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OPINION

'It is completely within nurses’ power to ensure the LCP remains'

Sometimes in the NHS you have to have difficult conversations with patients and families – tragically the health service can’t save every patient that comes to its door.

Nurses and doctors are in the frontline of the struggle to save lives, but they can’t win every fight. And the battle, for some patients, can be an unpleasant and pointless trial that only adds to their suffering and lack of dignity.

That was why the Liverpool Care Pathway was created in the 1990s – to give those patients at the end of their life a “good” death.

A death with dignity and without pain or suffering is one of the last gifts the NHS can give many of us.

As a health journalist, I’ve been fascinated by the growing furore over the Liverpool Care Pathway (LCP) in recent weeks; but as someone who had to watch my 84-year-old Nan die while on the LCP seven months ago, I’ve also become increasingly frustrated at the way the pathway has been portrayed.

My nan, Dorothy, lived in Stoke-on-Trent all her life, and after years of ill-health she came to the end of her life in April this year at the University Hospital of North Staffordshire.

She received the very best level of care I could have hoped for and I will always be grateful for the wonderful treatment she received.

The LCP was a crucial part of ensuring my nan kept her dignity right to end, it meant she did not suffer and allowed her to say her final goodbyes.

She knew she was dying and once treatment to try and save her was stopped she became peaceful and contemplative and I remember spending an hour with her alone where we talked for a final time. Looking back now, it was a conversation that was painful but so comforting to have had.

My nan said things to me that will stay with me for the rest of my life and the peace given to her via the LCP made that conversation possible.

Immediately afterwards I was extremely upset and standing in the corridor of the ward I didn’t know what to do or how to react. Which is why I was so grateful that one of the senior nurses, Tracy Mellor, took me to a nearby office made me a cup of tea and talked to me about what was happening.

Her kind words and explanation of what was happening, how my nan would progress and what they would do for her was incredibly important. I cannot praise Tracy and the staff at the University Hospital of North Staffordshire enough.

As a family we were involved in the LCP and DNR decisions, we understood it, we agreed with it and we were willing passengers on my nan’s final journey.

That is the crucial difference between my story and the harrowing examples we have seen reported in the mainstream media.

Had I found out my nan had been put on the LCP and a DNR without my or my family’s knowledge I would have wanted to tear the hospital down brick by brick with my bare hands. I can totally understand the anger families feel in those situations.

And that’s why The Daily Mail and others were right to highlight the cases, but instead of focusing on the behaviours of the staff who got it wrong when they did not involve the patients or families, they instead made the story about the pathway.

The LCP is not the problem, but its implementation, in some cases, is. Those cases are entirely unacceptable and should face the full fury of the media and patients when they happen.

Nurses grappling with life and death issues face incredible pressures; you go into this job to save lives, not to watch them fade away.

One possible reason for the lack of communication with some families could well be a reluctance of some nurses and junior doctors to have those incredibly tough conversations with patients and families.

In my nan’s case we were spoken to by a special palliative care nurse who came to talk with us and removed that burden from the ward nurses and doctors. This could well be a solution going forward.

I particularly remember this palliative nurse for her kindness. Hearing that my nan, who I was incredibly close to, was dying and would not survive was hard. Inevitably I became upset and I will always remember her for the simplest of gestures – putting a hand on my knee as I became upset. She then explained why food and water was not necessary anymore for my nan and took me through the LCP process. Her time, kindness and understanding could do nothing to relieve the shock of my nan’s death, but it meant I was free to concentrate on the important final hours ofher life. It is impossible to express the value of that.

Nurses must realise that communication is as much a part of their job to care for the dying as the administration of drugs.

Accompanying a patient and their family in the final days of death is a privilege nurses need to recognise. As a profession they can make such a difference in those final days.

The good care my nan received will comfort me for many years.

The media may be mistakenly presenting the LCP in an unhelpful and sensationalist way, but it is completely within nurses’ and other health professionals’ power to ensure that the LCP remains and that it is used effectively. Because when that happens, its power to help relatives and the patient can not be overestimated.

Readers' comments (22)

  • We don't expect to save everyone, we all die and many people, including our ourselves and our own families will die in hospital.

    What will happen when a patient requests that they have a DNR form or don't wish to have any more blood tests, investigations, ng feeding, IVI etc. and the family insist that they do - who will the doctors listen to?

    The patients wishes must be taken into account even if it is not what the relatives want to hear.

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  • what will happen if a patient asks not to be rescusitated, go to ITU or declines any treatment and specifically asks that we don't discuss it with the family?

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  • Yes But

    Actually, the headline's claim is 100% wrong !

    I am all for decent eol palliative care, but:

    1) mentally capable patients can refuse any offered medical intervention;

    2) in anticipation of incapacity, patients can appoint welfare attorneys, and then the welfare attorenys can also decline offered interventions 'in lieu of the patient';

    3) even without a welfare attorney, the MCA's best interests test does ssem to require that 'people who know the patient' must be consulted about decisions, and if there is a disagreement the MCA only seems to provide for the provision of life-sustaining treatments until the dispute is resolved.

