The National Institute for Health and Care Excellence (NICE) has published new guidelines for the clinical care of adults considered to be in the final two or three days of life
NICE's new guidelines are a response to concerns regarding the use of the Liverpool Care Pathway, and are issued as an 'evidence‑based guideline for the clinical care of the dying adult throughout the NHS'. NICE guideline 31 ('Care of dying adults in the last days of life'), 'covers the clinical care of adults (18 years and over) who are dying during the last 2 to 3 days of life. It aims to improve end of life care for people in their last days of life by communicating respectfully and involving them, and the people important to them, in decisions and by maintaining their comfort and dignity. The guideline covers how to manage common symptoms without causing unacceptable side effects and maintain hydration in the last days of life.'
The Liverpool Care Pathway was reported many times over to have been misapplied in cases of patients who were not in fact in the final hours of days of life, and the new NICE guideline wisely states that
'The ways in which people die and how long this takes varies widely, mostly because of the underlying diseases responsible but also the person's robustness or frailty, and their social setting. Some people remain mobile and largely self‑caring, and can continue to take oral medication and eat and drink up until their death. Others may die suddenly and unexpectedly after a significant trauma or catastrophic medical event. Some people may never experience any of the symptoms addressed in the guideline. People with progressive cardiac, pulmonary or neurological disorders, dementia, some forms of cancer or who have had a stroke may spend several weeks or months in a gradual or intermittent decline.'
The hallmark of the new guidelines - the first such national guidelines to be introduced in England - is the preference for individualised plans of care, agreed with and understood by patient and clinician. The six underlying principles are:1. Recognising when a person may be in the last days of life
NICE recognises that of these, recognising dying, responding to hydration needs and anticipatory prescribing will involve the greatest challenges. Various schemes of training are recommended regarding the first issue; encouragement for greater understanding of how hydration can and should be approached in the broader scheme of care regarding the second; and additional training recommended re the third.
The guidelines' substantial support for research into clinical needs in the final days corresponds with the importance attached to research - 'not a bolt-on' - in debate on the Access to Palliative Care Bill brought before the House of Lords by Baroness Finlay.
In short, the guidelines are a positive step forward, but much work remains to be done at the ground-level to ensure that a change in culture, based on, but far from limited to good training and good communication.