End of life care through the eyes of a doctor and a patient

I was horrified to read the recent articles ‘Care? No, this is a pathway to killing people that doctors deem worthless’ and ‘3000 doctors putting patients on death lists that single them out to be allowed to die’ published in the Daily Mail. As a Specialist Registrar training in Elderly Medicine and a terminally ill cancer patient myself I have strong views on these issues both personally and professionally.

The Liverpool Care Pathway (LCP) is accused of being a ‘backdoor form of euthanasia’ and that we as doctors using it are deliberately hastening our patient’s deaths for sinister motives. In reality the LCP is simply a document we use when we feel a patient has entered the very final stages of life in terms of hours or days. It prompts us to have open discussions with relatives and if possible patients, to stop unnecessary medication, to discontinue futile medical interventions and to shift our focus of care to symptom control, comfort and dignity.

We are also accused of heavily sedating patients at the end of life. This is not the case. We use small doses of medicines such as morphine or midazolam to help relieve distressing symptoms such as pain, breathlessness or agitation. Studies of the use of medication prescribed to patients on the LCP have found that very conservative doses are used and patients are certainly not ‘heavily sedated’. My intention when prescribing at the end of life is wholly to relieve suffering and definitely not to hasten death.

Most patients on the LCP in my experience are too poorly to eat or drink, but where a patient is alert enough to swallow we certainly continue to offer them food and fluids in my hospital. They are not ‘starved to death’ as suggested in the first article. Sometimes we continue fluids subcutaneously if there are concerns about a patient suffering from thirst or if the family has very strong views on withdrawing artificial hydration. The problem with continuing intravenous fluids in these patients is that it involves inserting intravenous cannulae in order to administer them. This is painful, often very difficult and sometimes near impossible in patients that have been in hospital for a number of weeks. I know that when I reach the very final days of my life I certainly do not want to have multiple cannulation attempts and would much prefer that someone offered me good mouth-care to keep my lips and tongue moist.

The LCP is not a one-way road to death. In fact one in ten patients initially cared for on the pathway come off it because they improve clinically. We as doctors cannot accurately predict the future in all cases and much of what we do in Palliative Care is based on clinical experience and not hard science. Patients surprise us all the time and the key to providing good care in this setting is regular review and keeping an open mind whilst trying to communicate these uncertainties to the patient’s loved ones along the way.

When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well informed, emotionally supported relatives, making the grieving process that little bit easier.

I’d also like to elaborate on the ‘death lists’ GPs have been accused of keeping again for sinister motives. These are more properly known as End of Life registers or in my area, the Gold Standards Framework (GSF). The idea is that for frail patients with multiple health problems or for people like me with life-limiting conditions GPs ask themselves the ‘golden’ question – ‘Would I be surprised if this patient dies in the next year?’ If the answer is no then they are entered on to the register and this sparks a cascade of service provision, discussions and care. For example, Advance Care Planning may be tackled so that patients can make their wishes known when preparing for the end of life. This includes very important decisions such as determining preferred place of care for death. The vast majority of people when asked where they’d like to die will say home but in reality most people die in hospital at present.

The GSF is essential, if GPs do not identify those patients requiring Palliative Care input how on earth can they focus care and services on the most needy? My name appears on the GSF and I am extremely comfortable with this. Although I am well, working and living a full, productive life at present there will come a time in the relatively near future when I am less well and I want this time to be properly planned for to enable me to achieve my end of life wishes. I fully believe the fact that I am flagged up as a patient who will need Palliative Care services will help me to die in the manner I want to. Therefore in my view End of Life registers are not about being ‘singled out to be allowed to die’ but more about allowing people at the end of their lives to die in the way they wish to.

Whenever end of life issues are discussed resuscitation always comes up as an emotive topic. I have witnessed numerous resuscitation attempts in a professional capacity and because of this experience from the earliest days of my illness I made my wishes clearly known that I did not want to have cardiopulmonary resuscitation in the event of me suffering a cardiac arrest.

The reality of resuscitation is that it is a brutal, undignified way to die with only a tiny percentage of patients surviving it and an even tinier proportion of these patients leaving hospital alive. Even when it does succeed in restarting someone’s heartbeat it does not take away their cancer or other underlying chronic disease. The panic and chaos surrounding a bed where a resuscitation attempt is happening is horrendous. Ribs are broken regularly during chest compressions and it can be difficult to obtain venous access to give drugs such as adrenaline so often patients are stabbed multiple times with needles.

The problem as I see it is that perhaps as a profession we do not communicate with patients and their relatives about this topic well enough. I personally think it should be routinely discussed as part of our clinical management plans. In my experience most older people do not want resuscitation and are quite happy to talk about it. Resuscitation is a treatment and we as doctors are not obliged to provide treatments that we feel are futile. However, the way we communicate this sensitively so that our rationale can be understood is of key importance.

One thing in life is certain; we are all going to die. We need to talk openly about it and plan for it properly. Tools such as the LCP and GSF help doctors to work with their patients to achieve this. It is a scary thought but accepting that not all illnesses can be cured, challenging both the societal taboo about dying and the expectation for eternal youth and health will mean many more people can achieve a ‘good death’ and in turn those left behind can grieve knowing their loved one had a comfortable and dignified end.

If you want to read more about my story my books ‘The Other Side’ and ‘The Bright
Side’ can be ordered from my website www.theothersidestory.co.uk. All
proceeds from sales of the books are being donated to the Yorkshire Cancer
Centre. You can also follow on Facebook www.facebook.com/theothersidestory
or on Twitter @GrangerKate.

155 thoughts on “End of life care through the eyes of a doctor and a patient

  1. This is a good and reasoned article and explains the LCP well but it doesn’t really address the other, controversial, issues surrounding it.
    My wife, who is 55 yrs old, suffers from MND and was admitted to a hospice two days ago because she is now at serious risk of aspirating food and water being unable to swallow without difficulty. She has had no nutrition in the last 5 days but is able to take very small volumes of water. Her MND was diagnosed in May this year and her condition has declined rapidly since then but, of course, she is completely mentally mentally alert.
    On admission to the hospice a young doctor sat with us and soon broached the subject of LCP which upset both me and my wife. There have been no previous discussions of survival timescales and to have the withdrawal of nutriton suggested when our GP’s plan all along was to have my wife in a place of safety with a view to a referral to our local hospital for an elective PEG tube insertion, was a massive shock.
    As far as I am aware my wife has at least weeks to live and perhaps months. I wonder what the author’s comments would be regarding this particular case.

    • It is now four months since my wife was admitted to our local Marie Curie hospice and today she was placed on the All Wales Care Pathway (a version of the LCP) with her consent.
      It is felt by her care team that she may have days or not more than a couple of weeks to live. In actual fact she has been refusing nutrition for the last four weeks but because she has a PEG tube and no respiratory symptoms she has been persuaded to carry on accepting water by her care team and that will continue as long as she wills it unless she develops pulmonary oedema when it would be unjustifiable.
      My wife is being kept comfortable and pain free with very small doses of diamorphine and midazolam, anti emetics when she feels nauseous and while she seems sleepy most of the time she is still receptive and responsive and able to say yes or no to a change in the management of her condition.
      She can request extra medication for pain, anxiety and nausea by expressing her pain and nodding or blinking her eyes to indicate yes or no to offers of the various medications on offer to ease her symptoms. In addition she has refused some long term “life saving” medicines but she has been persuaded to continue others whose absence might cause her to suffer distressing secondary illness.
      The LCP (or the AWCP) is a blessing for those who would otherwise suffer an agonising and distressing death, it is also a comfort to those who are with them as they approach their final moments.

    • You are right to worry. I have just watched an elderly loved one be starved to death intentionally by the hospital following a stroke. He was given only fluids and no nutrition for 9 weeks, that’s over 60 days and I consider it barbaric, cruel and evil. I tried to stop them doing this but as I was not an immediate relative, my pleas were discounted and I had to watch this lovely man while his body fed on itself and became an emaciated shell, reminiscient of a concerntration camp victim. This practice is very similar to the death camps and those supporting it are inhumane.
      They said he was unconscious but those of us who were not closing our minds to him know he was very much conscious and responded to us by squeezing our hands and focussing his eyes. How must he have felt as he was slowly killed?
      By the way, the CQC were aware of the starvation throughout and did nothing.

  2. Kate, Many thanks for sharing these ‘musings’ in your sensitive and sensible piece above. Having lost both parents within months of each other a year ago, both of whom were supported by the approach recommended by the LCP, they died in accordance with their wishes and with as much comfort and dignity that circumstances allowed; and with the minimum distress to both them, those caring for them, and my brother and I.
    In the hope that all our ends may be similarly ‘uncomplicated'; I offer you my thanks and very best wishes, you will doubtless be a significant loss to both your colleagues and your profession when your time comes. Peter

  3. Really interesting and it also gave me something to think about , my opinion is that we need to be more open with questions to help patients whith illnessess including family.

  4. I found your musings through a comment to a typically horrible Telegraph article, by Rev. Dr. Peter Mullen, at http://blogs.telegraph.co.uk/news/petermullen/100187418/the-liverpool-pathway-to-death-how-the-nhs-is-dressing-up-palpable-evil-as-kindness . What a contrast. I enjoyed your beautiful, caring and rational articulation of these, for so many, “difficult” thoughts. Thank-you. May your life be as joyous and your death as peaceful as you deserve.

  5. Absolutely beautiful read, you are so strong, calm and dignified. Thank you for sharing your interesting and articulate thoughts, and best wishes xx

  6. Firstly, my best wishes go out to you and thank for taking the time to write this post. Secondly, one point in the post that ‘reached’ me was the resuscitation of patients…. It truly is brutal – how can someone say they want to make the end of life as comfortable as possible for someone, and then carry out such a procedure as they are ‘departing'; it’s beyond me. If I was in that position, I would not be very happy… It’s almost like waking someone up when they are drifting off to sleep. Please enjoy the rest of your life as you see fit and keep being as courageous as you are x

  7. Kate, Thank you for these articles and explanations. They give me hope that the reality of terminal illness is being addressed by doctors even if politicians refuse to face the issue. My wife has incurable cancer and we welcome the prospect of being able to discuss openly and properly with the doctors her eventual final stages.

  8. Hi Dr Granger,

    I have just read an extract of your blog in today’s Guardian, this led me to the above article. I must commend you on your fantastic courage and your ability to convey a sincere message of committment and hope to all patients. I’m not ill, nor do I have professional or personal experience of cancer, I am just an interested reader who is now more likely to question those horrible accusations that you speak of in your work. This is because of your message. Thank you and those like you for all your work, it is truly inspiring.

  9. I have just nursed my mother with terminal pancreatic cancer at home until the end. With an End of Life Plan Mum was able to make the choices that suited her best which included no resusitation, medical treatment for pain relief as required etc. Mum was able to pass peacefully at home. The plan should be done at a time when the patient can make their own choices.This allows the family to become comfortable with those choices and for the patient to pass with dignity. My previous experience was in 2003 with my Father and terminal metastaic bone cancer. It was not such a dignified end as we were not allowed to make that choice.

  10. My father was diagnosed with a terminal brain tumour last year and was given two months at the most to live. We are lucky enough to have been able to employ first class palliative care help which was a huge support to us. Dad was at home all the time until he died and the team used the Liverpool Care Pathway when that became appropriate. They discussed this with us and continued to, on a daily basis until he died. LCP undoubtedly allowed Dad a dignified and pain free end which was naturally a help to him and by extension therefore, a help to us. It was in no way at all a “backdoor form of euthanasia” and I am concerned that anybody in the mediacl proffession should criticise its use. I certainly hope that it is avalable to me when I am dying and will be available to my mother and brothers and sisters – and everyone in this country – when their time comes. It is the kindest and best way to end life and I fail to see why anyone should question kindness.

    • i disagree i think it is back door euthanasia in most cases when you have professors and doctors writing to the daily press saying its wrong, who do you believe they are doctors working in uk hospitals, it must be a dangerous tool when some relatives have taken them off they have lived and supposed to have only hours to live something is definately wrong is it just to save money and make money the freedom off information act states they make vast amounts of cash to put them on this pathway of no return.

      • I think the patient and relatives should have this discussion prior to being given the LCP which I certainly wasn’t consulted when my husband died in the Hospice.

