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Government commits to ‘high quality’ end of life care by 2020


NHS and care professionals will be expected to “reflect” six new commitments in their work surrounding end of life care, the government has announced.

Made in response to an independent review of end of life care, they include having “honest discussions” with patients who are dying, better care planning and more “informed” choices on care.

The Department of Health set out the six commitments yesterday, saying they were intended to end “variation in end of life care across the health system by 2020”. In full, the commitments are:

  • honest discussions between care professionals and dying people
  • dying people making informed choices about their care
  • personalised care plans for all
  • the discussion of personalised care plans with care professionals
  • the involvement of family and carers in dying people’s care
  • a main contact so dying people know who to contact at any time of day

New measures will be developed to ensure local health and care leaders are meeting the standards expected of them, added the government.

It said plans were already underway to ensure experts could provide specialist support on end of life care by acting as a first point of contact for anyone who needed them, as part of urgent and emergency care hubs currently being developed in all local areas.

“Every person nearing the end of their life should expect a good death”

Ben Gummer

The experts would be available 24 hours a day, seven days a week to help with symptom control or deteriorating conditions late at night or at the weekend, as well as clinicians who had questions or needed additional support.

In addition, there will be a “focus” on improving the training for clinicians, including a national plan aimed at sharing best practice among NHS staff, said the DH.

Pilots in Southend and Airedale will be launched to trial new ways to support clinicians to initiate meaningful conversations with dying people about serious illnesses.

Department of Health

DH moves to quicken FtP process and end midwife supervision

Ben Gummer

A potential new role, a care coordinator, will also be tested with the aim of helping patients have more choice and control at end of life.

Meanwhile, innovative community care pilots, including 24/7 specialised nursing services for end of life care, will be tested in a number of areas.

Announcing the measures, health minister Ben Gummer said: “Our commitment is that every person nearing the end of their life should expect a good death: attentive, dignified and compassionate care.

“To do this, we will address poor care where it exists and accelerate improvement across the health and social care system in England,” he said.

The announcement by the DH was made in response to report – called What’s important to me: A review of Choice in End of Life Care – which was published in February 2015.

Published by an independent board chaired by Claire Henry, chief executive of the National Council for Palliative Care, it offered a blueprint for how greater choice in end of life could be achieved.

“I’m pleased by the overall vision set out in the government response”

Claire Henry

Among its recommendations were that each patient should be offered a care coordinator who would be their “first point of contact”, as well as a named senior clinician who would have overall responsibility for their care and their preferences.

In addition, it said there needed to be “more honest and open” communication about end of life issues, with better support for healthcare professionals and increased awareness among the public.

It also called for a new right in the NHS Constitution for everyone to be offered choice in the end of life care, and for these choices and preferences to be recorded in a personal plan of care.

Responding to the DH, Ms Henry said: “I’m pleased by the overall vision set out in the government response. They have clearly acknowledged our report, and taken its recommendations seriously.

“It will be vital that we continue to work with the government to ensure all these commitments are realised as part of all future care delivery,” she said.

However, another report, also published this week, warned that an overload of policy recommendations is making it harder for nurses and other health professionals in England to deliver quality end of life care.

Written by Sheffield Hallam University, the State of the Nations report looked at policy on terminal illness in all four UK nations. It found 76 different government publications relating to the subject had been published in England since 2004.

Meanwhile, draft guidance from the National Institute for Health and Care Excellence has outlined what the best palliative care for children looks like.

The draft emphasises the need for infants, children and young people to be treated as individuals and highlights the importance of children and their families being involved in decisions about care.


Readers' comments (48)

  • michael stone

    ANONYMOUS 7 JULY, 2016 6:53 PM

    There is some sense in that 'have a go at me' comment, but more 'Stone knocking'. It certainly doesn't make sense as a critique of my position - which is based on 'patients are individuals'.

