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Ministers confirm new procedures for end of life care

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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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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  • michael stone

    Section 2 of my comments on the report.

    There is no specific NMC guidance for nurses caring for patients at end of life or who are dying, although such guidance from the GMC exists for doctors. This may explain, at least in part, why the Review panel heard so many examples of poor quality nursing of the dying. The NMC must provide such guidance as a matter of urgency. (p10)

    As I mentioned in a separate post, this is tricky – not only is the requirement to justify any action taken, or action withheld, during the treatment of a mentally incapable patient something that falls on each individual who is faced with a choice to make, but in addition to that ‘the clinical system’ uses section 42 of the Mental Capacity Act (MCA) to try and ‘impose’ a decision-making hierarchy on professionals, invariably with a doctor ‘at the top’. This ‘hierarchy’ is standard medical practice – and because nurses are not usually at the top of that hierarchy, it is harder to write end-of-life guidance for nurses than for doctors (and even the guidance for doctors is somewhere between flawed and downright legally wrong, in places).

    I’ve read much of the guidance, and I would find it quite tricky to write concise, clear, comprehensive and legally correct guidance for nurses involved in EoL care, if I knew that guidance would be read and followed by ‘typical’ nurses who had not deeply thought about things like sections 1 – 6 of the MCA, etc.

    But adherence to guidelines cannot be enough: a system-wide approach to professional practice and institution provision, measurable and monitored, is required to bring about improvements in care for the dying. A strategic approach needs to be taken to the problem – a coalition of regulatory and professional bodies, NHS England and patient groups together setting clear expectations for a high standard of care for dying patients, as well as their relatives and carers. Such a coalition could lead the way in creating and delivering the knowledge base, the education training and skills and the long term commitment needed to make high quality care for dying patients a reality. (p10/11).

    This is effectively identical to something I have written re EoL at home {CCT = Core Care Team – defined as ‘The Core Care Team comprises the GP, the relatives/others who are living with the patient (live-with relatives, as shorthand, which I shall abbreviate to LWRs) and the regularly-attending District Nurses (DNs).}:

    The MDT approach, separates clinicians and (for VoD {Verification of Death protocol} design) other professionals, from patients and relatives, and consequently things such as EoL guidance and CPR/VoD policies are written by groups of, usually, only professionals. Also, hospital-based clinicians, perhaps because hospitals are inherently more ‘structured’ than primary healthcare, seem to be writing guidance which then ‘bleeds out into primary settings’: so hospital-based nurses and doctors, are formulating the behaviour sets for EoL patients who are in their own homes. Within a hospital, doctors and nurses are always present, and should be able to successfully implement ‘a known process’ – but EoL at home, should have a belief and behaviour set which is being designed by the people involved: by GPs, patients, LWRs, DNs and paramedics. The CCT concept, if adopted, would promote that change to the way guidance is created.

    … and tick-box exercises are confined to the waste paper basket for ever. (p11)

    Tick box does not work, for the ‘dying phase’: it is too complicated for ‘tick box’ and simply has to be based on correct understanding of the principles, clarity of the law (needs some work, there), and an understanding that this is about CARE NOT TREATMENT. By ‘care not treatment’ I mean that ‘care’ is what ‘is felt by the patient, and observed by the relatives’ – and if that ‘is bad’, then however ‘good in clinical terms’ any ‘treatment’ was, YOU HAVE FAILED (as clinicians).

    The Review panel feels so strongly about this that it is going to continue to meet at its own expense and volition, to monitor closely what happens next in response to its recommendations. (p11)
    The members of the review were obviously fairly deeply disturbed by what they came across.


    Both of these were commissioned by the Department of Health’s former End of Life Care Programme (p13)

    This is a personal comment – I’m not happy about this (the effective removal of EoL from the DH).


    The Review panel has identified that there is significant lack of clarity over the meaning of the term ‘end of life.’ Variously, ‘end of life’ covers the last year of life of a person with a chronic and progressive disease, the last months, the last weeks or – for the LCP – the last hours or days of life: in short, the dying process. (p13)

    I commented on this in my first sectional comment – it did not take a review, to notice that ! See also 1.10 and 1.11 on page 14.

