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Ministers confirm new procedures for end of life care

  • 161 Comments

The government has confirmed it will replace the Liverpool Care Pathway and instead ask senior clinicians to sign off all end of life care plans, following an independent review.

The review, headed by Baroness Julia Neuberger, was established by care and support minister Norman Lamb after concerns were raised that the end of life care pathway was flawed.

In its report published today, the review concluded that in the right hands, and when operated by well-trained, well-resourced and sensitive clinical teams, the LCP helped patients have a dignified and pain-free death.

But it also found too many cases of poor practice, poor quality care and relatives not being properly engaged.

The review made 44 recommendations most notably that the LCP should be phased out and “replaced by a personalised end of life care plan, backed up by good practice guidance specific to disease groups”.

Other recomendations include that, unless there is a “very good” reason, a decision to withdraw or not to start a life-prolonging treatment should not be taken during any out of hours period

In addition, the Nursing and Midwifery Council should urgently issue guidance on end of life care and there needs to be a new system-wide approach to improving the quality of care for the dying, the review added.

As a result, ministers said today that the LCP would be phased out over the next six-12 months and replaced with an individual approach to end of life care for each patient.

This will include a personalised end of life care plan backed up by condition-specific good practice guidance, agreed with a named senior clinician.

The government also said all NHS hospitals should immediately undertake clinical reviews of all care given to dying patients.

In addition, all hospitals should ensure arrangements are put in place as soon as possible so every patient has a named senior clinician responsible for their care in their final hours and days of life.

Meanwhile, NHS England has been told to work with clinical commissioning groups to bring about an immediate end to local financial incentives for hospitals to promote a certain type of care for dying patients, including the LCP.

Mr Lamb is also writing to the NMC and General Medical Council to highlight the need for effective guidance on supporting nutrition, hydration and sedation for the dying, and also to stress the importance of professional regulation issues raised by the report.

He said: “I have personally heard families describe staff slavishly following a process without care or compassion and leaving people suffering at the end of their lives. This is something we cannot allow to go on.”

The government said it will consider fully the recommendations of the review and over the coming months will be working with these organisations, stakeholders and charities to inform a full system-wide response in the autumn.

Chief nursing officer for England Jane Cummings responded to the report on behalf of NHS England.

She said: “I have been a nurse for over 30 years and know how important care at the end of life is for our loved ones. I say this both on a professional and a personal level.

“The review and NHS England recognise the good principles of end of life care in the LCP, but there have been failings in the quality of care in some areas and this is never acceptable. Caring for someone when they are dying is difficult and emotional even for experienced healthcare professionals.”

She added: “Most of the time we do get it right but we have to get it right for everybody. Issues such as poor communication with relatives have nothing to do with any particular care plan. That is just poor care and we don’t want it in the NHS.”

An NMC spokesperson said: “This is an important report in a sensitive area. We will consider the report and its recommendations carefully with our partners and respond in due course.

“We take very seriously any suggestion that nurses have falsified records relating to discussions about end of life care, and other allegations of unacceptable practice. We will follow this up with the review team.”

Peter Carter, Royal College of Nursing chief executive and general secretary, said: “There is only one chance to get care right at the end of any person’s life.

“It is at the heart of all caring professions that patients must be treated with dignity, and that means that all treatment has to be properly communicated. No patient should be left in the position where they or their families are suffering and don’t understand what is happening with their care.”

He added: “The RCN is working with other organisations and professions to produce guidance to help nurses deal with this difficult area, and this report contains a great deal of practical advice and insight to help inform this.”

Professor Jane Maher, chief medical officer of Macmillan Cancer Support, described the LCP as a “brave and important attempt to tackle the taboo subject of how to best care for people at the end of life”.

But she said: “Poor implementation can result in the upsetting findings highlighted in today’s report.

“Macmillan welcomes the move to individual care planning, but it’s vital staff are supported and trained to have the right culture and skills in place, and to talk to patients and their families early on,” she added.

“All professionals should see it as a core part of their job to help patients and their loved ones to think about end of life. Everyone must feel comfortable having conversations about dying so they and can plan the care they receive in the last hours or days of life.”

 

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  • 161 Comments

Readers' comments (161)

  • If only it had been called The Loving Care Pathway..................