  11. I know from personal experience that families do not discuss death, When life support was withdrawn from my husband his family did not understand and still don’t. I now have a life limiting illness and have a defibrillator CRT device fitted, my family have been made aware of my wishes, I don’t want to suffer, LCP is great more hospitals should have similar , I will one day have to make the choice to deactivate the defib part of my device , so I would welcome the support of a care plan.

  12. The use of the Liverpool Care pathway is one thing that may lead towards a dignified death. One thing that seems to be missing and something many in the medical profession seem to be crying away from is providing adequate pain relief to terminal patients.

    A family member has terminal ovarian cancer with multiple secondary tumours and is now unable to eat or drink. She discharged herself from our district general hospital to come home to die.

    She is unable to take analgesia orally and is relying on injections from district nurses and a morphine pump.

    None of her carers wants to give her sufficient diamorphine to relieve her pain. We understand the risks but what harm is there in giving a terminal patient adequate pain relief ? Awful as it sounds an overdose would be a happy release after 18 months of constant agony.

    • Neil
      Your last sentence sums up exactly why staff can be uncomfortable giving diamorphine. While common sense dictates that an overdose of diamorphine would provide happy release, the law regards it as euthanasia. Staff often have to tread a fine line between killing the pain vs killing the patient, known as the doctrine of double intent if you want to look it up. This may sound counter intuitive given that such patients are on an end of life pathway anyway. However, the pathways are designed to allow nature to take it’s course and manage symptoms, some of whom survive and come off the pathway. They are not, contrary to media statements, designed to cause people’s death, as this would be euthanasia and murder.

      Unfortunately in an increasingly litigatious society I suspect that more patients will fall victim to poor pain control with potent analgesics like diamorphine because medical staff fear the action of grieving relatives persuing legal action to find someone to blame.

      • Totally agree and am aware of the situation.

        It’s incredible that in a supposedly modern society that a human can be left to suffer whereas if an animal was treated the same way you’d be sued for not euthanising it.

  13. Two cases ref. LCP and opposite to what is portrayed.

    Blackpool hospital placed a lady on LCP and informed family that mother would die within a matter of day’s, hydration and food withdrawn. Family hydrated mother and now she is back home with loving family alive and kicking. But is badly traumatised as is family as she was aware of being what can only be described of being sentenced to death but unable to speak, only able to use her eyes for communication with family at first. But they will learn from this? How will “they” learn the terror and fear of this lady or her family? If there was a legal accountability implemented this would stop most of the horror stories immediately, not just saying “words” and getting away with it. Blackpool Hospital is alleged to have been paid £600,000 for people placed on the LCP, how and why is this acceptable and what “price” was given for Euthanising each person? This would give an accurate figure of people placed on the LCP for what can only be described as “unethical and immoral”.

    Overview of my mothers case: placed on Sodium Pico-sulphate continuously pharmacology states not to be administered continuously over a long period of time as it causes dehydration and severe abdominal cramps, Fleet enemas were also administered. Mother’s new doctor placed mother on more hydration on the Thursday, but Sodium Pico-sulphate was still administered by nursing staff? On the following Monday mother was placed on Fentanyl patch, which is 100 times stronger than morphine and absolutely contra indicated for mother, it also states that it causes severe abdominal spasms as dehydrates people. When I stated to nursing staff that I did not want my mother placing on morphine they informed me that it was not morphine but conveniently omitted to inform me that it was 100 times stronger in its effects, hence it dangers with elderly people in causing death. All in all I requested that the Fentanyl should be stopped 3 times which was overridden by doctor, making such statements as “it was too early for the Fentanyl to have caused my mother’s new symptoms?”, even though pharmacology wise it is stated that this should be monitored for its dangerous adverse effects of death, and accompanying symptoms that my mother was experiencing.
    All hydration and PEG feed were withdrawn.
    This was followed at a later date by a statement from doctor after requesting that mother should be attended with, “the doctor would not attend or see mother as she was dying”.
    Mother died after 7 days of horrendous pain and suffering, with no doctor attending at all. LCP state that she should have been monitored by a doctor every 3 to 4 hours?
    At no time were we informed of this end of life decision in ending my mother’s life, I am still awaiting the end of life minutes meeting requested in finding out who signed my mother’s death warrant and with what authority as no family consent was ever given or sought and in fact was the exact opposite in being ignored. There is a lot more to this stories overview, of which pressure has and is being applied with various threats of legal action for speaking and writing the truth in exposing my mothers illegal euthanasia.

    • I am experiencing a similar thing myself after losing my partner of 32 years and father of my two children in June. He was diagnosed with metastatic renal cancer,advanced after arriving at A&E in May with neck pain from one of several lumps that had appeared on his turso- a complete shock to everyone.

      To cut a long story short,after experiencing daily lack of information and ONE meeting with his consultant in May, we decided that he should come home immediately with an emergency care package. On the day he should have been discharged I rang the hospital at 2pm to find out what time-to be told the care package wasnot in place and after assuring her it was(I had spoken to District Nurse and Mary Ann Evans hospice) she said she would check and ring me back.

      At 3:30pm there was still no call, so I rang again to be told that the delay was because they had changed all his meds! Not allowing her to skip over this I found that one of the drugs was Midazalam-when I questioned why she said it was because he was ‘agitated’ apparently this started at 11am. Anybody inform me-no! Another nurse suddenly came on the phone and asked if Icould get there straight away (Iam 1/2hr away from hospital) but also gave me the option for them to carry on and send him home in an ambulance but he wouldn’t make it – nice choice! He had sadly passed .away before we could get there. I subsequently found out that had hadbeen given Midazalam at 11:30, 1pm and put in a driver, oh and according to the consultant in his statement – 4:30pm-approx time of death.

      No-one at any time informed us of anything. The hospital has taken away the time we would have had with him and vice versa. I believe that his agitation was because he did not want any further invervention and had told them so and he just wanted to come home. I also believe he had been placed on the LCP as when I asked them to intravenously feed him a nurse gave me a point blank no.

      Iam currently investigating (closed ranks) all this before the Inquest hence my visit to this site

      • Hi Karen, I’m sorry about to hear about your loss and also sorry to inform you that you will not get any satisfaction at the inquest, as it is a closed ranks situation all round, do not waste money on QC’s / Solicitors, but there are other ways to address in Law such as Common Law etc.

        In response to Mr. Evans, I notice that you are still alive! As far as education goes when you have been on the “LCP pathway” personally and recovered from experiencing the symptomatology that people describe that their relatives have experienced then you can speak with some authority on the subject one such statement was made to mothers inquest “In my experience patients don’t feel anything” the equivalent to a psychics reading and in contradiction to World Health Authorities “experiences” of the drug Fentanyl. (Maxim in Law: Many men know many things, no one knows everything.) So whilst you and others maybe able to spell, if that is the best you can use as an argument in ridiculing people then it also highlights yours and others intelligence.

        Understand in Law ergo, “do you understand” means will you stand under me, and let me “take over control”, the person has entered into contract by standing under them. So no I don’t understand Mr. Evans, and if people actually understood what this meant they would as much as yourself “not stand under”. What I do know is that the NHS is a corporate body / organisation of secrecy (Maxim in Law: Suppression of the truth is equivalent to the expression of what is false.) who haven’t got the wherewithal to admit when they are wrong or do something about it, but continued with the LCP regardless (Maxim in Law: No prescription runs against a person unable to act.) which in theory encompasses incompetent people. (Maxim in Law: The government cannot confer a favour which occasions injury and loss to others.) But it seems medical personal think they are somehow exempt?

        As human beings and as a question which Law states that NHS employees can do as they please with patients and with what overriding authority? People no matter what their profession are not above the law. Does this sound like tyranny with a nurse saying “NO” emphatically, but with what authority or Act of Law did she state this? (Maxim in Law: The execution of law does no injury.) Actually if her actions were proven she would be wide open to legal processes inclusive of jail in becoming a sacrificial lamb excuse for the Corporation “we will learn from this”, the primary question being when? (Maxim in Law: What ever is done in excess is prohibited by law) I think “death” is an excess as its certainly not allowable in Common Law Mr. Evan.

        The irony is most Government Corporation / organisations have adopted the end word “Trust”, as people have trusted the supposed professionals in every walk of life only to find out that the these “Corporations” don’t give a damn they are driven by money, one example being paid for disposal of patients mostly of a certain age and in many or most cases “with no consent whatsoever” because someone has told these “medical personnel” that they are in charge and somehow saints with immunity? This is a very dangerous precedent, But, yet Maxims in law cannot be rebutted they “stand”, and ignorance of the Law is no excuse, and now you will start to comprehend why the LCP was abandoned, there is no Act or Statute of Law that can override Common Law Maxims.

        If medical personnel start to realise that they are not Gods in playing eeni meeni miini moh with human being “lists” and followed protocols instead of “I’m in charge, you have nothing to do with this decision” then there would not have been the outcry from so many people.

        Anything you can name as being authoritative in whatever form is a Corporation even the NHS; Parliament and the Police etc, etc. But they are subject to Common Law being the highest in Law and the sooner ordinary people / human beings realise this the better!
        They even try to deceive the public into thinking that they not Corporations by removing their Corporate titles / details from Companies House of their Corporations, which is essentially illegal.
        However, this “mindset whole” is supported by everybody’s birth certificate in being a slave to the Corporations once it is “applied for”, if disowned then non of the above will be possible period as you would not come under Corporate Law as “thing or person” in using their terminology.
        If you don’t believe me then that’s OK but you are in for a shock at some time in your life.

  14. In my previous post I should have added that my mothers dcotor provided a death certificate that was completely wrong in diagnosis and unsigned. That I requested a post mortem on the evening of her death at the Police station, the post mortem took place 10 days later, finding excess levels of Fenatnyl still present in my mother’s body. From what I have read ref. Fentanyl::.”Fentanyl depletes after 72 hours” so this was an obvious delibertae overdose and further begs the question of how much Fentanyl was my mother subjected to? Hence the term used in post “illegal Euthanasia” with no family involvement or consent whatsoever in forcing this dangerous medication on my incompetent mother when it is known World wide in causing death with the elderly.

    • Well Stated Ken.. Fentanyl (patch is extremely dangerous drug and was only meant for use in Cancer patients with chronic intractable pain. It is good medical practice in that sort of case to first try oral morh starting at 2.5 especially with the elderly and certainly not to use Fentanyl if you have kidney problems ..Most people would not know that 25mg Fentanyl is equivalent to 135mg Morphine slowly released through the skin and reaches its peak between 17-23hrs. As I already stated on here our Mother was given the patch place under her clothes and carried on the day as normal.. went to bed.. and woke with an overdose! I fully appreciate some comments on here.. thank you.
      Dr Granger states “I have argued for exactly what you want, more explanation, more conversation between doctors and patients, better understanding and better experiences” My point is “conversations” DO NOT happen and with the truth coming out through FOI .. Hospitals paid incentives to place patients on the LCP is abominable. Signatures please, then we will all be safe, no need discussion! As far as the GMC are concerned if a doctor abuses the LCP ..Dr Jane Barton at the Gosport War Memorial Hospital set the bench mark there so doctors have a free hand! You have no rights at your bedside in hospital if your in the hands of the wrong doctor. Please look at the case http://adc.bmj.com/content/90/8/822.full.pdf. Carole Glass went to prison in the fight to stop her son being place on the LCP after that she took her fight all the way to the ECHR. David is still alive and both are enjoying life! The only way until there are changes and laws in place of the way the LCP is administered is have a lawyers letter in place.

      • Thank you Ken and Floating Poppy and others. I do not have time to comment now in the way that I would like, although I still have a long reply in draft to Dr P W who made a number of false assumptions about a case I cited, though I was grateful to another doctor on this thread (whose user name I cannot currently recall) who suggested that I pursue a case, and I will.

        However, I am glad that the thread has flared into life again, and that it is obvious that it is no longer being controlled by a small group of pro LCP people in the way it was before. The monotonous and endless claims that deliberately leaving someone to die of dehydration and starvation is somehow ‘beautiful’ seem to have died away.

        Meantime, since I first contributed to this conversation I have had conversations with a friend who is still grieving over the death of her husband from cancer over two years ago. She now feels certain that he was placed on the LCP (She raised it, not me) although she had never heard of the term at the time. There was certainly no ‘conversation’ which ever took place with herself or any other member of her family in regard to this. Had a ‘conversation’ taken place I rather think she would have noticed it. She happens to be a recently retired teacher of Biology, and she had a pretty clear idea of what her husband was dying of and how he was dying. Except that one day, she says, the staff checked whether everyone who wanted to ‘see’ her husband had seen him and then all tubes were removed. He lingered another day or two and then died.