    It is important to remember that the transitions on the timeline shown at the bottom of page 15, are ‘fuzzy’ and cannot be precisely defined while they are happening – the presence of this ‘fuzziness’ must be kept in mind.

    1.18 Due to this lack of clarity, the LCP is being perceived by some of its users – doctors and nurses – not as a document, nor as a guideline, but most frequently as a set of instructions and prescriptions, that is to say a protocol. (p16)

    Now, although I agree about that, we are straying into the absurd, here, because some ‘ab initio thinking’ makes it clear that (from my LCP submission):

    I think calling ‘the overall care’ ‘being on the Liverpool Care Pathway’ is conceptually confusing – all people are doing, is changing behaviour when the patient’s situation changes (from being cured, to dying, in essence).
    There are clinically-proven methods of providing palliation, but these need not only be involved in the care of the terminally ill: likewise, a patient is entitled to refuse some active interventions but accept others (it is reasonable in some situations, to accept all types of active intervention except for a blanket refusal of attempted CPR). The widespread confusion/conflation between clinical effectiveness, and a patient’s right to refuse interventions (a right which is ongoing and applies to each individual intervention), is probably one reason why the communication your webpage stresses as being so important, does not always occur – if every aspect of ‘the LCP’ were thought of as being a separate ‘intervention’, and it were understood that these individual interventions required patient consent, then surely clinicians would be more-or- less forced to talk to patients (or for mentally-incapable patients, ‘relatives’) ?



    These must be intelligible to all, from clinicians to members of the public. (p17)

    I agree with the objective – but that is a challenge !


    In respect of the name itself, therefore, the Review panel recommends that ‘Liverpool Care Pathway’ should be abandoned, and within the area of end of life care, the term “pathway” be avoided. An ‘end of life care plan’ should be sufficient for both professionals and lay people. (p17)

    I don’t like ‘plan’ (see section 1 of my comments) – I prefer ‘framework’, if this needs a name at all.

    There appear to the Review panel to be other significant gaps in evidence about the LCP. (p17)

    There are evidence gaps all over the place in end-of-life stuff.

    1.24 In view of this lack of evidence on the LCP and end of life care more generally, the Review panel recommends that the CQC and the Health Quality Improvement Partnership (HQIP), should conduct fully independent assessments of the roles of the healthcare professions in end of life care in England. Rather than focusing on process, they should focus on the outcomes and experience of care, as reported by patients, their relatives and carers, as well as the quality of dying. (p17)

    Cf my comment earlier:

    Tick box does not work, for the ‘dying phase’: it is too complicated for ‘tick box’ and simply has to be base don correct understanding of the principles, clarity of the law (needs some work, there), and an understanding that this is about CARE NOT TREATMENT. By ‘care not treatment’ I mean that ‘care’ is what ‘is felt by the patient, and observed by the relatives’ – and if that ‘is bad’, then however ‘good in clinical terms’ any ‘treatment’ was, YOU HAVE FAILED (as clinicians).

    See also 1.25 and 1.26 – this gives me the opportunity to introducehere something I wrote a while ago:

    Is a night out in the pub, a clinically-describable process of people getting intoxicated, or a social event ?

    Are the final months of a person's life, a clinical process - or is dying a process with huge 'social' implications ?

    If an 82 yr old man is in the final 6 months of his life, do he and his 79 yr old wife 'invite the professionals to help us', or does the wife simply hand over her husband to a clinical process and professional control of decision-making ?

    Nurses see themselves as advocates for patients: isn't the wife, the principal advocate for her dying husband, in this situation ?

    So, especially for end-of-life at home, isn't anything that departs from the concept of 'professionals and relatives know different things, but everyone is supposed to be co-operating to help the dying patient', fundamentally wrong, and fundamentally flawed as an approach to behaviour around the dying ?

    Don't we need to move away from MDT and 'us and them' (a sharp distinction between professional and lay) to 'everyone together' and 'us and us' ?

