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End-of-life care manifesto won't succeed without community nurses

  • 14 Comments

The government must invest “energy and real money” into the district nursing workforce, one of the authors of a new initiative to improve palliative care in primary care settings has warned.

The Royal College of Nursing and the Royal College of General Practitioners last week jointly launched a seven-point “charter for end of life care” detailing what patients should be able to expect from practice nurses and GPs. It is to be hung in every GP practice in England.

It includes commitments to provide a written record of terminally ill patients’ wishes to all those involved in their care, to protect their dignity and sense of control, and to support their loved ones.

It also commits practice teams to listen to patients’ wishes about end-of-life care, help them identify choices, ensure their remaining days are as comfortable as possible, and ensure they receive all the specialist care and “emotional and spiritual support” they need.

But, speaking at the launch of the charter, RCN primary care advisor Lynn Young warned: “General practice cannot actually do this on its own. General practice has to be working very, very closely and in harmony with their local community nurses.

“The principles and values in this charter can only happen in reality if community nursing teams have the resources needed to do the job, and those relationships between community nurses and general practice are what we would want them to be.”

She called for the Department of Health to put “some energy and real money” into “rapidly expanding the district nursing workforce”, with a campaign similar to its current drive to recruit 4,000 extra health visitors.

She added: “The worry that many of us have is that community nursing today is not in a robust state.”

Ms Young said “it really, really grieves me” that while the massive investment in the NHS over the last decade had seen “huge rises” in hospital nurses “the number of district nurses has actually significantly dropped over the last decade”.

  • 14 Comments

Readers' comments (14)

  • michael stone

    Sounds like a good idea - at the moment, almost nobody seems to actually mention the 'D' word ! (Death).

    It would be nice, if 'the rules' for incapable patients and Advance Decisions, were also properly understood and applied in line with the law itself !

    I'm strictly an amateur, but an annoyed one (and this is something of a specialist area, of mine !).

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  • It's about time that a call came to increase District Nurse numbers. It is madness that with more care being delivered in the community that DN courses are being sidelined and the specialist practitioner role is being eroded. District Nursing should be a model for all the NHS, we are highly responsive, don't have waiting lists and are prepared to tackle anything that comes our way. It is just a shame that our dedication gets taken advantage of.

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  • Agree with above, we also do not refuse to visit a patient even if we are pushed to the limit. Practice nurses can say no to more being added to their daily appointments but surgeries seem think that community nurses can just see a patient the same day despite our already heavy workload.

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  • michael stone

    This is cheeky, but I am desperate for some ‘viewpoints’ from operational District Nurses, and clearly this piece has attracted some DNs.

    Any chance, of some answers from DNs to the following two questions ?


    Q1: How is a patient saying to his GP ‘I am forbidding any future CPR attempts’ any different from a patient saying to a relative who he lives with ‘If you think I have stopped breathing, do not phone anyone and just let me die in peace’ ?

    Q2: If a patient writes an Advance Decision which is intended to prevent future CPR attempts, must it specify a cause for future CPAs ?

    Answers from operational DNs, would be very much appreciated ! If possible, with some indication of ‘where the answer comes from’ (ie why you consider it to be correct).

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  • I would be happy to answer your questions but I am not sure I really understand them. Has some problem occurred with a GP supporting a patients DNR request? I think it is different for a GP but no less likely to happen. The second question I really don't understand - what does CPA stand for [sorry to be so stupid]. I may be lucky in my experience but we support our patients to stay at home and not have any heroic measures without too much fuss, although I admit I am talking mainly about the terminally ill and not any controversial cases.
    Sorry I can't be of more help.

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  • michael stone

    To Anonymous| 9-Jun-2011 7:18 pm

    By CPA I mean ‘breathing and circulation of blood have both stopped, but the person could still possibly be resuscitated’. CPR = cardiopulmonary resuscitation. I do NOT mean ‘impaired heart function’ by CPA – I specifically mean, the heart has completely stopped pumping blood.

    It is quite difficult to briefly and clearly explain why I became involved ‘in this’: lots of factors, much confusion, including non-aligned protocols and a GP who took a Friday off as the start of a long weekend in Europe.

