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Are you adequately trained to discuss dying, death and bereavement?


Next week 16-22 May is dying matters awareness week, the theme is ‘why dying matters to me’


Have you received adequate training to discuss dying, death and bereavement?

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Readers' comments (7)

  • I could definitely use some more training

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  • I have made sure I have accessed the appropriate training and read widely about these issues because end of life care is a vital part of a nurses role

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  • More than adequately trained and experienced thanks, but I'll never say no to ongoing learning or updates if you are going to offer it for free because there's always something new to learn or reflect on.

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  • i totally endorse Mike's comments. Experienced ,yes, but always open to learning more and new from others especially if it is offered free for the benefit of the patients and a well informed profession. It should be remembered that every journey with a patient who is a unique human being is a new experience to be learned from.

    interestingly in the poll up to the present there are marginally more positive than negative answers

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  • michael stone

    If most nurses are adequately trained, then the fact that there is a lot of evidence to suggest that district nurses avoid mentioning the word 'death' is a bit of a mystery !

    Mind you, the current guidance about patient confidentiality, conflicts with the requirements of the MCA if a patient is at home, his family carers are not welfare attorneys, and the patient had previously asked for his clinical condition to be kept confidential.

    In that situation, the existing version of the Joint CPR Guidance tells you that it is essential to discuss the patient's likely wishes about CPR with his relatives, but at the same time that you should not disclose any clinical information (a paradox, which I have pointed out to the BMA, and which will I hope be properly resolved, and not fudged as it is at present).

    And, almost nobody within the nursing profession, appears to have read the sections of the Mental Capacity Act which mention welfare attorneys, or section 42 (which excludes relatives who are NOT welfare attorneys, from any guidance beyond the Act itself).

    Welfare attorneys do not 'speak as if they were the patient' - welfare attorneys carry out the best interests assessment, then issue instructions to everyone else involved (technically, a welfare attorney can issue an instruction that a treatment must not be carried out: clinicians decide whether to offer a treatment) and the MCA says 'follow the instruction, or immediately challenge it in Court'.

    And the MCA does not actually say, that other relatives cannot make best interests decisions (a rather heated topic, between the Head of End of Life Care at the DH, and me !): your further guidance states, or implies, that, but the MCA just uses the term 'person' in section 4, and the MCA applies to everyone !

    Well, that was free - you may, or may not (do the reading, if you are interested: start with the MCA 1(5), sections 4, 5 and 6, and 42 - if you want to, you can easily read sections 24 to 26 {which cover Advance Decisions} and you will discover the Act says something different to your clinical guidance about ADRTs, as well !) decide it was informed.

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  • michael stone

    I have made my usual typo above - in the first 'conflict' scenario, the patient must also have lost mental capacity (became comatose for example).

    There is, of course, no conflcit while a patient is mentally capable - he refuses anything he dislikes, himself !

    Sorry about that - I am clearly getting too old, to think and also type !

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  • michael stone

    If you care to actually read the Mental Capacity Act Itself – admittedly, a somewhat novel approach to learning about the MCA, within nursing circles – you will discover (these are in no particular order) that:

    1) although everyone is obliged to obey the Act, because it is a law, nurses need only ‘have
    regard to’ the Code of Practice and any further guidance (section 42 (4)).

    2) only certain categories of people, need to ‘have regard to’ the Code – relatives, and family
    carers who are NOT welfare attorneys, do not need to follow anything beyond the Act itself.

    So, the first area of difficulty: professionals must have regard to the Code and further professional guidance, but relatives and family carers do not have to pay any attention, at all, to any of that stuff.

    3) section 4 of the Act, does not define a test for ‘best interests’ – it outlines a list of things, that a decision-maker must consider: without having attempted to consider those things, a decision-maker cannot claim to have complied with the best interests test.

    4) if someone makes a decision, and he or she has complied with the guidance of section 4, the decision-maker does not need to prove the correct decision was made: the decision-maker, need only defend his ‘compliance with section 4’ (see section 4(9) of the Act).

    5) whatever has been discovered, or ‘decided in advance’, and written down, is not relevant to the behaviour of a decision-maker, except as part of his knowledge: your decision, must be made on the basis of what you yourself know, when you make a decision (section 4(11)a) – basically, this is saying that being up-to-date, over-rides anything out-of-date but written down, or agreed in advance.

    6) the Act does not, at all, even attempt to explain what happens, if there are several different people present – it sticks, within section 4, to the singular for ‘decision-maker’. There is, by virtue of section 42, a method for imposing a decision-making hierarchy (well, a ‘pseudo hierarchy’, because of ‘have regard to’) within those persons who are within the compass of section 42. It usually comes out, as ‘doctor at the top’. But there is absolutely no reason, if you read the Act, to believe that doctors can somehow tell relatives what to do, or vice-versa – it just isn’t there, in the Act itself.