    And if the patient is at home, shouldn’t ‘us’ be the GP, live-with relatives and regularly-attending district nurses (what I call the Core Care Team: the group of people who can, because of physical opportunity, regularly talk to the patient and to each other) – and shouldn’t EVERYONE inside that group, be assumed by anyone outside it (for example, by a 999 paramedic), to know more about what ‘is going on and wanted in a holistic way’ than these ‘external people’ (irrespective of how many ‘processes and notes’ you put in place) ?


    It was also consistently shown, and all too frequently told of, instances where the form had been filled in wrongly – recording discussions with relatives or carers which they denied had taken place, or including observations that the relatives or carers believed had not been made. (p19)

    This REALLY ANNOYS me: there is no reason why both sides of a conversation, cannot sign something to indicate that a discussion has taken place – the NHS is hell-bent on preventing this, and by only ‘having records signed off by the clinicians’ abuse is obviously easier.

    1.31 The LCP document makes clear that the process of diagnosing dying includes a multidisciplinary team (MDT) assessment. It rightly reminds the team that it should seek the advice and support of the specialist palliative care team when there are areas of difficulty or doubt, and states that ‘once the clinical decision is taken, ‘patient, relative or carer communication is focused on recognition & understanding that the patient is dying.’ (p19)

    Growl – having directly above pointed out that ‘diagnosis of dying’ is an imprecise science, this should read:

    once the clinical opinion is established … that the patient is PROBABLY dying

    See sections 1.32 to 1.34 on page 20, and:

    The Review panel understands that tools for improving the accuracy of prognosis do exist, but that these are not yet, or indeed may never be, sensitive enough to identify reliably those who will die within hours or days. … Relatives naturally become distressed, and this is heightened if pain relief is not effective, and ‘normal’ drugs, nutrition and, particularly, hydration are discontinued. Doctors and nurses need to communicate with patients and relatives or carers far more honestly about the difficulties in diagnosing the dying phase, admitting to, and being explicit about uncertainty and dealing in likelihoods, not certainties. …

    See my earlier comments – the role of clinicians is to describe prognostic spectra with their inherent uncertainties, and the role of patients (or people ‘thinking like this particular patient would think’ if the patient lacks mental capacity, which will usually mean friends and family of the patient) is to consider whether or not to accept any offered treatments (this is further complicated for End-of-life by section 4(5) of the MCA, but that doesn’t affect the logic of how a section 4 decision must be arrived at).

    1.44 If a patient has capacity,35 they must give informed consent36 to any treatment they receive. If a patient lacks capacity, the Mental Capacity Act 2005 (MCA) applies to any medical decision that is taken on their behalf. The decision-maker – who will normally be the treating clinician – is under a duty to make decisions in the patient’s best interests. Crucially, the ‘best interests’ assessment under the MCA is not simply a clinical judgement about what the doctor thinks is clinically best for the patient. Instead the ‘best interests checklist’ in section 4 of the Act specifies that the doctor must also take into account the patient’s past and present wishes and feelings, and his beliefs and values. The doctor must also – unless it is impracticable and inappropriate – consult people involved in caring for the patient in order to help elicit the patient’s preferences and beliefs. The decision ultimately, however, remains with the clinician. (p22)

    ‘The decision ultimately, however, remains with the clinician.’ No – the MCA is very clear that if there is a suitably-empowered Welfare Attorney appointed under the Lasting Powers of Attorney Act, the decision rests with the Attorney. If there isn’t an attorney to whom the decision falls, it is very complicated indeed ! And this ‘best interests checklist’ does NOT appear in the Act: the Act has section 4, and reading sections 4 to 6, etc, one must work out how to comply with section 4(9) of the Act. This ‘section 4 checklist’ starts to appear in the Code of Practice, which of course is guidance and not primary legislation, and does NOT apply to ‘normal relatives’. I WISH CLINICIANS WOULD GET THIS RIGHT !

    1.46 On the other hand, for aspects of the LCP that do involve medical treatment – for example, starting, continuing or stopping the use of strong analgesia or sedation, artificial nutrition or hydration – discussion and consent will be appropriate. But, while any planned treatment requires consent or a best interests assessment, no clinician can be compelled to act against their patient’s best interests. (p23)

    The final sentence is meaningless – ‘acting against a patient’s best interests’ is only a meaningful concept if the patient lacks mental capacity, and if the patient lacks mental capacity and has not already issued a decision to be followed, then ‘acting against the patient’s best interests’ could only mean ‘not complying with section 4 of the MCA’: not complying with section 4 of the MCA, would leave you open to a charge of assault.

