Your browser is no longer supported

For the best possible experience using our website we recommend you upgrade to a newer version or another browser.

Your browser appears to have cookies disabled. For the best experience of this website, please enable cookies in your browser

We'll assume we have your consent to use cookies, for example so you won't need to log in each time you visit our site.
Learn more

NICE sets out draft guidelines for end of life care

  • 11 Comments

Patients in their last days of life should be encouraged to drink “if they wish to and are able to”, according to new draft guidance from the National Institute for Health and Care Excellence.

The draft guidance also said that, if considered beneficial, end of life care patients should receive assisted hydration.

“The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care”

Andrew Dillon

However, this should be monitored at least once a day and fluids reduced or stopped if there is any sign of harm or no sign of benefit, said NICE. People should also be given frequent mouth care.

The publication of the draft guidance follows the abolition of the controversial Liverpool Care Pathway, which was phased out last year after a review by the Health Service Ombudsman found serious failings in the way it was being used.

In June last year a set of guiding principles for the care of dying people, called the Priorities for Care, was published to replace the axed care pathway.

Asked by Nursing Times how the NICE guidance would fit in with the priorities framework, a spokeswoman for the institute said: “The framework sets out the main priorities for care and our guideline will set out best practice to support staff to achieve these.”

The new NICE guidance, which is out for consultation, makes a series of recommendations covering key areas such as the prescribing of medicines, care plans and communication, as well as hydration.

It also lists signs and symptoms that may indicate death is imminent in an effort to ensure people do not miss out on treatment and care that could make their final days more comfortable.

Crucially, the document stresses the need for nurses and doctors to communicate clearly with the dying person and their family and ensure they are fully involved in decisions about treatment.

Some families who contributed to the review of the Liverpool Care Pathway said their elderly relatives had been placed on the pathway without their knowledge or consent.

The new draft guidance said it was important to identify the most appropriate member of the healthcare team, which may well be a nurse, to talk through the patient’s prognosis with them based on “confidence and competence” and their “relationship and rapport”.

It emphasised the need to provide accurate information and explain any uncertainty “avoiding giving false optimism” and to ensure patients and their loved ones have the chance to talk about their concerns and ask questions.

Multi-professional teams should create an “individualised plan of care”, which includes the dying person’s wishes, such as where they would prefer to die and how they would like symptoms to be managed.

They should also identify a “named lead healthcare professional, who is responsible for encouraging shared decision-making in the person’s last days of life”.

In addition, the draft guidance highlighted areas where more research was needed to help improve end of life care.

The consultation on the draft guidance is open until 9 September, with the final document due out in December.

NICE chief executive Sir Andrew Dillon said: “Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved.

“The Liverpool Care Pathway was originally devised to help doctors and nurses provide quality end-of-life care. While it helped many to pass away with dignity, it became clear over time that it wasn’t always used in the way it was intended,” he said.

“The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care,” he added.

“The draft guideline marks an important step forward”

Bill Noble

But the charity Marie Curie said its research suggested that as many as 92,000 people a year in England do not get palliative care, because healthcare professionals have failed to recognise they are at the end of life.

Medical director Professor Bill Noble welcomed the NICE guidance but said it was vital the recommendations were backed up by training for nurses and others.

“The draft guideline marks an important step forward and could form the basis of continuous professional development and training for health and social care professionals in recognising and providing care for terminally ill and dying people,” he said.

“Without this kind of training to embed the NICE guidelines, failings in care identified in the recent Health Service Ombudsman report will continue and may worsen,” he added.

  • 11 Comments

Readers' comments (11)

  • michael stone

    I am still working my way through this guidance - it doesn't seem to be quite the same as what Mark baker from NICE was saying about it on BBB Radio 4 yesterday morning, when he said among other things that:

    “…decisions about the end of life need to be taken in conjunction with the person concerned if they are able to and with those close to them rather than these decisions made by doctors on their behalf, and there is a widespread belief within the profession that do not resuscitate orders are a clinical decision but they are a decision to be made in conjunction with the patient and their families”

    You can use the BBC 'listen again' for a few weeks - he was speaking about 2hrs 15 minutes in, and the link is at:

    http://www.bbc.co.uk/programmes/b0639wwr

    Unsuitable or offensive? Report this comment

  • michael stone | 30-Jul-2015 9:29 am

    Unsuitable or offensive? Report this comment

  • michael stone | 30-Jul-2015 9:29 am

    go and write it yourself you old fool and then perhaps you will leave hc profis and nt alone to carry out their valuable work. too much interference is totally destructive to good care. or else we will all leave and leave you and other interfereing meyymbers of the public who of course are far more knowledgable compassionate and despite total lack of training can do the job so very much better. now hop it unempatheic cold as stone

    Unsuitable or offensive? Report this comment

  • I am annoyed yet again how every nurse/doctor is tarred with the same brush. The end of life care in our area is fantastic. Yes sometimes things do not go to plan.Most sane and sensible health professionals realise that good hydration, mouth care and pain relief are key at the end of life. Communication is vital with both patients and relatives. I trained rather a long time ago. Do medical and nursing colleges not teach these things any more? What has happened to good old common sense and respect for one another.

