the LCP.
Headlines in national newspapers included:
“I survived the death pathway…” The Daily Mail October 20124
“Family ‘not told’ grandmother was put on Liverpool Care Pathway” The Telegraph July 20135
“Family say dying man on Liverpool Care Pathway was denied drink” The Times November 20126
One common misunderstanding was that patients who were not dying were purposefully placed on the LCP as the hospital would receive money for it.7 In fact, the financial gain was to encourage medical staff to follow the LCP when patients were imminently dying, as it what was designed to be the gold standard for end of life care.2
It was also believed that patients would be cruelly refused food and drink to speed up the dying process – another misunderstanding. The LCP was meant to neither prolong nor shorten life and states that there is no “blanket policy” for giving or withholding nutrition and hydration but is decided on an “individual case basis”.8 This could and perhaps did lead to a wide variation of interpretation.
Professor Irene Higginson, Professor of Palliative Care at Kings College London, was interviewed in an audio module with BMJ Learning regarding the Liverpool Care Pathway and said:
“It is fair to say that the early versions of the LCP before this one did take a more restrictive view and did talk about stopping food and fluids … the ideal is that the patient is supported by taking fluids by the mouth for as long as possible, but in many instances, although artificial hydration is not needed, in some instances it is and I do think that this is an important clinical judgement … If you put in too much fluid and they don’t need it because they’re not dehydrated you could fill up the lungs with fluid, you could hasten death.”9
Families of dying patients were also concerned that their relatives were being given a large amount of sedatives and pain killers that would make them drowsy and do more harm than good.
In some cases it was not clear if the drugs were even needed. The commissioned review of the LCP stated, “It seems that at least some of the distress experienced could have been mitigated by better communication.”1
The review
The national newspaper headlines could not be ignored, and in January 2013 a review of the LCP was commissioned by Norman Lamb, Care and Support Minister. The independent review was carried out by a panel, which was chaired by a Senior Rabbi at the West London Synagogue and crossbench peer, Baroness Neuberger.
The panel met members of the public who had experiences of the LCP, they looked at surveys, academic literature and written submissions from health care professionals.
The review raised concerns that the LCP was being used as a protocol rather than a guideline and the tick box nature of the LCP documentation was leading to poor decision making. Rabbi Neuberger advised more funding to “ensure that guidance on care for the dying is properly understood and acted upon, and tick-box exercises are confined to the waste paper basket for ever”.
There is also strong mention that the term “Liverpool Care Pathway” is most unhelpful, with one interpretation of it being “a conveyer belt to death”. The term “end of life care plan” was thought to better convey its meaning.
Communication was felt to be an issue. The panel said that there was “shocking unwillingness” amongst clinicians to discuss the prospect of death with patients and their families and carers. It was reported that, “Placing patients on the LCP can lead to considerable distress in relatives or carers when the patient does not die with hours or days, or recovers. Doctors and nurses must communicate with patients and relatives far more honestly about these clinical uncertainties”.
But they also wrote, “No matter how much effort is put into training clinicians in good communication skills, unless everyone in society – members of the public, the press, clinicians, public figures – is prepared to talk openly and honestly about dying, death and bereavement, accepting these as a normal part of life, the quality of care and the range of services for the dying, their relatives and carers will remain inconsistent.”1
Junior doctors
The panel noted that junior doctors were making decisions that were beyond their expertise. For example, titrating opiate pain killers, sedatives and anti-secretory drugs which they were sometimes getting wrong. The panel said that juniors told them they wanted more training and support from the palliative care team and assistance with titrating drugs to the correct therapeutic response.
It was also highlighted at the BMA junior doctors forum in May this year that junior doctors are often at the forefront of providing end of life care and therefore should have better training in it.10
There is growing evidence to support this conclusion. In a 2013 paper in the Royal College of Physicians of Edinburgh, Foundation Year 1 (FY1) doctors and supervising consultants were sent questionnaires to ask if newly qualified doctors were prepared to deliver end-of-life care. Results showed that FY1 doctors did not feel or appear prepared, particularly when it came to managing distress and social issues, with a high proportion of them reporting distress themselves.11
The review panel said, “We heard from junior doctors that, whilst they may have had some training or exposure to palliative care at medical school, once qualified, they felt their training had not fully prepared them for the task of looking after dying patients.”1
What happens next
The LCP will be phased out over the next 6–12 months and replaced with individualised end of life care plans, taking into consideration the issues raised from the report. Guidance will be given for different disease groups and the plans will require sign off by senior clinicians. Any financial gain for using an end of life pathway will be stopped.12
Response
Before the plans had been put in place to phase out the LCP, doctors had backed its use with 90% of palliative care doctors saying that they would have a preference for the LCP at the end of their own life.13
However, doctors had also mentioned the need for further training in the area, particularly in good communication and safeguarding systems to ensure its good use.14 This argument still holds for end of life care in the future as well as other issues such as funding.
