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'We must recognise when medical intervention is inappropriate'

Posted by:

30 April, 2012

One parent has cancer, and has been on the Liverpool Care Pathway for weeks. She and her family have received excellent care and support, which has focused on keeping her comfortable and offering emotional and practical support to her and her loved ones.

Of course they are all finding this period difficult, but my friend told me that the team caring for his Mum has enabled the family to find pleasure in their remaining time together. She is comfortable and able to satisfy herself that she is attending to things that are important to her, while her family are reassured that any distressing symptoms will be addressed promptly by professionals who understand end-of-life care.

My other friend’s Dad has advanced dementia and is now frail and declining before our eyes. He is in a nursing care home yet he has been taken to A&E twice in the past couple of months, and then admitted to hospital where he has had arterial blood gas analysis and aggressive antibiotic treatment which was distressing for him and therefore his family. After the first trip to A&E my friend asked the home not to take him in again. She understands that he is dying, and that heroic interventions simply prolong a life that is devoid of any pleasure, yet he was taken in a second time and the process was repeated causing the same levels of distress to all concerned.

These two situations reminded me of a paper at last week’s RCN Research conference, in which Karen Waters reported on a study of the end-of-life care received by patients with dementia. Like my friend’s Dad, 78% of her retrospective sample received burdensome interventions.

Like my first friend’s Mum, many people with cancer or other diseases that are recognised as being potentially terminal receive excellent end-of-life care that gives them both physical and emotional comfort and supports their family. No one tries to “save” them because it is accepted that this is both inappropriate and impossible. Shouldn’t those who are simply reaching the end of their life be able to expect the same?

Some details have been changed to protect confidentiality.

Readers' comments (18)

  • I thought the LCP was only to be used in the last 72 hours of life, not for weeks?

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  • It seems that that course of antibiotic did the trick. And that your dad'friend benefit of it! Probably going through GP would have made life easier for patient and everybody else but as a carer/ nurse I can uderstand why this happened! You don't let someone die just because has Dementia!This is asking for a strong care plan to be in place where everyone including GP, staff and next of kin and everyone involved in the care of patient will sit down and draw a line where to put the ceiling!It seems to me that it's more likely to be a lack of training recognising the dying patient of different causes!And LCP should be implemented to all dying patient regardles of cause!

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  • if there is a lack of resources for treating and nursing patients adequately how come they do not reserve the right to choose when they die? it does not add up. However, those who wish to live are being left to die as well through inadequate care, criminal negligence and errors, and hospital induced diseases.

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  • The 'End of Life Pathway' is what it says it is. It isnt supposed to be used for those who, although they may be unwell, frail or have dementia are not near to death. Yes it is to be used for the last 72 hrs of life, and someone can be taken off the pathway if their condition improves. Maybe more discussion needs to take place with patients and their families around whether they want intervention at a certain stage of life. We need to be brave enough to raise the subject with patients/families and be able to have frank and open discussions.

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  • Anonymous | 2-May-2012 4:22 pm

    how can anybody be sure that somebody is at their last 72 hours of life?

    sounds like this pathway is another excuse to provide conveyor belt type care and follow ?'best practice'? guidelines and repeating and mimicking like parrots what managers and superiors say instead of the caring team thinking for themselves and identifying and respectfully meeting the needs of each individual patient and offering the relevant support to their families.

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  • MeThinks

    Anonymous | 2-May-2012 4:38 pm

    Anonymous | 2-May-2012 4:22 pm

    how can anybody be sure that somebody is at their last 72 hours of life?

    Quite - it isn't possible to sensibly employ that degree of precision. Your 'identifying and respectfully meeting the needs of each individual patient and offering the relevant support to their families' should be the objective - not at all easy to describe in advance of events, nor are 'tick-box lists' all that sensible.

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  • My Nan died quietly in her residential home. She had had previous, distressing visits to hospital which frightened her but did nothing to add to the quality of her life. She spent her last few months dozing in her armchair, eating what she fancied, often not getting up until the afternoon and grumbling about evryone and everything - pretty much what she had done for the last few years!
    Yes she could have had a final admission to hospital, to be re-hydrated and fed more supplements, but quite frankly neither the home, GP or any of her family (6 of which are nurses) thought it would be in her best interested.
    She died in her own home!

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  • As an end of life care facilitator for care homes I find it sad that the gentleman with Dementia has been sent to hospital twice if he is indeed at the end of life.
    The family need to speak to the care home staff about a "Best interest at the End of Life " that will allow for discussion with all members of the MDT including the GP.
    With reference to the LCP this documet is a guide to providing holistic care for the person who is at the end of life not a tick-box exercise.
    maybe the person who fels it is " conveyor belt type care" should actually look at version 12 to see what is involved.

