Feature Palliative Care

Liverpool care pathway: doctors speak out

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e7644 (Published 14 November 2012) Cite this as: BMJ 2012;345:e7644
  1. Adrian O’Dowd, freelance journalist
  1. 1Kent
  1. adrianodowd{at}aol.com

Adrian O’Dowd assesses the professional reaction to media criticism of a pathway used to guide end of life care

The row over the controversial Liverpool care pathway continues, with more doctors and palliative care specialists speaking out over its use in UK hospitals and hospices. As the BMJ has reported,1 2 there has been mounting public and media hostility towards the protocol for the care of dying patients.

The strength of feeling was apparent in a letter sent to the Daily Telegraph last week (6 November), signed by 1300 doctors who said they supported the pathway.3

The letter said the pathway was used to “care for patients, not to hasten their death,” and added: “The decision to begin the care pathway is made in partnership with the patient and their carers . . .

“All of the health-care professionals who have signed this letter have been involved in the care of dying patients; many of us have also cared for friends or relatives during the final days of their lives. This is how we would wish to be cared for at the end of our lives and our patients deserve to be offered nothing less.”

One doctor who is angry at the way the subject has been presented is Anjali Mullick, consultant in palliative medicine at St Joseph’s Hospice and Newham University Hospital, London.

Mullick says: “Contrary to some of the recent press, it [the pathway] is not prescriptive about either treatments that should be withheld or interventions or medications that should be administered. The clinical needs of the individual are paramount.”

Mullick says she has seen the tool work well in both the hospice and the hospital setting.

“In my practice, I have never seen it being used as a tool to hasten death, which is being implied in some press reports. The tool is absolutely in line with professional guidance and our legal framework and in no way aims to hasten death.

“It encourages ongoing care and assessment of a patient’s needs, and if a patient makes an unexpected improvement, the tool encourages a new treatment plan to be instigated and the LCP [pathway] is then stopped.”

Mullick said many of the 311 complaints to the Press Complaints Commission about one of the Daily Mail’s highly critical articles against the plan were from “saddened and distressed” healthcare professionals.

“[It’s] the current implication that many doctors and nurses are working outside of their professional and legal boundaries when it comes to care of the dying patient. In my experience, this is simply not the case and devalues our good work done in caring for dying patients.”

However the protocol does not command the support of all doctors.

Peter Millard, emeritus professor of geriatrics at the University of London, disagrees and believes that although the pathway is useful, it should not be used in practice.

“It comes out of a hospice and it could be useful as an educational tool but should never be used in practice,” says Millard. “It’s useful as a tool for teaching people.

“In practice it’s time consuming on the people doing it, and it doesn’t seem that once a person is on it, they can come off it. It sets up a pathway which ends in death. It is not flexible enough to be changed or sophisticated enough to take into account that person’s particular circumstances.”

The man who came up with the pathway, Professor John Ellershaw, director of the Marie Curie Palliative Care Institute in Liverpool, is puzzled at the current press attacks and defends it as an evidence based tool.

“It has been reviewed at regular intervals since its development,” says Ellershaw. “The last time we did that, we undertook a two year consultation exercise including national and international experts in this field of care to come up with the current version 12 that is in common usage across the healthcare community.

“I recognise that concerns are being reported, particularly relatives voicing concerns around the LCP being used without consultation or their knowledge. Our advice and guidance regarding the document is that it should always be explained and discussed with relatives.

“The coverage that is currently being undertaken is making it difficult for healthcare professionals and relatives . . . media reporting around the LCP puts uncertainty into the system, and I feel that that is making it more difficult to deliver good care for dying patients.”

The National End of Life Care Programme, the NHS body working across health and social care organisations in England to improve end of life care for adults is looking into the use of the pathway. On the surface, this appeared to be a reaction to the press coverage, but the programme insists that work was already planned and the pathway was something that should be subject to continuous improvement.

Only as good as the people who are using it

Claire Henry, director of the programme, says one of the main benefits of the pathway is that it is based on core principles transferred from hospices around communication, assessment, symptom management, reassessment, and thinking about the whole person.

“But the tool is only as good as the people that are using it,” she adds. “The key thing for me is how people are educated and do they have trust board sign-up and a whole team approach.”

Asked her opinion of the national press articles, Henry says: “I am very concerned about what stress it’s causing to people and their reaction. It was portrayed in an inappropriate way. Out in the field, professionals are trying to do their best to give good quality end of life care, and a lot of them think these articles are trying to undermine their professionalism.”

The issue will also be addressed in proposed changes to the NHS Constitution announced on 5 November that the government says will give patients stronger rights.

The change is part of a wider 12 week consultation asking the public and the NHS how the NHS Constitution can be strengthened.

One of the proposals is for a new right that patients, their families, and carers should be involved in all discussions and decisions, and the pledge on discussing treatment will include end of life care.

The BMA supports the pathway’s use but admits that how well it is applied can make a difference. Tony Calland, chairman of the BMA’s medical ethics committee and retired general practitioner, says: “There is nothing wrong with the pathway as long as it is applied with clinical common sense and experience and good communication with the family.

“These conversations can be difficult, and sometimes I suspect they are not undertaken in an ideal manner and sometimes people are put on the pathway perhaps prematurely before they are obviously at the very end stages of life.”

However, Calland is concerned about the negative effects of a national recommendation to stop using the pathway: “The effect would be serious for people who are coming to the end of life because doctors would be frightened to use analgesia, and it would be risky for patients because it would be relying on the individual experience and knowledge of an individual doctor who has been warned off following anything like the LCP.”

The pathway provides important support to clinicians who are not expert in this area of care, according to Scott Murray, St Columba’s Hospice chair of primary palliative care at the University of Edinburgh.

A lack of knowledge of the use of the pathway is at the crux of the matter as he explains: “Before the LCP was identified as a special protocol, doctors and nurses in discussion with patients and relatives did what they thought best in many ways, and this sometimes included some of the items now described as the LCP, such as stopping some specific treatment and starting other treatment.

“So what is generally happening is that these conversations are happening, but sometimes we do not name the LCP as this can be very confusing for carers.”

Responding to the newspaper claim that “terminally ill patients have been heavily sedated and deprived of essential nutrients and fluids in order to make them die more quickly,” he says: “Such practice is illegal and is not happening in the UK. We cannot do things in order to make people die quicker.”

Any advice to stop using or following the pathway would have consequences, he adds, saying: “It would have a deleterious impact, and I would be disappointed as I have personally been involved in training many nursing homes and general practices in the use of this framework.”

Notes

Cite this as: BMJ 2012;345:e7644

Footnotes

  • Competing interests: The author has completed the ICMJE unified disclosure form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declares no support from any organisation for the submitted work; no financial relationships with any organisation that might have an interest in the submitted work in the previous three years; and no other relationships or activities that could appear to have influenced the submitted work.

  • Provenance and peer review: Commissioned; not externally peer reviewed.

References