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Community nurses under pressure over end of life chats

  • 11 Comments

Community nurses may be being put under pressure to probe frail and elderly patients on their end of life wishes without the right support and training, say palliative care experts.

The warning comes amid growing concern – and mounting complaints from patients and relatives - about the way these sensitive conversations are being handled.

In one distressing case brought to the attention of Nursing Times an elderly man in a rehab unit told his wife not to bother buying him some new slippers because he was convinced he was about to die.

England’s chief nursing officer Jane Cummings recently pledged to review an official questionnaire that prompts district nurses to discuss resuscitation with vulnerable patients following “disturbing” accounts the questions were being asked in a “blunt and impersonal way”.

Since then more evidence of poor practice has emerged including practice nurses cold-calling patients to broach subjects such as continuation of treatment and preferred place of death.

Ruth Nicholls, a palliative care clinical nurse specialist working in the South East, told Nursing Times she was horrified by the way conversations were being approached – often by inexperienced nurses.

One upsetting example involved her brother-in-law who has heart problems and lives in the north of England.

“He came back from an outpatient appointment having not had very good news and later that afternoon got a phone call from one of the practice nurses at his GP surgery,” Ms Nicholls said.

“She said ‘Hello, we’re ringing all our patients with chronic conditions to see how you are and whether you have you thought about resuscitation’. This conversation was absolutely out of nowhere. My brother-in-law was shocked and my sister was distraught.”

Ms Nicholls also described the case of an elderly man in the South East who had just come out of hospital and was asked about resuscitation by a newly-qualified nurse who had come to his home to do a continence assessment.

“He had never had any contact with the district nursing team before and one of the first questions he was asked was whether he wanted to be resuscitated,” she said. “These are conversations that need to be had but with the right person at the right time and not just to tick a box. People are being left in great distress.”

As part of the new GP contract practice are required to collect information about how patients with long term conditions wish to be cared for in a bid to avoid unnecessary admissions to hospital.

Amanda Cheesley, the RCN’s lead on end of life care, told Nursing Times she feared practice nurses might be under pressure from hard-pressed surgeries to quickly gather data.

“I hope these are isolated incidents but we need to find out more and we are keen to hear nurses’ experiences,” she said.

“I suspect some GP practices already under pressure feel this is just another thing they are being asked to do and are simply handing questionnaires to practice nurses alongside a list of over 75s and telling them to go through the questions with them. People may not be thinking too hard about what it is they are asking.”

Claire Henry chief executive of the National Council for Palliative Care said if conversations were not tackled in the right way it was distressing for patients but also “destructive for nurses who want to do a good job”.

Examples gathered by her organisation include one patient who was devastated when they were invited to attend an “end of life clinic” because they had no idea their condition was life-limiting.

She said it was vital all nurses got training on how to tackle difficult conversations.

“It is all about building that relationship up with someone and having these conversations in a timely way,” she said.

“The nurses who are being asked to do this need to challenge it and ask for more support in having these conversations.

“All the professionals involved need to look at how they are working as a team and where the opportunities are to have these discussions say if someone’s coming in for a GP or outpatient appointment and also how to have these conversations over a period of time.”

  • 11 Comments

Readers' comments (11)

  • My 90 year old mother was sent a standard letter and form to fill in with the said question over resuscitation.
    Whilst some may know this should refer to CPR only, others will worry that it means any acute condition will not be treated when they did not realise they were terminally ill/approaching end of life. Will the answer to the question lead to withdrawal of all active care?
    Patients will be influenced by how the question is put and the views of the HCP on the patient's current quality of life, regardless of how the patient sees it for themselves.
    What happens if the patient later changes their mind?
    Is the form geared to preventing hospital admissions to save money rather than what is best for the individual person depending on how they are at the time?

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  • michael stone

    Two points, about this:

    'Ruth Nicholls, a palliative care clinical nurse specialist working in the South East, told Nursing Times she was horrified by the way conversations were being approached – often by inexperienced nurses.

    One upsetting example involved her brother-in-law who has heart problems and lives in the north of England.

    “He came back from an outpatient appointment having not had very good news and later that afternoon got a phone call from one of the practice nurses at his GP surgery,” Ms Nicholls said.

