The birth and death of the Liverpool care pathway

It was near Mont Blanc, 80 years ago, that Marie Curie arrived at a sanatorium in the foothills of the Alps to spend her final days. But these days were not pleasant: “At times [her daughter] had to leave the room, because she could not bear to see her mother in such agony.” Her physician at the sanatorium wrote, “The disease was an aplastic pernicious anemia of rapid, feverish development. The bone marrow did not react, probably because it had been injured by a long accumulation of radiation.”1

During the first world war Curie had used her discovery of radiation to set up and drive mobile radiography units to the frontline, exposing her bone marrow to the deadly rays. After the war she funded centres around Europe to treat cancer with radium. One of these centres was in Hampstead, London.

After the second world war the Hampstead hospital was facing closure. However, the hospital committee wanted to perpetuate Marie Curie’s name and was inspired by Winston Churchill’s comment that “casualties from cancer were far worse than those caused by hostilities.” Thus the committee set up a foundation for the care of people with cancer.

Since then Marie Curie Cancer Care has established nine cancer hospices around the United Kingdom and funded research into palliative care. Carers and relatives have consistently thought that hospices were better than hospitals at providing care at the end of life. But more than half of all deaths in the UK occur in hospital and less than 4% occur in a hospice.

It was in this context that the Marie Curie Hospice in Liverpool collaborated on an end of life care pathway for use in hospitals, based on established principles of hospice care. This became the Liverpool care pathway.

Since its introduction it was adopted as a model of best practice and recommended in the Department of Health’s end of life care strategy and by the National Institute for Health and Care Excellence.

It was also near Mont Blanc, eight years ago, that the pathway was adopted into the Swiss national framework for palliative care. It has spread to another 20 countries.

It is easy to forget in the current debate that the UK has excellent palliative care services. It “leads the world,” said a 2010 report by the Economist Intelligence Unit, which ranked it first for overall care, for quality, and for availability.2 Quality “includes indicators such as public awareness, training availability, access to pain killers and doctor-patient transparency.”

Julia Neuberger’s review was set up in January, seven months after a consultant in Kent thought that he had saved a patient from death by stopping the Liverpool care pathway for him. The consultant said, “If we accept the Liverpool Care Pathway we accept that euthanasia is part of the standard way of dying.”3

John Ellershaw, the man who developed the pathway, already knew that it needed continual review—we are currently on version 12. But there is little research into end of life care to find what works best. A Cochrane group found that there was not a single eligible study for a systematic review of end of life care. It is this vacuum that the Neuberger review has now filled with sensible observations.4

The report underlines the lack of evidence and says that we need more research on the experience of care among patients, carers, and relatives. It says we should not respond to the report by treating dying patients as though they were always curable and that the public and the press need to accept that death is a normal part of living. It also calls for clear training of doctors and nurses in understanding and explaining the uncertainties around dying. Liverpool care pathway documentation is sometimes not followed with respect to nutrition, hydration, or involving carers and relatives in the discussion, says Neuberger’s report. It says that there should be a named responsible clinician and multidisciplinary decision making and that any end of life plan should not be started out of hours.

Many recommendations are already part of the pathway, and the review even states that the pathway has “made a valuable contribution to improve the timeliness and quality of clinical decisions in the care of dying patients” and that “when the LCP is used properly, patients die a peaceful and dignified death.”

Indeed, criticisms of the pathway form itself are that it is complicated to fill out, generic, and is not being followed fully. These criticisms are all valid, but it is surprising that they justify the immediate phasing out of the pathway,5 especially given the lack of evidence.

Doctors, particularly trainees, have found that the Liverpool care pathway and other end of life care pathways have provided valuable guidance on managing dying patients. Palliative care is often neglected in undergraduate and postgraduate teaching. The Liverpool care pathway taught and reminded trainees to think about aspects of dying they may never have considered—from skin care and respiratory secretions to religious needs.

More insidiously, the decision to phase out the pathway shows how sensationalist journalism can dictate health policy and gives implicit credence to some of the more outlandish claims. Some members of the public believe that for years healthcare staff have been hastening the deaths of patients to free up beds and to bring in money to hospital trusts. In my and many other trainees’ experience the pathway has only ever been implemented when it was thought to be in a patient’s best interests, and I doubt that any trainee even knew about financial incentives.

This saga will demoralise staff and further erode trust between patients and doctors. Worst of all, it will lead to uncertainty and confusion among trainees caring for many of the 800 people who die in UK hospitals every day.