On March 5th 2013, Mr RG, who had dementia, died after food, water and oxygen were taken away when he was put on the widely criticised Liverpool Care Pathway (LCP) in a reputed English hospital. His grieving daughter described her father’s end as ‘barbaric’ treatment even worse than a dog. The family were left traumatised after they watched the 69-year-old slowly deteriorate for eight days before he eventually died. They say they had not given consent for him to be placed on the controversial pathway.
Sadly, this is the usual scenario we encounter fairly commonly in our national newspapers. What we forget during all this is that death and dying remains the only true fact of life; a profound mystery that has remained unravelled for centuries. Death will eventually come to all of us, yet every death is unique in its experience, which is barely accessible or known to researchers, philosophers, physicians and sometimes family.
We cannot govern death but we surely have influence over how and where we die. Providing humane tender loving care for the dying is considered not only a social obligation but also a barometer of the patient quality experience across our organisations. But in reality, both society and the individual often fall short of what is considered appropriate care for the dying.
Since the mid 1990s there has been a heightened awareness of inadequacy in the end of life care support, poor knowledge of patients’ wishes and inappropriateness of medical treatment at a time especially when our patients lose the capacity to make informed decisions.1,2 A ‘humane care system’ is a system that allows people to place their trust in the medical service that also envisages serving their patients well when they are dying. This holistic humane system honours, protects and helps those who are dying to preserve their integrity while coping with the unavoidable physical pain, distress and loss.
The western population is ageing. Life expectancy expectedly increasing, to which the medical capability to prolong life, a fall in the frequency of unexpected and sudden death contributes substantially.3 As a result, chronic diseases such as cancer, strokes and dementia have become more common. Until recently, past communications between the physician and the dying patient about end of life choices occurred infrequently. When it did happened there were many shortcomings in those conversations as highlighted by some studies.4 The medical uncertainties and ethical dilemma faced by physicians in disclosing prognosis and expected future outcome during chronic progressive illnesses has corroded doctors’ confidence in dealing with the end of life care delivery for decades.5,6
Christakis in his book ‘Death foretold’ discussed the dilemma and difficulty doctors experienced in dealing with the prognosis in terminal stages of a condition. He went on to write about the ‘ritualisation of optimism’ that can mislead physicians and patients to make choices that potentially can be harmful to the patient or their families. The worst it could lead to is too much optimism during the end of life giving false hope to patients; they may never see the end coming, remain unprepared and could fight in vain.7
The twenty first century has brought with it newer realities with continuing challenges but a greater opportunity in the care for our patients at the end of life. Developments in medical sciences undoubtedly envisage delivering a better medical care to prevent and to relieve distress for those approaching the terminal stages of their illnesses.
Factors such as demographic pattern, socio-economic status, religious belief and other trends have put considerable pressure on the medical delivery system to ration resources that collides with what compassion towards the sick and dying should grant. Unfortunately, initiatives to improve satisfaction with end of life care remains obscured by our nascent understanding of what quality care means to patients and their families, and how it is best measured.8,9 Over the past decade, several initiatives have been established in an attempt to improve end of life care.10,11
Liverpool Care Pathway
In the UK, the Liverpool Care Pathway for the Dying Patient (LCP) was developed to translate the ‘hospice care practice’ experience into other healthcare settings.12 During the 1960s hospices were established in the UK to look after dying cancer patients. It was aimed at managing the patient’s total pain, often caused not only by physical suffering, but also by psychosocial and spiritual problems.
In the seminar on ‘Pain’ (1962), it was thought the end of life could be a ‘moment of achievement’ for both the patient and their family, leaving them with good memories of death and thereby less grief to live with.13 Development of ‘palliative care’ has been one of the great success stories within the UK healthcare system. It evolved in the environment of a ‘dominating model of medical cure’ and has directly influenced the adjustment of the system towards a caring model.14
The LCP was an extraordinary multi-professional document that provided an evidence-based framework for end of life care.15 It aimed to help doctors and nurses achieve a high standard of care for patients dying in any care setting. It was used in acute hospital wards, hospices and care home settings when it was clear that the patient was in their last days of life. Up until recently the LCP use was broadly applied in various types of care settings in the UK, where it was shown to structure care and to facilitate audit.16 Various countries such as the Netherlands have adopted the model into their palliative system to deliver a widely accepted gold standard of palliative care.17, 18
Recently the LCP as a tool has drawn many critics both from the medical and political fraternities. There has been a series of vitriolic attacks on the overall use, purpose and appropriateness of this dying pathway in the UK tabloid media.