        It had had been planned to move him to a hospice. He was then too ill to move. She suspects that this was something of an inconvenience because the bed was expected to be vacant, and there is most definitely pressure on beds at this hospital in Birmingham. It has been in the local press recently. Dismiss the last bit as wild and unfair speculation if you will: The first bit: no ‘conversation’ except ‘Has everyone seen him who wants to?’ followed by removal of tubes, seems to speak for itself.
        On 23/03/2013 05:29, drkategranger wrote:

      • With respect to, “However, I am glad that the thread has flared into life again, and that it is obvious that it is no longer being controlled by a small group of pro LCP people in the way it was before. The monotonous and endless claims that deliberately leaving someone to die of dehydration and starvation is somehow ‘beautiful’ seem to have died away.”

        On a point of order, despite your silly imputation, It seems patent on its face that nobody is “controlling” the discussion here – unless you mean that without wearing a tinfoil hat that you would write differently – something you are better positioned to evaluate tan I..

        On a point of fact, nobody suggested that “leaving someone to die of dehydration and starvation is somehow ‘beautiful’” The beauty, wisdom and, I would add, nobility, displayed and applauded here, comes in the form, not of brutal verbal attacks on people with whom she disagrees, nor even illegitimate expressions of personal agony which might be more properly directed at an unfeeling, uncaring universe than at other readers here, but of a dignified open discussion introduced by a care provider who knows she will soon be dying, using her situation and her empathy to host a rational discussion of how people prefer to die, and what society and those professionals involved can do when dealing with cases with a poor prognosis: primarily for their patients, to whom their duty lies; somewhat for themselves, because we live in litigious times, when difficult choices are liable to second guessed by those without the training or experience to follow their reasoning; and possibly for the the bereaved-to-be and bereaved, who might not be patients, but who can nevertheless make patient’s deaths a living hell – not just for the patients, but also for their caregivers, irrespective of the approach taken by the caregivers.

        And a supposition, but one close enough to my heart to have caused me, and perhaps others, to have held my peace here, While proponents of the best possible care might appreciate the opportunity to discuss what that might be and how it can be improved, and can and have defended their recommendations, irrespective of whether the trigger was belief or the pain of loss, nobody sensible wants to get into a shouting match with delusional people arguing against the best care we know how to provide to imminently terminal patients, not so much because it won’t change their minds (although we can be fairly certain that it won’t), and cannot provide them with relief from their losses or possibly anger (and it can’t, acceptance has to come from within), nor even because it looks stupid (fighting with the mentally challenged always does), or because honesty could lead to potential legal nightmares (and I can imagine hypothetical situations where that could happen), or even because it is futile (which, if you possess a scintilla of honesty, you will have to acknowledge) but rather because the quick,recourse to rhetorical violence, as displayed, for example, in your post (but not exclusively), robs the forum of what the Romans would have referred to as gravitas and although we don’t have an exact English analogue for this Roman concept, perhaps gravitas, along with pietas, dignitas and virtus, are still worth striving for, and an all too strident modern world often misses them.

        And of course, others may simply have more valuable things to do with their all-too-short lives than waste precious moments bickering on the Internet.

        All of which may be sufficient reason why you are not opposed by those who do not characterise themselves as “anti-LCP” (to coin a phrase). In this case, silence is almost certainly nether assent nor agreement. Still, your blatant irrationality and obvious unhappiness doesn’t entitle you to crow victory unopposed.

      • My goodness. Someone is angry. I am going to try and answer this point by point, because I am not sure how else to do it. Your comments first and then mine. I tried using italics, but they have not survived. However, I have also left deliberate gaps between your points and my responses:

        On a point of order, despite your silly imputation, It seems patent on its face that nobody is “controlling” the discussion here – unless you mean that without wearing a tinfoil hat that you would write differently – something you are better positioned to evaluate tan I..

        No. I did not mean that at all. I left the discussion because I am dealing with a very difficult Estate and with my own grief plus that it was becoming painful to read the same claims over and over again.

        On a point of fact, nobody suggested that “leaving someone to die of dehydration and starvation is somehow ‘beautiful’” The beauty, wisdom and, I would add, nobility, displayed and applauded here, comes in the form, not of brutal verbal attacks on people with whom she disagrees, nor even illegitimate expressions of personal agony which might be more properly directed at an unfeeling, uncaring universe than at other readers here, but of a dignified open discussion introduced by a care provider who knows she will soon be dying, using her situation and her empathy to host a rational discussion of how people prefer to die, and what society and those professionals involved can do when dealing with cases with a poor prognosis: primarily for their patients, to whom their duty lies; somewhat for themselves, because we live in litigious times, when difficult choices are liable to second guessed by those without the training or experience to follow their reasoning; and possibly for the the bereaved-to-be and bereaved, who might not be patients, but who can nevertheless make patient’s deaths a living hell – not just for the patients, but also for their caregivers, irrespective of the approach taken by the caregivers.

        The word ‘beautiful’ was being used constantly by people commenting in favour of the LCP. You seem to assume that I was attacking the writer of the original post. Actually, as I initially tried to indicate, I am concerned about her because although she is a doctor I am not sure that she yet fully realises what could happen to her. I am not aware that I made a ‘brutal verbal attack’ on anyone – or that I called anyone ‘silly’ actually, but I was upset by the tenor of many of the comments in favour, and the tendency to sweep aside people who were describing what had actually happened to their loved ones placed on this system. Are you going to describe anyone in this situation, who has witnessed a distressing LCP death as ‘second guessing’ and claim that only you know what it is actually like? How arrogant.

        And a supposition, but one close enough to my heart to have caused me, and perhaps others, to have held my peace here, While proponents of the best possible care might appreciate the opportunity to discuss what that might be and how it can be improved, and can and have defended their recommendations, irrespective of whether the trigger was belief or the pain of loss, nobody sensible wants to get into a shouting match with delusional people arguing against the best care we know how to provide to imminently terminal patients, not so much because it won’t change their minds (although we can be fairly certain that it won’t), and cannot provide them with relief from their losses or possibly anger (and it can’t, acceptance has to come from within), nor even because it looks stupid (fighting with the mentally challenged always does), or because honesty could lead to potential legal nightmares (and I can imagine hypothetical situations where that could happen), or even because it is futile (which, if you possess a scintilla of honesty, you will have to acknowledge) but rather because the quick,recourse to rhetorical violence, as displayed, for example, in your post (but not exclusively), robs the forum of what the Romans would have referred to as gravitas and although we don’t have an exact English analogue for this Roman concept, perhaps gravitas, along with pietas, dignitas and virtus, are still worth striving for, and an all too strident modern world often misses them.

        I have re-read my last post in some surprise and I am not quite sure what you consider constitutes ‘rhetorical violence’ from me, although calling me ‘delusional’ and ‘mentally challenged’ feels pretty violent to me. As to the ‘[…] all too strident modern world […] it is THIS world that seems to want to force an unnatural end upon some people – I note that you completely ignore my point that a friend was not consulted about the manner in which her husband appeared to die. Behind all of this though is a greater pain. My father, who was a geriatrician. He fought a lot of his life for respect for the elderly. (At some point, somewhere I want to put up an article he wrote for the Nursing Times in 1978, which I found recently – since last contributing to this debate – at his home, and cried when I read it. He himself cared passionately and wrote and collected on euthanasia, to which he was bitterly opposed. At the end (last October) I don’t think he was put on the LCP but, after all his own campaigning I think he was neglected and this is partly what I was originally trying to warn about. From what I have seen (three cases of people I was close to since November 2011) the dying are often simply neglected and it seems to me that fear of a cruelly prolonged survival is quite simply often the wrong focus.

        And of course, others may simply have more valuable things to do with their all-too-short lives than waste precious moments bickering on the Internet.

        Yes, which is also why I left this argument for a long time.

        All of which may be sufficient reason why you are not opposed by those who do not characterise themselves as “anti-LCP” (to coin a phrase). In this case, silence is almost certainly nether assent nor agreement. Still, your blatant irrationality and obvious unhappiness doesn’t entitle you to crow victory unopposed.

        I have not tried to ‘crow’ anything ‘unopposed’. I am unhappy because of what has happened to me, and to others. There is no ‘victory’ there for any of us. I am however a little perplexed as to why you want to hit me with such a heavy verbal cudgel for being unhappy about things that have happened. You have not changed my mind about anything but instead encountering your judgmental anger and your complete dismissal – it feels like a blanking out – of my main point in my last contribution, which was that someone I knew had good reason to believe their husband was put on LCP without discussion, you have left me with an even greater fear of professionals (I take it that is what you are) like you. I hope neither I, nor anyone else I care for, ever meets you in real life.

      • As the next of kin for some 60 years I think that I do qualify far better than Hermit or ANY doctor on my mother and how she was “dispatched” and her suffering for over seven days, quote in using a “living hell” Euthanasia. If the arrogance displayed on this web site was more sympathetic in explaining and also far quicker than the prolonged suffering in being Euthanised in this way then it may have been a different outcome for all concerned. Such is our society that we can Euthanise an animal and humans in Switzerland almost within minutes not days of prolonged suffering with what would be taken as being the “norm” of consent with family being involved or even the courtesy of being asked as the absolute very minimum for an opinion on their loved one. It seems that some people talk about dying as if it is unusual to die in life’s cycle, perhaps Hermit could direct me to someone who has and is still living, or as is it a “fact” that we all die at some point in time, so predicting everyone’s death is not some sort or type of magical vision.
        This panacea that is “pedalled” in that we all would live but for a doctors prognosis of your “going to die”, the actual questions being when, where and how? We then have the prognosis of “terminally ill”, as others who have slipped the LCP net many of whom have continued to live with decent qualities of life and not just for a few days. So the all pervading diagnosis / prognosis of you are going to die (eventually) cannot be denied. We then have doctors stating “in my experience” these people of course are not human but Gods as they have the LCP “experienced training” or ESP in knowing what has been experienced in dying via a “living hell” and coming back from the dead to comment on their “experiences” or used a crystal ball, perhaps if these LCP proponents produced an affidavit from the Euthanised person it would be more credible than their knowing and in their “experience”.
        The questions still remain of who is terminally ill and when do these doctors decide without in many instances consultation with “family” is it because it challenges their God like status and what can only be seen as a money saving and making exercise in many instances.
        Moving forward in time from the Romans we then had the Nazis who also decided without consultation who died and who did not, dependent on their usefulness and age, these incredulous inhuman acts were not believed by many and to a certain extent are still not in Euthanising these unfortunate people for being born Jewish, in theory the LCP uses as the Nazis did “doctors” to determine who was fit for purpose and who is / was not. if people had not openly stated what was happening where would we be today? But then these people wasted their time in exposing the truth and their experiences the only difference is that they did not have the internet to expose what was happening and “their experiences” of which as with the LCP many did somehow survive.
        The denial debacle is well known by the public of “health professionals” three brass monkeys syndrome, which is slowly being exposed but we live in an open society? If the truth is denied then litigation can only be expected in seeking the truth or the situation will continue by virtue of silence. Quote “is almost certainly nether assent nor agreement. Still, your blatant irrationality and obvious unhappiness doesn’t entitle you to crow victory unopposed”, not does it apply to the LCP processing of un-consenting adults without ANY consultation whatsoever like an abattoir. Dr. Granger by her own admittance is terminally ill and has surpassed the expected / predicted length of time for her terminal illness (and genuinely / sincerely, long may she do so), but why has she not been placed on the LCP process having passed her prognosis date of death? Further more she had the chance to consider by what process she would want to meet her end or has a stranger decided for her without consulting her or if unconscious consulted her family (yes we know the answer¬).
        However, many people have not been afforded this “luxury” of deciding prior or with consultation either with the person or the persons family as doctors know better if they do know better why do so many people die (statistics available on these infallible doctors “mistakes”), and thank God there are doctors who acknowledge this and try to be open in what is morally correct and giving choices, not just you have no rights with shades of the Nazi regime mentality, this is commonly known as democracy and human rights, but they don’t apply to the LCP? Of which their “mistakes” are documented with far more than just a few and Hospitals being paid for implementing the deaths by Euthanasia, there is very little difference between the Nazis collecting the Jewish people’s belongings before Euthanising them, but it’s not for the money that these Hospitals received “payments”, your quote “pietas, dignitas and virtus” I think not. If you do not like the truth and have been “watching” the debate why have you wasted your time on the internet in trying to belittle / demonise others for telling their truthful story in being treated as if they or family have no rights whatsoever, not a Walter Mitty cobbled together non experienced story of arrogance in supposedly esoterically knowing or intimating that these people are delusional and that doctors know better, when history and present day paid for un-consented Euthanasia states differently in using nothing better than paid “death squads”, why were the Hospitals paid Hermit? Thank God that there are doctors who will and have whistle blown as unlike yourself they realise that they are human beings and are not infallible and in realising that a precedent was being set with factual not rumoured death lists by “doctors”. Historically this again sounds like the Romans and Nazi regimes death lists but its OK if you use an ill conceived irrational delusional mentality with no consent whatsoever of madness, if it is not madness then how and why is this OK and implemented in the first place?
        I wonder if these same doctors had lived in another country where intellectuals such as doctors were Euthanised (not that long ago in history) would have the same “sentiments” or would they protest at the inhumanity of being the “chosen ones”? Doctors are NOT Gods they are entitled to their opinions just as ANY other person is entitled to their opinions supported by their experiences and close family relationships, your argument is that doctors “know better” even though they are not “family”, but instantly know what the person being placed on the LCP knows, feels and experiences, sounds like Blackpool beach booth mystics. So it may or may not come as a surprise Hermit that statistics deny this very fact with many thousands of iatrogenically caused damage and deaths caused by doctors in “knowing better”, let alone deliberate Euthanasia such as the LCP process. Why are people now wearing wrist bands in other European countries as well as England stating No Euthanasia, if every one as you would have them believe is in favour of being Euthanised or reliant on a doctors prognosis? You as with anyone else are entitled to your opinions, but not entitled to pretend knowing what others have truthfully experienced, as a final prediction Hermit you WILL die and for that matter so will I, so sooner rather than later let’s join the LCP process together, call it a holiday and get it over! As seemingly you do not you support the human rights entitlement of a “Right to Life” unless its on your “grounds”?
        Litigation is inevitable when no consent whatsoever is given, this is classed as manslaughter, murder or assisted suicide all of which in theory should be prosecuted as per statutes of the Law and which is supported by the GMC and Government, because it denies human rights etc, Hermit, it does not support the LCP’s process of paying people to Euthanise with no consent whatsoever, so don’t try to blame people or their experiences as being at fault, the blame lies fairly and squarely on the doctors and LCP who were actually paid for the above. If the person Euthanised agreed and signed or the same applied with next of kin then there is no argument in my opinion, but this has not been the case in many, many instances with procedural protocols being abused as well as next of kin, because doctors know better?.