    As I wrote in May:

    http://www.bmj.com/content/346/bmj.f2656/rr/644149

    While it is true that the LCP is a framework (actually, merely a set of options) and therefore consent for 'being on the LCP' isn't necessary (whatever that means), consent is necessary for each of the actual interventions, as I understand English law ? Because an intervention without consent, is regarded as an assault.


    1.47 The Review panel concluded that the LCP document is deficient in making the distinction between treatment and non-treatment (to seek consent and/or to explain one’s actions). (p23)

    Yes – and so is almost every piece of clinically-authored guidance, that I’ve ever read (which is why I took the trouble to write it up, from the start, in my ‘Thinking Clearly’ series !).

    So what it then recommends: ‘The document should be clear about when consent or a decision taken under the MCA is required. This should be clearly set out in the information sheet for relatives, in the algorithm and under each of the relevant goals in sections 1 and 2, as a prompt to the lead doctor.’ is currently extremely challenging !

    The relative or carer may well have been involved in the day-to-day care of the patient for some time, and feel a strong need to continue this involvement as a member of the whole end of life care team. They may also be much better informed than professional staff as to the wishes and needs of the patient. (p24)

    The mental Capacity Act actually only offers one piece of guidance, about the meaning of ‘best interests’:

    4(6) He must consider, so far as is reasonably ascertainable—

    (a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),
    (b) the beliefs and values that would be likely to influence his decision if he had capacity, and
    (c) the other factors that he would be likely to consider if he were able to do so.


    ‘The relative or carer … may also be much better informed than professional staff as to the wishes and needs of the patient’ – READ SECTION 4(6) AND ‘DO THE MATH’ YOURSELF !


    shared decision-making (p25)

    This phrase is both meaningless in most situations and also very conceptually confusing in others – it should be BANNED !

    The Review panel has an issue with the concept of ‘withdrawing’ food and fluid: the desire for food and drink usually diminishes as a patient reaches the end of life, and they may decline what is offered. However, refusing food and drink is a decision for the patient to make, not clinical staff. (p27)

    I have ‘an issue’ with that, as well.

    There can be no clinical justification for denying a drink to a dying patient who wants one, unless doing so would cause them distress. The urge to drink when thirsty is very powerful and basic. Good mouth care if the patient simply has a dry mouth may well be sufficient, but to deny a drink to a thirsty patient is distressing and inhumane. (p28)

    Quite.








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  • michael stone

    Section 3 of my comments on the report.

    Failure to support oral hydration and nutrition when still possible and desired should be regarded as professional misconduct. (p28)

    Tick.

    It would appear from many accounts received by the Review that dying people were started on strong pain killers, such as morphine, and/or sedatives by a continuous subcutaneous infusion, as a matter of course, not because of a need for symptom control. … There have been too many people coming forward to the Review panel to state that they left their loved one in a calm and peaceful state, able to communicate, for a short time, or with a doctor or nurse for a check-up, only to return to find a syringe driver had been put in place and their loved one was never able to communicate again. (p 29)

    AND ALSO

    1.72 Not all dying patients are in pain: there are also some, for whom remaining lucid is their overwhelming priority; this is a position adopted by some religious traditions and by some individuals, irrespective of any religious belief. Whilst the principle of using a syringe driver at the right time is right and proper, too often it appears that a syringe driver is put in place as the ‘next step’ on the LCP, overlooking the needs and wishes of the patient. Many patients in the hospital setting appear to be put on a syringe driver with morphine, even if morphine is not the right drug, or pain relief is not what is needed. This is clinically indefensible.
    1.73 For these reasons, the Review panel recommends that, before a syringe driver is commenced, this must be discussed as far as possible with the patient, their relatives or carer, and the reasoning documented. (p 30)


    Attaching a syringe driver to a mentally-capable patient requires properly-obtained consent, which involves explaining the consequences of the action – so this isn’t a case of ‘clinically indefensible’, and ‘overlooking the needs and wishes of the patient’ isn’t ‘overlooking’ anything: THIS IS ASSAULT, PURE AND SIMPLE, IS ILLEGAL, AND IF THE ONLY WAY TO GET CLINICIANS TO OBTAIN CONSENT PROPERLY IS TO PROSECUTE SOME CLINICIANS, THEN SO BE IT !