    But I write about EoL at home - and the things that bother me, are outlined in my recent BMJ piece promoting 'law not ethics':

    I would like to understand these things, which are in that piece:

    The reason I am so keen on people sticking to the informed consent described in our English law, is not that I am ‘against happy endings’, nor am I sanguine about young adults, ‘exercising their legal right to kill themselves’. I am so insistent about the application of informed consent, because I became involved not in a general ‘ethical debate’, but in a debate about end-of-life behaviour. And the ethics which many professionals seem to apply during end-of-life, offend me. I am offended that most guidance seems to imply that if a terminal patient has clearly expressed a refusal of a future treatment to a member of his family, ‘somehow this counts less than if he had expressed it to a GP’. I am offended that even if I write a very clearly worded Advance Decision refusing cardiopulmonary resuscitation irrespective of why I arrest, if I arrest at home and the death could not be certified, attending 999 paramedics would be likely to ignore my instruction and would probably attempt CPR. I am offended that for known end-of-life but not yet ‘expected’ home deaths, the police tend to become involved, and to treat the family as if they are suspects – but I feel sure that deaths which happen in identical clinical situations, but in hospital, do not result in the police attending and interrogating the nursing staff. These things all offend me, and they also ‘offend my ethics’. My ethics include things such as ‘no accusation without some evidence’: people should be assumed honest until proven otherwise; decent end-of-life support for patients requires that clinicians and family carers should be working together; etc. So my ethics, appear to be different from the ‘ethics’ of 999 paramedics, police officers, etc.

    If my [hypothetical] 82 years old, but seemingly ‘healthy’, father had made it very clear to me that under no circumstances would he want CPR to be attempted, I might not think he was making the ‘right decision’ but I would respect it because it is his life, and he would experience the consequences if he arrested and CPR was attempted – if he collapses, I tell 999 paramedics that he had made it clear to me that he would never want attempted CPR but the paramedics attempt CPR, ‘then I’m not happy with the ethics of 999’.

    When EoL patients are at home, and capacity has been lost, discussions about ‘what should happen’ can lead to disputes, for example between a GP and a family carer. The only thing I am 100% certain of, is that a family carer’s ‘well, I’m not going to do that, because my dad made it perfectly clear to me he would have refused [that course of action]’, is legally (and in my opinion morally) correct. It has to be legally correct: because it follows the fundamental ‘a person is sovereign over his or her own body’ legal principle. There is no such clarity, once ‘professional ethics’ [and professional objectives] are applied to disputes between relatives, clinicians and police officers: and while ‘arguing the ethics’ with a GP is one thing, ‘arguing with police officers about ethics’ is a wholly unsatisfactory experience (for a live-with relative), immediately after a death, and when ‘the police officer is confused’.

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  • Why do we need another six (6) list of how to give good care at end of life? Do any of these expert panels look at what is already 'out there' as far as initiatives and policies and guidance? We have had the '6 Steps for End of Life Care (2008) from the NEoLC strategy. We have had the 6 C's for care from the NMC (as a response to the Francis Report 2005-2013). We have the 5 Priorities for Care of the Dying Person (Leader Alliance for Care of the Dying, 2015). We have the 6 Ambitions for Palliative and End of Life Care (National Palliative and End of Life Care Partnership, 2015-2020) Do we really NEED another set of six statements???? Let's just start to DO the Care and Change the culture of care!!!!!

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  • michael stone

    ANONYMOUS 8 JULY, 2016 10:52 AM

    I'm not entirely sure - but I think your 'It is doubtful you have in depth knowledge of CPR and its consequences ..' was aimed at me.

    No, you are quite wrong - I am perfectly aware of the consequences of attempted CPR [which is why I'm angered that our 999 paramedics still seem to default to CPR even when patients are known terminally-diagnosed]:

    I'm also a little unclear, how much of this thread is a discussion of behaviour here, and how much in Europe:

    'I had the privilege to be involved in for over 20 years in a 1,000-bedded state of the art university hospital In Europe'

    There is no reason to believe that behaviour is identical across national boundaries - and national laws [which DO affect the behaviour of clinicians] relevant to EoL differ even within the UK.