    But I was my mum’s family carer as she died at home, she was ‘peacefully comatose’ for several days before she died, and I had asked the GP about when she died (although you say ‘if’ – nobody actually says ‘when’) and got ‘Call me at the Surgery, or tell the cover GP it was an expected death – there will be no police’. My mum died at 8-15 am, I wasn’t quite sure if the GP started work until 9 am, so I waited until 9 before I called her. GP on holiday, Surgery busy – receptionist told me to call 999, which I did. BIG MISTAKE !

    The Police, who were involved by a paramedic for reasons which included confusion but which are not clear (and he left his job, so cannot be asked), harassed me for 7 hrs, apparently mainly because they could not understand ‘why I had not called someone immediately’. Why, would I need to call someone immediately ? Absolute bloody madness, logically (there is, it turns out, some very strange psychology in there – but logically, that cannot be an emergency).

    This happened a week before Christmas 2008, and the PCT then annoyed me for much of 2009, during which I was very depressed. But, since the summer of 2009, I have been discussing EoLC behaviour with various people, notably the Head of End of Life Care at the Department of Health. But also the GMC, RCN, NMC, BMA, various consultants, etc, etc.

    Basically, I do not consider the existing guidance, is in line with the law itself. In particular, I have a problem with the current claims about the role and responsibilities of relatives and family carers who are not welfare attorneys. I also have concerns about ‘your’ existing belief set around CPR decision-making.

    I have managed to get some answers to certain questions from nurses who are EoLC Facilitators and a Macmillan Sister/LCP Facilitator, but so far no answers from typical operational District Nurses – and, I cannot work out (because my PCT has been un co-operative) why the DNs, who arrived during the fiasco after my mum’s death, were unable to get the Police off my back. I think some of the problems I experienced, stem from flawed ‘guidance and beliefs’ about ‘the rules for death’.

    Because of problems with terminology, it is very difficult to even phrase certain relevant questions, without including the answer (ie, my own answer). But, I am trying to get the answers from operational district nurses, to these and similar questions (because this discussion, hinges on the alignment of ‘belief sets’). I’ll lay some of the questions out, as concisely as I can, in the hope of getting some answers:

    Q1 If an End-of-Life Care patient is at home (ie someone who is anticipated as likely to die within 12 months), with a single family carer, and there is not any existing DNACPR decision, imagine that the patient initiates a conversation with his family carer one evening, during which he explains that he no longer wants CPR to be attempted. This conversation ends with the patient saying ‘I’ll sort this out when the GP visits tomorrow, but if you think I have stopped breathing before then, don’t call anyone and just let me die in peace’.

    What should the relative do, if the patient appears to have stopped breathing, before anyone else has been told of the conversation ?

    Q2 Imagine that an 85 yrs old man, has seen many of his friends ‘slowly rotting away in care homes’. He has decided, that if he has a CPA, whatever its cause, he does not want anyone to attempt CPR: basically, having considered the various risks and benefits, he has decided ‘If I am ‘immediately dying’, then I will declare my innings early’.

    What actual wording does he need to write on an Advance Decision refusing CPR, to indicate that he is refusing CPR irrespective of the cause of any CPA ? This is equivalent, to asking for the wording which refuses CPR for a ‘sudden’ death.

    Q3 The terms ‘expected’ and ‘sudden’ death, are widely used. Do you believe that they mean the same thing to different professionals, and do you think they have the same meaning in different parts of the country ?

    Q4 Do you believe that a welfare attorney ‘speaks as if he were the patient’, or do you believe that a welfare attorney ‘considers things and then issues instructions’ (technically, ‘issues refusals regarding treatment’) when the patient is mentally incapable ?

    Q5 If a suitably trained nurse is verifying a death, is the nurse connecting the death to a known illness, or is the nurse merely confirming that the death appeared to be from a natural cause ?

    Q6 An Advance Decision is a ‘legal instrument’. What is a DNACPR Order (if not signed by the patient) ?

    Q7 Does a patient need to give the reasons why he is refusing an offfered treatment, or to state such reasons on an Advance Decision ?