    And ‘…only to return to find a syringe driver had been put in place and their loved one was never able to communicate again’ is totally unacceptable if ‘consent’ or ‘pseudo consent’ (the best way to think of section 4 of the MCA) has not been properly obtained/worked through.

    1.68 Some relatives and carers told the Review panel that they felt as though the administration of diamorphine had directly killed the patient. There is some controversy, but much misunderstanding about this. The Review panel is aware of clear evidence from a number of definitive studies that opiates and tranquillisers given in the appropriate doses to deal with the patient’s symptoms do not hasten death and in fact may prolong life. (p29)

    The question isn’t whether it can be proven that adequate pain relief can always be provided without taking some action which ARGUABLY might hasten death – the question is whether our law matches the ‘French position’:

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

    Section 14 of the report’s reference 39 explains with great simplicity, that the patient is the person who considers the risks and benefits of accepting an offered treatment (14(c)), after the clinician has explained the likely clinical consequences of accepting or declining any offered treatment (14(b)). As I wrote in my submission to the LCP:

    Consider morphine, being used for pain-relief. The pain could be during active treatment of another condition, or during palliative care. But there is nothing in the principle of Patient Consent, to suggest that the requirement to obtain consent to guard against a charge for assault, differs according to whether or not the patient is expected to live or die.
    There are also risks with morphine, which will tend to increase as dosage increases: at very low doses, there is little risk but also less effectiveness in relieving pain, at massive doses death would be almost certain – but there is a window between the two, where a dose of morphine sufficient to adequately relieve the patient’s pain, might carry a risk of causing the patient’s death. This is not unique, within medical practice: general anaesthesia always
    carries a small risk of death, but even so some ‘cosmetic’ surgery is performed under GA.
    Going back to section 14 of the GMC guidance (reproduced earlier) it is explained that the role of doctors is to describe prognoses and risks of offered treatments (and of no treatment): it is the patient who considers whether the risk is acceptable.
    Obviously, a person who is in the final stages of life, and in great pain, might very well wish to titrate his morphine dose against his experienced pain, with much less consideration of the ‘but at that dosage, it might actually kill me’ factor: a person who is receiving morphine for pain relief because of, for example, a badly broken but predicted-to-heal leg, would presumably be much more reluctant to accept any risk of the morphine dose being fatal.
    See, in this context, section 4(5) of the MCA (shown below): if the motivation is to relieve pain, and death in fact occurs, unless one were reasonably certain that death would occur, the death does not necessarily appear to be ‘illegal’.
    A friend of mine, died from cancer in 2008, and he was very clearly aware only of pain, during his final week or so of life – he was ‘screaming in agony’ but unaware of anything else in his life, apparently, for that final week.

    Note 49 on page 29 is a statement which introduces a paradoxical situation, based on the assumption that ‘Patient Confidentiality’ overrides the requirements of section 4 of the MCA – that is NOT a valid assumption to make. There is a technical discussion about the resolution of this (it involves section 3(4)(b) of the MCA and how that is to guide clinician-patient discussions) but it is probably too complex for Nursing Times, and it still does not resolve the issue (it leads to two possible situations, one of which is informing the patient that the doctor will be placing section 4(6) of the MCA above any obligation to follow clinical confidentiality).