    JANE MARQUESEN: A very good question - but the new DH one, is not actually 'a new set of instructions'. What it claims to be, is effectively a response to things such as 'the 6 Ambitions for Palliative and End of Life Care' and it is the DH's explanation of how it intends to promote the things the earlier reports called for.

    But the DH is not promising to support all of the 'recommendations' in those earlier 'way forward' documents. For example, in 'Annex A' number 20 in response to:

    That the £130 million additional investment identified as needed to enable the national choice offer in end of life care to be made by April 2020 be identified in the next spending review.

    the reply in this new 'promises by the DH' document is:

    We are committed to improving quality and choice in end of life care as an intrinsic part of creating a modern fit-for-purpose NHS that delivers what people need from their health services. In our Mandate for 2016/17, we explicitly refer to end of life care and ask NHS England to improve significantly patient choice and quality in end of life care, including on people’s choices about where they would like to be cared for and die.

    Our plan for end of life recognises the changes underway in the NHS over this Parliament and ensures that end of life care is firmly embedded in the major problems NHS England is putting in place to deliver a transformed NHS.

    As a result, we do not believe that the specific costing proposals set out in the Review, which do not take into account the wider transformation agenda, represent the best way to ensure improvements in end of life care.

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  • michael stone

    By the way:

    ANONYMOUS8 JULY, 2016 10:52 AM

    8 JULY, 2016 10:12 AM

    It is doubtful you have in depth knowledge of CPR and its consequences which can be highly traumatic for a patient and their loved ones. It is not always successful, appropriate or in a patient's best interests and especially if there are clear informed instructions from the patient that this is not what they want.

    No - wrong ! In England, and it seems post-Montgomery, our law is unequivocally Informed Consent. If there is a clearly-expressed DECISION from the patient that CPR has been refused, then attempting CPR is unequivocally an assault on the patient.

    And I wish that people would stop 'muddling' 'best interests' and Informed Consent - mentally-capable patients 'just make their decision and express it' (they are NOT required to 'act in their own best-interests') and during mental incapacity, if best-interests decision-making becomes necessary (it isn't invariably necessary) then there is no legal concept of 'consent' because it has been replaced by a legal duty to satisfy section 4(9) of the MCA.

    I've explained this to BMJ readers at:

    It is staggering, as a 'lay outsider', to have discovered how many clinicians seem to struggle to understand sections 1-6 of the MCA! Even setting aside the ones who understand the MCA, but are resistant to applying the Act - see also:

    I'm very happy to argue the toss, about whether I've made any legal errors in either of those 2 pieces, with whomever it is who keeps telling me on this website 'that you've no idea what you are writing about'. Provided the person can provide a half-way competent rationale for his/her position.

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  • michael stone

    Proof reading - should have said above:

    No - wrong ! In England, and it seems post-Montgomery in the UK as a whole, our law is unequivocally Informed Consent.

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  • michael stone

    ANONYMOUS 9 JULY, 2016 11:18 AM

    Lots of truth in your post, unlike in some others. And lots of incorrect assertions, about my level of understanding, as well.

    Yes, you cannot ask a patient in CPA, if he would want CPR to be attempted. So, you must ask, or he must tell you, in advance - see:

    Part of your comment, fits in with my '999 paramedics cannot make defensible section-4 MCA best-interests decisions whatever documents you aim at them' argument: but, family carers, could make defensible best-interests decisions. Look at 'poser no 11' in my series at:

    If you can get the link to work in NT. Links sent to BMJ always work - but not invariably here on NT.

    But what really raises my hackles, is that many professionals seem to consider that family carers can legitimately be distrusted by default:

    As for 'then you might understand what you are talking about' well - I do understand, what I'm talking about:

    And I do 'argue about ethics' - see the very contemporary:

    which was posted on theBMJ only yesterday - and which is an invitation for a discussion about law and ethics 'I've been having with' David Oliver to continue via BMJ rapid responses.