    “She said ‘Hello, we’re ringing all our patients with chronic conditions to see how you are and whether you have you thought about resuscitation’. This conversation was absolutely out of nowhere. My brother-in-law was shocked and my sister was distraught.”'


    The first point, is the personal experience of Ruth Nicholls - it is remarkable, how being personally involved, 'sharpens the mind'.

    The second crucial point, is the 'inexperienced nurses' observation - probably entirely out-of-their depth, and they shouldn't be thrown in at the deep end, on this one.

    However, something has got to be done, about the reluctance to establish whether elderly, frail or dying patients, would want for CPR to be attempted: numerous reports, have made it clear, that not finding that out, is a problem.

    Exactly how the issue is raised, is the tricky bit.

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  • We have, in part, created the problem here as with the advent of medical care and people living longer, we talk less and less about death and dying, so is has and remains a taboo subject.
    Of course it needs to be done with great sensitivity and tact, but I agree with my colleague above, it does have to be done.
    The counter-balance of it being done unwell is the elderly and frail or any patient with a life limiting condition, innappropriately admitted to an acute hospital when their preferred priorities for care are to either remain in their own home or anywhere other than an acute setting.
    'Transforming end of Life care in Acute Hospitals' (NHS End of Life Care Programme), illustrates perfectly the need for the 'AMBER care bundle' along with 'Advance care planning' to be implemented into acute settings so we can begin to address patients preferred priorities for care and share in these difficult areas of communication. Likewise in the community I know that it takes time, but sensitive communication doesn't have to take hours, but should not be a check list neither.
    Macmillan took years to become part of the media, likewise no doubt end of life will too, but we need to accept death as a normal part of living and start to discuss it.
    After all, it is the only certainty we all have in life!

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  • My daughter is severely physically disabled and has a tracheostomy. Whenever we have to attend A&E with chest infections we are offered death before antibiotics.

    When I object to this even being proposed I am always told 'we have to ask'.

    Well ask away guys - because in future the asker will have their name noted from their ID badge and will be reported to their professional body!

    It's the only way to stop this madness!

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  • michael stone

    P Duffield | 10-Sep-2014 6:42 pm

    You did not include enough information, for anybody to properly consider your grievances - however, it certainly looks as if 'being offered death before treatment' could be entirely inappropriate.

    And I'm not a nurse or a medic - I'm also 'at the user end' of the NHS.

    You need to decide what to do, for yourself. But what I would do, in your situation, is this:

    1) Carefully note down who said what and when (actual phrases, not 'just what you think they meant') and then send your objections about the behaviour DIRECTLY to the organisation's Chair and Chief Executive - I would AVOID the organisation's 'formal complaints procedure' like the plague !

    2) I would ask my GP 'can you explain to me, why this keeps happening, and how can it be stopped from happening ?'.

    However, I doubt that whatever you do, it will result in something that you would regard as an acceptable outcome. And don't expect to get much 'sense' out of things like hospitals 'as entities'.




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  • Michael - yes we know that complaints procedures within hospital trusts are pointless - which is why our preferred option on any future indidents of 'death before anitbiotics' will be referred to professional bodies. Sending direct to CEO just results in more bullying of the patient and family.

    Not the place of any medic to judge quality of life!

    Of course when you object to being asked you get the 'we have to ask' response. Do you suppose anybody here will explain where the order to ask originates? ;-)

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  • michael stone

    Hi 'P'.

    The point is, the NMC and GMC will not resolve your issues - they will come up with 'our clinicians have to follow their own guidance'.

    I'm pretty deeply involved in a debate about end-of-life guidance, especially for patients who are at home, and one of the serious problems there (one among many !) is that 'talking about death' is such a taboo subject, that elderly people who wish to be 'left alone to die in peace' frequently end up being rushed to hospital by 999 Services.

    I must admit, the first I knew of this 'guidance telling nurses to ask' was when these pieces in NT started to appear. The LACDP's advice about behaviour when patient's are 'end-of-life' (which means, loosely, 'within their final year of life') does strongly prompt clinicians to try and discover whether patients would want to be resuscitated or not - but it does look as if there has been some specific guidance issued, and I'm not sure what that is.