    1.77 The professional guidance for clinicians on attempting cardiopulmonary resuscitation (CPR) is not clear. (p31)

    Indeed, and the rest of section 1.77 is legally flawed as well. The JUSTIFICATION FOR NOT ATEMPTING CPR goes like this:

    1 A face-to-face discussion with a mentally capable patient, which takes place during the clinical events which lead to his CPA, the outcome of which is that the patient issues a DNACPR Instruction which those who were involved in the discussion can interpret correctly

    2 An apparently valid and applicable Advance Decision refusing CPR which has not been discussed with the patient

    3 A DNACPR decision made and communicated by either a single Welfare Attorney (where only one has been appointed), or agreed and communicated by all Welfare Attorneys

    4 A DNACPR decision made by any person who is sufficiently informed of the patient‘s clinical situation and likely wishes, to enable that person to defensibly consider section 4 of the MCA.

    5 A DNACPR action, which is based upon information supporting the reasonable belief that something within categories 1 to 4 makes DNACPR the best available behaviour

    6 If none of the above apply, but it is clear that attempted CPR would be clinically futile, then DNACPR

    7 If none of 1 to 6 apply, CPR should be attempted

    The things usually called ‘DNACPR Orders’ fit at number 5, but these documents are currently legally ‘muddled’ because if they ’point at’ a written Advance Decision (ADRT), an ADRT fits at 2: and to further complicate things, the top-ranking justification is a face-to-face refusal of future CPR directly from the patient to someone who might attempt CPR, and that isn’t (because of the rules for ADRTs) a valid Advance Decision according to the MCA. Nevertheless, it isn’t defensible to claim that a clearly-elaborated verbal refusal of future CPR, after a face-to-face discussion with the patient, isn’t more legally binding than a written but un-discussable, valid and apparently applicable, ADRT which refuses CPR: I am DEEPLY DISTURBED that a large number of clinicians, and some other professionals, seem to believe in the logical absurdity that ‘A valid and applicable written Advance Decision refusing CPR is legally binding, but a verbal refusal of CPR is not legally binding’.

    THIS IS ENOUGH TO REDUCE ANYONE WITH REASONABLE LOGICAL THINKING SKILLS TO TEARS !


    There is much confusion amongst clinicians re 1.78 and 1.79, and there is a box on page 31 which includes ‘The nurse asked us if we wanted him to be resuscitated or force-fed, to which we replied that we did not… ‘. THIS IS THE WRONG QUESTION !!! The CORRECT question, and why relatives and friends CAN often ‘answer’ the MCA’s best interests test while clinicians CANNOT, is ‘If we could ask your (incapable) father would HE WANT to be resuscitated or force fed, are you reasonably sure of what he would decide ?’.

    You ask ‘those people who know the patient well enough, as an individual and not a clinical situation’, in order for them to validly ‘think as a ‘proxy mind for the particular patient’, ‘what would he say to us, if we could somehow ask him’.

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  • michael stone

    Section 4 of my comments on the report.

    2.17 Good documentation by clinicians is important, not only to ensure that those aspects of the end of life plan that do need consent or consultation under the MCA are properly authorised, but also because patients and their families are familiar with consent as a formal prerequisite of treatment, and where this does not happen, it may create the impression that the plan is something that is done to them, as opposed to being (as it sets out to be) something that happens in consultation with them. At the end of life, many patients and their families feel as though they have lost control over what is happening to them. Involving patients, their relatives or carers in discussions about the care plan is an important way of restoring a sense of control. Where a patient has no relatives or carers and so is unrepresented, the discussion about the care plan needs instead to involve a GP from their registered practice. (p38)

    I’m sorry to be blunt, but can we at least have logical consistency within paragraphs, please ?!

    ‘patients and their families are familiar with consent as a formal prerequisite of treatment’ does not lead to ‘Involving patients, their relatives or carers in discussions about the care plan is an important way of restoring a sense of control’ – it leads to control resting with the patient, not a ‘sense of control’ resting with the patient (at least for refusals of offered treatment).

    2.19 During the course of the Review, relatives told the panel about difficulty in communicating with busy clinical staff in a hospital, saying that they would welcome a system that recorded their contribution, and in which they themselves could comment contemporaneously on the care received. The Review panel therefore recommends that a shared care folder, kept at the hospital bedside and designed for communication between patients, relatives and the staff, should be introduced, supported by training for staff on how to use it. (page 39)

    A REALLY GOOD IDEA – and ‘how to use it’ is that patients, relatives (and other visitors if appropriate) and staff, all directly make entries in this folder: ‘…in which they themselves could comment contemporaneously’.