    ‘I do not know’ is acceptable as an answer, and any details of why you believe things (where the answer comes from) is also helpful. As would be ‘nobody has ever properly explained this to me’ or ‘I’ve never come across the question phrased that way – when you put it that way, I’m having problems working out the right answer’. I am currently sending feedback to the BMA’s Ethics Adviser who is engaged in a revision of the Joint CPR Guidance, and where DNs get their beliefs from, is one of the (many) things I think needs looking at.

    I sent out a Survey by e-mail to PCTs, with similar questions attached as a Word file, and the first question was equivalent to Q1. But I asked ‘what should the relative do ?’ and also ‘what would (ie in real-life) the relative do ?’. Answers of interest, include these, to ‘should’:

    From a Consultant in Palliative Medicine, 27 years experience: ‘Wait and call GP later to certify the death’. In fact, the GP would need to decide whether to certify the death, as I had not stated this was an ‘expected’ death.

    From an EoLC Facilitator, 26 years of nursing (4 years Community Nursing (DN), 11 years Specialist Palliative Care, 5 years GSF/EoLC project work: ‘If an Advance Decision to Refuse Treatment (ADRT) has not been made and the father has not verbalized his wishes to a professional involved in his care then the son would have to call 999 as his conversation with his father has not been witnessed and not evidenced as “in his best interests”’.

    From a disgruntled paramedic of 15 years experience: ‘Preferably make a quick note in care package AND/OR do not call 999.’

    The paramedic’s answer to ‘would’ (what does happen, as opposed to what ought to happen) was: ‘Most people will call GP/District Nurse/Macmillan Nurse for advice, and invariably be told to call 999.’


    This paramedic said he had been banging his head against a brick wall for years about these issues, and he ended his returned Survey (I asked if people wanted to receive feedback) with:

    ‘I DO NOT WISH TO RECEIVE FEEDBACK, AND I HOPE AN AMBULANCE IS NEVER CALLED FOR ME OR MY FAMILY.’

    As a closing comment, the 3 very experienced nurses who replied to my survey, seemed to struggle with these questions – so, if you find them tricky, it is not you, it is a deficiency in your training regimes ! Paramedics find them equally awkward. Only the Consultant Doctor seemed to have essentially the same answers as my own.

    But, at home, relatives are faced with DNs and paramedics – not consultant hospital doctors !




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  • michael stone

    I am not online at home, and e-mail from a library computer.

    The previous post was typed up at home, after I read the yesterday 7-18 pm post this morning.

    I am part of an e-mail discussion group (which I manoeured into existence) discussing EoLC beliefs and behaviours, including guidance and CPR/VoD protocols, and besides me it includes the Head of EoLC at DH, a Senior Lecturer who teaches NVoD courses and the legal aspects of nursing, the locla expert Paramedic in this area and the guy who is the lead on a CPR/VoD policy group in my local area.

    We exchange views, etc, and also relevant stuff from other sources (Office of the Public Guardian, etc).

    I myself, think that when people read guidance, what they 'see' is very influenced, by what they ALREADY believe to be true.

    Which is why I want to get some firm answers, to things like Q1 etc, from operational district nurses - I'm sure you see differnet answers to mine, and I'm trying to work out why that is. After all, if a patient or relative asks the same question, then he needs similar answers from GP, DN or Paramedic: it appears to be madness, if different professionals give dissimilar answers to the same question !

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  • To Michael
    I am an operational DN. Your response makes things clearer. I can only say that things are never black and white and I think that there will always be different ways to interpret things.

    I recognise the type of situations that you describe and have known of this type of situation, for myself I do see it as a failure to discuss and plan with patient and relative what to do in these situations.

    Where things go as you would want - i.e the patient dies peacefully, a health care professional is called and the death is verified this is because as a team it has been recognised that CPR is not appropriate, patient family, GP and DN's and the family are aware of what to do. The GP has informed the out of hours service that the death is expected and the relative has access to a 24 hour DN service who they contact if out of GP hours, whoever is contacted they are aware of the situation and act accordingly. As a DN I can verify death - ie confirm someone is dead but not in anyway determine the cause and I would only do that with a patient who was expected to die [as agreed with MDT and family as well as patient].