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  • Sometimes people have no choice but to call an ambulance. It's not being vindictive or uncaring, they did what they thought was best at the time. If someone is reaching the end of their life then symptom control is the main priority, that may include antibiotics to help clear up a very nasty chest infection.

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  • Anonymous | 3-May-2012 12:02 pm


    James LeFanu: Clinging to a Pathway can lead care off track
    Doctor's diary



    7:00AM BST 20 Sep

    2010http://www.telegraph.co.uk/health/healthadvice/jameslefanu/8008866/James-LeFanu-Clinging-to-a-Pathway-can-lead-care-off-track.html

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  • michael stone

    Anonymous | 3-May-2012 11:54 am

    A sensible objective, reasonably achieved.

    Anonymous | 3-May-2012 12:02 pm

    'As an end of life care facilitator for care homes I find it sad that the gentleman with Dementia has been sent to hospital twice if he is indeed at the end of life.'

    So do I.

    Anonymous | 4-May-2012 10:00 am

    'they did what they thought was best at the time' must be a concept which is universally applied, by everyone to everyone in all settings (including within a patient's own home and to lay persons), or else used as a 'defence' by nobody.

    But Ann's piece, involved the differences between dying from something such as cancer and dying from more complex pathologies such as what I would term 'overall degeneration', and also the differences between being ill but still mentally capable, and being long-term mentally incapable (dementia could mean many things, and demented isn't automatically the same thing as mentally incapable, although advanced dementia can reasonably be taken as equating to mentally incapable) and subsequently very ill.


    Community deaths of people who are mentally capable have yet to be ‘dealt with’ sensibly, and addressing dementia is considerably harder. But I will throw in a list of comments, which might touch on both areas.

    A friend of mine died from cancer a few years ago, in a nursing home. During the final 2 or 3 weeks of his life, he was ‘delirious and apparently in agony’ – extending an awful life, strikes me as an awful objective.

    My mum, who died at home from ‘accumulated old age’, wasn’t demented in the sense this article used, and she made it clear to me that she wanted to die at home, and placed this ahead of potentially better pain-relief in hospital – I could accept that, because I understood it, although as she became comatose quite quickly, I didn’t have the emotional problems of watching pain for very long.

    Whoever wrote ‘the final 72 hours’ in connection with the LCP, really should be kept away from writing guidance for EoL: most of the problems with EoL, and death in the community in the wider sense, are because probability spectra are involved and many things involve the consideration of uncertainty, and turning ‘the last few days’ into ‘the final 72 hours’ isn’t useful, and leads to overly-simplistic thinking and confused understanding of the issues.

    Although in England and Wales we have legislation (the Mental Capacity Act) intended to deal with the treatment of mentally incapable people, it isn’t really adequate for dementia patients, and it isn’t even being correctly interpreted in guidance for mentally capable patients. The main problem, is that the Act is based on the concept of extending a person’s mental capacity into an anticipated period of future mental incapacity: if a patient has been demented for a long period before an illness becomes ‘intolerable but not yet life-threatening’, section 4(5) of the Act appears to prevent any other person from doing what a mentally capable person could do in that situation. So a mentally capable person, considering a future which he would consider to be potentially intolerable, can do things (such as refusing treatments) which are intended to speed his death – but it seems, when I read the Act, that if a patient is long-term demented there normally isn’t a legitimate way of ‘allowing him to die to prevent suffering’. It might be possible, but it really isn’t obvious that it is possible, even if there is a welfare attorney to make best interests decisions.

    Deaths and dying are not all ‘neat and tidy’, and many deaths do not progress through a process of predictable deterioration until the ‘final few days to live’ stage is reached – some people die much earlier than that, but also entirely naturally. Those ‘earlier but still natural’ deaths are currently very badly dealt with, if they occur in the community and you are a live-with relative of the person who dies: it appears that the system, and in particular the Police, has yet to address this problem of ‘earlier than ‘Expected’ EoL community deaths’ in a way which recognises the mental fragility of just-bereaved live-with relatives, and also respects the human rights of those relatives.

    And, of course, ‘allowing people to die, just because they are demented’ is plainly wrong, and also I think illegal – but (and this is really complicated to consider, bearing in mind that the easier bits are still muddled at present) the existence of the NICE Guidance implies that cost-benefit analyses are valid in the consideration of health care provision, but those considerations tend to be absent from things such as the Mental Capacity Act, and ‘very fudged and ambiguous’ within the area of clinical ethics.

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  • Michael Stone - for your attention
    similar story to your own which you may like to read and/or comment on


    'My granny died peacefully – and then our nightmare began’
    Victoria Moore helped care for her dying grandma and planned for the funeral. But to her and her family’s horror, their private grief was trampled on by state bureaucracy.

