Birth of the pathway
A few miles west of Mont Blanc, eighty years ago, Marie Curie arrived at a sanatorium in the foothills of the Alps to spend her final days. But they 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 there 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.”
There was no Liverpool Care Pathway then
During World War I, Curie used her discovery of radiation to set up and drive mobile x-ray units to the frontline, exposing her bone marrow to the deadly rays. After the war, she funded centres around Europe to treat cancer using radium. One of these centres was in Hampstead and her daughter said, “The creation of hospitals like the Marie Curie Hospital was one of my mother’s greatest dreams. I am happy and grateful to think that it is in England, in a great country which my mother admired and loved, that that dream of hers has been realised.”
After World War II, the hospital was facing closure in the new National Health Service. However, the hospital committee wanted to perpetuate Marie Curie’s name and were inspired by Winston Churchill’s comment that “casualties from cancer were far worse than those caused by hostilities.”
Thus they set up a foundation for the care of people suffering from cancer. In the same year that the Marie Curie Hospital closed, the first modern hospice opened up on the other side of London. St Christopher’s Hospice, named after the patron saint of travellers, was set up by Dame Cicely Saunders. She viewed hospice care as supporting the final stage of life’s travels, “to keep the patient’s own struggle within his compass and to bring hope and consolation to the end.”
Since then, Marie Curie Cancer Care has established nine cancer hospices around the UK as well as funding research into palliative care. Family members have consistently thought that hospices provide better end of life care than hospitals. In one study of St Christopher’s Hospice, 84% thought medical care was excellent and 83% thought nursing care was excellent—versus 38% and 39% for hospitals, respectively. Similar results have been found in the USA. The most frequent complaints about end-of-life care in NHS hospitals were that “the healthcare team had not kept them informed, given them choices, or supported them to make decisions about the patient’s care.”
However, more than half of all deaths in the UK occur in hospital, and less than 4% of deaths occur in a hospice. Only a sixth of people with cancer die in a hospice and less than 1% of those with terminal cardiovascular disease.
It was within this context that the Marie Curie Hospice in Liverpool collaborated on an end-of-life care pathway for use in hospitals, using established principles of hospice care. This became the Liverpool Care Pathway (LCP).
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.
A few miles east of Mont Blanc, eight years ago, the LCP was adopted into the Swiss national framework for palliative care. Worldwide, it has spread to another twenty countries.
It is easy to forget in the current debate that the UK has excellent palliative care services. It “leads the world” according to a 2010 report by the Economist Intelligence Unit, and ranked first for quality and availability (as well as overall).
Death of the pathway
A bishop, a lord, a nurse, a rabbi, a journalist, a field marshal, a lawyer and a doctor walked into a pub. OK, a public office. If the composition of the independent Neuberger review panel of the LCP sounds like a joke, its findings certainly don’t.
Commendably, the panel also had two patients’ relatives in addition to the above and a palliative care expert for advice. The review was set up in January, seven months after a doctor in Kent thought he had saved a patient from death by stopping the LCP for him. He said “If we accept the Liverpool Care Pathway we accept that euthanasia is part of the standard way of dying.”
This triggered intense media scrutiny, a consensus statement from charities and professional bodies, parliamentary debates, and the Neuberger review. John Ellershaw, the man who developed the LCP, already knew 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.
It is this vacuum that the Neuberger review has now filled with sensible observations.
On the first page, the report underlines the lack of evidence and says we need more research on the experience of care by patients, carers, and relatives.
It says we should not respond to the report by treating dying patients as though they are always curable and that the public and the press need to accept that death is a normal part of living.
It says clear training is needed for doctors in understanding and explaining the uncertainties around dying.
It says that LCP documentation is sometimes not followed with respect to nutrition, hydration, or involving carers and relatives in the discussion.
But the report’s recommendations are ambitious:
It says that there should be more staff and resources, especially out-of-hours. But it does not mention the current funding crisis.
It says that payments by commissioners based on usage of the LCP risk being seen as financial incentives and should be stopped. But it asks commissioners to think of new ways to promote the quality of palliative care.
It says that the LCP has become a tick box exercise. But it calls for more tick box exercises to assess quality of end-of-life care during revalidation, new end-of-life care plans, and hospital inspection visits.
Finally, it says that “The term ‘Liverpool Care Pathway’ is extremely unhelpful and should be abandoned.” But the review wants new care plans to be rolled out across the country within 12 months.
The use of “pathway” was indeed unfortunate, and now the name has become too toxic to use with patients, relatives, or carers. It has also become too politically toxic. The two biggest traditionally Conservative newspapers led the attack on the LCP. The papers can now be assuaged and the readers reassured that the “death pathway” is no more. The prime minister’s new election strategist wanted the “barnacles off the boat” for 2015. In health, that means sinking plain packaging, minimum unit pricing and the LCP.
The real problems with the LCP were always mis-timing, misuse, and miscommunication. The Liverpool Care Pathway was just that—a path. A path that is only for those in the final few hours, a path that needs properly trained guides, and a path that should not bring death closer but should find the most comfortable and dignified route to death.
Now I hope that we and our patients will not be scrambling and stumbling until a new path is found.
Competing interests: I am a clinical fellow at the BMJ and the Royal College of Physicians. In February 2013, I helped to design and report a survey on perceptions of the Liverpool Care Pathway for the BMJ. The RCP collaborates with the Marie Curie Institute of Palliative Care Liverpool to conduct a national audit for care of the dying, including one later this year.
Part of this blog is based on an earlier online article written by me.