      • Let me see if I follow you correctly.
        First you create a strawman (Euthenasia remains illegal in Britain, so whatever is being discussed here is not Euthenasia)
        Then you contradict yourself (f people recover, then whatever they are having done to them, it can’t be Euthenasia)
        Then you appear to call those with whom you disagree Nazis. invoking Godwin’s law (http://en.wikipedia.org/wiki/Godwin%27s_law)
        Great fallacies there. And you have the temerity to refer to others as being “irrational”?

      • This is your opinion of creating a straw man not mine or others, deliberately taking someone’s life without any consent whatsoever is at the very least Euthanasia and as I pointed this out first and foremost is illegal, but thank you for your confirmation. As with all walks of life there are good and bad people, but it seems that the exception to the rule in your opinion are doctors who as stated before some of whom have blatantly abused the procedural protocols, systems and next of kin because they think can with impunity, just remind me what the Hippocratic Oath taken by doctors is, and just as reminder supporting the Oath a direct quote from the: “The “British Medical Association 9th September 2012 …….
        The British Medical Association debated and resoundingly rejected a change to the law and reaffirmed the position of doctors across the UK – that it is never right for a doctor to actively kill a patient, however sick or disabled – and they have done this for a number of reasons.
        Doctors train to make people better, not kill. They are wary that under challenge, should a case to sue a doctor come to court, the law may not fully protect them. Each case would be fraught with subjective argument. Doctors simply do not want politicians to put them in a position of professional vulnerability and you would be hard pushed to find a doctor, unless his name was Harold Shipman, happy to administer a lethal cocktail, read more ….. .http://www.dailymail.co.uk/news/article-2200464/Anna-Soubry-Our-new-Health-Minister-care-sick-encourage-end-lives.html
        If this is not the case then why all the hullabaloo about litigation if there is nothing to be answered in Law? Lawyers would not even consider a case period. So maybe they also agree that the cases taken forward by them were un-consented deliberate Euthanasia at the very least, or using your semantics are you saying something different about these Lawyers integrity? I didn’t know you were administrator of this discussion, it seems speaking / writing the truth of actual factual events and experiences are not what suits your opinions which is your prerogative.
        The people who primarily recovered from the “LCP pathway” because the “medication” was stopped before reaching the critical point of no return for whatever reasons by family or doctors recognising it was wrong, which in fact actually shows that the LCP “End of Life Pathway” was not a correct “diagnosis” in trying to end their life in the first instance, of which there are many newspaper accounts of which you can research. if people get paid for terminating human life without any consent whatsoever what and who would you have me associate them with as there are many analogies that would be just as appropriate? However, in my opinion Saints and Saviours do not qualify in quoting the GMC newspaper article “to actively kill a patient, however sick or disabled”.
        Yes I have temerity its also termed freedom of speech in telling the truth, but not as half as much temerity as the people who carry out God like “un-consented” terminations of life, quote: “Assisted dying has been debated and rejected by Parliament multiple times and that only around one in five people die in their own home.”
        You will note the term “assisted” implying consent of some form, which was not afforded to many placed on the End of Life, sorry it was then changed to a “Care Pathway” in using semantics that were not as abrasive but just as devastating in terminating unfortunate peoples lives and their families in knowing that no consent whatsoever had been given to doctors or discourse with the doctors concerned, so assisted as a term cannot be used, again there are many newspaper articles exposing peoples termination of life without any consent or discourse whatsoever.
        There are no great fallacies only factual truths and experiences which you seem either in denial of or trying to use some form of censorship Hermit? I also appreciate that Dr, Granger has had the integrity in following procedural protocols and her openness in starting this discussion in explaining why and also reading others reasons as to why the End of Life / LCP should not have been invoked on people and the aftermath left from the families’ experiences.
        I will be leaving the discussions as there is no sense in trying to debate that only doctors should be heard in deciding who lives and who dies, the exact opposite to the GMC statement and survivors of the LCP experience. As a final point, why would the GMC and Government make such public statements if all doctors had uprightness not needing any discourse?
        As to following me correctly I leave this to your considerations.

      • Don’t you think it tragic that, perhaps due to adherence to historic myths, with no particular significance to the bulk of people living there today, the UK still does not permit humans the relief of euthanasia that no civilised person would deny to any other suffering animal? Do you not consider it sad that your primitive mindset , which, until recently, saw many people who unsuccessfully attempted suicide being executed for their supposed “crime”, continues to disallow people the right to determine for themselves when they wish to die, or to determine the conditions under which they prefer not to live, and provide protection for those assisting them to achieve this painlessly and with certainly.
        At least the law now permits people to determine the point at which they do not wish to have their suffering extended through futile efforts to sustain a life unable to provide the quality or dignity sought, and to provide sanctuary to healthcare providers who alleviate discomfort and distress that might otherwise accompany the patients decline and death, even if the methodology chosen has the potential to hasten death.
        The current situation remains far from ideal, and the law definitely remains far behind what most people would recognize as fair, but the situation is vastly better than it used to be and will undoubtedly improve further over time.

        While there may be occasions when, through error or even intent, people suffer bad effects from more enlightened approaches to pain management and the clinical handling of dying and death, there are appropriate civil and criminal processes to deal with that. The point of protocols like the LCP is to ensure that well intentioned care providers, seeking to provide the best possible care, including the prevention of discomfort and distress in the dying or those caring for them, should not be subjected to the horror, or even the threat, of civil or criminal sanctions for doing what their calling and empathy demands, what most normal people would expect, and which the vast majority of the rational, non-sadist population would not dream of denying to even a mouse.

        Which part of this don’t you understand?

    • Ken Andrews, thank you for your reply, although, and I don’t mean this unkindly, it is largely incoherent, at least to me, which makes it difficult to answer satisfactorily. I realise that this may be due to a failing in my ability to grasp the points you make.
      I appreciate you have difficulty accepting the premise upon which an integrated end of life care pathway is based and your experience certainly seems far removed from that of my wife and me.
      I am sorry for your distress and anguish but please don’t let it colour your attitude to those whose experience has been far different.
      My wife was cared for in a hospice for whose guidance the LCP was first introduced.
      Unlike you, my wife and I were kept fully informed and involved in the decision making regarding her care from start to end. In fact, I made no decisions at all and neither did the doctors and nursing staff, my wife was in control right up to the time she slipped into unconsciousness shortly before passing on.
      I understand that the application of the LCP has been prescriptive and inappropriate in some hospitals rather than being used for what it is, a set of guidelines to help palliative care teams to offer the right choices but then the LCP was never originally devised for use in a hospital setting.
      I could never describe my wife’s death as a pleasant death but I know with certainty that it was a less unpleasant death than it would have been without the AWICP (The Wales equivalent of the LCP). She died peacefully in her sleep without the extreme pain and discomfort that she would have suffered had she not elected to enter a hospice and had she not eventually asked to be placed on the AWICP. She never again felt the pain and discomfort she had suffered while being nursed at home.
      Perhaps my wife was fortunate in entering an establishment that used and continues to use the AWICP in exactly the way it should be used. There, I never met a single relative or patient with any complaint at all about its use.
      Please also be aware that I have grieved for my wife every single day since since she passed. I miss her so, so much, so I know some of what you feel, what you are suffering.
      I hope, and I pray too, that you will eventually come to terms with the loss of your mother, sincerely.

  15. Ken
    First of all I am sorry for you recent loss. You raised some issues that need explanation and the answers below are intended to help you achieve better understanding and hopefully ease some of the anguish, as you clearly feel there has been some wrong doing.

    In response to your last point fentanyl is renally (kidney) excreted, the clearance rate of which corresponds to the 72 hours you have read. After someone’s death the drug can no longer be excreted, hence concentrations will remain at the level they were at the time of death. There is no natural degeneration as you imply so simply finding high levels of opiates 10 days later does not mean that extremely high levels were present at the time of death. Furthermore, there are no published and legally binding upper limits for the doses of opiates (morphine, fentanyl etc) because patients develop tolerances when they have been taking them for some time. A 72mcg fentanyl patch may render you or I unconscious and stop us breathing, whereas a little old lady with terminal cancer who has been on them for months may tolerate the dose well. Hopefully you can see that opiate dosing is not straight forward and little can be inferred from simple doses at a point in time.

    The real question is what they were prescribed for and if a patient was in pain then they were likely prescribed correctly. The prescription often has to be balanced between the experience of side effects, such as constipation (see my response to someone else above). The contra-indication you have read regarding abdominal spasms is a relative, not absolute, contraindication because opiates slow bowel transit, causing constiptation which can make abdominal spasms worse. However, the only alternative option is to stop opiate pain relief, which often leaves the patient in a worse situation with insufficient pain control. Hence a fine line is often trodden between manipulating analgesia and managing bowel transit with laxatives. As such it is not unreasonable to keep someone on laxatives (like picolax) long term to alleviate the side effects of opiate pain relief that a patient cannot do without. You are correct that if you or I took regular laxatives we could risk dehydration from excessive bowel water loss. Someone who is constipated from high does opiates does not have the same problem as their bowel transit is so slow the large bowel extracts the water from the bowel contents (which is it’s function). In the context of high does opiates laxatives to soften the stool and stimulate the bowel to keep moving are essential if constipation and the abdominal spasms you describe are to be minimised. The fact that you have not had this explained to you and your fears answered is probably the major failing by the medical team, rather than the prescribing.

    Your second point about family not giving consent for treatment, highlights one of the major flaws in the Daily Mail reporting, which at best is just extremely poorly researched and at worst is sensationalising emotional subjects to sell papers. The law dictates that family do not have the right to give consent/refuse treatment on behalf of a sick relative, unless thay have a legally binding advance directive that states they can. Most people do not. Good medical practice states that all end of life decisions should be discussed with relatives so that a patient’s wishes should be understood. Note that the emphasis is still on the patient’s wishes. Finally relatives wishes are taken into consideration. However, when a patient cannot answer for themselves the final treatment decision lies with the doctor as they are legally required to act in the patient’s best wishes, taking a balance between patient/family wishes and the often conflicting reality of medical factors and a poor prognosis. Family/patient consent is a point of law, not a point of medicine and the Daily Mail is still reporting this as evidence of malpractice, which it is not.