    Unsuitable or offensive? Report this comment

  • michael stone

    Anonymous | 30-Jul-2015 12:14 pm

    Everyone isn't 'tarred with the same brush'.

    I think the point is that these days, as opposed to 'rather a long time ago', bad stories spread faster because of 'social media', and that leads to 'headlines'. And even if only a few deaths go very badly, the bereaved are extremely upset.

    However, there is an issue with 'Communication is vital with both patients and relatives' - there is very unclear and ambiguous guidance around the combination of patient confidentiality and end-of-life patients who have lost mental capacity. This does need to be sorted out, as I have pointed out more than once, for example at:

    http://www.bmj.com/content/348/bmj.g4094/rr/703333


    It isn't good mouth care, which is fundamentally problematic, anyway: it is the general issue of 'who makes the decisions'. For example, the NICE guidance addresses drinking in this section:

    22. Support the dying person to drink if they wish to and are able to. Check for any difficulties, for example, swallowing problems or risk of aspiration. Discuss the risks and benefits of drinking with the dying person, the multiprofessional team and others involved in the care of the dying person.

    That first sentence has got an issue of interpretation, with the words 'able to' - and the third sentence talks about a discussion, but it does not make clear what happens if discussion leads to disagreement.

    Last year the LACDP included the following two sections about drinking, on page 89 of 'Once Chance To get It Right':

    10. The dying person must be supported to eat and drink as long as they wish to do so and there is no serious risk of harm (for example through choking). However if there is likely to be a delay in assessing their ability to swallow safely, alternative forms of hydration must be considered and discussed with the person. Nursing and medical records on the assessment of intake must be kept.

    11. If a dying person makes an informed choice to eat or drink, even if they are deemed to be at risk of aspiration, this must be respected.

    The LACDP's section 11, seems to be 'missing' from the NICE draft (from my 'first very-partial glance') but the LACDP are legally correct - 'clinicians describe risks, mentally-capable patients decide which risks to take' is the correct legal situation to start from. Ditto the NICE section 28, which is not clear who is doing the decision-making: it is the patient, if mentally-capable, who 'does the considering'.

    There are some issues which need sorting out, not ignoring, or setting aside 'as being too difficult to deal with' - including the issues I pointed at in a comment on Marie Curie:

    http://blog.mariecurie.org.uk/2015/04/08/new-conversation-terminal-illness/#comment-65442

    The 'common sense' seems to have moved to Radio 4's 'Today' programme.

    Unsuitable or offensive? Report this comment

  • michael stone

    Professor Pullicino is attacking these guidelines in today's Daily Telegraph (page 14, also see the front page). He is correct to point at clinical uncertainty, but he misrepresents what the Mental Capacity Act actually says (although he is correct, in his description of what professionals tend to claim the MCA says). Patrick Pullicino did not like the LCP either.

    There is a Glossary in the full draft guidance, and it includes a truly weird definition of 'shared decision making', which can be applied to almost any decision making or analysis, and so far as I can see has got absolutely no connection to the word 'shared':

    Shared decision making - The process of making a selective intellectual judgment when presented with several complex alternatives consisting of several variables, and usually defining a course of action or an idea.

    Unsuitable or offensive? Report this comment

  • michael stone | 3-Aug-2015 1:58 pm


    !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Unsuitable or offensive? Report this comment

  • michael stone

    Fortunately, Patrick Pullicino's return e-mails to me, when I pointed out that he has stated things in the Daily Telegraph which are not provable from the MCA, are rather more purposeful than you your 'picket fence' unintelligible comment.

    Unsuitable or offensive? Report this comment

  • michael stone

    My previous comment was to:

    Anonymous | 3-Aug-2015 2:11 pm

    Unsuitable or offensive? Report this comment

  • michael stone | 6-Aug-2015 10:44 am


    ???????????????????????????????

    Unsuitable or offensive? Report this comment

Show 1020results per page

Have your say

You must sign in to make a comment

Please remember that the submission of any material is governed by our Terms and Conditions and by submitting material you confirm your agreement to these Terms and Conditions. Links may be included in your comments but HTML is not permitted.