Professor Irene Higginson said in response to the review:
“With the number of deaths expected to rise by 17 per cent over the next 20 years, there has never been a more important time to consider how we are going to cope with this increase in demand for palliative care … We already know there are inequities for patients and families.”
“Expenditure on palliative care services is inconsistent across England, with the average spend per person at end of life about £900 in total. However, some Primary Care Trusts spend as little as £186 per person.”15
There have also been a number of online petitions to try and reverse the decision to phase out the Liverpool Care Pathway with over 31,000 signatures on one. However there are no signs from the government to back this.
It is likely that over the next year some may find the change difficult. The attention the LCP has received has focused on improvement and we can hope that it will mean better end of life care in the future.
References
1. DOH. Review of Liverpool Care Pathway for dying patients. 2013. https://www.gov.uk/government/publications/review-of-liverpool-carepathway-for-dying-patients
2. NHS choices. What is the Liverpool care pathway. 2012. http://www.nhs.uk/news/2012/11November/Pages/What-is-the-Liverpool-Care-Pathway.aspx
3. Marie Curie Palliative Care Institute. LCP Model Pathway – UK Core documentation. 2012. http://www.sii-mcpcil.org.uk/media/10843/lcp%20core%20documentation.pdf
4. Stevens J. I survived the death pathway: Patricia, 82, was given two days to live, but her family defied doctors and gave her water through a straw - now she's planning a world cruise. 2012. http://www.dailymail.co.uk/news/article-2223836/I-survived-deathpathway-Patricia-82-given-days-live-family-defied-doctors-gavewater-straw--shes-planning-world-cruise.html
5. Adams S. Family 'not told' grandmother was put on Liverpool Care Pathway. 2013. http://www.telegraph.co.uk/health/healthnews/9612091/Family-not-told-grandmother-was-put-on-Liverpool-Care-Pathway.html
6. Jenkins R. Family say dying man on Liverpool Care Pathway was denied drink. 2012. http://www.thetimes.co.uk/tto/health/news/article3593596.ece
7. Sturdy J. Liverpool Care Pathway: More than 10,000 patients placed on plan . 2013. http://www.bbc.co.uk/news/uk-england-21141281
8. LCP. Healthcare professional documenting the MDT decision. 2012. Page 2.
9. Prof. Higginson I. The Liverpool Care Pathway audio module. 2013. http://learning.bmj.com/learning/user/login.html
10. BMA. Call to improve care pathway traiing. 2013. http://bma.org.uk/news-views-analysis/news/2013/may/call-to-improve-care-pathwaytraining
11. Bowden J et al. Are newly qualified doctors prepared to provide supportive and end-of-life care? A ssurvey of Foundation Year 1 doctors and consultants. 2013. JR Coll Physicians Edinb 43:24-8
12. BMA. Personalised care to replace controversial end-of-life pathway. 2013. http://bma.org.uk/news-views-analysis/news/2013/july/personalised-care-to-replace-controversial-end-of-life-pathway
13. Kaffash J. 90% of specialists would put themselves on the Liverpool care pathway. 2013. http://www.pulsetoday.co.uk/clinical/therapyareas/elderly-care/90-of-specialists-would-put-themselves-onliverpool-care-pathway/20002098.article#.UgoJG0bv68g
14. BMA. Doctors overwhelmingly back end-of-life care pathway. 2013. http://bma.org.uk/news-views-analysis/news/2013/june/doctorsoverwhelmingly-back-end-of-life-care-pathway
15. Kings College London. Response to the LCP review from Kings palliative care experts. 2013. http://www.kcl.ac.uk/newsevents/news/newsrecords/2013/07-July/Response-to-the-LCP-review-from-
Kings-palliative-care-experts.aspx