    However, as I sent part of this discussion, and the first 4 posts, to Bee Wee (NHS England EoL Clinical Lead) and a few other people yesterday, I might ask whether there is some recent specific 'instruction' about this. I might ask my nurse-lecturer contact, if she knows about this guidance.

    The PHSO complaints procedure, was useless when I tried it late 2009, as well.

    I am 100% with you on this:

    'Not the place of any medic to judge quality of life!'

    I'll use your latest post, with its:

    'Of course when you object to being asked you get the 'we have to ask' response. Do you suppose anybody here will explain where the order to ask originates? ;-)'

    to pose the question.

    But it is complicated:

    http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?forumID=45&obj=viewThread&threadID=741

    I wrote in that piece (and this is for incapable patients who were prviously capacitous):

    The bit the system 'cannot stomach' is that the important ability, is not the description of the clinical situation - the IMPORTANT bit, is the ability 'to think like the patient'. And EACH of those family and friends, can INDIVIDUALLY claim 'to have arrived at a defensible best-interests decision' provided they are reasonably sure of what the patient would have decided (see section 4(9) of the MCA). It isn't a case of 'everyone getting together, having a discussion, and then a specific individual 'making' the best interests decision (unless there is a welfare attorney, a court deputy, or a judge): the logical reality, is that each of the people who can legitimately 'think like the patient' HAVE ARRIVED AT a best interests decision, IF THEY BELIEVE 'that I know what he (the patient) would have decided'.

    But 'where asking comes from' is better explained in one of my BMJ pieces:

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

    I would still, go for the CEO - if people lower down the chain try to bully you, then you should be 'bullying' the CEO: although it would be much better IF EVERYONE JUST GOT ON WITH HELPING PATIENTS AND PEOPLE TALKED TO EACH OTHER PROPERLY !

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  • michael stone

    Hi again 'P'.

    I've just sent e-mails to a nurse who is also a senior lecturer, and to two nursing professors, asking if they know of any 'specific instruction' telling nurses to ask about CPR.

    If they get back to me, I'll post the answer(s) here.

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  • The CEO is quite capable of ordering the bullying to occur! ;-)

    My stance is more about A & E - where death is offered before antibiotics simply because the patient has a pre-existing disability. This is discrimination at it's worst and rather than following 'guidance' staff should be blowing the whistle on such barbaric practices.

    Mmmmmm - now isn't 'not blowing the whistle' a matter for professional bodies? ;-)

    Do you suppose that docs in A&E have any understanding of disability at all? How can they ask that treatment with antibiotics is withheld based on disability? For example, on one occasion my daughter was clearly fighting hard to stay alive but this was not even noticed - treatment was not started until I had been 'asked'. More recently I was 'asked' in A&E and I politely informed the doc that he is not Richard Dawkins. Shortly afterwards I was 'asked' again on the ward. I suspect that doc will have a lasting memory of our conversation! ;-) Of course, this will ot stop the next person 'asking' !

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  • michael stone

    Hi P.

    Docs in A&E, probably have only limited understanding of disability. I've discovered that many Palliative Care Consultants who write guidance about the Mental Capacity Act, are very unclear and often wrong, about the Act. And that the 999 Services, have got a very poor understanding, of what end-of-life at home involves.

    What happens, is that clinicians - especially non-specialists and more junior clinicians - 'get tied up in tick-box red-tape'. A GP sent me something a couple of weeks ago, which explains the problems they face fairly well:

    'I recently had MCA training and it was made clear that the hope of the act was that it would be empowering of the patient and perhaps the development of the IMCA role demonstrates that aspiration.
    We also have the whole 'safeguarding' agenda pushing in the opposite direction.

    So they get told contradictory things: there, patient self-determination, clashes with 'safeguarding'.

    The 'nurses asking about CPR wishes inappropriately or too 'bluntly' apparently comes from GPs being told they need to find out if elderly frail patients, would want to be rushed to hospital, or just left to die in peace, if they arrest at home. WITHOUT adequate consideration, of the complexity of 'asking that question'.

    Your problems - as you pointed out - seem to involve the issues with 'quality of life', although this medical concept of 'not extending a death' might be intruding, as well.

    It is horribly complicated, and HCPs frequently get it wrong - mind you, it isn't always easy, to see what 'getting it right' amounts to !

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