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  • I think one of the biggest problems is that it was called a pathway. It should have simply been called a care plan, which is what it is. Too many people see it as having to follow a course as suggested by the name, instead of just treating it as useful documentation and a prompter to ensure all good practice has been carried out for someone approaching the end of their life.

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  • Hi Joanne, whatever it was called it was being abused badly. Very badly indeed in so many cases that have been investigated. Many thousands of cases have not been investigated.

    This I share with you. My son was killed quite deliberately over a 41 day period by a syringe driver containing Midazolam and Morphine which was increased to lunatic levels before he died. No consultation, no relative involvement. The reverse, a pack of lies was used to 'sell' the driver to him as a way of delivering discomfort relief. Which he did not need. But then the truth began to dawn as the dose was ramped up at every opportunity with absolutely no reason to do so putting him into a sedated coma time and time again. Be aware that he wanted to live was improving but was then killed. Make of that what you will, but it happened.


    He was certainly not dying and was in fact improving. A specialist could not possibly miss the signs of improvement. They would have to be blind as well as completely incompetent to do so. So why was this done? Good question. A question that is in the process of being answered.

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  • Pirate and Parrot

    Anonymous | 15-Jul-2013 1:46 pm

    Pathway implies something prescriptive, but so does plan - it should be individualised care and responsive to the patient's needs and choices, which suggests framework instead of either pathway or plan.

    Pirate

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  • Pirate and Parrot | 15-Jul-2013 2:01 pm

    whatever it is called it will be the same thing and get the same reactions.

    we just delivered individual care to each patient according to clinical need and patient's and or representives wishes which obviously had to follow a plan but as it did not have any specific name nobody queried it and people mostly were satisfied we were doing our very best for each patient.

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  • michael stone

    'the Nursing and Midwifery Council should urgently issue guidance on end of life care '

    I'll comment properly after I've read the report, but both Neuberger and Lamb commented on BBC radio 4 this lunchtime that unlike the GMC, the NMC had not issued much in the way of end-of-life guidance for nurses. While that explains where some uncertainty might be coming from, I would comment that there are reasons why it is harder to write guidance for nurses than for doctors re EoL.

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  • michael stone


    My comments on this report (which I’m typing as I read it) will be lengthy – so, I’ll post them in sections. This is the first section. I'm quoting from the report (with page numbers), then adding my observations directly afterwards.

    Even with patients suffering from terminal conditions, it is common for there to have been no discussion with patients, their consultants or GPs, relatives, and carers, about preparing for dying. (p3)

    I have commented on this – see ‘link 2’ below.

    To understand better how criticisms of the LCP were arising, the Review panel considered the LCP within its wider context. This gave rise to some underlying problems of definition and terminology. ‘End of life’ can mean any period between the last year of life of a person with a chronic and progressive disease to the last hours or days of life. Unless this lack of clarity is addressed … (p5)

    I have banged on at length about this: ‘expected to die’ does not mean ‘expected death’ for the purpose of CPR/VoD protocols, end-of-life can mean ‘has got a terminal diagnosis’, ‘is expected to die within a year’ or ‘is expected to die within 6 months’ depending on who the author is, etc. The terminology is a total mess !

    The term ‘Liverpool Care Pathway’ is extremely unhelpful and should be abandoned. Within the field of end of life care, the term “pathway” should also be avoided, the simple term ‘end of life care plan’ being the suggested alternative. (p5)

    I don’t like ‘plan’ for ‘the dying phase’ either: as I sent to a couple of contacts this morning:

    ‘According to yesterday’s Mail, on Friday night Norman Lamb, our care minister, vowed that whatever replaces the LCP it will definitely not be called a ‘pathway’.

    I have mixed feelings on this one, but I dislike ‘pathway’ and even worse is ‘plan’ – my ‘mixed feelings’ stem from the obvious correctness of ‘planning for the future’ in the sense of anticipating likely events in the future, and setting in place ‘the ability to make probable future choices, when the time arises’: but I don’t like ‘EOL Plan’ because it can be seen as ‘something to be put into effect’, as opposed to proper EoL care which involves continually checking with any still mentally-capable patient ‘Is this going well for you – should we be doing something different ?’.