    So nurses can only promote the LCP and other eol palliative care - it seems clear that actual provision requires consent, if clinicians do not wish to risk being charged with assault.

    Anonymous | 10-Nov-2012 10:54 am

    There is an unresolved conflict between the obvious requirements of section 4 of the MCA and 'we didn't ask the patient, but we are now in the tricky position of his having told us not to disclose medical information' - but your example, is just the 'awkward patient' one, and there isn't any solution to awkward patients. But you have to follow the patient's instructions - you will tend to get a lot of hastle from uninformed relatives, however.

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  • I've used the LCP as a student nurse since 2008, and I found it to be a dignified & informative end of life programme for those who require such a pathway.
    The LCP is heavily discussed with the MDT and not a decision taken lightly - obviously those who can tolerate food drink etc are not put on the pathway and left to starve. This is an end of the line pathway for those whose organs have failed and cannot eat/drink etc and have hope of a suitable recovery - its patient choice alongside the MDT.
    Yet again the media sensationalise and hype up the pathway as a Dr Death. Contradicts Diane Prettys fight for euthanasia Right, the media doesnt know what it wants!!
    So yes a dignified informed choice of the whole MDT and if the patient wishes their family if not than patient choice based on medical need.

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  • michael stone

    Anonymous | 10-Nov-2012 2:03 pm

    A retired GP wrote in The Times (letters) yesterday, explaining how his late wife was transferred from an oncology ward to a local hospice for her final few days.

    On arrival, they both spent about an hour talking to the duty doctor, which left his wife rather tired, then the GP (who had spent the previous night at his wife's bedside in a chair) nipped home for a quick shower and change of clothes, and when he got back he discovered that his wife had been injected with sedatives and pain-killers by the nurses (without consent) and she was no longer capable of meaningful communication.

    That should not happen - this idea that the MDT makes the decisions, is wrong: and that GP, is obviously still annoyed by that event.

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  • hmm who prescribed the sedatives and pain killers ....the same duty doctor who spoke to the GP and his wife? very odd
    An MDT meeting without patient or next of kni knowledge and in such a quick time span - Obviously shouldnt happen - but not at all due to or in similarity to the LCP.
    Miscommunication.
    And MDT meetings should include patients and if they wish next of kin.
    very odd occurance.

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  • Yes But - I am not suggesting a patient is being awkward by not wanting the family involved in decision making. Why have you labelled them 'awkward'?

    Patients, for many reasons, don't always want their relatives informed of their hospital admission let alone their diagnosis, treatment plan, resus status.

    It is the patients right to complete confidentiality and that must be respected. If a patient has spoken to the doctor and both agree that resuscitation or transfer to ITU is not beneficial and they don't want the relatives involved what are we supposed to do, go against the wishes of our patients just in case we might get sued?

    It used to be that some relatives asked us not to tell the patient that they were dying, doctors used to find themselves in an impossible position.

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  • someone has said here that a hospice patient was given analgesia and sedative without consent - consent from who? the relative? do doctors and nurses need to have consent from relatives before they are allowed to alleviate their patients pain or agitation?

    i don't want myself or any of my relatives to be in pain, why would I. I don't expect to have to wait for painkillers, sedation or anything else just because the doctors and nurses are told they have to consult my family to get their permission first.

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  • dh agent, did the patient need the sedatives and the pain-killers.

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  • michael stone

    Anonymous | 10-Nov-2012 2:31 pm

    Here is the letter, converted by an OCP programme (not tightly proof-read, but I think it converted okay). And yes, very 'odd' indeed !

    Sir,

    As a recently retired GP I am aware of the Liverpool Care Pathway as the gold standard for end-of-life care of patients dying at home.

    As a recently bereaved husband I am also aware of the high standards of hospice-based palliative care. My wife was transferred from an oncology ward at our local hospital to our local hospice to enable us to maximise her remaining days in a more relaxed and appropriate environment.

    We discussed our hopes for the admission with the duty doctor for more than an hour, after which my wife was visibly exhausted. I returned home briefly to shower and change, having slept in a chair at my wife's bedside overnight.

    On my return my wife was heavily sedated and unable to converse. I found that the nursing staff had administered strong pain relief and sedation by injection to facilitate nursing care and without prior discussion. My wife never regained her previous level of consciousness and passed away peacefully with her family at her bedside three days later.

    As an ex-professional I recognise the important impact of the Liverpool Care Pathway in improving the care of the dying patient. However, its application must take note of the fully informed wishes of close relatives, many of whom have been nursing their seriously ill relatives for some time at home in difficult circumstances.

    I implore hospital and hospice staff and primary care practitioners to involve patients and relatives throughout each step in the pathway, thus avoiding the inevitable deep disappointment and anger which may ensue from its unilateral application. As with every branch of medical practice good communication is essential.

