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NHS trusts warned not to repeat mistakes in end of life care


The mistakes of the past in the care of dying patients could be repeated if staff are forced to rely on formal processes rather than focusing on outcomes and informed judgment, warn researchers.

A study, by an expert in palliative care medicine from King’s College London, has assessed why the controversial Liverpool Care Pathway failed and recommended how hospital trusts might avoid similar pitfalls.

“Inadequate education and training meant they grasped onto the pathway as a kind of crutch rather than using it as the guide it was intended to be”

Katherine Sleeman

Dr Katherine Sleeman said the two key messages from her study – published in the journal BMJ Open – were a need to improve formal education and training in what is a “good death” and for a “reorientation away from processes to outcomes”.

Dr Sleeman’s research includes interviews with 25 NHS staff including 13 nurses as well as doctors and allied health professionals in 2009, prior to the outcry against the pathway and its subsequent abolition.

The interviews were carried out as part of work to improve end of life care at King’s College Hospital NHS Foundation Trust, but have not been published until now.

Dr Sleeman said: “What this paper really highlights is that if people don’t know the fundamentals of how we care for the dying, whatever tool you give them it is unlikely to be used very well because no piece of paper can replace good clinical judgement.

“People really liked the LCP because it helped with processes – it made things clear and consistent,” she told Nursing Times’ sister title Health Service Journal.  

“Those things benefit the healthcare professional,” she said. “What was interesting was that no one said they thought it benefitted patient deaths, suggesting the healthcare professionals who were using it were focused too much on processes and not enough on patient outcomes.

“This was particularly strong in more junior professionals, suggesting that inadequate education and training meant they grasped onto this as a kind of crutch rather than using it as the guide it was intended to be,” said Dr Sleeman.

“We need training in what is a good death, what does it mean for patients and what questions might we ask of patients”

Katherine Sleeman

She added that interviewees talked about receiving “piecemeal” education and training in palliative care.

“If people don’t have that comprehensive basis of education and training they’re unlikely to use any care pathway well, they are much more likely to rely on it as a protocol rather than a guide, and more likely to use it poorly,” she said.

Dr Sleeman said better education and training would help staff “move away from thinking they’ve done the right thing because they’ve prescribed morphine, towards thinking they’ve done the right because their patient had pain and now that pain is better”.

“We need training in what is a good death, what does it mean for patients and what questions might we ask of patients,” she said.

In May the health service ombudsman issued a report saying too many patients were dying in the NHS without dignity and the Care Quality Commission is currently reviewing the state of end of life care services across the NHS which is expected to be published later this year.

Trusts have also been tasked with formulating their own replacements for the LCP, after it was withdrawn following a critical review by Baroness Julia Neuberger in 2013 – itself prompted by a high-profile campaign against the LCP by families and the Daily Mail newspaper in 2012.


From the study: NHS staff comments on the LCP

“But it is documentation so it doesn’t do the care for you, … and there’s still an awful lot of thought and…work that you know needs to go into giving that care, … so it’s not a tick box exercise, … and I think there’s just a danger of that” – senior nurse

“The biggest challenge I find as a nurse is not really knowing where you stand sometimes with treatment with, you know, perhaps the weekend…that’s why I think the pathway is a good thing because it gives people guidance and gives us nurses something to follow” – senior nurse



Readers' comments (18)

  • michael stone

    I've been moaning about this for years - and especially for patients in their own homes, 'process' is fundamentally flawed as an approach (because good care requires family carers and clinicians to be working together, and family carers cannot be familiar with the 'process' which tends to influence the behaviour of clinicians).

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  • Is it possible to 'train' people to have the most fundamental requirements for good end of life care - namely kindness, compassion and common sense? These, along with excellent communication with everyone involved are, surely, something intrinsic to each person and cannot be taught or put into a process or pathway. Should death be a process?

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  • Every patient's journey is individual. A tool to use merely as a guide is helpful at times but surely this is the reason we now have palliative care teams who now prescribe pain relief and comfort measures which suit the needs of the patient and their relatives.

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  • Barbara Walker | 23-Sep-2015 11:59 am

    At last a commonsense comment about caring for a dying patient.

    It isn't about the "6Cs," a pathway, copious paperwork. It is that innate sense that should come naturally to a good nurse.

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  • michael stone

    Barbara Walker | 23-Sep-2015 11:59 am

    'These, along with excellent communication with everyone involved ...'

    The absence of that necessary communication, is a really serious issue during end-of-life. Almost everyone who writes about EoL, is aware of that problem - but resolving it, is less easy.

