Comments from Dr Gillian Craig on Changing Gear

CHANGING GEAR: Guidelines for managing the last days of life in adults.
Revised and updated by a working party chaired by Professor Ellershaw.
Published by National Council for Palliative Care, London. November 2006.

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

1. This publication highlights some principles for the care of people dying of malignant disease and non-malignant disease in hospitals, care homes, private residences and hospices, as set out in the Liverpool Care Pathway. This approach is being promoted throughout the country 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.

2. Currently 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.

3. 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.” (Changing Gear p 22)

4. Changing Gear has remarkably little to say about the value of hydration at the end of life. The guidelines fail to mention the work of Fainsinger and Bruera 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.

5. 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 (see p. 10) and considers it “best practice” to discontinue intravenous infusions in the last hours or days of days of life (p18). This advice is dangerous, for it can be difficult to predict how long a patient has to live.

6. The National Council note (p7) that sudden deterioration over days should prompt a search for correctable causes… but fail to mention reversible factors such as dehydration, heart attacks, pulmonary emboli, severe constipation etc.

7. They recognise (on p10) that a patient’s condition can change very quickly and that regular and frequent assessment is needed… but (on page 11) 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, who were found to have some eminently treatable condition when carefully examined by a skilled doctor. Careful clinical examination is a vital part of good medical care. Patients should not be deprived of such care. It is a little late to phone for the general practitioner after the patient has died!

8. On p 19 we are told that Macmillan Cancer Support have developed a training programme entitled Foundations in Palliative Care intended specifically for care home staff. I have not seen this publication so can only hope that care staff will be trained to recognise dehydration. Formal enquiries should be made on this point.

9. GPs and nurses in the community must be trained and willing to set up subcutaneous infusions, otherwise many old people will die prematurely of dehydration.

10. Palliative carers must work with colleagues in other specialties to ensure optimum care.