    The same thing (2.20) can happen at home, and EoL at home (as I keep telling people) is more complicated than within hospitals or hospices.

    2.24 Many of these elderly patients suffer from cognitive problems, including dementia, and are unable to express their wishes. Those who do not have close relatives and carers guarding their interests … (p40)

    This is revealing: against what or whom, are the close relatives and carers (absent here) normally ‘guarding the patient’s interests’ ? This is a tacit admission, that often relatives are ‘guarding a patient’s interests’ against a combination of ‘systemic stupidity’ and inappropriate behaviour from clinicians. WHY IS THIS NECESSARY ?

    … when choices between care for someone with reversible clinical problems and care of the dying exist, care of the dying seems to take a lower priority. (p40)

    I do not see how, if push comes to shove, prioritising treatment of someone with POTENTIALLY SERIOUS reversible clinical problems isn’t correct: avoidance of the under-staffing, has to be the target there.

    2.25 – 2.41: just read them, they are fine as they are, and fundamental.

    … in assessing and adapting care to an individual’s rapidly changing needs, (p 44)

    It should be clear – for example from the ‘timeline’ on page 15 – that ‘crucial changes’ can often occur more suddenly as the actual death gets nearer: so responses often need to become FASTER within the final days of a person’s life than was necessary previously. I don’t mean FASTER ACTIONS necessarily – I mean FASTER RE-EVALUATION OF ‘WHAT SHOULD BE HAPPENING NOW’.

    … it appears that some hospital doctors, no matter how senior, sometimes see communication as time-consuming and an optional extra, rather than at the heart of effective care. This is very disturbing. (p 45)
    Yes, very disturbing indeed !

    As part of this coalition, the CQC would collaborate with patient groups in defining what good quality end of life care services should look like and then inspect against those standards. … notable among the many similar themes arising were a lack of openness and candour among clinical staff; a lack of compassion; a need for improved skills and competencies in caring for the dying; and a need to put the patient, their relatives and carers first, treating them with dignity and respect. (p 48)

    Yes.

    The Review panel has made the recommendations in this report in the context of considerable concern that many of the problems in the care of the dying highlighted are due to poor understanding among clinicians of existing guidance in care for the dying, and a shocking unwillingness to discuss with patients, their relatives and carers the prospect of death. 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. (p 49)

    I’ve pointed people at my BMJ rapid response already:

    http://www.bmj.com/content/347/bmj.f4085/rr/652862






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  • michael stone | 16-Jul-2013 9:12 am

    does that include reviving a supposedly dying patent with beer as one of my clever colleagues did?

    she was in her mid 80s (the patient that is) and unconscious so we first gave two hourly mouth care with lemon and glycerine swabs and according to need

    when she was semi conscious and able to suck she was given slices of lemon and eventually teaspoonsful of fluid and then beer which she was then able to swallow

    eventually she was given small sips of beer until she could sit up in bed and drink half a glass herself and then a whole glass until she was pushing her zimmer up and down the long corridor (straight!) and otherwise unaided

    initial diagnoses before she fell into a coma and was thought to be at the end of her life, and accompanied by a nurse or doctor sitting continuously at her bedside over the course of several days, was multiple fractures including femur, pelvis and some ribs, after being run over by a car.

    individualised care at its very best in the days before it all became so protocolized and non-clinically managed, although we didn't know about the beer until she was already drinking half a glass and our elderly nursing colleague and bully who we didn't get on very well with had opted to take over most of her care and looked a little sheepish when we found out. She didn't let on until she saw the good results. The roguish grin on her face when the patient walked for the first time down the corridor was to be seen to be believed and our colleague went up greatly in the esteem of our multidisciplinary team!

    the reason for her sudden deterioration had been a serious sodium potassium imbalance!

    All of this had happened over the weekend and she had received the last rites and her family had been called from a great distance to visit her. At the end of the following week however we were able to discharge her.

