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Call for 'urgent guidance' on end of life care for nurses


The Nursing and Midwifery Council has come under the spotlight for not providing guidance for nurses who deliver care to terminally ill patients.

An independent review into the Liverpool Care Pathway, published yesterday, concluded there was a “lack of guidance”, particularly for nurses.

The review, chaired by crossbench peer Baroness Julia Neuberger, calls for the Nursing and Midwifery Council (NMC) to “urgently” provide guidance for nurses caring for people in the final weeks and days of their lives.

“There is no specific NMC guidance for nurses caring for patients at the end of life or who are dying, although such guidance from the GMC (General Medical Council) exists for doctors,” the review’s report stated.

“This may explain, at least in part, why the review panel heard so many examples of poor quality nursing for the dying. The NMC must provide such guidance as a matter of urgency,” it said.

Baroness Neuberger added: “The GMC has taken the lead on this and nurses are by far the largest part of the health care work force.

“We think it’s a crying shame that there has not been more nurse leadership around these issues,” she said.

The review heard evidence of nurses shouting at relatives of patients placed on the pathway for attempting to give them drink.

The review panel said that nurses should demonstrate “proficiency in caring for the dying” as part of the revalidation process - set to be rolled out by the NMC by the end of 2015.

Care and support minister Norman Lamb said he would write to the NMC to “highlight both 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”.

The panel said it had uncovered issues “strongly echoing” those raised at the public inquiry into appalling care of patients at Mid Staffordshire Foundation Trust.

The report stated: “Among the 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.”

The review also raised concerns that the accompanying documentation used when a patient was put on the pathway was not always filled in properly.

It said: “There may have been reasonable explanations for this, but it provided resonances with the Mid Staffordshire Public Inquiry’s findings, and the review panel recommends that the professional regulators must take stern action with individual doctors and nurses where there is evidence of the deliberate falsification of any document or clinical record, in order to deflect future criticism of a failure of care.”

An NMC spokeswoman 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.”

She added: “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.”

Dr Peter Carter, general secretary of the Royal College of Nursing, said: “We are pleased that this independent inquiry has looked so thoroughly into the principles and experiences of the Liverpool Care Pathway.

“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.

“We would also welcome the opportunity to be involved with the development of these proposed changes, using the experiences and expertise of our members to benefit patients and relatives.”

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Readers' comments (7)

  • This will no doubt be another excuse the nmc will use to hike up OUR fees, the LCP has failed because of lack of training, poor guidance and lack of staff.
    All in-patients already have a senior clinician in charge of their care - the Consultant, who is responsible for speaking to patients and relatives (with patients consent if possible) and being honest about the prognosis and illness.
    There should always be a clear plan in the notes so that when a patient deteriorates 'out of hours' the on-call senior doctor knows what to do, not leave it for some poor junior doctor to sort out without any support or guidance.
    There should be an end of life team available 24/7 including doctors and nurses who can come and see the patient, speak to them and their relatives and support the staff. There should be senior doctors available 24/7 to make decisions about deteriorating patients.
    The LCP could have been an excellent guide but many people seemed to misunderstand it including the media.
    Some people have commented that patients on the LCP rally round for a short while - could that be because they are relaxed and painfree?

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  • national guidelines and guidance are being allowed to override commonsense at the cost of patients' health and lives, presumably to cover the backs of those following them.

    see story in today's telegraph of ambulance call operator and gp who followed national guidance instead of hearing the patient and his urgent needs. this 41 year old man died of an MI associated with an obstruction of the pancreatic duct when he eventually reached hospital after a long delay and ridiculous questionning by both these supposedly trained staff died shortly after his arrival. who cares? it is time people who claim to be healthcare professionals woke up and pulled their socks up and call centre staff knew their role and its limitations. it is not their job to attempt to make a clinical diagnosis over the phone but to establish the priority of the need of an ambulance besides what about docttor patient secrecy she does not need to know his whole history and clinical details to order an ambulance. you do not fool around with other peoples' lives!

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  • michael stone

    This one isn't very fair - the 'hierarchical structure' in healthcare, combined with huge complexity about the legal framework around EoL, makes it hugely difficult to write clear, concise, comprehensive and legally correct EoL guidance for nurses.

    The guidance is necessary, but incredibly hard to write !

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  • Isnt it obvious what nurses should do, don't we treat the patient as an individual and treat their individual symptoms?
    The NMC are useless, why involve them.
    What we need is for people like MacMillan, Heart Foundation etc. etc. offering training an support to healthcare workers so that doctors and nurses feel confident in looking after patients towards the end of their lives, not another set of 'guidelines'.
    We need to employ specialist nurses and doctors (used to be called palliative care) who are available to see patients, relatives and staff at any time of the day or night.

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  • The NMC is a disgrace. Would any nurse disagree? How could you argue at length otherwise? Reform, please! It will happen. This is not about the fee. It is about the right thing to do.

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  • michael stone

    Anonymous | 17-Jul-2013 10:07 am

    'We need to employ specialist nurses and doctors (used to be called palliative care) who are available to see patients, relatives and staff at any time of the day or night.'

    I feel sure the Neuberger report commented on the inadequate contactability of EoL experts 'OOH'.

    Re your:

    'Isnt it obvious what nurses should do, don't we treat the patient as an individual and treat their individual symptoms?'

    I agree with you and so does the Neuberger report - that is exactly why it believes the LCP must be thrown away (because in practice, too many clinicians are failing to personalise their behaviour to the needs and wishes of the patient).

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  • To be fair to NMC, they have been told very firmly by their regulator to concentrate on Fitness to Practice hearings (about conduct) and NOT to involve themselves in things like practice guidance, which are said to be the remit of professional bodies like RCN. It would be a wasteful nonsense for all nurses to have to demonstrate EoL proficiency for revalidation, regardless of where they work. What about people like HVs, who have to revalidate as nurses but not involved in EoL at all?

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