    Finally, in response to your story from Blackpool. There will always be people who survive the LCP because it is allowing nature to take it’s course and people sometimes pull through. Fluids are only witheld if a patient is unable to swallow them, either due to weakness of swallowing muscles or due to being unconscious without sedation. I read the article you describe and the patient had deteriorated to such an extent that she was so weak she risked choking when fed. The family persisted despite advice and she recovered, but please consider the implications of what they were doing and asking the medical team to condone. By feeding a choking risk patient it is highly that she would have aspirated and died of a pneumonia. If the medical team had approved oral fluids on someone they knew was a swallowing risk and that patient died of aspiration, then they and the hospital would have been liable for malpractice. The patient was originally admitted for a failing heart valve causing fluid accumulation. Consequentially IV fluids would exacerbate the problem very quickly and would also be problematic. When the patient deteriorated to the point of being unable to drink it is unsuprising the medical team felt her prognosis was very poor, given the clinical picture.

    However, this is an interesting story which shows where improvements can be made. Whenever possible medical teams should avoid conflict between families and themselves. In the above instance both family and medics were operating according to best interests, however they were approaching them from opposing subjective view points. Where patients have reservations about witholding fluids due to aspiration risk it is possible with medical team agreement to accept a ‘feed at risk’ plan. However, it should be noted that this specifically concerns where patients can express wishes, not relatives, for the legal reasons about consent above. In similar situations to the Blackpool story I have allowed relatives to give patients sips of water to alleviate the discomfort of thirst on the understanding that there is an increasing risk an aspiration pneumonia if larger volumes than a sip are given. By doing so potentially I am leaving myself open to litigation if a pneumonia develops and through their grief relatives decide they want to blame me for it.

    Legal problems abound in end of life care and the media publicity has misquoted almost all of the main issues. I offer my best wishes to you and hope you can reach some understanding of what has happened and achieve some resolution. Through your meetings with the hospital I urge you to remind yourself to ask why things were done as they were and what complicating factors were involved, rather than focussing on what happened when and where. There may well have been errors as we are all human beings but nothing will take them back and understanding the context in which actions were taken or ommited will better help you achieve resolution. Lawyers unfortunately focus on the minutia and lack clinical context. If you google LCP now the border adverts are all for solicitors pushing people towards legal action. However, within their emotive advert text even they are careful to highlight that the main sticking point is that decisions regarding LCP should have been discussed (not agreed) with relatives, thereby shying away from getting involved in evaluating clinical decisions. Your concerns are almost entirely based on understanding clinical decision making and the answers to these lie within discussions with the hospital. What you decide to do afterwards in terms of litigation is up to you.

    • Odd comment: ‘Family/patient consent is a point of law, not a point of medicine and the Daily Mail is still reporting this as evidence of malpractice, which it is not.’
      Please read GMC guidance on this…do anything without patient consent unless its to preserve life and you’re up the swannee as a practitioner Dr PW!

      • The thing that makes me seethe about the LCP version 11 is that it clearly was contrary to law..but the only people who are liable to get prosecuted are front line staff who used it! Its like all the upstairs people have covered themselves, and left the untrained nurses to stand in the firing line for it.
        When it was used on my late husband..we were told it would stop him breathing, and the staff at the hospices said if they put it in quickly, it would work faster. He was allowed to go when HE’D had enough …though of course I suppose legally you have to say its given for ‘pain relief’ or ‘symptom control’.otherwise you get in trouble with the law.

        Don’t you think calling it ‘consensual euthenasia’ would stop all these abuses in care homes (which I think are darned disgraceful personally).? Theres a huge difference between GENUINELY being at the end of life, fighting for breath, and just being considered old and inconvenient and having a bout of pneumonia ….the first is a medical act with consent, but the latter is just diabolically evil!

      • you left out ‘advance directives’ that refuse ‘palliative care or off license doses of opiates, opiods or sedatives in combinations likely to suppress respiration’….which some Advance Directives have had in them since 2007. You can refuse the LCP in advance…even verbally, and a doctor has to respect that or …well,they’re in a bit of trouble. Isn’t that right ? Your post gives the impression you can’t opt out of these pathways, or these drugs??

      • ..I dont mean to rant, its just an interesting thread…… the consent issue is terribly important…it was not included in v.11 of the LCP at all – v.11 gave the impression you could do what you want if the patient was unconcious (but not if that state was induced medicinally obviously)…..v.11 goal 4 was ‘does the patient and their relatives speak English? It didnt tell the nurses what to do if the patient couldnt, and you cant understand what’s being said in a foreign language! And all those deaf patients too! Consent is now goal 1 in v.12.

        BTW if you have private chemo in London..you get offered the E word now…..which I much prefer. You should do a survey or something of hospice workers and ask if Eu was legalised, would they be willing to work in the clinics? I think that would be interesting for a blog topic….most of the people who like the LCP seem to work in cancercare, most of those who dont like it seem to work in other specialties….I wonder if there’s a difference in whether these different groups of nurses/doctors would actually work in an Eu clinic?
        And paramedics too…no one in the media has asked them for an opinion on AMBER care pathways….or how many of them would be willing to work in the Eu ambulances they have in Belgium or Holland now……no one’s touched on those in the media…

        sorry to rant…..)

      • I think this has been slightly taken out of context and misunderstood. The quote above concerns patient consent. Within the LCP and in virtually all of the publicised cases the circumstances concern situations where patients cannot give consent, and the doctors are forced to act in best interests. Nobody has suggested acting without consent on adults with capacity. Your suggestion that we (or I at least) are breaking the law acting without consent clearly reinforces the fact that reporting on this matter has muddied the water about where the patient’s, the family’s and the doctor’s legal rights and duties lie when dealing with a dying adult who lacks capacity.

        As explained in detail above: Families and friends often believe that they have a legal right to refuse/demand treatment on behalf of patients who are unable to give their own consent, which unless they have power of attourney over medical matters they do not. The daily mail reported situations where familes did not give consent before starting the LCP as malpractice, omitting the fact that legally they do not have the right to consent/refuse. In spite of this right to act only according to best interests, very often we do exactly as the family wish, as they are our best means of finding out what a patient’s wishes would be. However, when doing this we are still legally acting under powers given to us to act in a patient’s best interests and not according to any legally binding consent given by family, because according to the law they cannot.

        By emphasizing this point I am only trying to put to bed the suggestion put forward by some reporters that we are acting illegally.

        The main issue to me is that end of life decisions are not discussed with family at all (rare) or that (sadly frequently) insufficient time is dedicated to understand the relative’s concerns or basic understanding of the gravity of the situation. However, these discussions all take time and EOL decisions sometimes have to be made and communicated in less than ideal circumstances. eg. during an acute admission by a busy oncall team. Understandably this impacts on how this information is received, but does not neccessarily mean that they are making wrong decisions.

        Please read the 2 posts by Malcolm Evans above to understand how EOL discussions in 2 different circumstances can result in 2 very different patient experiences. The second follow up post illustrates the LCP done properly, but clearly demanded a lot of doctor:patient/family discussions to reach a common understanding and appreciation of priorities.

        Rather than villifying doctors in often ill reported stories, I wish the media would spend their time exploring why some EOL decisions end badly and fighting for more hospital staff. They could start by calling for an end to austerity measures within the NHS, which will only serve to further reduce skeleton crew staffing levels, increase work pressures and reduce the time doctors/nurse have to spend with each individual patient/family. The British Medical Association is currently collecting evidence of how austerity measures are potentially impacting patient care and have a reporting service on their website for staff to report any consequences of reduced funding.

      • In response to some of your other points:
        ‘Advance directives’ – agreed, they offer someone the opportunity to consent/refuse any treatment at a time when they have capacity, in preparation for when they may lack it. It was not a deliberate omission and there was no intention to imply people cannot opt out of any treatment, LCP or otherwise. If one exists people will always be treated according to the wishes in the directive, assuming it is correctly witnessed etc. However, very few people have written one. I’ve only seen one. My fear is that people will write a directive refusing the LCP based on misinformation. Thankfully there are posts on this blog which provide positive experiences to balance out the overwhelmingly negative statements offered elsewhere.

        ‘Old and inconvenient’ – I’ve never seen anyone put on the LCP for a pneumonia or anything else without the team having first tried to treat the patient. If I am perfectly honest I can imagine situations where an elderly person with multiple comorbidities arrives on deaths door and is put directly onto the LCP becuse the oncall consultant decides that they are very unlikley to survive (eg. the next point down). But all this comes down to is how people feel about doctors acting according to their judgement. Nobody criticises a doctor’s apparently good judgement when they correctly call a diagnosis and make a positive change. Why would the same doctor suddenly be judged to have acted cruelly, or in self interest (ref: ‘inconvenient’) by saying enough is enough, I think we should just let Mrs X/Mr Y go? In virtually every situation, the patient will be given an opportunity to improve, even if the family are of the opinion that their elderly relative with dementia/heart failure etc should be left to let nature take its course. Again, nobody reports when doctors continue to actively treat patients when family feel they should be left to die, yet it happens all the time because of the principle of acting in best interests.

        ‘most advocates of LCP work in cancer care, most critics work in other specialities’ – I work in acute care and have friends in all specialities. I havent personally met anyone who feels the LCP is wrong. The LCP critic neurology consultant on the Disptches documentary was bascially arguing against consultants having the freedom to use their own judgement. He found his patient on the LCP that another consultant felt was near death. He managed to treat this man who survived for a further 15 or 18 months, during which he and the family enjoyed some good (but some difficult) times. Had he lived 15 months in increasing agony or falling dignity maybe they would have felt differently? The point for debate is whether oncall teams who don’t know the paitent should have the right to make these decisions? However, irrespective of whether they are the best or worst placed person to decide, often they are forced to decide by circumstances, so should not be prevented from doing so. Critics of LCP will cite examples such as above where people who potentially could be treated are not. Defendants will reason that why should patients admitted under new medical teams be denied access to the LCP and symptom relief it offers if someone is truly on deaths door? Again, it comes down to how much people trust the doctors to make the right judgement call? By whipping up an ill informed frenzy the media has probably eroded people’s faith in this decision making, which will do far more damage in the long run than any ‘death pathway’.

        ‘private chemo’ if this is true it is euthanasia and irrespective of how some (doctors and public) may feel it is acceptable it is illegal in the UK. No discussion. In reference to your other euthanasia comments, despite Terry Pratchett’s public debate euthanasia seems to be off the agenda.

        ‘sorry about the rant’ Join the club. I have ranted for pages and pages so far, because i also find it interesting.

        Regards
        P

      • Again a reply[not a rant ] –
        The GMC advice regarding ‘best interests’ was issued to prevent doctors being sued for trying to PRESERVE life (it was issued after a dr. gave a blood transfusion to a lady who turned out to be a Jehova’s Witness, and sued).- it wasnt issued to enable medical practitioners to render an adult with capacity unconcious with a sedative,and then implement the LCP, but that’s how its been used in some of the cases behind these headlines.
        By implementing the LCP v.11, you are in law committing an act and not an omission….you are implicitly deciding as a practitioner, that it was in the patient’s ‘best interests’ to have a cardiac defibrillator disconnected..that’s an act (not an omission)…in a care home, its inconceivable that could ever done in the ‘best interests’ of the patient ie to keep them alive.
        Ditto, the decision to take someone off an appropriate antibiotic and replace it with morphine or diamorphine. By failing to distinguish between the vastly different underlying causes of ‘breathlessness’ and treating them all with ‘Diamorphine’….which was used in v.11 [and replaced by Morphine in v. 12] by using the LCP, you are saying that as a practitioner, you believe treating a chest infection with morphine stands a better chance of keeping them alive than antibiotics. Or treating them with morphine stands a better chance of keeping them alive than fitting a defibrillator. As a practitioner, by implementing the LCP, you are effectively saying you feel withdrawing an inhaler/oxygen and replacing it with a drug that (perversely) has ‘breathlessness’ as a common side effect was more likely to ‘preserve their life’. The GMC doesn’t actually allow you to decide its in a patients ‘best interests’ to die, unless the patient has said so in advance. So you can’t use the ‘best interests’ rule to support you. You could try ‘futile care’ or ‘excessively burdensome’ I suppose.