    Happy times: Victoria Moore on holiday with her grandma, Myra, last year Photo: Rii Schroer

    8:23PM BST 22 Apr 2012

    http://www.telegraph.co.uk/health/9216777/My-granny-died-peacefully-and-then-our-nightmare-began.html

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  • Anonymous | 4-May-2012 3:16 pm

    Michael Stone - for your attention
    similar story to your own which you may like to read and/or comment

    No, not quite my experience, from the brief reading I just made.

    My mum had been peacefully comatose for about 4 days before she died, I had asked the GP 'What would you like me to do, if my mum dies ?' and got 'Call me at the Surgery, or tell the cover GP it was an expected death - there will be no police' (about 3 days before my mum died, and we both knew that 'if' was a 'when').

    Coventry had no formal CPR/VoD policy, and the GP did not leave DNACPRs or 'notes of Expected death' in patient notes. My mum died at 8-15 am on a Friday, I wasn't sure if the GP arrived for work before 9am - I called first the DNs to cancel a planned visit later in the day at about 8-55am, then the Surgery at about 9am to get the GP. The GP had taken the day off as the start of a long weekend in Europe (and was not contactable), the surgery was busy and the receptionist told me to call 999, I (stupidly - assuming a joined-up system existed, was an error !) called 999 and pointed out I didn't consider this to be an emergency, 999 sent an ambulance, but the paramedics were not told what I had told the 999 operator.

    I was then faced with a paramedic, who almost immediately told me 'it was a sudden death just because I was called' and who expected to find a DNACPR etc in the notes (we, which is to say the WMAS chap who I subsequently discussed this with and I, think this particular paramedic was used to working in another area, such as Sandwell, which did have a CPR/VoD policy - we don't really know what so bothered the paramedic, because by the time WMAS would have actually asked him, he no longer worked for WMAS). He called the Police. Two DNs, including the lead DN who had been present when I had asked the GP what she would like me to do when my mum died, turned up about 10 minutes after I was already involved in a 'mindset issue' with the paramedic and police. The mindset issue, was 'How can death from a terminal coma, be any sort of an emergency ?!' (me) and 'Why didn't you call someone immediately ?' (them).

    The paramedic subsequently contradicted himself by asking the lead DN 'Was it an expected death ?' and although she 'sort of denies saying this' (she 'apologises if she did say it') I think the DN then muddied the waters even further by replying 'Yes, but not necessarily today'. I subsequently asked the PCT to confirm what she had said to the paramedic, but I only got she thought she had said 'Yes, it was an expected death': when I said 'What does the paramedic think she said to him ?' the PCT's investigator had not bothered to ask the paramedic.

    Anyway, to cut a long and very complicated story short, the Police 'forced' me to make a statement at a Police Station, and kept me away from the house for 7 hours, tried to search the house (almost impossible, because I had arranged for my mum to be in a bed downstairs at very short notice, and the house was chaotic upstairs) in my absence but had removed, it turned out, 2 of my computers without bothering to tell me.

    I was incandescent with fury (whenever I wasn't grieving or lethargic) for much of the weekend, made this very clear to a Duty Inspector who was keeping well to his side of a desk, the Coroner (by letter, hand delivered to his office ) and the GP (by letter, hand delivered to her home address), and got an apology from the Coroner, who invited me to his office to make it face-to-face, on the Monday.

    The PCT ignored this incident until I wrote a letter to the DNs after they phoned me about a month later - then the PCT annoyed me for much of 2009.

    I have been discussing EoL beliefs and behaviours for home EoLC with many people and bodies since mid 2009, and the law isn't properly understood, and the guidance is just wrong - it isn't anything like 'neutrally balanced', and whenever confusion arises, professionals cover their own backs at the expense of bereaved relatives.

    But it is very lengthy, to go through a full analysis - and that goes to the DH, RCGP, BMA, etc, as they can change the guidance (something NT cannot do !). An awful lot of it, is down to 'mindsets' and 'issues of perspective'. Throw in the legal and medical complexities of 'dying/death', and my firm opinion is that many of the professionals simply do not understand it, anything like well enough !

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  • michael stone

    The previous comment at 11-23am was mine - somehow NT logged me off, and still posted the comment, but without pointing out it was my comment !

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  • DH Agent - as if ! | 5-May-2012 11:28 am
    Michael Stone if that is your real name

    how many more times are you going to repeat your story that many readers already know by know considering the number of postings you made over the last year.

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  • "No, not quite my experience, from the brief reading I just made."

    and one can infer from that that you have no interest in anybody else's experience as usual!

    why do you continue to post here?