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  • Let's hope this doesn't lead to staff not giving patients analgesia or sedation for fear of recriminiations.
    If a patient, dying or not, is in pain they should have analgesia, same with sedation if they are agitated and distressed, few people would have a problem with that surely.
    I have never met either a patient or a caring relative who wants to witness pain and distress at the end of someones life.
    Why can't a syringe drive just contain the drug that is needed, they don't have to have morphine if the patient doesn't have pain.
    I hope this 'debate' will also lead to more honest and open discussions about death, cpr, advance directives, the patients rights if there are family disputes, patients dying at a place of their choice, unlimited social and district nurse funding, appropriate treatment and tests.
    How did we manage before the LCP? other than give patients the Brompton Cocktail.

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  • Matilda McCrrimmon

    The reported misuses of the LCP are so far from my experience ,I wonder if I am using the same tool. Before introduction in my area there was an audit of previous end of life care .There was then staff education on the use of the plan and there is continual auditing of it's use on my ward. I have had no experience where patients who are able to discuss their care or have relatives available have not had it's introduction discussed with them, including our consultant phoning relatives abroad . On the pre-audit our end of life practise was of a high standard but there was gaps in our documentation . This is what I understand the LCP to be ,not a prescription but a tool for documenting care that is being given with prompts to ensure good practise .Things like signing that relatives had death certificate and Gp informed which may not have been documented in the past . I hope the Scottish government does not adopt stance being taken in England. I also wish the media would stop using NHS in headlines as there are now 4 distinct NHSs.

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  • it is going to be very difficult to deliver any sort of care and support to patients who are dying now under the watchful and highly destructive critical eye of the sometimes seriously misinformed public.

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  • Matilda McCrrimmon

    The reported misuses of the LCP are so far from my experience ,I wonder if I am using the same tool. Before introduction in my area there was an audit of previous end of life care .There was then staff education on the use of the plan and there is continual auditing of it's use on my ward. I have had no experience where patients who are able to discuss their care or have relatives available have not had it's introduction discussed with them, including our consultant phoning relatives abroad . On the pre-audit our end of life practise was of a high standard but there was gaps in our documentation . This is what I understand the LCP to be ,not a prescription but a tool for documenting care that is being given with prompts to ensure good practise .Things like signing that relatives had death certificate and Gp informed which may not have been documented in the past . I hope the Scottish government does not adopt stance being taken in England. I also wish the media would stop using NHS in headlines as there are now 4 distinct NHSs.

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  • michael stone

    'tinkerbell | 15-Jul-2013 5:40 pm

    Anonymous | 15-Jul-2013 2:00 pm

    I sincerely hope you get some honest answers.'

    So do I.

    'redpaddys12 | 15-Jul-2013 8:04 pm

    Anon 2pm
    You are either trolling or lying.'

    How exactly do you know that, red ?

    'Anonymous | 16-Jul-2013 10:08 am

    michael stone | 16-Jul-2013 9:12 am

    does that include reviving a supposedly dying patent with beer as one of my clever colleagues did?'

    I'm not sure what your question was - but I approve of her recovery. Not sure about this though:

    'the reason for her sudden deterioration had been a serious sodium potassium imbalance!'

    How come that hadn't been spotted sooner ?

    Anonymous | 16-Jul-2013 10:52 am

    Yes, that is the danger - I've just swapped e-mails with the former (her job was abolished) Head of EoLC at the DH, and both of us want EoL care to get better and not worse.







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  • "I'm not sure what your question was - but I approve of her recovery. Not sure about this though:

    'the reason for her sudden deterioration had been a serious sodium potassium imbalance!'"

    it was just to illustrate good plain old fashioned individualised care which I thought might shock you in the over protocolized NHS.

    I am glad you spotted the Na/K imbalance. good question which unfortunately I can't answer. could be because it happened over the weekend with inadequate staffing levels and nobody looked properly at the results. could be because it was in a rehab. clinic and not a hospital although neither of these are excuses. sometimes these things sadly happen and I think we were more concerned and focussed on a patient supposedly at the end of life in view of her age who had suddenly deteriorated and making her as comfortable as possible. I was very impressed by a young doctor who just sat with her quietly in a darkened room at the end of his busy working day and at the end of my shift that I took over from him and then she was accompanied most of the time after that.

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