        You seem to think that relatives don’t have any powers without a WRITTEN document…they can be appointed verbally at bedside where they’re asking to preserve life I think…

      • Anna
        ‘render an adult with capacity unconcious with a sedative,and then implement the LCP, but that’s how its been used in some of the cases behind these headlines’
        This (if true) is MISuse of the LCP, not correct use. See Malcolm Evans’ among others experience for correct use. If this is true then it is malpractice and the family should refer it to the GMC. Given the public nature of these reports anyone found guilty of malpractice, masquerading itself as correct use of the LCP, would have been front page news and it hasn’t. Maybe over the next few years prosecutions will surface but I suspect only half stories are printed without clinical context. I am not advocating misusing LCP, nor denying that situations may have occurred. I am supporting it’s existance because used properly it can help provide as symptom free a death as possible when the time comes. This misreporting has been commented on by the BMJ editor see:

        http://www.nhs.uk/news/2012/11November/Pages/What-is-the-Liverpool-Care-Pathway.aspx

        ‘acts and omissions’
        There seems to a difference between our understanding of the purpose of the care pathway, although this may be because of the difficulties of succinctly expressing ourselves over the internet. It is started when other treatment has failed and a patient has deteriorated and further treatment is deemed inappropriate. This last element is what acting in best interests is all about and refers to best interests when the medical team feel someone is dying. The examples you gave: replacing inhalers with diamorphine, stopping defibrillators or IV antibiotics are clearly acts which IF active treatment were still being persued would be regarded as doing the patient harm, as you correctly point out. The point is that the LCP is not the final stage of multiple different treatment regimes with a view to cure on the pathway. The LCP therefore is not illegal in acting to do patients harm by removing their inhalers/defib (in the context of someone who is dying). It is acting pragmatically by removing unneccessary medical intervention (IV antibiotics and the cannula/blood tests these involve/inhalers) and instead focussing on symptom control. Essentially what your examples illustrate is an ideology to preserve life whatever the cost and I think this is where we are at odds with regards to best interests. The LCP is for after the point where preservation of life is the aim. Presumably you can see a situation where a person would refuse any further treatment offered as it is not worth the cost in terms of associated morbidity or otherwise (right to die)? When patients have been in a hospice or had significant palliative input the balance of when this tipping point in management aims is reached is dictated by patient wishes, advance directives etc. Again ref: Malcolm Evans above. With someone admitted with a pneumonia this is likely not the case and best interests have to be used. Best interests of someone who is dying of pneumonia AND has proved unresponsive to treatment may well be to stop the morbidity associated with treatment (needles, face masks, oxygen blowing in your face drying your eyes and mouth or a defib which in your dying moments gives you a big zap) and ensure that only those interventions which make someone comfortable remain.

        ‘The GMC doesn’t actually allow you to decide its in a patients ‘best interests’ to die’
        correct. It demands we treat people as clinically indicated without prejudice. But once a patient IS dying and cannot answer for themselves the GMC allows us to decide (if there’s no directive) what is in their best interests to ensure a comfortable death, as explained above. Your own words suggest we can defend our position on the LCP the grounds of futility. Futility of continued treatment (because it has all failed to date) is the reason for stopping active treatment. After this decision has been made is when the LCP becomes activated. Under no circumstances would I hope people would look at an old person with pneumonia and refuse to treat at all and place them immediately on the LCP on the grounds of futility. However, I am sure there are anecdotal reports of this happening, and cannot approve of its use this way. What should be understood is that this (alleged) misuse is not a problem of the LCP, it is a problem of the medical practitioners using it to provide excellent symptom cover when they (allegedly) inappropriately refused the patient treatment first. Hopefully you see the distinction.

        ‘written powers’

        http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_making_decisions_patient_lacks_capacity.asp

        The long and short is that without capacity we have to act on behalf of the patient and relatives cannot consent on their behalf without a written directive saying they can. Indeed why do we need power of attorney or advance directives if relatives can consent to treatment on a patient’s behalf anyway? Irrespective, in the vast majority of cases (as the GMC guidance states we should) family wishes are respected and strongly influence decision making.

        ‘one size fits all’
        Agree its not ideal. LCP was designed for cancer patients and has evolved. It is enormously difficult to standardise care and what is agreed by all is that noone should die without pain relief, nausea relief, agitation relief etc. The LCP provides a frame work where anyone can care for a patient who is felt to be dying and have the ability to give a patient what they need. While ideally every care plan should be tailored to a patient variations in practice without standardisation may mean some patients could receive sub optimal care, which the LCP aims to avoid.

        regards
        P

      • Agree people get biased views depending on where they work, and where they’ve seen the LCP used.
        However, consent and the right to life are universal in setting, ditto the right to respect for family life.
        Which is why it was so silly to invent a care pathway that was ‘one size fits all circumstances’.

        And re advance decisions- the ones the government are distributing on their associated charity websites sort of trick people into consenting to being Eud, which I find unacceptable. Theres a tick box for ‘I consent to pain relief even if this may hasten my death’…its really badly worded. Like you can’t give pain relief without risking killing them…thats asking to be abused too!

      • Anna
        I disagree it is being tricked into euthanasia. It is called informed consent. High levels of diamorphine/morphine may cause respiratory depression and cause someone’s death. High levels of these drugs may be required to control the pain eg. associated with cancer in people’s bones or invading nerves. Patient’s have to know this to properly consent to being given high levels of pain relief. It does not mean that the hospital is given a carte blanche to hasten your death by drugging you with opiates. Look up doctrine of double intent and understand it allows a doctor (and by consequence the patient) the freedom to give (patient to receive) vast quantities of analgesia if a patient needs (and wants) it without risk of prosecution if this results in respiratory depression and death before the underlying disease process. I think this is what you keep referring to as Eud. It is a very fine line that palliative teams sometimes have to tread. Hopefully you would not want the palliative team who cared for your husband in his last days in the hospice to be halued off to court for their actions. If this did happen you would not find anyone willing to provide that level of pain relief. Hence, the tick box reasonsing you describe.
        regards

      • you said ” Look up doctrine of double intent and understand it allows a doctor (and by consequence the patient) the freedom to give (patient to receive) vast quantities of analgesia if a patient needs (and wants) it without risk of prosecution if this results in respiratory depression and death before the underlying disease process.”

        It doesn’t exempt them from prosecution I’m afraid. You’re confusing a legal right with a possible legal defence. The doctrine of double effect is not a law (or even a professional duty); it just gives medical practitioners a possible defence against a manslaughter charge, but that’s all.. If someone has gone into a hospice, the law might assume they’d accepted they were at the end of their life, but in most of the cases in the newspapers, they’ve gone into hospital expecting to be treated for e.g. pneumonia, if there is a sudden change in their care plan without asking them, you’re packing your own parachute. If you’re treating someone in A&E with morphine for (say ) a broken leg, you’d be taking ABGs , monitoring their heart and giving them oxygen if you were administering midazolam + morphine. Administer them without doing this, and it could be a case of what I think the GMC call ‘reckless prescribing’

      • You are now arguing for arguments sake and I am not sure what point you are trying to make. I was simply explaining that an issue you felt was encourgaing patients to be compliant with backdoor euthanasia was not and why it was not. It explained the ethical framework about a subject you highlighted but clearly do not understand if you still believe giving analgesia to patients dying in agony is euthanasia and that doctors should be prosecuted. I have listened to all of your concerns with genuine interest but it seems to be descending into axe grinding and all of your latter points have been covered amply elsewhere. If you want to reach a greater understanding by all means respond. If you are still convinced hospitals murder patients go to the police and let them deal with it.
        regards

      • Anna, you need to read Dr PW’s response again.
        “However, WHEN A PATIENT CANNOT ANSWER FOR THEMSELVES…”, (i.e. when they are not able to give consent)…”the final treatment decision lies with the doctor as they are LEGALLY required to act in the patient’s best wishes, taking a balance between patient/family wishes and the often conflicting reality of medical factors and a poor prognosis.”

      • get your facts in order anna, its not the daily mail doing things wrong its the whistleblowers writing to the press telling them the truth, such as professor pullichno, professor glazier who is a cancer specialist, don’t blame the press its the Liverpool uncaring pathway that’s at fault, why do you think they have scrapped it. wake up and speak the truth.

    • Dr, You definitely need to get educated on the LPC IN the world of the Patient/relative and NOT the doctor. Looking forward to your response to this families experiences! And the 100 + that I net work with the vulnerable who don’t understand medicine or the internet.. why don’t you start agreeing with the fact everyone deserves the right to know when they are dying and campaign for signatures or do you love POWER??

      • Poppy
        Read my posts and think for a second. I have argued for exactly what you want, more explanation, more conversation between doctors and patients, better understanding and better experiences. My support for LCP does not mean that everyone who comes into the hospital should be immediately put on it. I am in favour of LCP because it is a tool whose sole function is to permit as comfortable a death as possible when (not before) the time comes.

        POWER??! Don’t be ridiculous.

      • I think the poster means only the patients should say ‘when’..which is where I’m at too….doctors should just assume its never unless the patient has agreed to go into a hospice to be Eud….

      • Anna
        I see what you mean. To be honest I hadn’t really appreciated that people felt that doctors were determining when people die. From my perspective it is not doctors but fate that determines when people stop responding to treatment. I will continue as long as possible to treat all potential casues and investigate further if need be but at some point you reach the point that there is nothing else that can be done. That it not a doctor determining when a person dies, it is simply part of the job to make that judgement call if need be. Judgements may differ between doctors and there will be stories like the neurology consultant critic of LCP. Likewise family wishes may disagree with medical teams and treatment may continue a while on their wishes, or sometimes treatment continues without family agreement on the insistance of the medics. However, i disagree with the idea that the medical profession expressly robs people of the right to decide when to die because I do not believe that opportunity exists for most people in the first instance.

        Thinking logically what caring relative would when presented with the fact that no treatment was working for their loved one and given the option to continue or stop would say stop? To do that in many people’s eyes would be to stop fighting for their relative, even if the ongoing treatment/investigation was causing the patient discomfort. I know this to be the case from many DNAR discussions with families. Yes the doctors have to make judgement calls that people may disagree with. But in doing so there is also an argument that they are in an objective and informed position and free the family from having to make that uncomfortable decision themselves and forever more wish they had fought further, even in the face of reason and common sense.

        If anyone disagrees with the medical team all they have to do is speak to them and understand what is going on. In the vast majority of cases doctors will try to do the best by everyone. Why wouldn’t they?

      • Too true. They hide behind the well used phrase ‘acting in the patient’s best interests’ …but can’t be bothered to contact the family in as much haste.

    • No PW…I’m genuinely not axe grinding at all…and certainly not just ‘arguing for arguments sake’….as I said , I support the LCP when the patient gives their consent, and understands the drugs used….. The ‘ethical framework’ you cited might have shaped the law, but they are not the law itself – drs and nurses arent taken to a court of ‘ethics’,they’re taken to a court of law…..Double effect is a possible defense when accused of ‘hastening someone’s death’ – : in the past, someone might have been able to say ‘my intention was only to relieve pain’.. but now , these drugs arent recommended for pain relief…they’re recommended for ‘anxiety’ and ‘breathlessness’. In a court, ,they’d have to say ‘I only gave these drugs to alleviate breathlessness’…to which a lawyer might say….’well , why did you remove their oxygen beforehand, and discontinue ABG monitoring their CO2 levels before you gave two drugs that the BNF warns suppress respiration’? And as for anxiety, they’d say ‘why didnt you just hold their hand?’ You cant really say ‘I deactivated their cardiac defibrillator in case it hurt them’…when they’ve presumably not been distressed by the pain of it for years since having it fitted.
      Its not ‘axe grinding ‘ – I just worry that nurses stand on very shaky ground without those consent forms (and of course, a test of competency to give consent) …..

      • I find perceptions here seem to be linked to the personal resources of respective respondents. It would seem that the lower those resources of an individual are the more likely they are to allow emotion rather than fact to colour their view in a falsely negative way.
        My dear wife died last Thursday. She died pain free in peace and comfort and right up until Wednesday she dictated her own treatment including refusing nutrition for over 6 weeks and eventually asking to be put on the end of life integrated care pathway. For two or three days she was demonstrating ataxic respiration and I knew she close to the end. Opioids and midazolam could have been withheld but I have no doubt that had they been so, her dying would have been painful and distressful.

