As their elderly mother lay dying, the family turned to me and begged, 'Please don't do that Liverpool thing to her.' How had it come to this, I wondered, that something developed with the best intentions to improve end-of-life care could be regarded with such fear?
The Liverpool Care Pathway (LCP),1 developed by the Royal Liverpool University Hospital and The Marie Curie Hospice in Liverpool, grew out of the hospice movement in the 1990s.
The aim was to spread good, skilled care in the last few days and hours of a patient's life into other healthcare settings, such as hospitals and care homes, where there was evidence to suggest end-of-life care was poor.
For example, an observational study in four Scottish hospitals in 1994 outlined a typical picture.2 While a small number of doctors and nurses were engaged with dying patients, most concentrated on their patients' diseases, rather than the people themselves.
As active medical intervention was scaled down and death was imminent, so most staff withdrew from the patient, abandoning end-of-life care to junior doctors or nursing assistants, who lacked the experience or maturity to cope with the burden of a dying person.
Symptoms were inadequately controlled, oral hygiene often neglected, thirst remained unquenched and psychosocial needs were ignored.
Looking after a dying patient is challenging. To do it well involves confronting human mortality and accepting death as a normal part of life and therefore as an important part of medical care (which cannot always be curative).
Complicated factors are at play, including the existential worries many of us have about death, a sense of failure (and, increasingly, fears of litigation for not doing enough), and the unhappiness we anticipate among those left behind.
The benefits of the LCP soon became apparent because it offered a simple framework tool that even the least experienced could follow to institute consistent care.
In the hectic, understaffed modern medical world, the LCP ensures the patient is never left for too long. Continuing assessments in four domains (physical, psychological, social and spiritual) every two hours mean symptoms are regularly considered.
The LCP also provides a schema for drugs to manage problems such as pain or terminal agitation. Unnecessary drugs should be stopped, but there is no hard and fast rule - the LCP is best used in an advisory, rather than a didactic, way and any treatments deemed of value can continue to be given. The focus is on comfort and symptom control.
The LCP was clear from the start that it is not an active step to end life. Although people die after an average of 29 hours on the pathway,3 the door is never closed to further intervention, and as a result of regular assessment, some patients are taken off the LCP because they improve. (The small number of patients I have seen taken off the LCP have all gone on to die within a few days.)
The LCP was initially well received and increasingly adopted, as studies began to outline its benefits, especially in symptom management.4 Without it and with ever-growing constraints on time and resources, symptom management might have declined further, with dying patients increasingly neglected (however unintentionally).
Recently, a number of studies have drawn attention to possible problems with the LCP.
According to a multicentre study in 2008, nurses and relatives thought that while the approach improved management of patients' symptoms, it did not significantly improve communication.5 Although the authors concluded that they 'consider LCP use beneficial for the care of dying patients and their family', this reference to communication was a portent of trouble ahead.
Perhaps the most important step in the pathway, the initial assessment to establish that the patient is dying, broaches a subject that will always be contentious.
Subtle understanding honed by experience helps the medical team to make this call once all reversible causes for the patient's conditions have been considered. However, without hard science or a simple diagnostic test to detect approaching death, there will always be room for uncertainty.
The uncertainty may diminish when death is imminent, but rarely can we be clear just how far away death is. For family and friends, without experience, it can be more difficult to understand that the patient is dying and this can put a gulf between them and the healthcare team.
The way forward is through better communication, which is emphasised strongly in the LCP, with time spent with the family explaining the situation and exploring their views and concerns.
An emerging evidence base supports proactive, multidisciplinary strategies such as formal and informal family meetings, daily team consensus procedures and ethics consultation to improve communication about end-of-life decisions.4
Other criticisms have included the paucity of clear advice about whether the dying patient should be offered hydration or given a drip.
Lack of oral intake is one of the things that particularly disturbs families. The need for fluid is such a basic human drive that even medical staff tend to feel troubled when someone has not taken fluid for days, and better guidance is needed regarding assisted hydration and the use of other interventions.
Research confirms my own experience that at the end of life, people may survive for many days without fluids and without significant discomfort, but this fact is little appreciated.
A survey of patients in Oregon hospice programmes found that as many as 15% of those who chose to discontinue food and fluids survived for more than two weeks, but reported a high degree of peace and comfort.6
Stopping medicines that the patient may have taken for years can also be unnerving. If patients or their family do not understand how their needs have changed, it is not surprising that this makes them feel as though care is being 'withdrawn'.
One of the central tenets of the LCP is a rolling programme of audit leading to continuing development. Version 12 emerged in 2009 from a two-year consultation process.
Although the ethos remains the same, this version focuses on improving clarity in certain key areas. It emphasises that the LCP does not preclude the use of artificial hydration, that it neither hastens nor postpones death, and that good communication is pivotal to its success.7
The pathway is only as good as the words used to explain it. Last year, a national audit by the Royal College of Physicians found that in 44% of cases, there was no record that the decision to start the LCP had been discussed with a conscious patient, and one in three families were not given printed information.8 Communication is clearly still not good enough.
Many authorities have stood by the LCP and it is advocated as a model of good practice in the last days and hours of life by successive national policy frameworks (2003 and 2006), the national end of life care strategy (2008), quality markers and measures for end of life care (2009), GMC guidance (2010) and the NICE quality standard for end of life care for adults (2011).
However, in response to public concern, the DH has launched a review of the LCP.3 Meanwhile, many trusts are directing staff to improve communication, especially on the decision that a patient is dying.
The government's intention to change the NHS Constitution to give patients and their families a legal right to be consulted on all decisions about end-of-life care would make it illegal to put anyone on the pathway without discussing it with them.
Hopefully the DH review will help to rehabilitate the LCP's image, but it might also help if society as a whole talked more about death.
- Dr Macnair is a specialty doctor in medicine for the elderly at Milford Hospital, Surrey Community Health
1. The Marie Curie Palliative Care Institute Liverpool. The Liverpool Care Pathway for the Dying Patient (LCP). www.liv.ac.uk/mcpcil/liverpool-care-pathway/
2. Mills M, Davies HTO, Macrae WA. BMJ 1994; 309: 583-6.
3. DH. Review of the Liverpool Care Pathway outlined. www.dh.gov.uk/health/2013/01/review-lcp/
4. Boyle DK, Miller PA, Forbes-Thompson SA. Crit Care Nurse Q 2005; 28(4): 302-16.
5. Veerbeek L, van Zuylen L, Swart SJ et al. Palliat Med 2008; 22(2): 145-51.
6. Ganzini L, Goy ER, Miller LL et al. N Engl J Med 2003; 349(4): 359-65.
7. The Marie Curie Palliative Care Institute Liverpool. What is the Liverpool Care Pathway for the dying patient?
8. The Marie Curie Palliative Care Institute Liverpool, Royal College of Physicians. National Care of the Dying Audit - Hospitals (NCDAH). Round 3. Executive Summary. 2011/2012. www.rcplondon.ac.uk/sites/default/files/ national_care_of_the_dying_audit_-_hospi tals_exec_summary.pdf.