GPs are being encouraged to take more responsibility for informing dying patients and their families when the end of life is near, including being more open about prognosis, under draft guidelines from NICE that are intended to replace the Liverpool Care Pathway.
The draft recommendations also call for GPs to be more proactive in stopping any unnecessary medications in patients approaching the end of life, and anticipating what treatments the patient may want to alleviate symptoms.
GP experts welcomed the guidelines which they said reaffirmed current practice among GPs, but also provided more explicit standards and clearer advice on recognising when patients were dying.
NICE said the guidance would ‘fill the space’ left by the Department of Health’s withdrawal of the Liverpool Care Pathway after an independent review concluded the pathway – a formal protocol for palliative care used mainly in hospitals – had in some cases been used inappropriately.
The draft guidelines state that GPs should:
- ‘Discuss the dying person’s prognosis with them (unless they do not wish to be informed) as soon as it is recognised that they may be entering the last days of life and include those important to them in the discussion if the dying person wishes’.
- ‘Provide the dying person, and those important to them, with accurate information about their prognosis (unless they do not wish to be informed), explaining any uncertainty and how this will be managed, but avoiding false optimism’.
- ‘When it is recognised that a person may be entering the last days of life, review their current medication and, after discussion and agreement with the dying person and those important to them, stop any previously prescribed medicines that are not providing symptomatic benefit or may cause harm’.
The proposals also offer specific recommendations on when and how to offer clinically assisted hydration – one of the most contentious aspects of the LCP after some families expressed concern over loved ones having food and water withdrawn without proper consent.
The guidelines also incorporate new standards endorsed by the DH, set out by the Leadership Alliance for the Care of Dying People (LACDP), including the recommendation that every dying patient is assigned a named, lead clinician – which for patients cared for in the community may be the patient’s GP, but will often be a district nurse – who must provide their own contact details as well as an out-of-hours number.
They state that the patients’ healthcare team should ‘identify a named lead healthcare professional, who is responsible for encouraging shared decision-making in the person’s last days of life’ and that this named clinician should ‘give their own contact details and also contact details for relevant out-of-hours services to the dying person and those important to them’.
Professor Mayur Lakhani, a practicing GP who chairs the Dying Matters Coalition and NHS West Leicestershire CCG, said the guidance was ‘very useful’ and ‘mainly confirms what is existing good practice’ as well as ‘offering much clearer guidance on recognising and identifying the dying patient’.
He said GPs should note that the guidance is ‘more explicit about the standards’ required, and they should be ‘more open about prognosis and telling patients and families that the end of life is near’.
Professor Lakhani added that ‘there will need to be more team working and involvement of GPs in the last few days of life and GPs should be prepared for this type of multidisciplinary team working’.