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  • michael stone

    There is something unedifying, about anonymous name-calling.

    Anyway, getting back to end-of-life.

    It is clear – and I base this not on NT but on much wider observation – that either contemporary judges and I (we usually seem to agree about the law), or else a lot of clinicians, have got things wrong. It isn’t all that easy, to contend that as a body most judges have got the law wrong: the simplest contention, is that for various reasons, the beliefs of many clinicians have not yet caught up with our law.

    I’ll get to CPR as a special case (actually, ‘the easiest to analyse’ case) later, but the law is basically very simple, and very clear in what it does tell us, and what it doesn’t tell us. The appropriate law is the Mental Capacity Act, and what we know about the MCA is:

    1) Mentally-capable patients make and express their own decisions – the role of clinicians is to inform the patient of clinical factors such as prognoses. This is described in section 3 of the MCA – you can call it Patient Autonomy or Informed Consent, or Considered Refusal. It is NOT ‘shared decision-making’ if by that term there is any implication that the decision is made by more than one person – the decision [about whether to accept or refuse any offered treatment] is unequivocally made by the patient. The MCA is only law in England and Wales, but the Montgomery ruling applied informed consent in Scotland [and from a time before the MCA].

    Many clinicians seem to think that informed consent is only valid if the patient is fully informed – this simply isn’t the case. The law is based not on the patient ‘knowing everything’ but on the premise that the clinician must, to have obtained valid consent, have told the patient about all clinical factors (which the clinician is aware of) which might have affected the decision the patient reached. An identical concept can be found in section 25(4)(c) of the MCA. Conceptually, you can imagine a doctor offering a treatment, and the patient saying ‘no’. The doctor can keep adding a series of ‘are you aware that ...’ bits of information, and the patient can after every new bit of information just say ‘no – I’m still refusing that offered treatment’.

    Mr Justice Peter Jackson explained in one of his rulings:

    "JB is not required to understand every last piece of information about her situation and her options; even her doctors would not make that claim.”

    Mr Justice Jackson also made clear the distinction between the law, and the ‘ethics’ which doctors usually prefer to law:

    "The temptation to base a judgment of a person's capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided.

    That would be to put the cart before the horse or, to put it another way, to allow the tail of welfare to wag the dog of capacity.”

    It isn’t at all obvious – there are in my view strong reasons to believe that the opposite is legally true – that a patient ‘is required to explain why he/she decided as he did’. I think there is absolutely no requirement, for a patient to explain ‘why I decided as I did’ (and that is interesting, and challenging, as soon as such a patient loses mental capacity – think about 4(6)).

    2) The patient autonomy of 1), can be projected into future periods of mental incapacity anticipated by the patient, for refusals of potential treatments by means of Advance Decisions, or the patient can appoint a Welfare Attorney to make any required best-interests decisions.

    3) Welfare Attorneys and Court Deputies are the only people the MCA gives legal POWERS to re best-interests decision-making – the Act imposes a legal DUTY on anybody who makes a decision to satisfy 4(9). But I cannot find anything in the Act itself, which restricts who can make any best-interests decision (most clinicians disagree with me – they can never prove by pointing at the Act, where I’m wrong).

    4) The MCA covers ALL ‘consent law’ for adults: it is Informed Consent during mental capacity, and section-4 best interests during incapacity [unless the patient has already made and expressed the necessary decision]. This doesn’t – interestingly – cover all LEGITIMATE decision-making, but it DOES cover all ‘consent’ law. The bit it doesn’t cover, is the ‘we couldn’t afford to offer you a potentially effective treatment, because it would cost too much, and the NHS ‘has to be fair to all’’ aspect.