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  • I have been teaching staff in nursing homes about End of Life Care for the last 12 months and their response has been very positive. We look at care before death including having difficult conversations and enabling residents to make their wishes known. We also look at care after death and ensure that staff have a chance to talk about their experiences. With the Gold Standard Framework to help staff feel more confident and able to achieve good standards of care

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  • End of life itself is unique. What exactly does this term mean for the individual, Relatives and Nurses?
    I have witnessed the term being used within elderly care, where individuals decline food and accept very little hydration. I have seen Relatives say their last supposed good byes. However, after maybe a week of this so called end of life the individual improves. Improves, to the point of eating a full diet and accepts adequate hydration. Improves enough as to justify rehabilitation. During the-so called end of life period, the individual would have lost weight and become somewhat dehydrated. However, the individual comes out of the so called end of life period . Relatives of whom had been told to accept the imminent death of the Person, are shocked at the loss of weight and shocked that the Person is alive. The Person week by week regains weight and enjoys a quality of life unique to their Person. However, for the Nurses and those others involved in their care and rehabilitation( of whom have cared intensely) for this Person; they are very often given the news that a safe guarding is now on this person for loss of weight. Hence, on the one hand one has a end of life Person, the next a Person of whom recovers the supposed end of life period enough to be termed well enough for rehabilitation, only to have a safe guarding because during the end of life period the Person would have lost weight. The fact that the Individual has not died as expected by a GP is not considered, Nurses and care staff are criticised for care when with all due respect, when the body starts to shut down one has all the problems with this shutting down like vascular compromise; dehydration; anorexia and so on...I feel that this term end of life is used all too quickly and all too often by GP s. I would like the term excluded from Nursing care. Care planning can be achieved on an individual basis with the involvement of all concerned for that individual. Guides are excellent such as pain scales, pressure area assessments, eating and drinking aims. However, such are only guides to aide one's clinical judgement. I do think with the monitoring of pain there should always be pain scales in place to justify the use of analgesia and its effects. I again have over a period of forty years witnessed what I would consider inappropriate use of opiates without any justification as in paper evidence for such use. In fact I have heard relatives both in the acute and community settings requesting syringe drivers and their contents without justification. I am pleased that with education, Nurses no longer allow such Relatives to over ride the Nurses clinical Judgement. However, there was a time under the Liver pool Pathway that this happened frequently. I for one was never in favour of the Liver pool pathway, nor would I advocate the Gold standard framework. Kindness,compassion with education enables the Nurse to use her/his own clinical judgements..........

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  • michael stone

    caroline braniff matthews | 25-Sep-2015 9:13 am

    'End-of-Life' isn't a useful term - 'terminally diagnosed' is more sensible. Combined with getting 'expected/unexpected' death right:

    It is for individuals to decide whether to decline food and hydration - that is surely their decision. If your point is that sometimes a diagnosis of imminent death is wrong - yes, sometimes.

    I don't think you are actually talking about clinical judgement here - I suspect you are talking about decision-making - and this is a sentence I could analyse in some depth:

    'I am pleased that with education, Nurses no longer allow such Relatives to over ride the Nurses clinical Judgement.'

    As for the LCP - well, it certainly did not live up to its 'intended objectives' well enough: the issue, is will the 'replacement approach' actually make things better.

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  • No one is perfect and sound training on top of a suitable disposition does not go amiss. Safeguarding is just that. It's purpose is to safeguard. It is NOT a conviction and should be regarded by caring nurses and carers as only a precaution- assuming they do care about their patients and acknowledging the fact that some care providers put profit before patients therefore there is a real need for safeguarding orders to be put in place at times to, simply, safeguard.

    However I agree that focus must be kept on the patients' best interests rather than the relative.

    The carer responsible for my mother at EoL turned my mother on to her side so that my sister could see her face. That side had at least 2 pressure sores. The bed had wheels, also my sister was fully mobile.

    There were other issues that came to light at postmortem. Therefore safeguarding was involved and for the sake of the remaining residents, I am very grateful for that.

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  • michael stone

    Anonymous | 25-Sep-2015 2:53 pm

    I'm sorry about any problems with your mother's care, but 'safeguarding' is an issue which needs to be more care fully thought about.

    In particular, there is a tendency to 'safeguard' mentally-capable patients from their own decisions, which others 'consider unwise' - that isn't 'safeguarding', it is the thwarting of the patient's legal right to autonomy.

    Best-interests decision making, for patients who have lost mental capacity, is covered by the Mental Capacity Act, but its interpretation by many HCPs, is not what I consider the Act to state: I admit that applying what the Act states, is very difficult in any system which wishes to place 'hierarchy and process' at the top of its list of priorities.

    I fully agree with the profits versus care point you made (and 'efficiency' {as in extracting 'maximum work' from nurses, etc} can also run in opposition to 'decent care').

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