On the 13th July an independent review led by Baroness Julia Neuberger recommended that the Liverpool Care Pathway should be phased out and replaced by individual end of life care plans.19 The review was commissioned by Care and Support Minister Norman Lamb in January 2013, because of serious concerns arising from newspaper reports that patients were wrongly being denied nutrition and hydration on the Pathway. Reports have suggested that doctors have been establishing ‘death lists’ of patients to be put on the LCP. Articles have also claimed hospitals might be employing the method to cut ‘costs and save bed spaces’.20 Medics on the other hand have argued that the pathway has ‘transformed’ end of life care, claiming it can offer peaceful, pain-free deaths when used properly.21
Each year in the UK around 130,000 patients are placed on the pathway. The national audit by the Marie Curie Palliative Care Institute Liverpool and the Royal College of Physicians examined a representative sample of 7,058 deaths, which occurred between April and June 2012, at 178 NHS hospitals.22 The national audit found:
- In 44% of cases when conscious patients were placed on the pathway, there was no record that the decision had been discussed with them
- For 22% of patients on the pathway, there was no evidence that comfort and safety had been maintained while medication was administered
- One in three families of the dying never received a leaflet they should have been given to explain the process.
Contrary to the argument above, in March 2013 a BMJ and Channel 4 Dispatches programme published the results of an online survey of the view of 563 doctors. The survey to which the doctors responded anonymously found strong support for the pathway. It showed 89% of UK palliative medicine consultants think the LCP still represents the best practice for the care of dying patients; the same number said they would choose it for themselves. Over 97% thought that the pathway enables people to die with dignity when implemented correctly. The survey raised widespread concern that criticism of the LCP in the media had led to less use of the pathway, with half saying patients and relatives had asked them not to use it.24
Capricious decisions to start the LCP as reported in some newspapers involving doctors who were ill equipped to make such decisions have led to disaster after disaster. We took the LCP as a tool very casually and forgot the basic ethos of medical care that every decision must be based on carefully balancing the benefits versus burdens to the patient of anything we do. Medical personal with little or no experience have failed to recognise when someone is close to dying especially during the last stages of any chronic illness where the patient often is unable to eat or drink and can be less responsive. In the majority of cases this represents a natural process of decline. For some patients, providing fluids may add comfort; in others, it often makes the situation worse.
During all these discussions we have repeatedly failed to acknowledge that ‘dying’ can’t be taken as a mere ceasing of one’s biological functions—it is also the loss of a person, a subject in their own right, with an unravelling complex network of relationships and social connections that is lost as a whole.
Death is a prospect that humans are always going to struggle with. If we as a society become too idealistic about our ability to manage and control the experience of death that will have repercussions for those approaching the end of their lives. This inevitability of death and these blurred fringes of palliative care do not in any way absolve the responsibility of physicians to ensure the comfort, wellbeing and dignity of each individual at the end of their life. End of life care can never be perfected; it is in fact an area of palliative care fraught with great complexities and a greater ethical dilemma. Just as the introduction of the LCP did not instantaneously solve all the problems surrounding end of life care in hospital settings, nor will its abrogation. The LCP has reached its precipice and has fallen to a depth from where it cannot rise.
Sadly we physicians have to take most of the blame. Society entrusted physicians with this great power to care and cure our infirm. With such great power also comes a greater responsibility. These recent criticisms are because of our inept handling of a brilliant tool. The demise of the LCP has left a void that will have a lasting pernicious effect on the delivery of end of life medical and palliative care in the UK. In this somber moment there remains little doubt that the LCP has lost the PR battle and needs a new face, a new name and a new beginning.
Conflict of interest: none declared
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