The Liverpool Care Pathway for the Dying Patient
We live in a moral universe. Both the Bible and our experience exegete that simple statement. In other words, right and wrong coexist, while good and bad touch every human enterprise. That is why we devise laws, rules and guidelines to restrain the negative and augment the positive. Medical endeavour is no exception.
origins of good medicine
The early practitioners of medicine were hemmed in by a combination of the Hippocratic Oath and the Judaeo-Christian doctrines. Their abiding principles of ‘First, do no harm’ and ‘Love your neighbour as yourself’ provided first, a powerful restraint, namely, things forbidden (including, abortion and euthanasia) and second, a positive motivation, namely, things encouraged (such as, truth and compassion).
It was these heavy-duty bioethical foundations that kept medicine largely safe and wholesome for twenty centuries and created a ‘culture of life’. Nevertheless, natural death was well understood and accepted as inevitable. But unnatural death was something else – it was anathema. Any doctor who caused it was a renegade. Deliberately killing patients was never a part of proper Hippocratic-Christian medicine.
origins of bad medicine
Two millennia later, modern medicine is a much more fragile undertaking. Its ethics are feeble rather than robust, and its practices are utilitarian rather than principled. Within the last two generations, the unthinkable has become the acceptable. The ethics of abortion, infanticide and euthanasia are endorsed widely and practised worldwide – obstetrics and gynaecology, paediatrics and geriatrics have been corrupted. Instead of a high view of human life, derived from the Hippocratic-Christian principles, secular humanism has delivered us a low view of human life. In short, we now live in a ‘culture of death’.
Bad medicine has permeated our societies. Of course, not all medicine has become corrupted and tainted, but this ‘culture of death’ is the warp and weft of much of modern medicine and it has affected and infected all of us. Thankfully, good medicine still exists, decent doctors still toil and compassionate nurses still care. But our world has become harsher and less tolerant. We have asked the medical profession to deal with the unwanted, inconvenient and costly. The unborn have long been the target of bad medicine. How else can you explain the 42 million abortions now performed globally each year? Now bad medicine has turned to the other end of the age spectrum. The elderly, who are unwanted, inconvenient and costly, are the new targets of assisted suicide and euthanasia.
Palliative care and the hospice movement
Yet out of such social bleakness, good medicine has triumphed with the introduction of palliative care and the hospice movement – the welcome antidote to calls for the legalisation of practices that deliberately cause premature death. Palliative care, one of the fastest growing medical specialities, seeks to meet the physical, mental and spiritual needs of the dying and provide a good and comfortable death for the patient and the relatives. It is what we all want.
Palliative care can control the greater part of pain and other adverse symptoms. But it is not perfect. It is performed better in hospices than in hospitals than in homes. It should be extended to more non-cancer patients. It ought to be more widely available. The dying need better care and more resources. One positive response to these growing demands has been the formulation of structured care schemes to replace the more haphazard nursing efforts of the past. One such scheme is the so-called LCP, see http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/.
The Liverpool Care Pathway (LCP)
The LCP was devised in the 1990s by the Royal Liverpool University Hospital and the city’s Marie Curie hospice. Its principal aim is to improve and provide the best medical and palliative care for the dying during their last days and hours.
This aim is achieved by coordinating the care process. In other words, there is ongoing documenting, monitoring and evaluating of the activities of the care team in terms of the effectiveness of outcomes and then the provision of the appropriate resources. These assessments are used to determine the palliative care options and to consider whether non-essential treatments and medications should be discontinued. The LCP is therefore not a ‘one-size fits all’ protocol, nor is it ‘one-way street’ because patients on it are individually assessed and taken off it if they show signs of improvement. Another key feature of the LCP is the enhancement of communication between the medical team, the patient and the family members. This may all sound like so much medical gobbledegook, but in reality it describes good palliative care – the sort we all hope for. It resonates well with that aphorism of Cicely Saunders, the founder of the hospice movement, that ‘the last days must not be lost days.’
The LCP has been generally accepted. From 2001, it has been recognised as a best practice model by the National Health Service and it has since been approved by numerous authorities, including the National Institute for Health and Clinical Excellence (NICE) and the Department of Health. It is currently used by 85% of Primary Care Trusts and experienced by about 130,000 of the 450,000 patients who die each year in the UK.
Care pathways are nothing new. Formalised editions occur in other medical contexts to improve decision making and the organisation of care for particular groups of patients. And pathways of a more informal nature have always existed in the heads of good doctors as they have sought the best for their patients. Nor are care pathways static. While the ethos of the LCP has remained constant, its practical details have been frequently modified – the current model is generic version 12, and some Trusts have devised and incorporated their own amendments.
The LCP under attack
So why has the LCP proved to be so controversial? Recent commentators have referred to it as 'a half-baked compromise' and 'the death pathway' and its use as 'lethal medical arrogance'. Relatives have claimed that their loved ones have been put on the LCP, whether they are dying or not, without their consent, and then been subjected to withdrawal of food, fluids and medical treatment thereby dehydrating and starving them to death. In addition, allegations have been made that some Trusts have received financial incentives for meeting targets by using the LCP to hasten deaths and clear out bed blockers.