    7) what the Act is clear about, in terms of ‘authority’, is that Welfare Attorneys and Court Deputies make the best interests decision, if any are present (the Act does not explain what happens if several Welfare Attorneys have joint and several powers, and disagree – you need to work that out, for yourself). But the Act does not give ‘authority’ to anyone else, except via section 42, and section 42 only allows for a type of ‘pseudo-authority’, and only over certain types of people.

    In general terms, and missing out the reading list, there is a problem stemming from the fact that neither the Act, nor clinical literature, defines the best interests test. I am mainly interested in the test for CPR, and the literature for CPR does not clearly define a test for ‘best interests’.

    That, does not fit in, with the attempt to introduce ‘evidence-based behaviour’ into clinical practice. If one imagines two GPs, whose patients were identical in terms of ‘presentation’ (so, we are considering a hypothetical ‘multiple-universes’ situation – or, written scenarios), then the principle behind ‘evidence–based behaviour’ is that for identical situations, the GPs should provide identical treatment.

    Unless each GP applies the same best interests test, it seems unlikely that they would reliably provide the same treatment (or make the same CPR decision) – so, clinicians should get together, and properly define a best interests test for CPR, which they believe is consistent with the CPA. Which has not been done, so far.

    In my opinion, this is the only test consistent with both the MCA and the right of mentally capable patients to refuse treatments:

    ’If I am certain beyond reasonable doubt, that this particular patient, if he understood the clinical consequences of attempted CPR, would refuse CPR if he were somehow able to refuse CPR during the CPA under consideration, then I must not attempt CPR: otherwise, I must attempt to preserve his life‘.

    And anyone who is faced with a patient in CPA, must apply the test in two stages:

    A) Do I understand enough, for me to defensibly consider the Mental Capacity Act’s best interests test (for CPR, that is ‘am I certain beyond any reasonable doubt, that the patient himself would have refused CPR, if he were able to do that during a CPA’) ?;

    B) If I believe that I am sufficiently knowledgeable to consider the best interests test, I must act on the basis of what I consider the patient would have said if he were asked directly and he were able to answer (here, ’do you consent to CPR being attempted ?‘): otherwise, I must attempt to preserve the patient’s life.

    That does not necessarily require a clinician, because clinical knowledge is not always necessary – you might be certain, that the patient would refuse CPR, whatever had caused a CPA. It might require clinical knowledge, if the patient’s refusal depended on how much clinical damage, the CPA and subsequent CPR would leave him with (because most people, would refuse CPR because they didn’t fancy the state they would probably be in, after CPR – that is what is relevant, if CPR is attempted). Or it might require knowledge, of something non-clinical – for example, a patient might have indicated his refusal of future CPR ‘as soon as I have signed my new Will’.

    As a closing thought, have any readers, worked out that the historical concept of ‘acting in a patient’s best interests’ no longer exists ?

    It has been established, both legally and in recent GMC guidance, that a mentally capable patient makes his own decision about whether to accept or refuse a treatment. And, since the MCA, there is a legal test (if not very clearly defined) for the treatment of mentally incapable patients – you must act in accordance with the requirements of Section 4 of the Act.

    So, capable patients decide what is in their own best interests (to be more accurate, capable patients simply decide – there is no suggestion, that a patient has to act in his own best interests: the legal requirement, is only that the patient understands the clinical consequences of refusing the treatment) and, for incapable patients, you have to follow a legal test: I reckon, that the ‘historical concept’ of best interests, has been pretty much made an irrelevance !

    New dawn, new day, new exposition !

    The overall analysis of EoLC – partly because of some legal complexities, and drafting difficulties for parts of the MCA – can get very technical, involved and lengthy. But the following ‘ethical argument’ might just work, for nurses.

    Once-upon-a-time, under English law, wives were the property of their husbands – someone could sell his wife, to another man.

    We changes that – it became ‘an offensive concept’.

    Similarly, there was a historical ‘attitude’ that doctors understood their patients’ best interests, better than the patients themselves. The law has moved on, and if one carefully reads the law itself, that is now, in legal terms, ‘an offensive concept’.

    The law has now made it quite clear, that the over-riding principle is that patients make their own quality of life assessments: patients ‘own their lives’. Clinicians offer treatment, and describe the clinical consequences of accepting or refusing treatment – but the patient then assesses how those consequences fit in with his wider-life considerations, and the patient then makes his own decisions (however stupid, a decision may appear to anyone else: that isn’t a factor, and patients are not ‘wrong’ because they turn down a treatment, which most people would accept).

    The problem, in part (there are other problems), is that clinicians, and clinical guidance, has not caught up with this, yet – it is getting closer, but it seems to hit a brick wall at the point where it should explicitly state ‘our role is to describe clinical factors, and to offer treatment: our role is not to get into patients’ minds, or to make decisions on their behalf’.

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