    5) Unlike patient autonomy during capacity, nobody is at sure sure about ‘the rules’ for best-interests decision-making in terms of any analysis of ‘the ‘correctness’ of the decision’. The law isn’t framed in those terms (i.e. it doesn’t describe decisions as either good or bad) – all we really know about MCA best-interests decision-making is:

    a) the decision is very strongly connected to the patient’s personal (not clinical) individuality;

    b) whatever satisfactory best-interests decision-making involves, a typical layperson must be able to arrive at satisfactory best-interests decisions (this immediately logically follows from the provision for Welfare Attorneys to be appointed – and it follows from the provision, not whether or not there actually is a welfare attorney appointed).

    If you think I’m right, or might be right, the following elaborate a bit – and if you think I’m wrong, you won’t follow up any of these

    What is special about CPR, is that the clinical outcome of an arrest and CPR which does then re-start the heart, is so uncertain that it cannot be usefully described by any clinician in advance: this makes it much easier to think about whether you would decide to forbid future CPR, than if for example you were thinking about a stroke which might happen in the future.

    The thing clinicians seem to find the most difficult to accept, is the logical consequence of Informed Consent:

    FOOTNOTE: the earlier links to my Dignity in Care pieces do not work in NT. But the ‘guts’ of one thing I tried to link to, is so thought-provoking that I’ll copy it here:

    Should decisions be made by whomever is logically the best-qualified to make the decision, when several potential decision-makers are present at the same time ?

    I was recently sent, as part of a longer e-mail from a consultant hospital doctor, and in the context of a wider discussion hinging on the differences between patients who are at home and patients who are in hospital, the following:

    'The common law already provides for the "necessity principle" where doctors can apply life saving treatment to people acutely ill and at serious risk without knowing whether or not they would consent because the patient is too ill to do so and they don't have time to find out or anyone to ask (e.g. in someone bleeding to death or with dangerously low sugar readings or fitting repeatedly)'

    Now, I agree about this principle, but I'm usually discussing behaviour for patients who are on some sort of 'end-of-life register': and, I often discuss the situation of patients who are at home, 'collapsed and unconscious', and when 999 paramedics and family carers are involved. The question, is rather more complex than 'does 'necessity' exist ?' - the question, is 'when is 'necessity' justifiable ?'.

    The legal defence of 'necessity' is based on 'justifiable ignorance'.

    The legal protection the MCA offers to a decision-maker, is based on the application of an 'adequate understanding of the situation' and the ACQUISITION OF THAT UNDERSTANDING is an 'implied duty' within the Act.

    If an unconscious patient arrives at A&E unaccompanied, necessity has to apply.

    If an unconscious patient arrives at A&E accompanied by a family carer, the question is does the family carer's understanding of the situation make an application of 'necessity' inappropriate ?

    If a patient who is on some sort of 'EoL register' collapses at home, and a family carer calls 999 to be more certain of the medical situation, isn't the family carer's decision about what should happen next (a decision, which the carer MUST defend in terms of the MCA's test - as a long-term carer for the patient, a failure to satisfy 4(9) of the Act 'would be negligence') logically 'better' than any decision made by a 999 paramedic which would be defended by 'necessity' ?

    PUT SIMPLY, isn't a decision made by the person who understands the situation best (there, the family carer – providing the paramedic provides details of the medical situation) the best decision available ?

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  • michael stone

    Apologies - a combination of an annoying office programme, and my own inattention, means some of those BMJ links are faulty. The first 2 should have been:

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  • michael stone

    Will you PLEASE stop doing this NT - it appears (again !) that you have been removing posts from this thread, WITHOUT leaving a 'comment removed' marker!

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  • michael stone

    Even better - will NT please leave alone comments which are 'having a go at me' because I don't them removing: and as I seem to be the target, if I'm not bothered, why is NT taking them down ?

    'Leaving gaps' where there used to be comments, destroys the coherence of the discussion thread - sometimes it really 'screws up any attempt to follow the debate' and it needs to have a really good justification in my opinion (and insulting me, isn't a good enough justification, in my opinion).

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