    I don't know if different people interpret the terms 'expected' and 'sudden' death differently but they are not unclear to me.

    In cases where an ambulance ends up being called inappropriately it is either because we had not prepared properly or someone gave bad advice to the relative at the time [I have known of both situations].

    As a DN I do not expect to be able to 'call the police off' if they have been called, I suppose in such matters you have to be aware that there could have been 'foul play' at least in principle, although you would expect that as soon as they were able to check with the patients GP things would quickly be wound up.

    If district nurses were not involved with the patient or did not know that the death was expected then they would be duty bound to say call 999, again what if there had been 'foul play'.

    If known to DN but death not expected I think that the same would probably be advised but it is potentially subjective depending on the patient, GP relatives etc. Sometimes one relative supports a patients wishes and another does not and this influences any decision.

    We tend to use preferred priorities of care documents to record patients wishes but they are only as good as the communication that exists alongside them.

    If an ambulance is called then that seems to me to be the thing that changes the death from expected to sudden and starts a chain of events that cannot easily be stopped.

    With a continuation of District Nurse training to specialist practitioner level and a good number of DN's working in community things can continue to improve. With the erosion of the DN role as is happening in a lot of areas where nurses work to a tick box formula then these gray areas are where problems will become more frequent.

    I am not sure if any of this helps, from what I can tell District Nursing can vary in different parts of the country and in my opinion does suffer when it is downgraded and becomes more task orientated. The number of qualified DNs to staff nurses and HCA's does vary quite a lot and from what I can tell does suffer when the number of DN's falls.

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  • michael stone

    If anyone wishes to understand the significance of Q1 to Q7, here goes.

    Q1 This hinges on ‘role’ and ‘decision making’. The basic questions are, can a patient refuse future CPR, and does a person need to base his own actions, on his own personal knowledge.

    Q2 That one is what it says: if an Advance Decision can be intended to forbid future CPR irrespective of the cause of any future CPA, what wording would ALL clinicians understand as meaning that ? But see below, for a more detailed discussion of this problem.

    Q3 This examines a person’s understanding of verification of death policies and behaviour (an area not at all helped, by the ‘caginess’ of Coroners).

    Q4 This tests understanding of the role of a welfare attorney.

    Q5 Related to Q3; understanding of VoD behaviour.

    Q6 This is a fascinating question, which leads to a very complicated answer if the answer is developed properly. The answer is pretty clear, but it simply is ‘not what clinicians would like it to be’.

    Q7 Exactly what it says.


    By the way, I have left out the really tricky questions: what happens if there are two welfare attorneys who disagree about a refusal of treatment, how does one deal operationally with what appear to be defects within the drafting of the rules for Advance Decisions (in the sense that the intention of ADRTs is clear, but the drafting seems to conflict with that intention), and has anyone correctly incorporated the Human Rights of bereaved relatives, and considerations of the mental vulnerability of relatives directly after a patient has died, into post-mortem behaviour ?

    I would also point out, as a personal aside (I realise this may not be true for most people, but it is true for me), that the Mental capacity Act is easier to read, and clearer in meaning, than its Code of Practice, and that the further guidance becomes increasingly less reflective of the Act, as well as less easy to properly understand, the further from the Act one goes. So the Act is best, then the Code, then the guidance gets increasingly more distorted as its intended readership moves from doctor, to nurse, to general public: and, out of all of those, for everyone the only ‘true law’ is the Act itself.

    Going back to Q2, and our 85 year old man, let’s consider his position, and his thinking. Although he may appear to be pretty fit and healthy, and perhaps is not being treated for any illness, he is 85 – his chances of having a sudden CPA, are far higher than those of a 25 yr old. Also, it is almost impossible to know what clinical shape, someone will be in after ‘successful’ resuscitation. So, perhaps an unexpected CPA, might result from an unexpected stroke – he may have a terror or ‘waking up in hospital, after a severe stroke, and spending his remaining life in a state of incapacity and misery’. So, because he knows that if his heart has stopped, and he is not treated, then he will almost immediately die, he has decided to refuse attempted CPR. Basically, he is refusing attempted CPR because he is willing to sacrifice any possible ‘good future life after CPR’ to PREVENT ‘a possible bad future life after CPR’.