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  • michael stone

    5-May-2012 11:23 am

    Anonymous | 4-May-2012 3:16 pm

    Michael Stone - for your attention
    similar story to your own which you may like to read and/or comment


    At the risk of widening the topic, I will accept your invitation to comment of the link you provided, but I wish to also discuss this e-mail:

    EMAIL BEGINS

    Dear Mike

    With more people wishing to be cared for in their own home and NHS/Social care providing more locally based home services this situation of 'Expected Death' needs debating fully to ensure that the person concerned is not subject to abuse. Also that relatives and loved ones are not put under emotional trauma due to, as you describe 'suspicious/aggressive behaviour'.

    From the point of view of a carer who nursed my husband for over four years with a cardiac condition which meant that he could die at any time, I was distressed that when he did die, a police officer had to stay in the house until a doctor could be found to confirm death which took about five hours. As he had not seen a doctor for the past two weeks it meant that a post- mortum was performed.
    However as a retired nurse I am well aware that not all relatives are as caring and if there was a motivation of benefitting financially it could be easier to hasten the death if controls are not evident.

    All aspects must be considered.

    Hope this helps

    Regards

    Jackie

    EMAIL ENDS

    I’ll start with your link:

    http://www.telegraph.co.uk/health/9216777/My-granny-died-peacefully-and-then-our-nightmare-began.html


    If we define an Expected death as one which the GP has effectively promised to certify even if the GP cannot attend the death, then in that situation the Coroner can allow for much greater (in fact, almost total) relaxation of post-mortem ‘cause of death’ investigations (except for checking for blatantly obvious signs of something strange having happened).

    But deaths which had not been classified as ‘Expected’, will need one or more of:

    The doctor who could certify to attend;
    Some subsequent discussion between the doctor and the Coroner;
    Possibly an autopsy.

    The issue, for home deaths, is what is reasonable behaviour if the GP cannot attend.

    I consider that if there is no obvious reason to believe a death was unnatural, then asking relatives to give a statement of what happened, in the home, and only once, is reasonable. Pointing out that the Coroner must be involved, and that the body cannot yet be released to the relatives, is reasonable. Alerting the relatives to the possibility, but not certainty, of an autopsy, is reasonable.

    So, assuming the police were not ‘persistent or aggressive’ when they questioned the relatives in your link, I consider the ‘system’ behaved properly, except removing the body without allowing the bereaved ‘adequate sitting time’ isn’t correct, in my view. The distress of learning that there might be an autopsy, is a psychological reaction and understandable, but I can’t see how that is avoidable ?

    But in that piece, Victoria wrote this:

    ‘What you need to know is this: if a person has not seen their GP in the 14 days preceding their death, or is not seen by them immediately afterwards, the case must be referred to the coroner.’

    I’m not so sure about that – I’m pretty sure that if the GP had not seen the patient within the previous 14 days, the GP would need to tell the Coroner about that. Probably no autopsy, and probably no post-mortem complications all that obvious to relatives, but I feel sure the GP and Coroner would have a chat.

    But in that e-mail I reproduced above, we see things which I do not consider acceptable – and are interesting. The husband wasn’t even within the NHS definition of EoL, and yet we have ‘who nursed my husband for over four years with a cardiac condition which meant that he could die at any time’. And as it was known that ‘he had not seen a doctor for the past two weeks’ why bother to call a doctor ? Why couldn’t a paramedic have been called out to confirm the death, and then his body been removed, without subjecting Jackie to the distress of having to wait for 5 hours with a police officer in her house ?

    Behaving rather like a branch of the Gestapo, simply because things which cannot be discoverable are not known, isn’t good and balanced behaviour – it is very annoying and damaging (for just-bereaved relatives), and stupidly unacceptable, behaviour !

    PS to Anonymous | 5-May-2012 1:06 pm

    I was invited to comment about that link, and I am very interested in everyone's experiences of home EoL deaths - the way you draw flawed inferences, is hard to understand.

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  • DH Agent - as if ! | 6-May-2012 12:41 pm

    PS to Anonymous | 5-May-2012 1:06 pm

    I was invited to comment about that link, and I am very interested in everyone's experiences of home EoL deaths - the way you draw flawed inferences, is hard to understand.

    it was your dismissive answer which led to the inferences and the way you have responded to many others over the past year.

    However I am not prepared, once again, to read through all your confusing or confused ramblings above, so will call it quits.

    for me you have once more ended what started as an interesting and useful debate of the experiences of peers but you may have the fortune that someone else will take up the discussion with you. You try hard to intrude and may somewhere meet with some success even though it may damage the numbers of the NT readership.

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