    Keith Price (GP ret, York) The Times page 35 Friday November 9 2012 Letters Section

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  • michael stone

    Anonymous | 11-Nov-2012 8:34 am

    Yes But is correct in legal terms - and I think 'awkward patient' is being used merely to point out that if patients introduce conflicts, then everyone tends to be somewhat up the creek without a paddle. Ditto, what happens if an EoL patient is at home, tells his relatives something crucial and adds 'but don't tell the doctor' ?

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  • I am confused by many things in this letter.

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  • the LCP does not insist that food and fluids are witheld - but you cannot safely give food or fluids to patients who are drowsy, semi conscious or unconscious, they get pneumonia or choke.

    does anyone know what the Right To Die campaigners have to say about the LCP.

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  • Having witnessed 10 weeks of sub standard care in regard to my grandfather , I was then introduced to the LCP . I was consulted , and I fully understood the implications, However what I found difficult to stomach was the fact that poor NHS care and support had already taken his independant active life. The most devasting part of my life was being a NHS member of staff, complaining via the complaints system & the CEO to ensure care was appropriate I failed. I more than anyone knew the system, the organisation , how to complain, yet despite my complaints in writing via the correct process and to a CEO . The organisation failed him . The Liverpool care pathway may well promote death with dignity, but it lacks meaning when there is poor quality negligent care.

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  • Yes But

    Anonymous | 11-Nov-2012 9:17 am

    If YOU ask for pain-killers or sedation yourself, they should be provided.

    The issue over 'asking the relatives' comes into play if you have become mentally incapable, without making your decision about any future medical intervention crystal clear.

    There are other issues about the LCP - notably, that as patient's assess their own risks v benefits, can they ask for things like deep permanet sedation, if they consider other pain relief isn't adequate.

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  • do we have to ask a relative for permission to provide sedation and painkillers if a patient is 'mentally incapable'? can't we use our skills, knowledge and judgement to keep our patients comfortable.

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  • As a relative I would be very angry and upset if I found a loved one in any pain or distress because the staff were scared I might make a complaint. When I am called to visit someone very ill I prefer them to be as calm and as comfortable as possible, I do not want them to be in any pain.

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  • My 87 year old father suffered with chronic heart and renal failure, he spent years going in and out of hospital at the GP request. He had decided that enough was enough, he didn't want to have more tests, catheters, cpap so took the decision not to allow mum to call an ambulance when he was nearing the end of his life. He died at home surrounding by his family.

    Not everyone is going to survive, we are all going to die and many times it is not a tragedy.

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  • michael stone

    Anonymous | 11-Nov-2012 8:34 am

    Re your:

    ‘If a patient has spoken to the doctor and both agree that resuscitation or transfer to ITU is not beneficial and they don't want the relatives involved what are we supposed to do, go against the wishes of our patients just in case we might get sued?

    It used to be that some relatives asked us not to tell the patient that they were dying, doctors used to find themselves in an impossible position.’

    I am currently haggling with Claud Regnard, about the legal correctness of his Deciding Right series of guidance, and this one will be going to him later this week – EVERYONE can be placed in IMPOSSIBLE POSITIONS, including live-with relatives. These 'impossible positions' need bette rguidance, written from ALL perspectives (not just from that of the professionals).

    ___________________


    People keep telling me ‘this isn’t anything to do with distrusting relatives’.

    Okay – prove that.

    In his most recent e-mail Claud wrote (and I 100% agree with him):

    'the current decisions of a patient with capacity takes precedence over any decisions they made in the past.'

    So my dad is in hospital, he is very ill and suffering a lot, and he is known EoL but while CPR in theory might still work.

    He decides that ‘I’ve had enough of this’ and he tells a nurse:

    “I’ve decided that if I arrest, you must not attempt CPR. Can you phone my son, I want him to come in so that I can explain this to him”.

    If he arrests before I can come in, I don’t expect the hospital to try CPR – I am forced to accept the nurse’s explanation ’that your dad refused CPR’.

    If I am at home with my dad, in an identical clinical situation, and he explains to me ‘I’ve had enough of this – I don’t want them to try CPR any more. We will sort this out when the GP calls tomorrow, but if you think I’ve stopped breathing before then, don’t call anyone and let me die in peace’, and he arrests before this has been mentioned to the GP or any other professional, and I don’t call anyone, professionals are logically also forced to believe me.

    That isn’t how your EoL/CPR/VoD behaviour sets are currently written !

    Why not IF:

    ‘We are not distrusting live-with relatives’

    and

    ‘the current decisions of a patient with capacity takes precedence’


    I might have doubts about the nurse, and ‘the system’ might have doubts about me – but this is entirely symmetrical, unless you are defaulting to accusing live-with relatives of bad behaviour simply because they exist !

    That isn’t on !

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  • oh blimey, what a minefield. all I want to do is make sure my patients are comfortable, calm and pain free.

    I've never had a relative say to me 'don't give any sedation or painkillers', I've only ever had relatives ask that their loved ones are looked after and are as pain free as possible, why would anyone want anything different?

    we are here for our patients, I understand grief and anger but what are we supposed to do?

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