    I have struggled with ‘names’ – I suppose I’m fairly happy with Advance Care Planning for everything before the ‘dying phase’ (because that is much more about ensuring that the system is properly co-ordinated to provide future care), but the best I can come up with for the dying phase would be ‘National End-of-Life Framework’.

    I know the anti brigade would leap on ‘end-of-life’ again (in NEOLF), with ‘you are setting out to kill patients’, but there is no other way of making it clear to relatives in particular, that this is all about ‘the most likely outcome (of this clinical situation) being death’.’

    There are no precise ways of telling accurately when a patient is in the last days of life, and the LCP document acknowledges this. (p6)

    As I wrote in my submission to the Neuberger review (link directly below):

    http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=676&forumID=45

    ‘Very few people are very good at handling uncertainty, and clinicians are always trying to improve the accuracy of clinical prognoses. There are also wider-life uncertainties, involved in decisions which are in anticipation of the future.
    But, it is important to place these uncertainties correctly: they form part of the things the decision-maker considers, in reaching his or her decision. So, returning to section 14 of that GMC guidance, clinical uncertainties are to be described as such, within the information about clinical outcomes (14(b)) that mentally-capable patients use in deciding which, if any, treatments to accept (14(c)). It is important to note, that this is not ‘shared decision making’: the patient makes the decision, the clinicians provide clinical information’

    One of the central issues causing difficulty in the use of the LCP seems to be misunderstanding and uncertainty over whether deciding to implement the LCP is a treatment decision, requiring the patient’s consent or requiring the decision to be taken in the patient’s best interests if they lack capacity (p6)

    This is absolutely crucial (also for things like CPR decision making) and it just isn’t properly described within most clinically-authored literature – It is DESCRIBABLE but not briefly, and I’ve written it up properly (if anyone e-mails me, I’m happy to send the ‘write up’). See, as a ‘strong hint’ the NHS Choices page at:

    http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/Problems.aspx

    and I briefly discuss that page in my submission to the LCP.

    Refusing food and drink is a decision for the patient, not clinical staff, to make. (p7)

    Yes !

    Any attempt deliberately to shorten a person’s life is illegal, but there is no obligation, moral or legal, to preserve life at all costs. (p8).

    This is an area which is complicated – we should be much clearer about this, and move to ‘the French position’ for clarity (I believe our existing law is consistent with the ‘French position’ but some people disagree with me, and many more are just ’legally nervous’):

    http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=680&forumID=45

    No matter how much effort is put into training clinicians in good communication skills, unless everyone in society – members of the public, the press, clinicians, public figures – is prepared to talk openly and honestly about dying, death and bereavement, accepting these as a normal part of life, the quality of care and the range of services for the dying, their relatives and carers will remain inconsistent. (p10).

    I would direct the reader to my comments in BMJ online:

    http://www.bmj.com/content/347/bmj.f4085/rr/652862 (link 2)

    Time is running out, more comments will follow.

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  • Tinkerbell

    Anonymous | 15-Jul-2013 2:00 pm

    I sincerely hope you get some honest answers.

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  • how come it is the ministers pronouncing on the end of life care and not those involved - clinicians, patients and families?

    I don't want Cameron and Hunt deciding on how I should die!

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  • Anon 2pm
    You are either trolling or lying.

    I heard Baroness Neuberger ( or whatever) apparently one of the problems was that when relatives were told that their loved one was going onto 'The Liverpool Care Pathway' that a lot of them thought that their loved one was being moved to Liverpool to die!

    Obvious stupidity aside, did they think that this LCP was pulled out of some tramps back pocket and ironed? No, it was something that evolved ( and was still evolving) over many years by the staff most used to palliative care.

    Demonising it was a ruse by the Tories and the Mail to pretend to the populace that the NHS wanted to actively kill them, and we need to get rid of these murderous clinicians. Lets see the feckers cry about the NHS when their kid has leukaemia and they have to sell their house to cover a tenth of the insurance. Of course, Circle/ Virgin have only our best wishes to heart, and whatever pittance they make will be ploughed into giving patients a free days telly.

    As an addendum, see that one of the Tories in the DoH helping decide to give Circle £1.2 BILLION in contracts has been given a little job for his unswerving incorruptability, 10 hours a month for £50,000 a year. On top of the £65,000 plus we already pay him for about 10 hours a month as an MP. No zero hour contract for him.

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