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The waiting game

GPs urged to be 'more open' about end of life under NICE alternative to Liverpool Care Pathway

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of the most contentious aspects of the LCP after some families expressed concern over loved ones having food and water withdrawn without proper consent.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’.

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  • elderly - hands - old - care - palliative - dying - care home

Readers' comments (8)

  • Vinci Ho

    (1) Learnt some lessons from LCP but diagnosing 'dying' remains tricky in certain cases. That really needs experiences and on going training. Cannot underestimate the important role of the GP and District Nurse in charge on each case.
    (2) The job, to coordinate a shared and agreed common action amongst patient , family(those important to them as stated) and the nursing team (both community and hospital ), can be complex and requires patience , time and sensitivity so that everyone involved is well updated . Hence , it is progressive in nature
    (3)Sometimes it is difficult to know who is the 'real patient' , the patient or a member of the family ? This is similar to paediatrics in some cases: treat the parent , treat the child. The order of discussing death and prognosis with the patient or family first could be complicated especially in those cases of 'do not wish to be informed' as stated in the guidance.
    (4) Attaching financial incentive and set a statistical target for following the guidance would easily corrupt the ethics and moral meaning of a piece of work unique to medical professionals in the unique circumstances of a patient's life.
    (5) I still believe the fundamental principles of LCP was righteous by was contaminated by poor practical implementations ultimately .

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  • What is the metric for how 'open' Gps currently are?
    Can I see the evidence as to how 'open' we are about end of life?
    Has someone measured my own 'openess' score so I can decide if I need to be 'more open'?

    Or was this the all based on the anecdotal view of a few people round the table that GPs aren't 'open' enough about end of life care?

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  • 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’.

    This guidance is still some way off the mark. Predicting the time of death is notoriously difficult. Doctors are not trying to hide anything from patients it's just simply that prognosticating death is an estimate, not an exact science, 'accurate information about their prognosis' is a pipe dream and people need to come to terms with uncertainty when people are very sick.

    Once again this seeks to dump all the responsibility on GPs. There is no talk of the public responsibility to engage in the care of their loved ones. No discussion about our collective responsibility to discuss how we manage the dying process. Just the tired old mantra, 'see your GP'.

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  • Thanks, Anon@8.26. Exactly!

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  • Well said anon@9.28

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  • Is any one else sick of "GP urged" or "GP best placed to.." I think we need a standard letter back to all these "advisors" to say "GP says go forth and multiply off". keep your opinion to yourself unless you do the job on the ground, and let us get on with doing our job?

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  • Given I see dying patietns every day, and these buffoons sit in committees and pontificate without seeing patients, they can take a running jump telling me to be more open. I know how to work with my patinets who are dying, Ive known them for years - I dont need pointless guidance telling me how to do my job.

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  • Absolutely, 11.16. I had a look at the guidelines and here are some gems:
    "Ensuring that people have a positive experience of (health) care." It sounds really impressive but what does this yankeespeak actually mean?
    "Reduction in deaths in inappropriate places such as on a trolley in hospital or in transit in an ambulance." Any suggestions how GPs will ensure that patients don't die on trolleys?
    But the biscuit goes to this one, "Increased length of time spent in preferred place of care during the last year of life." Last year of life! Sometimes you can't tell if the patient is going to die tomorrow, but those aliens expect doctors to predict death for up to a year.

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