    This does not make him suicidal, or ‘a palliative patient’. If he has a stroke which would NOT kill him, but would leave him alive but incapacitated, he would of course want as much active treatment as possible, to try and limit any clinical damage which he would then have to live with for the rest of his life. And, he may also be accepting as much active medical treatment as possible in his life, to try and stay as fit as possible. And, deciding ‘On balance, I would be happier if I did not wake up tomorrow’ is a lesser degree of ‘determination to be dead’ than suicide involves.

    The ‘system’ (GP all the way through to Police and Coroners) seems chronically incapable of dealing with our 85 yr old man, in a way which looks correct to both him and his relatives: I want that changing ! I might at some point in the future, be that 85 yr old man !


    If I get answers from District Nurses, I will elaborate on my answers to Q1 to Q7, with the ‘proofs’, after I have ‘harvested’ those answers from DNs.

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  • michael stone

    Anonymous | 10-Jun-2011 7:13 pm

    Just posted my pre-prepared elaboration, and am scanning your recent post. Re;

    As a DN I do not expect to be able to 'call the police off' if they have been called, I suppose in such matters you have to be aware that there could have been 'foul play' at least in principle, although you would expect that as soon as they were able to check with the patients GP things would quickly be wound up.


    this is what confused me at the time, and still confuses me. I called the DNs, just before calling the GP, to tell the GP my mum had died, so they need not call for their scheduled visit. Now, I ended up with a paramedic who expected to find something in the notes indicating 'expected death' status - I suspect he was used to sandwell, or soemwhere which had such a policy in place: Coventry did not.

    This guy proceeeded to immediately wind me up by insisting 'the death was sudden, just because I was called' (WMAS has confirmed that I told the 999 operator, that I was reporting a death, had been told to call by the Surgery receptionist, etc - apparently 'the system' did not allow this to be passed to the AS staff, so the paramedic believed he was attending an emergency).

    However, despite loads of 'confusion', about 15 minutes after my confrontation with 999 had begun, the DNs arrived. The DNs knew that my mum was a 'peacefully comatose terminal patient' for about the previous 3 or 4 days.

    WHAT MOTIVE CAN THERE BE, FOR EITHER MURDER OR ASSISTED SUICIDE ? The patient is about to die (no point to murder). The patient is not in any apparent suffering (no compassionate motive for assisted suicide).

    The GP was uncontactable in Europe, from the Friday until the following Monday (and, as soon as the GP reappeared, I got an immediate and deep 'apology' from the Coroner - AFTER I HAD SPENT AN ENTIRE WEEKEND INCANDESCENT WITH RAGE {whenever I was not either grieving or apathetic}).

    WITH HINDSIGHT every 'sane' person, who is not a Police Officer, does assume the DNs' arrival, should ahve sorted that mess out. IT DIDN'T SORT THE MESS OUT - WHY ?

    Please elaborate on:

    I don't know if different people interpret the terms 'expected' and 'sudden' death differently but they are not unclear to me.

    for me.

    By the way, the question of whether behaviour should be based on individual competence, principles and training, or 'tick-box rule following' is something which has much-exercised my/our discussion group. Basically, everyone seems to agree that competence and priinciples are the ideal, but it is obvious that 'tick box' is introduced because of worries about lack of competence and experience,a nd also for 'back-covering' purposes.

    This thing of 'suspicion' is a major bug-bear of mine; in particular, when a patient is at home with a relative, logically the relative can be told things (or observe things) BEFORE anybody else - 'the system' does not like that, as it is inconvenient.

    I want stress not on detailed methodology for record keeping, but on open discussion between GP+relatives+DNs, and the assumption that ALL of those people are trying to do their best, and ALL 'know what is going on'. Your protocols tend to introduce barriers between clinicians and relatives, which are unsound for death at home !!!

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