Consider just one horror story, widely reported in the media. An 85-year-old woman was admitted to hospital with an infected gall bladder. The next day, doctors, including three consultants, told her daughter that her mother was about to die and pressed her to sign her mother onto the LCP. Her mother, deprived of fluids and treatment, became disorientated, agitated and distressed. The daughter took matters into her own hands and fed her mother yogurt, other soft foods and water. This continued until three days later when the patient was discharged, restored to health, cracking jokes and bidding farewell to those left behind. The daughter stated, ‘A year has since passed. My mother has a robust appetite and has never succumbed to the “impending doom” I was led to believe she could not escape.’
Reports suggesting that 130,000 UK patients die while on the LCP each year have been maliciously employed to create chilling headlines. Such sub-standard journalism has invoked a naïve cause-and-effect paradigm, namely, that the LCP is actually causing these deaths. That is not true. However, this is the sort of propaganda beloved of those in the pro-euthanasia lobby – if doctors are already covertly committing non-voluntary euthanasia, then why not change the law to make the practice legal and transparent?
On 5 November 2012, the Government announced changes to the NHS Constitution which will give patients and their relatives the right to be consulted at every stage of end-of-life treatment. The Minister of State for Care Services, Norman Lamb then called a meeting of doctors and patients to discuss complaints about the LCP. The outcome was that on 26 November 2012, the government announced that an independent inquiry will be set up, under the chairmanship of Baroness Julia Neuberger. The inquiry's terms of reference mean it will '... examine systematically the experience of patients and families ... of healthcare professionals ... complaints ... the literature ... and financial incentives in this area.' And it will also make recommendations to, '... improve care ... ensure that patients are always treated with dignity ... that carers and families are always properly involved in the decision-making process ... and restore public confidence.' The inquiry is expected to report during the summer of 2013. Furthermore, the Association of Palliative Medicine, a champion of the LCP, has also launched its own inquiry. All such investigations are to be welcomed. If the LCP is being misused, those responsible must be exposed.
The LCP is easily misunderstood. One huge difficulty with it, and with any other type of end-of-life care, is that relatives can often fail to grasp the simple fact that their loved one is about to die – death is imminent and inevitable. This, in the distress and unfamiliarity of the situation, can seem unreal. Their loved one has gone into hospital all his or her life and always come out recovered, but this time there will be no recovery. The end of a life is fast approaching. And that, for many loved ones, is regarded as a failure of modern medicine. The withdrawal of food and fluids can similarly be misconstrued as a premature abandonment of the patient rather than the cessation of futile and burdensome medicine – patients approaching death usually experience weakness and become disinterested in food and drink, and they often have difficulty in swallowing. Remember, the patient is dying and needs to be made cosy and secure rather than subjected to any unnatural prolonging of the process of dying. Likewise, the prescription of analgesics and sedatives can be misread as an attempt to shorten life or to hasten death, rather than as a compassionate procedure to make the patient comfortable on his deathbed and to ease any pain, breathlessness, anxiety and agitation. These measures are good palliation not premature killing. Small wonder the LCP has become contentious.
It is not difficult to see why some people have condemned the LCP as a crude, tick-box approach with its withdrawal of nutrients, its use of drugs and sedation. Some have even called it ‘soft’ euthanasia. By contrast, others are adamant that the LCP is a positive, structured, integrated approach to end-of-life care with the added benefit of improved communication. So which is it?
LCP in conclusion
The bottom line is this – in bioethics as in much of medicine, intention is the key. If it is the intention of the medical team to shorten the patient’s life and to hasten death then it is bad medicine, it is euthanasia. Any tool can be mishandled. Medical professionals can make mistakes and misuse any protocol, including the LCP, but it is their intentions that are paramount. The LCP certainly highlights the twofold possibility of good medicine versus bad medicine.
Furthermore, intentions are determined by a person’s worldview. If a doctor has a worldview informed by the principles of Hippocratic-Christian medicine, then he will have a high view of human life, described by adjectives such as special and inviolable and non-expendable. On the other hand, if he has a worldview shaped by secular humanism, then he probably regards human life as cheap and futile and expendable. The difference between the two worldviews is not only philosophical – practically, at the bedside, it is everything.
The LCP is a medical tool and therefore it is inherently neutral – it is just a protocol on several pages of paper. What determines whether it is good or bad is its practical implementation. And that depends upon whether the doctors and nurses using it are good or bad. What is their worldview? What is their intention? Have they received adequate training, are they alert, are they conscientious? In a world where medical ethics and practice have largely departed from their historic guidelines, these are relevant questions. Furthermore, we should be sufficiently concerned to engage with campaigns to halt the legalisation of bad medicine, such as assisted suicide and euthanasia, and to support the reinstatement of good medicine, such as palliative care and the hospice movement.