Dying the Liverpool Way

The Liverpool Care Pathway is being promoted in the UK as “best practice” for end of life care. That is the view expressed in “Changing Gear: Guidelines for Managing the Last days of Life in Adults” published by the National Council for Palliative Care (NCPC) in November 2006. The publication is an updated version of guidance that first appeared in December 1999. The original version paid very little attention to hydration; the revised version is no better! A decade of debate about the value of hydration in the dying has been ignored! The National Council stand accused of producing these guidelines with inadequate consultation.

Dr Gillian Craig, a retired geriatrician, and editor of “No Water-No Life: Hydration in the Dying” (ISBN 0 9545445 3 6) published in the UK in 2005, cast a critical eye on the updated version of “Changing Gear” recently, as indicated below.

CHANGING GEAR: Guidelines for managing the last days of life in adults.

Reviewed and updated Nov. 2006. National Council for Palliative Care, London.

Some comments from Dr Gillian Craig. MD, FRCP. Vice Chairman Medical Ethics Alliance.

Introduction.

This publication presents some principles set out by a working party of eight chaired by Professor Ellershaw of Liverpool. The Liverpool Care Pathway is intended for use in the care of people dying of malignant disease and non-malignant disease in hospitals, care homes, private residences and hospices. This approach is being promoted throughout the UK with government backing, a stated aim being to reduce emergency admissions and reduce transfers of patients from care homes to hospital at the end of life. At present although many people express the wish to die at home, only about 23% achieve this, because the necessary support is not in place or cannot be provided, or because the patient needs in-patient specialist care.

A White Paper “Our Health, Our Care, Our Say: a New Direction in Community Services” (2006) is said to stress that “training in palliative care which is recognised and accepted as an integral part of all good clinical practice, should be included in all health and social care professionals basic training, as all professionals across all settings will care for dying people at some point.” Such training is all very well if the palliative care principles taught take into account different schools of thought on issues as crucial as hydration, but training that perpetuates long-held dogma is to be deplored.

Some comments on Changing Gear.

a) The latest version of Changing Gear promotes a regime of sedation without hydration that is known as the Liverpool Care Pathway. It says remarkably little about hydration and does not take into account the views of palliative carers such as Fainsinger and Bruera in North America, who offer subcutaneous hydration to all their dying cancer patients who are dehydrated or at risk of becoming so, and by so doing reduce the incidence of distressing terminal delirium. Nor does it mention the work of Morita in Japan who also offers his patients hydration at the end of life. Nor does it take into account the views of Professor Sam Ahmedzai of Sheffield, who said, when speaking at the Palliative Care Congress in Sheffield, England in April 2006, said- “Humane medicine should err on the side of hydration…palliative care literature does not suffice…”

b) The guidance states that sudden deterioration over days should prompt a search for correctable causes… but fails to mention reversible factors such as dehydration, heart attacks, pulmonary emboli, severe constipation etc.

c) Changing Gear fails to mention that subcutaneous hydration can be given in the patient’s home to prevent dehydration, fails to list thirst as a commonly reported symptom and considers it “best practice” to discontinue intravenous infusions in the last hours or days of days of life.

d) The suggestion that it is “best practice to discontinue intravenous infusions in the last hours or days of life” is dangerous because it can be difficult to predict how long a patient has to live. It is also dangerous because it could be construed as “a body of medical opinion” for medico-legal purposes in potential medical negligence cases.

e) One doctor may say the patient is dying and treat accordingly, but another may find an eminently treatable condition in the same patient. If the Liverpool Care Pathway regime is used in people who are not dying, the treatment will prove fatal. Yet the plan is to use it in hospitals, hospices and homes throughout the land in the NHS End-of-Life Programme. Palliative Carers and the Department of Health should think again!

f) The working party recognise that a patient’s condition can change very quickly and that regular and frequent assessment is needed… but they consider examination to be “rarely appropriate” in the last stages. However all doctors will know of patients who appeared to be at death’s door, but were found to have a treatable condition when examined carefully by a skilled doctor. Careful clinical examination is a vital part of good medical care.

In conclusion.

1. Sick elderly people tend to stop drinking and get dehydrated rapidly. They may appear to be at death’s door, when they are simply dehydrated. If nothing is done about it they will die. It is vital that all palliative care staff are trained to recognise dehydration.

2. If the elderly are to receive palliative care at home or in community settings, family doctors, community nurses and nurses specialising in palliative care must take a more active approach to hydration. Palliative carers need to be reminded that subcutaneous fluids can be given quite simply even in the patient’s home. “It is remarkably safe”- says Professor Ilora Finlay a respected palliative care professor in Wales. So all doctors and nurses working in the community must be trained and willing to set up subcutaneous infusions, otherwise many patients will die prematurely of dehydration.

3. The NHS End-of-Life Programme is taking palliative carers into unfamiliar territory. Therefore they must draw on the knowledge and skills of colleagues such as geriatricians, cardiologists and renal physicians. Leading palliative carers in North America recognise the need for collaboration with other specialties and are seeking ways to achieve this. Palliative carers in the UK should do the same.

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