  16. the liverpool so called care pathway has so much contraversy it has had that much contraversy lately it should be exterminated like they did akin to this treatment in hitlers 2nd world war, and i dont forget the starvation and ill treatment in the death camps, its too much of a twin the l c p it has to be stopped for mankinds sake. its a very evil way to treat the ill of this country.

    • Hiya they murdered my mum aged 59 last june i have since set up a face book page liverpool care or death pathway …. There are hundreds of us who have had a lived one murdered this way … We cant all be wrong ..one is a mistake hundreds us mass murder

      • hi malc, which hospital do you work at its not caterham dene by any chance you sound more like an illiterate scumbag person yourself with loads of seasoning christmas.

      • Malcolm, were have you been getting your exorbitant words from out of a dictionary, by gum chum I think its you whos illiterate, what do you do at the hospital take the drinks trolly round.

    • Thanks Malcom I was reading down and was about to say the same thing when I got to your comment. Watchman seems just a little unhinged!

      • hi peetre, you seem like two of a kind you and malc I cant spell his name its difficult, if I was unhinged id be a joiner im not im a brickie, and too old to have the wool pulled over my eyes.and the l c p is now scrapped so why are you wasting your time supporting it its gone exterminated.

  17. Conversations DONOT happen so while i agree to a pain free death signatures please to acknowledge that the patient/family understands that they are now on the terminal pathway…
    Why will the DoH and some doctors not agree to this.. they get away with murder because they can.. by just saying “we told you”!
    My wonderful Mother was put on the pathway … not dying, no pain, no cancer! not even had a Paracetamol is that not the start of the LCP small doses of pain relief!

    Our Mother was sitting with an external doctor in the lounge area (respite care) recovering from kidney infection… chatting to the doctor stated, she was Happy waiting for her daughter, stated tablets made her mouth sore… 15 mins later she was administered a Fentayl Patch 25mg.. place under her clothes… My brother visited in the evening and no one said nothing!
    In the morning she woke dress herself and suddenly the 25mg fentayl (135mg Morphine) kicked in. What did they do? They injected her with 50mg of Chlorpromazine/ 50mins later they inserted a syringe driver in her back 40mgdiamorphine/40mg midazolam.. then walked her until collapsed in an arm chair and then put her to bed… NOT one member of the family called until after she was comatose!

    Without signatures on the LCP Psychopaths hide our health service and the Myth that people are killed off being elderly/bed blockers will be squashed.. Doctors cannot play GOD!

    Hoe do you move on from this Dr Kate Granger?

    Gosport War Memorial Hospital Scandal to come out!

    • to floating poppy, what you have gone through with your mother was very bad and I feel really sorry for you I lost my wife in the circumstances, they stopped feeding her and no water to drink, she was eating and drinking when she went in hospital they soon put paid to that they put a syringe driver in her pumping morphine, midazolam and others , it was as though they had to kill her quickly, when I found out it was the Liverpool pathway I took her off it but It was to late the damage had been done, it should have read starved to death on her death certificate, I have since found out they get paid to put them on the pathway, I believe thousands have been murdered on this l c p its a crying shame.

  18. my late wife was put on the Liverpool Pathway weren’t told there were any plans to put her on this as she had been admitted to hospital with an enlarged liver and suspected abdominal mass.The original outset was that she had been diagnosed with breast cancer in May 2012 (invasive ductal carcinoma),surgery was then planned for July as the cancer had gone to the lymph nodes,once the bone and CT scans were done (they came back clear). She then had the lump removed from her right breast and (lymph nodes) As this is a public blog i should state but didn’t ask at time ( the cancer my late wife had was capable of going to other parts of the body)
    now lets say upon removal of the lump how fast would it spread referring to the mass and her being put on the pathway.Which in my view the use of the Liverpool Pathway was too late

    Why well with in 3 months (my late wife who sadly passed away on the 19th Feb of this year) was admitted to hospital twice each time it was the cancer slowly killing her,no one likes to see their loved one suffering but if one was moving towards end of life how come she gets asked where she wanted to be towards the end and then after that her whole body shuts down and no one including me is able to find out what has been put in place.I have heard that the Liverpool Pathway has suffered some form of controversy and just hope nothing sinister comes up my way in the way that my late wife spent her remaining days.She was also on morphine but other than that there was no other form of pain management in place ( my late wife had a learning disability)

    When was i told she was on the pathway it was i think a few days or after she had another CT scan which revealed the suspected mass she had gone in with on the 10th Feb 2013 were actually several tiny masses in her liver,they had her pains down as gastro,so what with the scan stating the cancer had gone to the liver and that they couldn’t operate.By then being told it was secondary she would get moved onto the pathway and the prognosis would be days weeks or months,eventually she did die but from advanced metastasis breast cancer.

  19. No care no dignity ….. Lcp …….research yourself what the medication they are giving your loved one causes in side effects…. Morphine …. Midazolam……via syringe driver along with dehydration…….=hastened death …. Also include cash insentives for targets on how many patients are put on the pathway . Wilfull neglect = murder …. The agitation and breathing difficulties is brought on by lack of fluids and the inculsion of the above drugs . Stop this barbaric torture now …. This has nothing to do with care it is all about
    Money saving and cash incentives to commit murder . Months if not years before your time

    • Not all patients suffer side effects and many of the symptoms can be controlled by other medication. Where the side effects can’t be controlled, the offending medication is withdrawn and alternatives sought.

      As for characterising the additional finance necessary to provide end of life palliative care as “financial incentives” to put patients on an end of life care as if the hospital is rewarded for putting patients on such a pathway is at best based on ignorance and at worst a scurrilous misrepresentation of fact.
      End of life palliative care requires resources additional those provided for normal care, a fact that has been acknowledged by past governments and the NHS and is catered for by making available those extra resources on a case by case basis.

      The same thing is true of critical care but you wouldn’t say that hospitals are encouraged to unnecessarily admit patients to intensive therapy units by providing financial incentives, that somehow, a hospital would turn a net profit..

      The extra resources are accessed on a case by case basis and is largely an accountancy exercise with the extra costs of care being written off for each patient rather than them coming out of the hospital budget, no money changing hands.
      I have not met a doctor yet who would prognosticate on survival time in quite the exact way that has been suggested by many here. They base their decisions not only on the technical clinical picture presented but on what it suggests from their past experience. They are sometimes wrong, even drastically wrong but for the most part are vindicated.
      My own dear departed wife confounded the expectations of nurses and doctors (and my own) to live another 6 weeks after they had expected her to pass on. Her case was just atypical and there will always be those who will surprise in this way.
      In the same hospice a lady was admitted for end of life care suffering with widely disseminated breast Ca metastases, on continuous pain relief, continuous low flow O2 and too frail to walk. She was at the hospice when my wife was admitted and although never having had chemotherapy or radiotherapy, walked out in full remission after 6 months, three weeks after my wife passed away. She had at one stage been on the AWCP but was withdrawn from it when staff realised she was improving.

    • cara, you speak the truth not like some scumbags on here who support this wicked euthanasia back door pathway most of these on this site work in the hospitals everything you have quoted is correct, that’s why people like you have helped to get it scrapped, but still have to keep a close eye on what they come up with well done cara.

      • Watchman,
        All I can say is that you must be suffering tremendous emotional and psychological turmoil to abuse people of different opinion in the extreme way that you do.
        If such is the case, I hope you will find some release from it soon.

  20. Pingback: “Everything has to come to an end, sometime.” | sarahlswart

  21. Well, all the nay sayers have got their way, the LCP is to be outlawed. Instead of addressing the problems of misunderstanding and poor communication and training, a compassionate process of management of end of life care is to be thrown away.
    The ignorance of poorly educated and emotionally incontinent individuals who have absolutely no insight into what an end of life care pathway is, those who haven’t the necessary capacity of critical thinking to understand the meaning of compassion, have won the day.
    I don’t in the least hope that any of you will suffer painful ends full of indignity, emotional anguish and distress but if you do you’ll only have yourselves and others like you to blame.

  22. Bizarre.

    All that the LCP ever did was to provide guidance in delivering palliative care, to manage communication effectively and to protect medical staff who applied it from accusations that the exercise of their best professional judgement to apply a recognised “best practice” to mitigate distress potentially caused ealier termination than allowing nature to take its painful course. “Banning” the LCP sends the unambiguous message that medical staff should regard life, no matter how painful, distressing or demeaning, as being worth more than any amount of patient dignity, that efforts to manage the process of communicating with terminal patients and their families, and to establish effective palliative care regimes are regarded as being against the public interest. Perhaps worst of all, it sends the unambiguous message that, people, seemingly divorced (no matter how well meaning) from patients and apparently largely ignorant of mediine, can, post hoc, somehow make better decisions about end of life medical care than trained health providers, while reopening the door to random legal and financial threats to staff attempting to treat terminal patients with compassion.

    As all of us will die, many in hospitals, this is an incredibly foolish message, the consequences of which will impact on a very large number of people. While medical staff dealing with terminal patients in the UK have my deep sympathy, I am more delighted than ever that I do not live there.

  23. Just read a thoughtful review by Kathleen E. Sleeman, Clinical Lecturer in Palliative Medicine and Emily Collis, Consultant in Palliative Medicine, ‘The Liverpool Care Pathway: A Cautionary Tale’ BMJ 2013;347:f4779. This short article assesses the recent review on the LCP led by Julia Neuberger carried out for the Minister of State for Care Support: ‘More Care: Less Pathway’.. The main finding seems to be that whilst the plan may work in hospices it is poorly carried out in many hospitals. On the one hand there are far too many troubling reports from the bereaved on the way it has been administered.and on the other there is simply not enough proper evidence based research to show how effective it is.

    “Without independent prospective evidence from controlled trials, the LCP became unusable. This should serve to warn us of the dangers of the national implementation of tools that are not properly evidence based. […] dying can be a complex process, and requires individual treatment decisions, with skilled staff, frequent senior review, and a supportive environment. By reducing end of life care to a series of prompts, did the LCP over-simplify the care of dying patients? Did the pathway’s paperwork become a substitute for thought and care? Certainly, it seems possible in some cases’

    This, to me,, at least seems the beginning of something more than some bereaved relatives telling what seem to be very disturbing stories whilst other people vigorously dismiss them and tell them that they are talking nonsense because in the case of their relative, or in their hospital (if they are a medic) nothing of the sort has happened or can happen, and if it is not happening in their experience then it is not happening anywhere. (I am not suggesting that everyone who has defended LCP has said this but I think I have picked up this tone sometimes) I am still not convinced that the LCP approach is the right one for anyone, but at least it does sound as though this might be the beginning of a less dogmatic and more considered approach.

    .

  24. Those who have been following this discussion may find an article from across the Atlantic worth reading.

    “Doctors’ Secret for How to Die Right”
    Why do physicians make different end-of-life choices than the rest of us?

    http://www.alternet.org/personal-health/doctors-secret-how-die-right?paging=off&current_page=1

    I think that more visibility for articles like this might help laypersons to internalize why a peaceful death might be seen as preferable to an heroic, but usually futile effort to prolong life just because it might be possible, irrespective of cost.

    • Without Prejudice.
      Referencing a book by someone who is still living, well at least they were when the book was written, and as a critique I have yet to see an affidavit from a dead person in support of this theoretical rhetoric “Doctors’ Secret for How to Die Right” with a title that sounds like a gladiators preferred reading book before entering a Roman Amphitheatre of the Gods not that one human being has taken sovereign rights over another human beings sovereign rights, unless the person is unable to speak for themselves then the “God like authority” claims these rights as a complete stranger over immediate family? I think its called slavery, I was also under the impression that everyone is born the same, a human being, but apparently I’m wrong.
      As in many instances the sovereign human being can speak but is ignored because some God doctor that knows “the secret of how to die right” has decided for them without any consent whatsoever because they wear a doctor’s uniform; hold a gun; threaten violence; or have other badges of authority. If death is so great why not find out for yourself the book seems to have you convinced.
      But do not speak for others who have died and their families experiences, if you think you are “qualified” then please inform us with what authority you proclaim apparently with others knowing these secrets? As the title is plural it seems that many “doctors” have risen from death or have mediumship or psychic capabilities, as objectively this is the only way that they would know this secret knowledge at the moment of death.

      Or is it that you read a book and that doctors know best, my layman’s understanding of facts is that secrets are not secrets if written about in the public domain, unless as a diversionary tactical excuse to cover something up, like killing people with no consent whatsoever, which you are trying to make out that doctors did have consent somehow morally via this secret knowledge, when factually many did not have any consent whatsoever and did not even consider that they needed to ask for any consent.
      Authorities Brain Washing / Propaganda for Depopulation …………..
      Most people, given the choice between doing what they know is right and doing what they know is wrong when ordered to do so by a perceived “authority,” will do the latter. Nothing demonstrates this more dearly than the results of the psychology experiments done by Dr. Stanley Milgram in the 1960s.

      To a certain degree, this is the result of simple self-preservation: a person may avoid getting involved simply because he fears for his own safety. But the Milgram experiments showed quite clearly that even without any underlying threat to themselves, most people feel irresistibly compelled to obey “authority” even when they know that what they are being told to do is wrong and harmful to others. And if they find it difficult to disobey a perceived “authority,” they will find it even more difficult, if not impossible, to bring themselves to intervene when an “authority” is exerting it’s will on someone else.

      By carefully constructing a situation that captures the essence of obedience-that is, a situation in which a person gives himself over to authority and no longer views him- self as the efficient cause of his own actions.
      ______
      On March 30, 1990, The Washington Post reported Prince Philip as making the following statement: “We are constantly being reminded of the plight of the poor, the hungry, the homeless and the diseased. What does not make the headlines is that even if the proportion of those unfortunate people remains the same in relation to the total population, their number is bound to increase as the size of the population as a whole increases… The best hope of limiting the increase in the number of such people would be if the world population could be stabilized.”
      _______
      “Rapid population growth is a major environmental problem of world dimensions. World population increased from three to four billion in the last 15 years, substantially cancelling out expansion in world food production and economic growth of the same period.
      “Without controlling the growth of population, the prospects for enough food, shelter, and other basic needs for all the world’s people are dim. Where existence is already poor and precarious, efforts to obtain the necessities of life often degrade the environment for generations to come.
      “It is, of course, up to each nation to determine its own policies, but we are prepared to respond promptly and fully to all requests for assistance in population and health care programs. At my direction, the Department of State and the Agency for International Development stand ready to cooperate through international organizations, through private voluntary organizations, or through direct contacts with other governments.” Jimmy Carter Message to Congress 1997
      _________
      ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬Now looking across the Atlantic as you suggested and only being a layperson we find plans for future depopulation or in layman’s terms killing people ……………..
      There is a veritable multitude of references throughout history, with ref. to the millions upon millions of people that have been “depopulated” or in layman’s terms killed who cannot speak or they would have, which sort of puts claims of knowing about death in a book of secrets as propaganda via “authority” or in following the American equivalent UN Agenda 21 – Fema Camps 2013 – Depopulation Plans In America (YouTube http://www.youtube.com/watch?v=991xB5MRJoA ) with similarities in Australia under the guise of “green and environmental”. Maybe if you believe “them” the chemtrails (see chemtrails Magellan’s YouTube) are also for the benefit of mankind. In case you haven’t noticed, a known fact is that history repeats itself, hence all the references throughout history in many other countries historically who using the “soft term” depopulated people.
      Maybe now you have some perspective of the LCP; doctors death lists (sound familiar) etc, etc, the hidden agendas in England having nothing to do with “care”. However, bringing you back to the debate was the LCP requested or with consent by the person themselves or immediate family? By virtue of the very large numbers of complaints and protests from relatives this was and has not been the case, of which it seems you are trying to smoke screen with a book of “doctor secrets”. Perhaps you would name the law or statute of law that gives the authority of consent over others ref. life or death?
      Depopulation; Money; Greed and in some cases medical personnel who were nothing better than hired hit men / women being paid as an incentive for killing someone, but they had the “authority” being medical personnel (ref. Milgram experiments), yet the questions have still not been answered with whose authority and what laws? Nor the question of why many survived long after their predicted death via the LCP when taken off the known drugs that cause death, maybe when people are born we could introduce a sell by date stamp / tattoo to further justify killing them? Is this far fetched or reality?
      Lets go for factual reality that’s nearly there, every persons birth certificate has a number that is actually valued as “stock” on the stock market and the “value” can be found using their birth certificate number. (See Jordan Maxwell and many others YouTube)
      Objectively ask yourself how many LCP practitioners have been prosecuted, as to how many whistleblowers have been persecuted for telling the truth, far, far more than prosecuted if in fact any? Large payouts; different job titles; pat on the back; keep silent we will look after you, why because it would expose the people / powers who actually “authorised” and supported the illegal Euthanasia’s giving their “permission” which was and is illegal in law and why it was stopped in theory. But doctors / medical personnel have unwittingly become the preconditioned mindset scapegoats.
      It is a dangerous precedent to decide who lives and who dies solely by a medical practitioners hand / prescription, “first do no harm”. A prophecy that death is inevitable, for everyone, well I never, its got to be worth a Noble prize, but not a very valid excuse.
      Causing early death without any consent whatsoever should not even be considered in a civilised society just because someone that is a stranger and not immediate family says so, no matter what their qualifications are or what they read or believe, as an absolute minimum its “common decency to ask”, as well as common law not to kill someone, or to harass with arrogance and bombastically ordering people to obey with what they say, as if they were inconsequential in trying to portray and imitate their Godlike authorised status.
      If people realised they could take legal action and it was taken I would bet money these Gods would disappear after the first case, why because it would affect them, and strangely these doctors would be offended etc? (ref. Milgram experiments)
      Sooner or later this will happen and quoting a book of doctor’s secrets as any sort of defence would be thrown out of court. What about the Egyptian “book of the dead”, at least it sounds a little more credible for propaganda purposes, but not for any possible court proceedings.
      I would also add that some doctors do have integrity and uphold their oath, but that does not excuse those that do not and lead people to believe that they are infallible predictive Gods and what they say is law or written in law over life or death.
      In a true democratic society no one you can name has any sovereign rights over any other human being, even if they are just a layperson, except their self, unless a witnessed consent or a signed contract has been given by the person. The only other way is by force and intimidation etc. Opinions are and can be anyone’s, as long as they do no harm.
      “A thing is not necessarily true because a man dies for it.”
      ― Oscar Wilde
      For further factual references, look at the maxims in law ref. consent and contract.

      • Intelligent people tend to debate or write about the facts. They don’t sit around and call each other names. That’s what you can find in an infants playground. Please leave comments when you become mature enough to leave the infants playground.

  25. I’m sorry, if I offended you. I commented on a fact and that fact is that your piece is really difficult to follow and that frustrates me because I really would like to understand what points you are making and whether they are at all relevant to the debate.
    Perhaps the failing is mine, as I have already suggested may be the case in another reply.

  26. There are multiple cures for cancer that the media suppresses because cancer is worth billions to the government every year. The completely natural cures work better than chemo and have no side affects. The world needs to know about these cures!! The soursop fruit cures cancer. cannabis oil cures cancer. Urine therapy cures cancer. There is evidence that sodium bicarbonate cures cancer. PLEASE EVERYBODY, LOOK INTO THIS!!!

    • There is a reason why medical staff relating to subjects pursuing “alternative” “cancer treatments” in preference to validated medical treatment usually refer to these desperate people as the deceased.

  27. Dear Kate Granger,
    Thank you so much for this article it has explained so much and now I understand the steps taken with my father who recently died. It has put me totally at peace about the manner of his death. Thank you for taking the time and trouble for this blog. It would be good if the GSF could be discussed and understood by everyone while they are still mentally capable to take this information in, as it is so useful. The GSF is what triggered all the amazing and wonderful help and care we all received as well as our Dad.

    On another note, I haven’t read all the comments here but note that some offer cancer cures.

    There is a medic whose patient got well from terminal cancer due to putting them on a detox programme using a water that has been purified (not distilled this is poisonous) and natural foods (not from supermarkets and no additives or pesticides), home-made bone broths and chicken soup.
    Another person I know (about 77 years old) who was diagnosed with terminal cancer and given 6 months to live, lived for another 7 years due she would say entirely to God and His will for her. Ie she agreed to pray for healing if her healing would be a witness to others about God.

    Therefore shouldn’t we all be more positive? Shouldn’t we all eat the natural produce provided for us in the first place before man corrupted what was natural and made it unnatural?

    I do wish you well with prayers and hope for the best life you can muster with the time you are given.
    God bless you.

  28. This has just happened to my Nan. She has vascular dementia which they only just discovered, considering she’s had dementia for years.
    She had a. If episode 4 weeks ago, which she was admitted into hospital. Kicking, fighting and screaming. She slowly stopped having meds, food, and water.
    On a day a he had a small amount of food and drink, she was awake. Talking to us.
    But again she stopped. The doctors kept putting it down to her dementia that she didn’t want food or water. Yet Monday and Tuesday I went and saw her, she said yes to water. I told the doctor this, he looked shocked.
    I kept asking for a week why is she not on fluids. But no one would tell us. Only untill I asked the doctor on Tuesday and he said that they cannot keep putting her on a drip. Well no, she can’t take it orally as her mouth has gotten that dry and sore to touch. So give it to her on a drip and we will kelp trying to give it to her as she was going home Wednesday.
    In the end he wound me up so I ignored him and focused on my Nan.
    She’s asking for fluids but they were not giving her it.
    Her body was starved. Your organs need water to operate, the body can go without food and meds, but not water. Her organs had nothing so they have up.
    We was told Tuesday night that she had days, weeks, then not even 7 hours later, 2am Wednesday my mum phoned to say she was gone.
    Now if she had been given fluids she may have been able to go home, comfortable, my dad and auntie would of been able to say bye. But.instead the doctors did nothing for her :'( put it down to her dementia. It doesn’t kill you, the dementia its self, it’s the effects it has. I will fight for my Nan as it is wrong. Everyone deserves a chance! And we didn’t get a say in my nans life!.

    • So sad to hear about this. It reflects part of my own experience, with my parents. Of course there are good and caring hospital staff. It is also my experience that there are many who do not listen to relatives, thinking they know best. Yet, when an elderly person can no longer speak for themselves it is often the relatives (or friends) who know the person best, and who love them, who know about recent events and are alive to small signs. The elderly person badly needs these people to act as their voice, explaining what is and is NOT normal for that person, what is likely to upset them, what they do and do not like etc, even what they are allergic to (I was ignored on an instance of this, until too late) and relatives will often pick up something actually happening in the hospital too. That ‘But she DID drink, just now’! can be ignored or shrugged off by staff.

      I think far too many hospital staff are suspicious of relatives, seeing them as in the way, and a nuisance when they should be seen as a valuable support, and source of information. I think this often poorly disguised hatred of a patient’s visitors is particularly endemic in this country. Some other countries manage this much better.

    • Charlotte,
      I want to say I can understand your horror and outrage at what they did to your nan, as a similar thing happened to my father-in-law in May this year. In his case he had dementia and then had a stroke so of course he was in a bad way. But instead of treating him the doctors decided to starve him to death. I suppose they hoped it would be quick but it took over 60 days – they starved him for 60 days in full knowledge of the CQC to whom I complained.
      The doctors know that what they are doing is wrong – is it even legal?- and they try to confuse or bully you if you complain – this is what happened to you too I see.
      Can I suggest that you channel your anger into fighting against The Assisted Dying bill by writing to your MP? This bill would give them legitimate power over life and death and then we will all die an unnatural and untimely death unless we are hit by a heart attack beforehand.
      Don’t blame yourself, as you did fight – in our case the old man’s blood relatives were happy to see him off as they wanted his money.

  29. My wife has a chronic but stable illness and lives at home. She was ‘phoned by her GP to say that she was on a Government list of people who were to be asked if they wanted to be resucitated if she collapsed at home. She said yes.
    Which Government dept. is issuing these instructions?
    On whose authority?
    How do names get on the list?
    What gives the Government the right to intervene in a doctor/ patient relationship?

    • I am sorry to hear that Graham. I agree that this is frightening. Unfortunately the myth ‘they keep you alive when you want to go’ is huge in this country and many people are frightened. I can well imagine a lot of people in your wife’s position being bounced into saying that they did not wish to be resuscitated partly through the fear this myth generates and partly out of a kind of embarrassment: such a phone call really puts people on the spot and could also make them feel they were being selfish in asking to take up expensive facilities and time if they say yes. And if course people will be even more vulnerable if they are phoned on a bad day, when they are feeling ill or down.

      We all know what this is really about, and it is not compassion. It is The Exchequer. I am resisting the temptation to go into a full-blown political rant about where the cuts could be made. (Let’s just say war comes into it.) However, sometimes I feel we are getting closer to that film Logan’s Run every day.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s